A poem just wrote itself. Fell from my head to the page, line by line. It shows why I am currently looking at alternative medical thoroughfares. More on that anon. Meanwhile, here is what my brain just spewed. I’m off to put the kettle on so I can recuperate in my inbuilt Brit way whilst looking out at the back garden. xx
There is no light, no hope
No help. No Way.
My body doesn’t function properly
It’s invented it’s own erroneous ways of being.
It makes the wrong calls. Over and over.
Adds new nonsense to the way it reacts
To activity, both physically and cognitively.
My dysfunctional neurology is the commander of a team of systems that follow its every word
Pain is incessant. Screaming, slicing, throbbing. Relentless
An array of functional oddities barrage me all day
Immune system freaks out at the existence of mundane things
Nervous system spins and twists, making me drop, making my brain and body shut down
In July many pandemic restrictions were lifted here in England (Northern Ireland, Scotland and Wales are still keeping various protections in place for now1). People are mixing more and they are doing so without taking as many (or in some cases any) precautions to protect others from the virus because 65%2,3 of the entire UK population have received 2 doses of SARS-CoV-2 vaccines. Much of the general population feel that all that can be done has been done and beyond that they weigh up being stuck with protection measures against living more ‘normal’ lives again and decide that they are prepared to take that risk and hope for the best. This is their choice for their bodies. The problematic part is when we vulnerable patients are expected to be at the same amount of risk and therefore to make the same choice. Vulnerable patients are at much greater risk. So although our friends and families are expecting to be able to see us again we’re having to shield even more than before because when the general population started mixing more our chance of being exposed to the virus increased dramatically. Yet often when we say we still can’t mix without lots of precautions it’s met with surprise or confusion. It’s hard for us to explain the complexities of our conditions and why we’re so different from the general population. I hope to help a little with that…
Asa case example, here is why I can’t risk catching SARS-CoV-2…. 1. My immune system is compromised so the vaccine doesn’t protect me as much. It will offer me some protection against hospitalisation and death but not as much as it would if my immune system was fully functional. (The UK government website generalises so this patient subgroup is not mentioned regarding the different risk4, but it is established that a natural deterioration of immune system effectiveness (immunosenesence) occurs with age and that the more the system is compromised the less effective vaccines are as a result5,6,7,8. Those with a compromised immune system experience this whatever age they are with the added complications of system dysfunctions and multiple condition impacts). 2. As my immune system is compromised – a lower viral load (smaller amount of virus) presents just as much risk to me as a high load. So situations that are generally seen as ‘less risky’ to others are still high risk to me. 3. My immune system is dysfunctional because a part of my brain is dysfunctional. My neurological condition is the reason why my immune responses are so, um, well, ridiculous quite frankly. 4. I have chronic systemic and brain inflammation. Covid can cause an inflammatory cytokine ‘storm’21 which, when added to pre-existing inflammation, can prove to be fatal. This is another factor that increases my risk of death from Covid. 5. My nervous system is a quick-learning so-and-so. If a new physiological behaviour shows up, my nervous system learns it within 1-2 weeks. The learned new default is the new way of working. It does not go away. My body learns it and goes “this it how it is now” and it does it frustratingly fast so I don’t have much time to try and avoid the permanent impacts (and there is little that can be done about physiological behaviours that happen automatically). My doctors and I know this from my medical history which includes stuff like… the injury in my right knee spreading to my left knee in only a couple of weeks (the start of CRPS). The IBS set in within a couple of weeks of the disruption. The respiratory issues were locked in as the new default within a week or two of being prescribed an incorrect asthma inhaler. These are just a few examples of how quickly new patterns become permanent in my body.
So here’s the Thing:
Knowing this about my body: if I were to catch the pandemic virus, even if I avoid fatal inflammation increase, I would have to absolutely get rid of aaaall symptoms within 1 week, maybe 1.5 at most, to avoid having to live with those symptoms for the rest of my life. I’m not being precious. I’m not a hypochondriac. I’m a scientist with a sucky disease. That’s it. It’s simple and it’s crappy. It is what it is though, and I don’t get to pretend otherwise because the risks are unbearable.
Most people make a full recovery in, wait for it….12 weeks!9 I know, right?!
I literally can’t afford to catch it.
If I do, either I die or I survive but whatever symptoms I experience are incredibly likely to become permanent.
Imagine having COVID symptoms every second of every day and night for the rest of your life.
This is what I’m trying to avoid. Well, and dying. I’d like to avoid that for a while longer too of course.
I didn’t fully comprehend the severity of my chronic inflammation until a recent appointment, but I’ve tried to convey the lifetime-of-Covid-symptoms on multiple occasions. Many times I’ve thought I successfully conveyed this situation, my partner likewise, and then the next conversation or visit we’re right back to being invited indoors, being told we don’t have to wear masks etc and we’re glancing at each other in confusion trying to figure out what happened.
We still get asked: ‘when are you going to live your lives again?’ The last time we were asked this my partner replied that we could live our lives up until I catch covid and then we wouldn’t have that life to live any more. He said that at that point my life as I know it would effectively be over. Which is why we’re trying to avoid that.
This is what so many fellow patients are experiencing right now. That dissonant horror of knowing that our loved ones care about us whilst experiencing them actively trying to dismiss our medical reality and repeatedly put us at risk. It’s obviously not what they think they are doing, they presumably think there is no greater risk for us, but why that view never changes no matter how many times we try to convey our reality is hard to figure out. It’s emotionally exhausting having to repeatedly explain that we are trying to avoid worsening our condition, getting hospitalised, dying or ending up with COVID symptoms for the rest of our lives. It’s so painful and upsetting to repeatedly be told ‘it’s no big deal’. They’re effectively saying they don’t want to protect us, and that is so very painful, but it’s often because they don’t realise our risks are so great or, worse, genuine.
There are some variables I can’t control. My partner is a keyworker but he’s also my carer. He does the best he can to protect himself and reduce the risk of bringing it home. His employers have no interest in protecting his at-risk partner and his experience is that the general public were about 50% unmasked around him while he’s working when the rules changed in July and he’s found that the number of unmasked members of the public around him has been increasing ever since. This already creates a percentage of risk for me and it’s already too much risk10 because I have to avoid catching it at all.
In my case a part of my brain is dysfunctional and detrimentally impacts my other body systems including the immune system. I’m an example of someone who ‘looks’ okay (because I rest and prepare before visiting / being visited) but whose condition is complex and multi-systemic. Many patients have more readily accepted situations, such as transplant patients and cancer treatment patients whose immune systems are, at the least, heavily compromised and yet even they are put at risk because people can’t ‘tell’ who is vulnerable by looking at them and tend to assume those around them have the same risk levels as themselves. There is a whole spectrum of conditions affected where patients struggle to explain the realities of their complex risk situation. So just because someone has a pain or other neurological condition, for example, does not automatically mean that their immune system is unaffected. Our body systems talk to each other and, over a chronic length of time, many other systems can and do become compromised. It doesn’t mean that they are ‘safe’ or that you or they being vaccinated will protect them enough to mitigate risks. The risk depends on the dysfunction within each person’s body and that isn’t visibly apparent.
I have friends around the world in my beautiful, knowledgeable, international patient network who also happen to be trained professionals with amazing skills11. We’re extremely well informed and continue to seek out the latest research, apply our skills to that and share the most reliable and useful aspects. Some of those friends have seen their risk factor become reality. For example, a friend with both CRPS and Dysautonomia now diagnosed with ‘Long Covid’ has extremely exacerbated autonomic issues that are impacting their life massively, (dysautonomia is also a commonly new condition in many previously healthy Long Covid patients9). Some friends with chronic CRPS have been told unequivocally by their doctors that if they contract the virus it would be astonishing if they didn’t die, and on the flip side an incredibly healthy and active friend seemed to be recovering from the virus when they went downhill and ended up rushed into hospital for worsening respiratory issues. Any of these scenarios could be me.
What can you do now that you know the risks are real? The main thing is to be aware of what poses risk and avoid passing that on to the patient. If you do not come into contact with the patient they are protected but if you are doing higher risk things and then coming into contact with them, or worse – living in the same house as them, you need to be aware of how those actions are increasing their medical risk. For example, my lovely partner (the famed ‘Magic Dude’) misses going to concerts with his brother. They’ve been attending multiple concerts every year for many years and it’s a good way to example the varying risk level so I’ll use that as a comparison with his day to day work risk…
At work: Members of the public popping in and out of the building around him, less than half of them wearing masks so any unmasked infected people will be breathing out in his vicinity for however long it takes them to run their errand in the same room as him. The amount of time they are breathing out in his space is key so the quicker they are gone the lower the risk. A door to the outside is usually open so there is some air movement in a small space. When indoors he always wears a good quality mask that helps to reduce aerosol reaching his nose and mouth as well as protecting others in case he unknowingly has the virus (he knows all too well that anyone could be in contact with a vulnerable person and doesn’t want to risk others). The longer he has to remain in one room with people coming in and leaving their breath floating around the more the risk increases. It’s not like he’s wearing swimming goggles or anything – if the virus comes into contact with his hands, face or eyes he is much more likely to bring it home to me.
At a concert: People in the same space for several hours instead of minutes increases the risk significantly. People shouting/cheering/singing loudly expells more aerosol than just breathing / talking, so this significantly increases risk as well. Even if less than half of the audience were wearing their masks (same percentage as at work) the risk of exposure to the virus is hugely increased. Even with my partner wearing his high quality mask there is a much higher potential for aerosol virus in the air and therefore of it coming into contact with him. It’s in a larger space but the air ventilation is poorer overall which also increases risk.
Another way of demonstrating risk is to flip the scenario: people running their errands around him at work don’t hang around for a few hours cheering him on wildly and yelling along with whatever tune he might be humming at the time. It’s a biiiig difference!
Even an outdoor festival in Cornwall last month where as many precautions were set in place as possible, including testing people and refusing 450 of them entry as there was a chance of them carrying the virus…has still resulted in a massive surge of (nearly 5,000) new cases12. So we can see that even outdoor concerts significantly increase risk because of the close contact with others.
So once you know what puts them in more danger you can avoid those scenarios. The phrase ‘we’ve got to live our lives again’ is repeated regularly in the media and used sometimes as an excuse for putting others at risk. Living our lives again as we used to puts other people’s lives at risk. That’s just the sad fact of this situation we’re all in. Living our lives again with care about how we do so is the best all round way forward, especially for anyone in your life that you care about who is at greater risk.
Mitigating riskwhen you are in their vicinity If you have a loved one who is at risk then there are ways you can help protect them as well as ways you can help them cope with that reality too.
First and foremost, know that their situation is majorly different from that of people with fully functional immune systems. What is lower risk for vaccinated immune-tastic folks is still life-threatening for us lot. The first biggest difference you can make is to not just listen but to truly hear what they are saying. What they are saying is entirely appropriate and proportionate to their level of risk, which is simultaneously completely different from your level of risk from the same thing.
So let them know you’ve heard them and that you have truly taken the information in.
Then: behave in accordance with what you’ve said.
The most painful experience for us right now is people telling us that they ‘get it’ and want to protect us but then demonstrating the exact opposite with their behaviour and expectations. You’ve learned that they are at high risk so please don’t then put them at more risk.
You can do this by:
– staying away from them if you are unable, or not prepared, to take precautions to protect them. You could have the virus with no symptoms and anything you breathe out near to them or in the same room as them can come into contact with them.
– showering and changing clothes after being in the vicinity of other people before you go anywhere near them.
– still keeping social distance from them even if you are taking precautions to protect them. No precautions will fully protect them, so the more precautions you take the more you reduce their risk.
– wearing a mask anywhere near them and especially when in the same room as them. If you unknowingly have the virus a mask reduces the amount of aerosol droplets getting into the space around them10.
– opening windows so that there is an airflow through the room taking aerosol droplets with it. This is important because the viral aerosol stays in the air for much longer than originally thought, and it doesn’t leave the room with you once it’s in the air. Leaving virus droplets in the air of a vulnerable person’s room becomes a higher risk because the longer it’s in the room with them the greater the chance that it will connect with them. One open window only reduces risk a bit, two windows reduces it further and so on. The more airflow there is the lower the risk. One window open will stir it up a bit but won’t be anywhere as effective at removing it from the room10.
– if airflow is tricky there are ways to increase it without knocking new holes in the wall for more windows. Air filters with an effective aerosol HEPA filter will help remove viral aerosol from the air, though it is obviously better if it doesn’t get into the air around a vulnerable person in the first place. Some air filters also have ionisers which are effective at removing aerosol from the air. Just be aware that there is a certain amount of ozone byproduct from ionisers. Low amounts of ozone from air filtering devices are often acceptable but check it out first and with regards to the patient’s and your own health vulnerabilities as it is a toxic gas. If in doubt open a window for ventilation. This may seem backwards when filtering air, but it’s not if your aim is to minimise viral risk in a room. If you have an air filter with different settings you should be able to turn the ioniser off whenever you need/want to whilst the air filtration continues.
– meeting outside is far safer than indoors even with windows and doors open, but still keep social distance as this is key to keeping the air around them as free of aerosol as possible and think about whether the wind direction is carrying it towards or away from them.
It’s not just about the people you’ve met with, but the people they’ve met with, and so on Many people underestimate that the risk of catching the virus from anyone you’ve been near and then carrying the virus to someone else, but massively overlook the huge increase in risk when you meet anyone who has been in contact with other people. For example, one of our allotment neighbours was talking about only mixing with his “bubble” of people but was surprised to realise that the bubble isn’t actually a thing if anyone in the bubble is interacting with anyone outside of it. The bubble is only a thing if the people in it only interact with each other. Once anyone from that bubble starts interacting with others outside of it (meeting up with friends, going to school or work etc) they expose everyone inside the bubble to all the people they’ve been meeting (and all the people that those people have been meeting…) even though you haven’t. If any of them have the virus, that person is bringing the risk to you and when you meet up with anyone else you are then taking that risk to them. Worse still if you take that risk to someone for whom that risk is far greater.
Our eldest niece made an excellent example of understanding this when she went to visit her grandparents during the last lockdown. She refused to step inside their house and only talked to them from outside. They didn’t realise she was doing the entirely appropriate thing, but that didn’t matter because her choice of behaviour is what was important. She knew she’d been mixing with other people, she knew that having no symptoms is a Thing, so she knew she could be putting them at risk – and she chose to take precautions to reduce their risk.
It’s suggested that the only way to avoid having to take those precautions is to quarantine for the standard 10 days13before meeting someone vulnerable as there is always the possibility of you having the virus with no symptoms. Every time you meet with someone who’s been meeting with other people your quarantine is broken and you’d have to start again as there has been another chance you may have been in contact with the virus. You are not ‘safe’ for a vulnerable patient to be with. However… even after quarantining there is still the chance that you have it but are assymptomatic (i.e. do not develop symptoms) because you can shed virus for up to 37 days14.
You can take a lateral flow test (currently available free15)which gives you an idea but that also isn’t absolutely definitive so please do still take precautions with anyone you need to / want to protect.
Vaccines in the general population Anyone who has had (and not everyone can or should have) the vaccinations has a reduced chance of both hospitalisation and death. So yes, vaccinated people can still catch the virus and although for most people the risks are far reduced, for some people hospitalisation and even death can and will continue to happen because the vaccine can only teach the immune system how to deal with it, how well your immune system actually does that will be unique to you and your immune system.
– Being vaccinated does not mean that you are safe to be around. If you’re vaccinated you can catch the virus and pass it on to a vulnerable person or to their partner/carer/parent/child etc who would then take the virus home with them. Vaccination reduces risk to that individual but does not prevent infection or transmission17.
– New virus strains may not be as mitigated by the existing vaccines. Earlier information noted the effectiveness of the vaccines against the Delta variant18but it has since been found that the Delta variant is twice as contagious as previous strains19and two studies have suggested the severity is more likely to cause hospitalisation19. Fully vaccinated people shed just as much Delta variant virus as unvaccinated people20. The shedding of that variant virus doesn’t last as long as with other variants19but this knowledge isn’t helpful in practical terms as we usually don’t know when we’re shedding virus anyway because….
– Not having any symptoms does not mean that you are safe to be around. You can be infected and not know it because the virus sheds long before symptoms show. The virus can also present assymptomatically in some people meaning that symptoms never show up at all.
So being vaccinated and feeling fine / not having any symptoms is irrelevant to whether you are safe to be around.
Being vaccinated protects you from hospitalisation and death to varying degrees per individual but it does also reduce transmission in some variants to some extent (although the delta variant is virtually just as transmissable by people whether they’ve been vaccinated or not)19 – so it is a factor in helping to reduce the risk you put others at…. but…… you can still infect them and for vulnerable patients their risk remains about as high as it was before you were vaccinated.
By the way, symptoms in the vaccinated are generally much more low-key than in the non-vaccinated. You can see a list here.
Vaccines in the chronically ill Those of us in the chronically ill population who are vulnerable to the pandemic virus have compromised immune systems. For some of us our immune system is dysfunctional / compromised / entirely absent, for others our immune system is dysfunctional because of other health issues having that knock-on effect. Patients with compromised immune systems can sometimes still be safe candidates for the vaccine, but…
– If a vulnerable person has been vaccinated it does not mean that they will be safe around the virus. Those of us vulnerable patients who are able to be vaccinated are not as well protected by the vaccine from hospitalisation and death. As our immune systems are compromised they can’t learn as much from the vaccine or put as much into responding to the virus as a healthy system would.
We have all tried explaining this to our loved ones in the hope that they would want to help to protect us but it doesn’t work out that way. It’s hard to understand why because we’re coming from two completely different points of view and experiences. It’s tough to bridge a gap of misunderstanding when we don’t really get why the misunderstanding keeps persisting. We don’t know where we’re going wrong. On either side of the puzzle.
I really hope that this helps start to bridge that gap. If sharing this information helps people understand why their vulnerable loved ones are vulnerable then I will be immensely grateful to have been able to help in any way.
11. Our informal international network of patients who have professional skills and qualifications includes nurses, pharmacists, pharma reps, psychology grad’s, researchers, chemists….and on and on… CRPS, dysautonomia etc don’t care what we’re trained in, it’s happened to lots of us and we apply our skills usefully wherever we can
I just found out that my pal (also living with decades of CRPS) also hears screaming in her head. Whilst our outer presentation is calm and in control our inner voices are busy doing what we can’t do in the outer world. If we started it’d steal all our energy, undermine our steely determination and, frankly, we’d never stop because the pain never does. The inner screaming is the tell-tale of relentless suffering that our behaviour to those around us belies.
My pal and I work well together. Where my brain now fails, hers can handle it, and vice versa. Together we can get the job done because the bits that stall each of us are picked up and dealt with by the other.
We chatted about the inner screaming and bounced ideas around. Her with her medical training and neurogeekery, me with my psych background and experiential approach.
Just because we have inner screaming doesn’t mean other pain patients do, but what if we all have something happening around the point (and beyond) that our body’s coping system goes into overdrive? Not the one where people notice we’re really symptomatic (because most people won’t see our pain until we’re on the verge of requiring hospital treatment) but the point where our inner alert goes off. Like one of those secret alarms that let the security and sort-stuff-staff know that there are threats that need to be dealt with. A message just for us, about the state our body is in.
What could it be for others?
Screaming is what my pal refers to as a primal response. That’s our clue. Primal. Nothing sophisticated – it’s not a chatty message, it’s an alarm going off about the unbearable. But the unbearable is our permanent condition. It varies in intensity but never goes away. This alarm could vary too. Be it inner screaming, nausea, physical shutdown/freeze, and such like.
Hardly surprising, as many years of chronic pain impact on all the internal systems that both talk to and inform each other. We develop lots of comorbidities in the same system as our original ‘fault’, but also in the other systems that are informed by the faulty system either directly or via the brain, or by a faulty brain that’s causing the original faulty system. In a nutshell – the human body communicates so thoroughly with itself to function, that a dysfunction does not get cordoned off or contained. It has multiple effects that accumulate over time. Alarm messages showing up in different systems is not a surprising outcome. Especially the longer the patient’s body has been dealing with the chronic pain.
Do you experience something like this? A marker of pain intensity that doesn’t necessarily involve pain itself? And all the while our exterior belies the extreme experience we’re living because it often doesn’t show on our faces as a ‘pained’ expression, or in our composure as a ‘pained’ posture or pain-impacted speech etc. We’ve had years, many of us have had decades, of having no choice but to live with the pain and as such it does not ‘show’ in the way others might expect.
On the inside.
– It. Does. Not. Show.
Interestingly, it can be calmed down. Sometimes noticeably so. It’s not a fix, it’s one tool of many we use to try and cope with what is a never-ending “ALERT ALERT ALERT” situation inside our bodies.
I’ve been learning this year how important it is for my health that I make sure I take time for me. Specifically time to do something that makes me happy, that I enjoy, that feeds my soul or my hunger for knowledge. Something literally just for me. After trying to factor it in because it had dawned on me (fiiinally) how much I am skewed towards trying to be ‘useful’ or ‘productive’ I then also discovered that it really helps me to stabilise symptoms and improve my baseline pain and functionality whilst reducing my stress levels. I know. It’s obvious to everyone but us, right?! But the internalised ableist Guilt of not being “productive” in the way our society frames it means that it is absolutely commonplace for us chronically ill patients to disallow ourselves any fun or relaxation because we have not been productive enough and don’t ‘deserve’ it. And if we do allow ourselves time the guilt eats away at us.
Today my visiting CRPSer pal has been reading a book for a prolonged period of time whereas audiobooks are usually the only viable option for her. Turns out the calm friendly company has quietened the screaming which is allowing her the option of either for once. Nice! Mindfulness is all well and good but it’s blooming hard work when there’s inner screaming or it’s equivalent. What is making it easier for her is being in the company of someone she feels relaxed and comfortable with instead of battling the pain alone.
There’s all sorts of research about how our loved ones impact on our experiences and it has been notable how research participants can endure significantly more pain when in the company of a loved one, in fact, even with just a picture of them to look at! Many a time I’ve commented on how much better I can cope when Magic Dude gets home from work. He’s not just a distraction, he’s not just someone who brings me food, fluids and hot water bottles to save me from making my symptoms worse trying to get them myself… he makes me feeeeeel better. His existence helps me cope. Preferably his close proximity but even chatting to him on the phone when he’s on his work lunch break can have a significant effect. It’s not just partners of course, it’s people we love. They might be family by blood, family by soul and heart, they might be furry four-legged family members…love helps, but is it really the love making the difference? I feel that a significant part of it for us painees is the external focus on that person or on that love. We are trapped in these bodies with the pain and the screaming and the dizziness and the lack of functionality….an external focus that we love is a handy option in our toolkit.
That would mean though that it doesn’t have to be a person, whether a human or animal one. Indeed, many of us have creative hobbies which, despite taking a physical toll of some sort, we love and persist with. Whilst we’re drawing / colouring / sewing / designing / writing / taking photos / crocheting etc our heart soars with the joy of doing something we love. Engaging more strongly with a focus outside of our tortured internal experience doesn’t change the inner experience, but it does tip the seesaw of attention in a more bearable, even enjoyable, direction.
It doesn’t stop the pain; it doesn’t solve the problem but it can help us to cope. Calm that silent alarm down for a while. Give us some hint of respite from the pain that never ever relents. Allow our nervous systems to dial down the alert level so that our systems can run at lower levels of horrific for a bit. It gives our bodies reduction in the intense stress and strain on our systems that is otherwise non-stop high-level impact. Enabling us and our internal systems to rebalance and restabilise to some extent – and that is crucial.
So, to temper the silent alarm we have to do more than just manage our health. We have to acknowledge ourselves as more than just a patient with health needs and allow ourselves to feed our hearts and souls. Often an external focus can help a bit, whether it’s human, animal or hobby. Whatever helps, right?
Ridiculous that having performed and taught Tai Chi I should be so ridiculously unbalanced in my lifestyle approach eh?! It’s so hard to see it when we’re in it though. And ableist views of productivity and usefulness are so ingrained in us that it takes a good while to work them out of our psyche and reframe ourselves more appropriately and realistically.
So if it helps, here’s the Thing:
Moments of enjoyment and relaxation are not something to feel guilty about because…
…they are in fact a crucial part of our pain and health management that we must not neglect because our systems are under such relentless continuous stress that it is imperative that we do so. We have to factor this into our daily lives along with our other management tools.
So you don’t just have permission, it is a necessity.
We’re both interested in your experiences with this and realise that our different writing styles make our conversation accessible to different readers. Plus I was intrigued to find out how differently my brain would write about the same subject considering that she and I work really well together because we come at things from different angles and with different approaches. Heh, you’d think I was trained in research or summat! 😉 (Spoiler, I am, heee).
I did a little chat to video for my healthy, mostly able-bodied friends because crips like me are old hands at handling isolation so we can share some tips that might help. [Hmmm, Tips from Crips, maybe that should’ve been the title? Crip Tips?] Aaaanyway, then my friends all asked to share it so here it is in written form because the audio was not always that clear…
Admittedly it’s initially been hard to deal with the healthy folk not coping with their, what is to us, very brief and temporary isolation with their mostly functional bodies. We’ve continued at the periphery being referred to as ‘other’ through the “only” the vulnerable will die phase, then people buying everything leaving the vulnerable without, then people not staying at home to protect the vulnerable and finally only doing so when it seemed to be important to them personally and now they are at home and we’re finally being risked less – we’re hearing a lot of complaining about how awful it is being stuck at home temporarily whilst able-bodied.
And I’ve shared about this for insight because healthy people can look at their current experience and try to imagine what that’s like as a forever situation because that could mean more awareness and care for people like us out on the periphery, but what I don’t want is for people to feel shamed into hiding their frustrations because ‘so-and-so has it worse’, that’s not helpful at all. Your frustrations are valid, even though we’re jealous of you because even in lockdown you are capable of all the things we would like to do at home but either struggle to do at all or simply can’t.
When life gets harder, you must have just leveled up!
But we do have a lot of experience dealing with isolation so…
First of all – yes, being stuck at home sucks. The early stages are particularly potent as we go from living a faster paced life to what feels like a standstill. Over time you’ll settle into it more but let’s see if we, the long isolated chronically ill lot, can help with that transition at all.
Not all of our experiences are relevant to you. When we first found ourselves where you are we had lost our identity because we could no longer work (amongst all the other things we could no longer do) but what we do for a living is key because that is how we’ve been raised to define ourselves. The standard “and what do you do?” question that we get all the time because the assumption is that everyone does something, and we do, but what we do doesn’t ‘count’, as it were. Even after no longer being able to train for a career, work to earn an income, do the things we used to do and go out to see friends, go on excursions, to events etc we still don’t actually do “nothing”. Our time is filled with pain and symptoms and finding ways to cope with that on top of the frustrations of not being able to do stuff. So we will spend hours trying to build our body up to trying to get some food, trying to have a shower etc.
This is obviously not how your time is being filled. You are mostly able-bodied, used to being on the go and suddenly find yourself stuck indoors. You’re most likely really frustrated and because you can’t go out you and we’re all only human, you are probably wanting to do all the things that involve going out.
So here’s the trick, and when we (the chronically ill) get told this initially it sounds really offensive until we understand it better but as you don’t have the health issues getting in the way it might make more sense to you earlier on…the trick is… “acceptance”. <shudder>
Yes it sucks. We haaaate this one! But the key is that this is not about ‘giving in’, not at all, it’s simply about acknowledging the parameters of the situation because once we’ve done that we stop bashing our heads against them and are freed up to think about what we can do within those, admittedly sucky, crappy, horrid parameters.
So…seeing as you’re stuck indoors, what is there indoors that you could do?
Yes, all the cleaning and DIY etc
Who are you? What do you enjoy? What have you been putting off or not getting round to that you’d like to do or try? Not work related stuff. You related stuff.
Who were you before the adulting?
Art? Books? Writing?
This is your time. To be you. Indulge in yourself.
We try to do this but it’s hard because we mostly still struggle to do any of this stuff. Managing to get to the toilet has to come before doing something for us. And doing something for us always renders us in more pain/with more symptoms etc so it ends up being a rare thing indeed, but you have this opportunity here because you’re not restricted like we are. I’m not saying ‘ooh look we’re worse off than you’, what I’m trying to say is… you have the opportunity to really run with this in ways that we can’t. This could be pretty awesome!
At first it kinda feels like you’re at school and have been told it’s ‘indoor play’, ugh!
The trick is to re-frame it – it’s not so much like indoor play – as getting to go home early! You can play, it’s guilt-free time to just ‘be’. And you can do it in your house with all your stuff. So be you.
No-one else will see… your drawing, your poetry, your writing, your new attempts at recipes with the random ingredients you’re having to work with! No-one will see your home-made videos (unless you choose to share any of these afterwards of course). No-one will see your fort (oh yes, adults can totally make forts too). The decision is all yours.
One key tool that we use is not to look too far ahead into the future. So rather than looking at the potential weeks at home stretching out ahead of you the trick is to think of a thing you’d like to do and focus on that instead. We rarely know what day of the week it is because unless we have a doctors appointment they are basically the same Groundhog Day over and over. If we acknowledged the days going by without us we’d be a forlorn mess. All those people living their lives when we no longer can. In this instance though you’re not getting left behind because everyone is in the same boat. Or most people anyway. Most people are having to isolate and not do what they usually would be doing. So you have an opportunity to play without getting left behind.
Re-focusing helps with worries about the future as well. Income is a concern for many. We understand this concern, it is ever present in our lives and unless we could step back from that we would never cope. We don’t just block it out, what we do is what we can for now – get that set in place. Then what is out of our hands is out of our hands. Worrying about it would send us doolally with the stress about the resulting impacts that would bring. So once we know we’ve done all we can for now, we step away from that as well and consciously focus on something else. For our own sanity. This is crucial. Do what we can then shift focus.
Stopping to notice the little things. People don’t usually do this unless they’re are on holiday. It takes some time to wind down and slow down enough to do this. Work on it. Have a cup of tea, look out of the window, notice the sounds, the feels, acknowledge anything that you like. Let it make you smile. These little things pass us by usually but when we’re isolated they become a quality part of our lives.
Keep in contact with others. You’re used to seeing people every day and suddenly it’s not happening. The silence can be deafening. Check in with friends. Send messages, silly pics, make video calls, have a laugh. Contact friends who live alone or are chronically ill, the former are currently extra isolated and the latter are always isolated and are suffering from years of this. You will make their day just by saying hi. Trust me!
Keep some semblance of routine though so that your body doesn’t rebel too much. Sitting around in jammies all day is okay for the first couple of days but then we really need a focus or things can easily slide. If they do that you can find yourself without a coherent sleep cycle or decent nutrition and if you do get ill your body may not be so ready to deal with it. So keep clean and get dressed, have mealtimes still, look after your body and be you.
So to re-cap, some tools we use:
Accept the parameters (they’re shit, we don’t get to choose them)
Re-frame it as an opportunity
Don’t look to far into the future: prepare as much as you can for eventualities and then re-focus
Get in touch with who you are on the inside, regardless of job, positions in society etc
Look for possibilities within those parameters that might make you smile
Take time to pause and notice the little things
Keep in contact with others (we have the technology)!
Keep a routine so that your body has enough sleep, nutrition, exercise etc
So…what do you feeeel like doing? What do you have in the house? Are you gonna put a tent up in the garden and listen to the birds? Are you gonna do some drawing in secret just for your heart’s content? Do you feel in need of putting on some music and having a really good dance-like-no-one’s-watching moment? Awesome! Do it! Not sure what your focus will be yet? No worries, stick the kettle on and have a think. That’s part of the process. Rediscover who you are on the inside and allow them out to play. You might find one thing you want to do or you might find lots of little things along the way. You might prefer to make gifts for other people to make them smile. It’s all good. Let your inner you take you on an adventure.
I wrote this the other day and it’s very rough around the edges but as this is a window on current events I’m posting this during the time it’s happening. Here is why The Spoonies are Baffled…!
The stuff healthy people have been panicking about has seemed kinda surreal to us Spoonies. It’s just so far from our reality. That’s not to say their concerns are less valid than our own, everyone’s concerns are valid, but they can be very different indeed and from a broader view there is a distinct difference in scale of risk e.g. ‘I’m worried I might run out of food’ on the one hand and on the other ‘I’m worried about my heightened risk of death, I need to isolate for my own protection but am having to go to the shops even more than usual to try to find food because everyone else seems to have bought it all’.
A cartoon sketch of me looking utterly perplexed.
Magic Dude is having to come home via the supermarket more often, not less, because he has to keep checking if the essentials that weren’t there have been re-stocked yet. This is the complete opposite of what he should be doing as he has a vulnerable partner at home. We live in an individualistic society, I know everyone looks after themselves first, but buying up all the supplies so that the most vulnerable can’t isolate feels pretty personal when you’re one of the ones being put at greater risk.
Healthy people will have to be at home for awhile. Anyone who does this will save lives. We generally cannot do all the things that you can do at home. To us you have a superpower, a privilege of relative health and able-bodiedness. You have time at home during which you can do stuff that we battle our bodies to do once in a blue moon.
Seeing as our worst case scenario from catching SARS Co-V2 is death… running out of loo roll is pretty meh to be honest. We have cloths and a washing machine. I’d rather that than die. No biggee, right? Stuck at home for a few weeks, meh, try decades, we’ve got this! Having to explain to people why they shouldn’t put others at risk, weeell that’s an extension of endlessly having to explain our conditions anyway, we even have to explain our specialist conditions to non-specialist doctors so it’s basically same-old same-old. But none of these are easy. Having no toilet roll is, well, shit! But more so when you’re chronically ill and less able to do washing. Being stuck at home but being unable to do anything owing to the chronic illness is sucky beyond description. Having to explain why we have a right to treatment/life is indescribably exhausting and demoralising. But when my bruv called me the other day and asked how the lockdown was going I said “same as always!” and laughed, because this is my life. It’s not going to pass. Everyone else will go back to the Great Outdoors and Doing Stuff and we will be left living our lives silently behind closed doors again. Forgotten about once more.
A lot the stuff healthy people are currently worried about and experiencing to a lesser extent, for the most part, also creates a chance that maybe, just maybe, some people will get an insight into how they are aspects of our permanent,daily lives.
An ‘ah-ha moment’ could potentially happen!
How long they’ll remember that is a whole ‘nother thing, but still… a moment of understanding from people usually outside of comprehending our reality can be important. It can strengthen or recreate a connection to those friends who don’t really keep in contact, who don’t visit even though they always say they want to, (a typical impact of chronic illness is loss of friends and occasional empty promises of seeing a 3D human are initially thrilling but often ultimately devastating). We’re so isolated pretty much all of the time.
We see doctors and sometimes family.
Each year I can count the exceptions to this rule on one hand and still have fingers free to hold several biscuits at once. (This may of course be a bonus)?
So yeah, this is kinda like my experience growing up in the countryside and getting snowed in by 6’ snowdrifts a couple of weeks per year, then moving to a city and witnessing the carnage and panic caused by a mere dusting of snow. It was so beyond my comprehension that anyone would act that way in what, to me, were such minor circumstances that it was truly surreal to behold! The chronically ill community and our carers are seeing the healthy population do things that we find utterly bemusing under the circumstances. Magic Dude has often been lost for words to describe his befuddlement over what he’s been seeing and experiencing when he goes on essential food runs. There’s talk amongst healthy people of how it’s not surprising because people are under so much stress, and yet we’re still utterly bemused because we are under at least that much stress all the time and we can’t comprehend how it would cause that behaviour. To us it looks like a madness of sorts.
Then there’s the angering behaviour. Some crafters have been smugly showing off their finds online as if there’s nothing wrong with buying the last bottles of alchohol swabbing stuff from the diabetics stock. Seriously? How is this acceptable in any shape or form? I can’t imagine what kind of people would see such a post and cheer at someone effectively saying “I can craft at the expense of a vulnerable person’s health. I did this by choice. Yay me, bet you’re so impressed/jealous!”? Or at least, I don’t want to imagine those kind of people. Or those moaning about how the vulnerable customer hours at supermarkets are filled with ‘normal’ people when, you know, invisible illness is the majority of chronic illness and these people are very vulnerable. We’re as invisible and deemed irrelevant as ever it seems. In the UK we had weeks of ‘oh it’s okay, only the elderly and chronically ill will die’. Oh. That’s okay then. (Arse).
So… we have to look out for each other because in our extensive experience pretty much no-one else is going to.
Fortunately, the UK is now catching up with what we knew was coming weeks ago and did nothing about. The government has advised we remain at home and only go out for essentials such as procuring food or medicine. Magic Dude has fiiiinally found that places he’s getting sent to for work are no longer packed with people. He has been designated a ‘keyworker’ and can’t work from home so he can’t fully protect me (or himself, he has asthma) as he has to go out into the world and he has to come home to look after me. We need others to protect us by not going out there. Humans shed coronavirus for days before even starting to show any symptoms, so not feeling ill has no relevance to whether you are spreading the infection to vulnerable people. He was working in a hospital the other day and overheard someone say “I realise it’s real, now”.
Meanwhile, here’s an insight to what’s been going on in the chronically ill community. First: it’s… well… a community, so it’s not so extremely individualistic because we strongly identify with each other. We’re part of the same tribe. Broadly speaking there is support and information being shared, a good support group can be invaluable to a patient. There are differences and personalities that clash but when the shit hits the fan we band together. Unlike in the healthy population the main go-to is not ‘save myself’ individualistic values. The main theme is information based – we want to share it to protect each other and the information is even more important to us because we are far more at risk from complications, but not everyone is trained on assessing source reliability. Sharing anything we see without checking the source is how unhelpful / incorrect information gets spread. This is an issue for healthy folk as well but a) it doesn’t risk their lives to the same extent and b) it seems to be secondary to Buying All the Things.
We know what it’s like to be without. To be restricted. To not have health support. To need meds and not be able to get them. The majority of help and information-sharing that I’ve seen in my social media network of both chronically ill and able-bodied has actually been from the chronically ill. Those who are most limited and most vulnerable are being most pro-active about protecting others. ‘At risk’ people still recovering from the coronavirus reaching out to share crucial information with fellow patients. ‘At risk’ people in hospital reaching out to their fellow patients because they know those are the people who understand the risks and complications and can offer relevant info or advice rather than empty encouragement. ‘At risk’ people sharing information to protect their at risk friends and extended family.
The other type of friend in my social media world who have been sharing valuable information are my science friends. Some friends are both ‘at risk’ and scientists. (Yes, we can be both highly qualified and intelligent while also being chronically ill and even cognitively impaired).
The general kinship of the chronically ill is often online because that’s where we live. Social isolation is nothing new to us, it has been our bane for years, often decades. For me, getting to a Tai Chi class was the most social event I got to go to. Since I deteriorated post-fall over 3 years ago my social gatherings are pretty much only with headphones and a laptop. We get to know each other, we get drawn to people who have the biggest overlap with us in a Venn diagram of who we are. Friendships are made and then this happens…
There are tight knit online networks of dear friends who’ve seen each other through thick and thin for yeeaars. Shared with each other details which we can’t share with our healthy friends coz the majority have enough trouble coping with what they know about our illnesses already. Risks of surgeries get discussed in reassuring but practical ways around the condition in question. Health hiccups get posted with questions and the ill-friend network answers. Research papers get shared to inform confused GPs. We can be honest about severity and risk factors because we ‘get it’, we aren’t phased by the severity of everyday issues because that’s our daily experience too. Severe and in-your-face-real is what we have been dealt by our conditions and fellow patients are best placed to understand and support each other even though we’re each up to our eyeballs already.
Along comes another threat to our health. Only this time it doesn’t just threaten one person in the group at a time, it threatens all of us at once. But other than that, it’s ‘just’ another threat to our health. Admittedly it’s a big one, but the point is that this is what we Do. This is what we live with. All the [hecking] time. The risks we face with our health, our treatments, our meds etc on a daily basis are constant and continuously fluctuating and morphing. So we’re not only having to deal with this continuously but also having to endlessly adapt and be flexible to the shifts and changes because they change the problems, complicate them, force us to learn more to understand the science so that we can explain it to our non-specialist doctors. If we don’t we’ll go under. We’d get taken down by the severity of our symptoms, our meds side-effects, our lack of treatment, our lack of medical support and/or understanding. It is relentless.
In light of this insight into the differing responses of the well and the ill, it is hardly surprising that there were initially memes all over the chronically ill community about how when the ‘normies’ are ill we should suggest thinking positive and trying yoga. This is amusing to us because….we get told that shit aaaall the time. Sometimes people will go out of their way to specifically write us a message about the wonders of [insert magical cure here]. Having to repeatedly point out that stuff that helps with certain issues to small extents cannot magic away a neurological condition gets old fast. So after all the yeeeaaars of getting this repeatedly from sooo many people…this is darkly amusing! It’s cathartic!
A seesaw diagram leaning down on the left of the fulcrum. On the right are a few postive comments from medical practitioners (including “There’s nothing left I can teach you”). Weighing it down on the left are a lot of uninformed and damaging comments from others e.g. “Here’s a book about thinking away your pain”, “You’re doing physio so you must be getting better” right through to ” It’s all in your head” on the far left.
And when people are complaining about getting bored at home we’d like to point out that we’re soooo happy if you’d like to swap awhile, you can manage this crap for a bit whilst we finally get to paint and DIY and garden and Tai Chi and bake and and and….all the things we could do at home if we only were well enough.
Of course we could resort to that other age old claptrap we get and start telling people that “it must be sooo niiiice to be at home aaall the tiiiiime”! (Spoiler: it isn’t). (Especially when you are ill and it’s forever).
We use humour to cope with yet another threat to our health (and potentially to our lives) because there are so many of these over the years that a somewhat dark and twisted humour becomes a survival tool of sorts. But what we really want is for no-one to ever say this crap to us again. That maybe they will get some insight to our lives through how much they hate having to stay at home for even such a short time, how bored they get when that’s not even a drop in the ocean yet. Or maybe, and here’s a thought, they might actually stop buying aaaall the Things.
Our healthy friends won’t ever truly know just how relentless that stuff is so they’ll never know how much of a relief it is when they don’t undermine our entire existence and everything we battle through 24/7 with one ignorant, offensive comment. But this health-scare experience might mean a few additional people realise how inappropriate that stuff is. Every little helps, right?! A few less comments like these to deal with would reduce the amount of daily crap we have to deal with. Which would be nice, right? So I can hope, right? (Magic Dude says my most annoying trait is how ridiculously optimistic I am, but I need it to survive so it’s staying).
We love our friends who don’t come out with the Stoopids. To them we say ‘thanks for not being dicks, we The Spoonies appreciate it!’. They’re probably the people who aren’t panic-buying everything from under us, too.
Maybe now that the reality of the threat is sinking in we might see a change in behaviour to something more sustainable to get us through the next few weeks or months. Over-burdened hospitals means that people with no virus but who need to be treated for car accident injuries or a heart attack, for example, may not get the treatment they usually would. Their risk of death is higher because having more critical patients than ventilators means that choices have to be made. Those more likely to survive will be the lucky ones prioritised for treatment. In other parts of Europe we are hearing from nurses openly saying that patient age is currently their first decision maker. Whilst this goes on everyone is at risk, not just those vulnerable to disease complications from the virus. And as people realise this they are finally staying indoors, because now it affects them instead of ‘just’ the vulnerable. <sigh>
As Terry Pratchett pointed out we can be pretty intelligent individually but get us in crowd mentality and we can be pretty stupid. Everyone for themselves and reacting en masse. We see a difference in the underdog groups though. By definition we need to come together to survive because as individuals we don’t count. And we do that as best we can in the face of whatever the masses are doing.
Those chronically ill patients that are also ill with potential COVID-19 are reaching out. Some are in hospital, some at home. Those of us that have any info on potential mitigating factors are sharing them, and there’s a whoooole lot of unconditional support between crip besties. It’s still not quite feeling like spring yet though and winter beats us up to a desperate symptomatic heap of non-functional. Many of our pals haven’t come out of winter shut-down yet, they’re still trying to get to a level where they feel they can communicate. We see posts from them before we get messages. If there’s posts we are reassured, when even those go quiet we know they’re having a ridiculously tough time. Suicidal thoughts are not uncommon for people living with such endlessly intense issues impacting on them, we are used to talking to each other about such stuff. I post stuff regularly and know that my pals are reassured by that. My healthy pals have a different concept about that than my fellow patient friends, they tend to see this as a sign that I’m ticking over okay or at least mostly coping. The latter group know how much I’m struggling not because I tell them more, but because their insight into the reality behind my posts is razor sharp as a result of their own experience. I’m not saying I get suicidal btw, I’ve been there and come through it by my own decision (those that have been revived by medics or talked out of it by others have a high risk of recurrence whereas I’m a stubborn old bint who made a Decision, damnit!) But I’m saying that it’s not uncommon for the chronically ill, and understandably so. And then the government and media declared that it’s okay, only the vulnerable will die. It’s okay. It’s only us. We have no value. No worth. And here’s that other uphill struggle. Where society says our value is in ‘what you do’ in society, for a living, to earn money. It’s bollocks of course, but it’s internalised and takes some (a lot of) routing out. We have to band together to acknowledge each other’s worth, lift each other up, encourage each other. “Keep going.” ” I’m here.” “You can do this.” and that gem of a friend who says “how can I help?” , listens to you turn down their help numerous times with very sensible reasons and then does their own well-informed damage assessment of your situation and, when required, says “tough, I’m helping you anyway!” We have to counterbalance the damage that general society does to us, by sidelining us when they’re not actively punishing us for being ill (I’m not getting into that here, but trust me, benefits assessments are not accurate, people who look ‘normal’ can have genuine need of a disabled parking bay, not being allowed to events because they haven’t made buildings accessible to everyone etc, it’s very restrictive and punitive for a group who are already being punished 24/7 by their own bodies)!
Suffice to say being chronically ill a) sucks, b) results in invisibility / disregard / exclusion and c) stop buying all the Things!
I need tea.
Anyone else fancy a cuppa? Kettle’s going on (when I can physically get to it) xx
Pencil sketch of me with crossed eyes determinedly trying to make tea. The thought bubble says “must…make…teeaa”.
Feeling hopeless and unmotivated…what the…? I always had the motivation to do my daily paced physio’. For yeeeaaars. It’s towards my quality of life through pain management so why wouldn’t I?
Brain chemistry may be part of the problem, though….
When we’re chronically ill we tend to get through a lot more neuro-chemicals than we used to. There are constant symptoms and sussing how to manage them as we go along – should I attempt this now or later? If I do it now then this, but if I do it later then this. If I take that med/supplement or eat some food or do that physio first then it will impact it like this or with those variables maybe like this. So I’m thinking maybe I should do this but with these provisos and that back-up and constantly monitor symptoms and be ready to adapt at any given moment as things pan out…. etc etc. There is a huuuuge amount of chemicals getting used up just trying to do the most basic of things. Then if we try to do anything other than the usual getting through the day stuff we decline faster and take longer to recover.
Back when I was studying I found that I will consistently lose my brain if I use it. Not the adage we more often hear of ‘use it or lose it’ eh? The more I use it (more time, more intensity, more challenge – any of those will do it) the quicker I’ll lose it and the longer it will be down for. My fellow CRPSer and blogger, Isy Aweigh, employed her nurse skills and suggested I need more dopamine to help my brain replace the neurochemicals I was using up. To create more dopamine, I need a source of phenylalanine. Us humans can’t make it internally, so we need it from food sources. I’m a veggie so meats are out, but aged cheeses are another source. And they helped. Significantly!
It’s several years later though and my neuro’ dysfunction has been telling my immune system to react to all sorts of things, one of which is cheese so that’s that one out of the window!
I was chatting with the same pal the other day about my uncharacteristic lack of motivation and overwhelming sense of hopelessness about how I simply can no longer Brain long enough to do the research work required to gain any useful health support from medical practitioners. Guess what I might need? Yup, dopamine! Seeing as I’m still a veggie (that’s not gonna change) and that I can no longer eat any solid cheeses I’m quite possibly deficient in the phenylalanine that I need to manufacture the required dopamine. It turns out there’s a supplement for it, who knew?!
After doing a quick bit of research (very quick, my brain falls over soooo fast these days) I found that the natural source found in foods is L-Phenylalanine. It’s not only used to make dopamine though, it’s also used to make other neurochemicals: adrenaline (epinephrine) and noradrenalin (norepinephrine) but it would be weird if balancing neurochemistry was easy, right?! We always need to consider all potential impacts and contra-indications (negative effects on med’s we already take) of any new med or supplement before we start taking it. In my case my ANS-balancer is an SNRI which inhibits the re-uptake of norepinephrine to reduce my flavour of dysautonomia. I was doing well on it until this potential phenylalanine shortage so rather than mucking up any previous balances, the supplement should (if it’s needed) return my neurochemicals to their happier levels.
There is also the artificially manufactured D-Phenylalanine which may well help with the production of dopamine as well, but it looks like the science isn’t completely in yet. It may help with pain however, and the side effects do not outbalance the potential for me personally so the standard mixed DL- supplement looks like it’s a Go.
Symptoms of a deficiency in phenylalanine pretty much describe my current state. Confusion – ohhhh yeah. Lack of energy – in the extreeeme. Decreased memory – significant, noticeable and upsettingly so. Diminished appetite – er, kinda, less appetite and depressed so I’ve been eating sugary stuff on hand and am now unable to fit into my shorts this summer. Possibly any summer. My first significant over-waistband roll. Oops.
I also found out that more than 5,000mg of DL-phenylalanine per day can cause nerve damage. Soooo I’ll be taking less than that then!
I ordered some DL Phenylalanine (a combination of the natural L- type and the manufactured mirror imaged D- type) from my usual reliable supplier of quality supplements and I’m gonna see if it helps me at all. Recommended is 1 x 500mg tablet per day. Not sure if that amount is gonna give me much Brain Time but it’s a place to start. I consulted one of my science whizz friends (fellow blogger the Hypermobile Hobbit) and she has raised a very important question – what’s the ratio of D- to L- in the supplement I have? Good point. L- would be more readily used by the body, so I’ve asked the supplier and am waiting to hear.
First, I figured I should list my current issues so that I can look at a before and after picture. Here we go, this is where I’m at:
Utter fatigue, all the time
No brain. Like, really no brain. I struggled to order two photo prints from the usual website we use. I managed two and then couldn’t understand the website anymore. Had to ask Magic Dude to take over.
When I’ve got no brain it kinda hurts. Sort of like a headache but different.
No idea what the heck is going on a lot of the time, can’t understand concepts, sentences, sometimes takes me awhile even to figure out the meaning of individual words.
Memory shot to pieces. Have got used to not remembering anything now. Whole events/days go missing. Previously I would randomly forget ever seeing entire films but it’s so much worse than that now. I even think of something like ‘I must tell Magic Dude this’ and instantly it goes – I have lost the thought less than a second after I had it and he’s sitting right theeeere, it’s not like I had to remember it for any longer than it takes to say it. Really distressing.
No motivation whatsoever. Just an overwhelming ‘it’s too hard to sustain’ and ‘what’s the frickin’ point, anyway?’
Endless migraine. Relentless. Can’t do anything that doesn’t send it soaring except for prop myself up on the sofa in front of the laptop raised on its over-my-legs stand and there’s very little I can do in that position because I mostly have no brain.
Want to bury myself in something creative but not enough brain to finish any of multiple blog posts I’ve started over time. Tried sewing and it’s great but it sends the migraine soaring so can only do that for a short while once a week or so if I’m lucky.
Lots and lots of physical health symptoms that are hard to grapple with but I’m not listing them here as that’s not the focus so much as how I’m dealing with them (or not). I’m down in the dumps about coccyx pain being permanent, about near-fainting all the ruddy time, about not being able to choose to do anything useful or anything nice/fun, about not being able to go to Tai Chi classes or even manage any at home since my fall injury a year and a half ago. Yeah, really really down for a long time now. Not like me at all but I’ve been avoiding everyone online because communication has become so hard. I’m on a veeeery long waiting list to see a neuro’ and trying to cope in the meantime. Coping isn’t viable so I’m aiming for ‘exisiting’. That’d be a win, right?
Being near fainty all the time means I’m not safe to drive. I can’t get out of the house at all. I am completely independence-free. I managed to drive round the corner to collect prescriptions a couple of times in the past year or so but it took all day to try to get my body functional enough for those few minutes of driving and then there’s the lengthy negative health impact of that to work through afterwards.
Coming up for 19 years with this neuro’ condition and this will be the first time I’ve *ever* been referred to see a neuro’ – see why us CRPSers feel so flipping hopeless at times? It’s hard bloody work trying to get basic care because wiring issues are barely even touched on in medical school. Plus – most neuro’s are brain neuro’s and don’t deal with wiring anyway so this eventual appointment will either be really helpful or an utter waste of time and end of the road on any medical help for me. I could cry. But I’m too numb or dead inside or something.
Footnote: Magic Dude is a, er, magic dude! He’s been getting me out of the house whenever he can in any ways he can think of. I have noise reduction ear-plugs which reduce volume and help my processing and migraine management. So he’s taken me to the cinema, a concert, the Outdoors. We’re sick of sitting in coffee shops but that’s all I can do most of the time. But coffee shops exist within garden centres so that adds some extra interest (and buying plants is a temporary retail high). I’ve posted pics for my friends of anything I’ve seen outside the house to share that moment of joy but realise that doing so hides what’s really going on. But there’s nothing they can do anyway, and I’m struggling to read and understand stuff as well as piecing words together to form a reply, so messages can actually be quite stressful if they require a reply.
Oh. I’ve just re-read that list and realised that it’s basically what was happening when my Mum was trying to suss stuff out, got totally wrong concepts about me and disowned me despite my repeatedly saying that I didn’t understand what was going on. Okay. Arse! I’m back there then, eh? Big neuro downslide. Right. I came back a fair amount from that one, let’s see if I can pull the rabbit out of the proverbial hat this time as well with more help than just flukey luck back then when I found I improved a tiny bit from (unknowingly phenylalanine-ish) cheese sandwiches!
Depression is kinda like drowning – it doesn’t look like what you think it looks like. It’s smiling whenever I can, making lots of jokes, going full-on distraction when I’m alone (Lord of the Rings Online), pretending I’m okay just to try and get through until the appointment that’s many months away, yet to be scheduled and which might utterly let me down.
But it might not. ‘Just keep swimming’, right? Ugh!
Next morning: I just re-read this to make sure it made sense then opened something else up on my computer. I felt like had been doing something else but couldn’t remember what and it was really bugging me. I had been re-reading this. Like, a second before and couldn’t remember doing it. And yet after writing this post yesterday my brain accessed the disowning distress from years ago, pulled Bjork’s ‘State of Emergency’ out of it’s vaults and sang it to my dysfunctional fight or flight self til 3am. Gawd this supplement had better help!
Okay, the DL phenylalanine arrived yesterday: 25th May 2018.
Let the experiment begin.
I’ll come back and add how this list looks in a couple of weeks….
Day 1: Shortly after taking the supplement I found myself skim reading two articles in the Psychologist mag, whuuut? Then my brain keeled over, back to ‘normal’.
Day 2: Already using my brain trying to post this when I took the tablet. That weird head tensiony not-headache going on. Not sure I’ll get much impact this morning.
20th June 2018
Okay. Phase 2 started about 5 days ago. Here’s where I’m at:
No major changes on just one tablet per day so phase 2 is an increase to two (one after breakfast and one after lunch, though with health varying these meals vary pretty wildy timewise).
However, I didn’t mention something in my list of symptoms above because if I listed all my symptoms you’d fall asleep trying to read them! Yet it seems to have improved a bit since taking the phenylalanine. No idea yet whether this is causal or coincidental, time will tell.
The unmentioned issue is that since my fall injury I’ve been reacting badly to certain things. I experience near-syncope, nausea, facial drooping, limbs powering down, slurring, eyes flickering independently of each other, dystonia in my legs. The triggers all seem to be when there’s too much for me to process i.e.:
motion (in a car, worse on narrow and/or windy roads, first person gaming)
flickering lights (florescent, daylight through trees when I’m travelling)
audio input at the same time as motion impacts harder and quicker (e.g. music, radio, audio book)
I’m hoping the supplement is related to the improvement in how well I cope with motion. All I can do is keep working through phase 2 and see what happens.
I received a hand-made Christmas card from a friend I haven’t seen for ages. It gave me such a lift.
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Now I find myself hopefully checking the doormat every day during the run up to Christmas.
Being chronically ill means we’re often lonely. We’re feeling separate from the world that we used to move around in. Every day I check the doormat because a card sitting there would be such a wonderful lift and would help me cope with the long symptomatic Groundhog Day stretching ahead of me. The thing is, it’s hard to write cards when you’re chronically ill. Using what little functionality you have to do so means you can’t do other things. Which is the same for everyone of course but when it comes to illness it’s not about losing time it’s about losing functionality to do something really key, like being able to eat dinner. And whereas missing out on basics like eating isn’t the best for healthy folk, it’s much more severely impacting on an already malfunctioning body.
From a healthy person’s perspective, it’s not that they’ve consciously decided not to send us a card any more for Christmas, birthday or whatever the occasion may be. Well, okay, for some people it might be. It’s not an unusual human response to think that they’re not going to send cards to people who don’t send cards to them, but mainly it’s very usual to not understand what it’s like to be chronically ill.
Being absent from friend’s lives makes us fade into the background because they have other friends they see regularly. Whereas for us, well, we don’t generally get to see our friends. Travel is erm, difficult (one heck of an understatement, I know) so we see whoever we actually live with… and medical practitioners. (Sooo many medical practitioners). Oh and walls. And ceilings (those of us with Dysautonomia tend to know some of our ceilings in quite a bit of detail)! We don’t tend to get to see anyone else. So the friends we haven’t seen for years can be just as important to us now as they were back when we were able to see them in 3D. They do not fade into the background because our foreground is mostly illness, they stand out in the bright and colourful areas that we like the most.
Potentially a healthy friend and a chronically ill friend can perhaps feel very differently about each other. And it’s hard to feel ourselves being faded from their main friend space when they are often still our main friends.
We can’t help hoping for indications through the post that maybe they haven’t forgotten us either, that even though we are ever-absent from their lives that they still somehow care meaningfully about us.
There is a paradox when we make that massive effort though… “I’m determined to write cards this year…” knowing full well that we’re going to make ourselves more ill by doing so: the cards that plop onto the doormat are more often a response to the card we sent rather than something that would have been posted otherwise. So then all that effort brings us a bitter-sweet moment. A card that is meaningful to us and yet never would have arrived if we hadn’t managed to send one ourselves. We learn that when we can’t write cards there are very few people who will still remember us regardless, but we push ourselves every year because we want to send people some love. We don’t write cards to receive them, that is most certainly not the point. We try to write them because our friends mean so much to us. It’s human to feel somewhat bereft when it appears that regard between friends has become imbalanced and yes it’s not actually about cards at all, despite how we tie ourselves in knots trying to work out if we can physically afford the impact from writing them. It’s about connecting with friendships at meaningful times. About feeling loved and included. That we’re still of some importance or significance to them. And it’s about feeling a little less alone at a time of year when loneliness can be most difficult.
In the end we have to be kind to ourselves. If it’s going to reduce our functionality to the point of being even more impaired in meeting our most basic needs then we shouldn’t be pushing ourselves to do it. The reality of not receiving any festive cards is an extra sadness in the overall cruddiness that is being really ill all the time, but we really need to manage our health. Fortunately our pals who also happen to be fellow patients totally get it, we support each other and reiterate our friendships online. Thank goodness for the internet! Though we still try, and each year some of us will succeed in writing a few cards and asking someone else to get us stamps and post them for us.
Interestingly, I find that my doormat is more likely to be graced by completely random arrivals that have nothing to do with yearly events. These are perhaps the most beautiful and lifting kind. When someone has thought of you just because they have, not because you’re on a list. The arrivals tend to be from a few astoundingly thoughtful friends who I either rarely see or have never even met in 3D. These are the heartwarmers. The ones who make us smile just by thinking of them. They are most commonly fellow patients who understand in depth what living with chronic illness is like but who send something because of the love in friendship, not because of the illness we might share (even when what they send may in fact be totally related to our illness, and is super thoughtful and aware because of that too). These arrivals are overwhelming because we know how much it has cost them to do this, and they chose to do it anyway. Love is priceless.
Like these metal drinking straws sent to my by ‘The Princess in the Tower’ so that I can still get some enjoyment from a cup of tea when I cannot raise my trying-to-faint head.
The other arrivals are from that rare breed of healthy friend who sees the health stuff, does their best to understand it but still sees us in here as well. We’re not just a walking illness to them, we’re a friend they love. And because they love their friends, seeing us so ill pains them terribly. But seeing us in here too, gives them hope and helps them cope with the illness stuff. They have to keep their distance to cope, but they don’t stop caring. I don’t think they know just how rare they are, many patients can count these friends on less than one hand.
Contact from those who still genuinely know us and who handle the illness that comes with us as best they can (effortlessly, in the case of fellow patients) means more than a token reciprocal card. People are insanely busy at Christmas. We get forgotten because they are buried in Stuff and they don’t actually see us in 3D. But those blanket text messages and occasional private social media messages that we receive instead mean the world to us. After all, we do the same. It’s better for our health to do it that way and we know that our sentiments are no less for having sent them out en masse, so we know that receiving friends’ messages like that are just as genuine. We may not be able to hang them up and look at them from wherever we are stuck dealing with symptoms that day, but they warm our hearts nonetheless and that’s way more important than warming our doormats.
The yearly paradox persists though simply because it’s nice to be able to send cards to the people we care about. To show we are thinking of them and give them something they can put up in their home instead of read once on their phone. We’d like to be able to be a bit more present in their lives that way. And we’d like to experience being on the receiving end of that, too. Let’s try to be kind to ourselves and allow us to send the messages to those we love in lieu of writing symptom-amplifying cards, or sending a selection of carefully chosen emojis or a voice message in the case of those patients who experience enormous impact from using their hands. Says the hypocrite sat here surrounded by cards that I hope to write.
Every year. <headdesk>
Happy festivities to you all whichever they may be. Be kind to yourself, there are people out here wishing you well and who are dancing the paradox with you.
I damaged my coccyx back in January but I have a pre-existing intractable pain condition (CRPS) so I don’t show how much pain I’m in. It’s a habit that’s developed over the past 18 years of living with severe pain all of the time. Only my boyfriend can clock when the pain is beginning to soar, those of my friends who think they can see when I’m in pain have no idea that by the time they spot it I’m on the verge of inward screaming.
So if my own friends cannot see how much pain I’m in how is a doctor who rarely sees me supposed to comprehend my reported pain levels when they don’t match my outward appearance?
Most practitioners (including pain management teams) will use the 10 point pain scale. But it’s hard to convey what our understanding of that scale is.
When I was first seen by a pain management team aaaall those years ago I was told that a 10 was the worst pain that I could “imagine”. I’m pretty imaginative! And besides I figured that even though I had reached the stage of realising that if someone offered to chainsaw my legs off with no anaesthetic that I would have said ‘yes’ in my desperation I still figured that there must be experiences out there that are even worse than that. So I rated my pain at a 6 when I now know it was a baseline 9 with regular 10s.
When I had completed the maximum allowed NHS pain management treatment time I knew that my baseline pain had reduced a bit so I felt I ‘had’ to rate it less than my starting ‘6’ so I rated it at a 4 when it turns out I was actually getting discharged at a dreadful baseline (i.e. what our pain levels never drop below) of 8. So yeah, the team probably thought they did pretty well and I didn’t know why or how they expected me to be pleased and able to cope/function thereon after. *sigh*
Miscommunication is easy when a scale is subjective.
Being told that a 10 is the worst pain we’ve ever felt doesn’t usually help much either as with a severe 24/7 pain condition the likelihood is that thisis the worst pain we’ve ever felt and that just leaves them with a 10 which they often don’t feel is very helpful even though we’ve answered within the parameters.
So… I figured (years later) that I had better find some descriptors for each number on the scale. That way I could share those with my doctor so they could see what pain levels each number represents for me. It makes it easier for them to understand what their patient is actually dealing with so it’s useful input for their assessment.
I collected various descriptors from multiple medical sources and started recording my pain (and other symptoms) in accordance with these. My doctor ended up with several weeks worth represented in one easy-to-assess graph which showed clearly my pain baseline as well as how often and how high the pain spiked (I wrote about that, and first shared my less prettified pain scale descriptors, here). Doctors have a mere few minutes to talk with us so it is helpful to be able to present data in the most accessible way for us to get the most out of an appointment and for them to best be able to understand and help their patient in the time allowed.
It helped me. It helped my doctor.
Especially as my high level intractable pain has been with me so long that I tend not to ‘look’ as bad as I feel. Though after making it to the surgery, through a conversation and then home again I usually find that by heck it shows by then. The doctor doesn’t get to see that bit because we chronically ill have to be at the best we possibly can be to be able to hold a conversation well enough for the meeting to be useful. It is necessary and yet very misleading.
So, here’s my compiled pain scale descriptors in a more user friendly format that when I first wrote about them. I hope that it may prove useful to patients and doctors alike. The reason the compilation is more helpful to me is because when one aspect of it doesn’t pinpoint it well enough another aspect will help me figure out where I am on the scale. Pain interferes with decisions, assessments, pretty much any processing to be honest! So I find that the higher pain level I’m at the less capable I am of accurately placing it on the pain scale. Particularly helpful to me when I’m really bad are the points at which tasks and then concentration get affected – I know that tasks are being affected but when my concentration is being affected it takes longer for me to actually realise that the reason I’m struggling to pinpoint my pain is because… my concentration is being affected!
Trauma impacts on us at the time (by initiating our fight or flight survival responses) and over time (impacting on how that system responds to certain stimuli). When in a state of fight or flight one part of the nervous system goes into overdrive to do practical things like getting muscles oxygenated for running and dodging. It doesn’t need our body to worry about mundane things like digestion at the time, so the other part of the nervous system which calms things down doesn’t get stimulated in fight or flight scenarios.
That calming part of the nervous system is strongly associated with the vagus nerve. Patients with dysautonomia have faulty nervous systems and so they often have a variety of misbehaving automatic body processes that all stem from the faulty messages the system sends to our brain. Our brain responds appropriately, but, as the messages were wrong in the first place, the brain’s resulting instructions are inappropriate and often make matters worse. This is an ongoing, circular issue.
One aspect of having a faulty nervous system is that the fight or flight tends to not work properly. The tendency is for sympathetic (activating) nervous responses to be overdone and parasympathetic (calming) responses to be underdone. As a result, fight or flight is a pretty common experience for many dysautonomiacs.
A fellow blogger over at ‘Healing from the freeze’ wrote a post back in 2011 which I’ve belatedly come across. Tracy Andrews is an acupuncturist and was looking at the involvement of the vagus nerve in trauma, namely that it kicks in to help us cope by kinda distancing us from the pain, and that mindfulness is therefore very difficult in trauma patients. She also points out that this is important on a physical plane, not just an emotional one, as the experience of trauma affecting the vagus nerve means that we feel a visceral response (a ‘gut reaction’) to trauma. That physical pain and discomfort is now recognised as part of the trauma experience. If this sounds weird just think of how normal it seems to us when we see a TV character’s response to something horrific is often to feel sick or even to vomit. It’s our innards functionality getting disrupted by the nervous system that causes this kind of physical response.
My reason for this post is to inform both mainstream and ‘alternative’ practitioners of the Dysautonomiacs’ experience to trauma as being very different from that understood as the norm. We need professionals to work from a base of understanding that our trauma response is very different from what’s expected, and that any trauma treatments aimed at reducing vagus response and removing the traditional blanket of numbness is actually the exact opposite of what is needed in our case.
Our vagus nerve doesn’t work properly! We regularly get fight or flight responses over the most stupidly small things, but the impact of that is not fleeting or brought under control with ease or automaticity (coz we don’t really ‘do’ automatic processes, or at least we tend to have a diverse array of faulty autonomic responses).
When we experience trauma, we feel all the same gut wrenching pain and anguish that anyone else does, but we don’t get that numbing sensation that often initially shows up after a shocking event. We simply continue in the same high level of distress and cannot find a way to bring that level down.
I wasn’t always a dyautonomiac. I have experienced the vagus calming impact. I know my nervous system is a sandwich or two short of a picnic these days, but I’d never consciously applied that knowledge fully to my two year long stint of living in permanent gut-twisting distress. I even described it as like being ripped apart from the inside out and as being physically painful and yet never fully made the link until reading Tracy’s post. It was non-stop 24-7 and I struggled to function and to make sense of things around me. I have always looked at those years as being ‘nervous system stoopid’ and though I acknowledged that it was a physically painful experience and that science backs up that trauma causes physical pain, I had not consciously tied the latter in with the vagus nerve specifically. Not surprising really as when in fight or flight, higher brain functions don’t get supported any more. Brain-computer says “no”! And as I experience a lot of fight or flight effects (it’s a continuous management issue) I don’t get much Brain Time these days.
A specialist confirmed that my fight or flight switch was stuck in the ‘on’ position and had been for a long time. Let’s just drift over the fact that scientists reckon that the fight or flight response is, yes, useful, but damaging if ‘on’ for more than two minutes straight. My several months of whackadoodle respiratory processes seemed like nothing after the two years of not knowing what was going on when my Mum disowned me. Those two years are what are foremost in my mind as I write here about the physical pain of trauma. No trauma I’ve ever experienced was like that and I was in a perpetual state of fight or flight that made it very hard to get through from one second to the next. Many months of being ‘on’, followed by years of being ‘on’, permanently having to monitor and manage my symptoms because my default is now for my fight or flight to be, yes, switched on. You see how far removed we dysautonomiacs are from the trauma ‘norm’?
Interestingly, the one thing I found that didn’t help exactly but kinda almost got me through each second at a time, was what I now realise was my own attempt at the numbing/blanket effect that my nervous system wasn’t giving me. I’ve written about this tool before but not from a visceral perspective. It didn’t come anywhere near being numbing in any shape or form but it helped me to survive through each moment. That thing was to play an immersive console game, when I’d never been a gamer before. I mean I’d played Sims occasionally, but not what I thought of as ‘proper’ gaming, heh. It was a couple of Bethesda open world games (Oblivion and Fallout 3 as it happens) that were non-restrictive – you can go anywhere, do anything. There is a central storyline, but you do it whenever you feel like it, leaving you to act on whatever is most effectively stuffing your brain with ‘other’ at the time.
Understandably my system is mega-faulty after that incredibly prolonged period of flooding my brain with chemicals shouting ‘Alert! Distress! Danger!’. It was going downhill at the time; hence the misunderstandings and miscommunications, but that one event pushed everything skyhigh. I now have to take neuro’ meds to help stabilise my autonomic nervous system. They don’t magic the malfunctions away, but they do help to reduce the extent of their impact significantly. I still have to be very careful about how I manage my brain and body when I feel the responses going doolally (which can be multiple times a day).
The key for practitioners (and self-advocating patients) out there is to understand that this difference in neural response post trauma is significant and treatment needs to be appropriate to each patient’s wiring. The wiring in dysautonomiacs is wonky so the treatment has to be on a proportional incline!
This is why rare disease (and rarely known disease) patients use the zebra pattern when awareness raising
If you’re a fellow patient experiencing fight or flight issues then definitely talk with your doctor about it. If they don’t realise that the nervous system is affected as part of your condition then have a look through my FAQ of links and research in case there’s something there you can print off to help them understand. Please note: doctors are trained to learn from science so general media articles won’t be of use to them, so go for the research papers when you can, medical practitioners are totally used to working with those.
My fellow blogger, Isy Aweigh (over at ‘Living anyway: Life, CRPS and Everything‘), kindly checked this post for me before publication coz, as it turns out, writing about the fight or flight response, yes, you’ve guessed it… sets off my fight or flight response. My thanks to Isy for making sure this post made sense (and for adding a truckload of commas to slow me dowwwwwn)!
Showing the post to a fellow patient before publication meant that we found we both have similar experiences with trying to calm our nervous system down. We both find the type of mindfulness that focuses on the ‘physical within’ pretty useless. Our innards don’t play well with others and it seems that includes our conscious attempts to calm them so we have to take a more indirect approach. Our approaches are specific to us as individuals but there is a lot of overlap because we utilise what happens to calm us, rather than focusing on calming. For me I pretty much go through them in this order:
I can use breathing techniques but it has to be with a QiGong (Chi Gong) focus for me. I can’t focus on the breathing itself, it has to be on pushing my stomach out to draw my diaphragm down. I imagine I’m drawing energy in with the breath and down to my stomach, it gets drawn down through my body to the front of my stomach then down and round to come back up towards the back of my body and leave through my mouth again. Keeping whatever energy my body needs and giving the rest back to the universe. Pretty calming no? Well, it helps me a darn sight more than focusing on my breathing does because I need to be calmed by what I’m doing, not to try and focus on calming what doesn’t like to be calmed. Focusing on what’s wrong and trying to correct it doesn’t work for me, I have to come at it sideways.
I think of Magic Dude which both lifts and calms me with love. I realise that I’m currently pretty lucky to have someone like him in my life, but if he wasn’t I would do the same thing with my most precious of besties.
I think of my eventual art area, in our currently partly renovated home, and it makes me smile. It is going to enable a return to a great joy of mine.
Doing some Tai Chi would be my best option for sure. It wins by faaaaaar! When Tai Chi-ing my mind is occupied with that alone. It is a moving meditation and supremely calming for me. My pain condition means that for most of each day that simply isn’t an option for me, so…
I run through Tai Chi moves in my head. Research has shown that clearly imagining movements in our heads actually strengthens the neuronal pathways that we would use if we were actually doing the moves physically. So it’s not surprising that thinking through the moves is almost as calming as performing the moves with our entire body.
The reason they’re in this unexpected order is because fight or flight wobblers can occur anywhere. We need simple on-the-spot options that we can do without drawing attention to ourselves. It’s not helpful having to prioritise answering questions over health management, so subtle is handy but also much needed when activity is restricted. So Jedi mind tricks are key! 😉 But yes, I will break into Tai Chi anywhere if I need to or if I simply feel like practising! I’ve been known to Tai Chi in supermarkets, D.I.Y. stores, car-parks, you name it! And people tend to not interrupt when you’re being that weird! Hehe
But that’s just my own array of tools. I wonder how much we all overlap with the approaches we’ve developed which work for each of us?
Family has to have a broader meaning or I wouldn’t survive. I put on a good front but what silently rips me apart everyday does so even more relentlessly at this time of year. So many of my fellow patients have also been disowned by members of their family, courtesy of neuro’ symptoms and the resulting accumulated misunderstandings. It’s a horrific ‘norm’ but I never thought my family would be that kind of normal. We were so close for so long. Two family members outright believe I’m some kind of opposite of me, one has never said what they think but hasn’t acknowledged any messages or even my basic existence since the others disowned me. One definitely knows I’m still me and I am blessed to have them in my life.
Family is those we care most about and who cares most about us. Some of those I care most about think bizarrely incorrect things of me which is a daily torture I struggle with. But the rest of the people in my life know who I am and their (your) mutually reciprocated love and care is what helps me to keep going. Thank you. For just being you. I love you being you.
Like many other patients I keep thinking that one day this nightmare will end. That those three members of my family will wake up one day and remember that I’m me but after, what is it now? Five or six years? I try really hard not to remember how long it’s been. After this long I have to find a way to let go of the need for that to happen whilst still keeping hope more generally. I have to find a way to stop the ‘why? wtf? how-is-this-even-possible? argh! I-can’t-cope-with-how-wrongly-they’ve-got-me’ going round and roouund my head each day.
I live by distraction. It’s a chronic illness tool for survival which I try to apply to this kind of pain as well. Distraction is the only way I keep going in this regard but at this time of year when Magic Dude is at work and I can’t phone my Mum to wish her a happy Christmas because she’d hang up on me over stuff I don’t even understand, well, it’s a whole new level of hurt and confusion.
There’s aspects we hang on to in the hope that an answer will magically appear. In my case I’ll likely never find out what the confusing conversations were taken to mean. They were during my neuro’ downslide which was reducing my processing so swiftly that none of us stood a chance of finding out about that before it affected communications and interpretations. And why hang onto that? Even with the med’s that I have now I can’t read the explanatory email because my fight or flight still responds by trying to make me pass out. I actually tried to reply to that email in the beginning. We often try to deal with things as we would have pre-illness because we don’t realise at the time how cognitively compromised we can be. I made that mistake. I would read one paragraph then battle not to pass out and then, once I was vaguely upright again, I’d attempt a reply to that one paragraph without realising how severely my processing was being affected. It took me three months to write a reply because it took so many days to recuperate after reading each paragraph. You’d think I’d have cottoned on but I just thought it was the extreme distress causing it. I’d never been disowned before, but I’d never been so cognitively compromised before either.
To this day I have no idea what was in the email I received or the one I sent and as I can’t read either without getting severely symptomatic I have to accept that I am unlikely to ever know. And I think this is the issue for so many in this situation – we never get to resolve it, we never get to correct each other’s misunderstandings. It remains an open case. There’s no real understanding of how this came to be, it just happened one day out of the blue and that’s why we struggle to find a way forward. Because it’s not just the loss, it’s the fact that the loss seems so random and inexplicable. Being unaware of any comprehensible reasons for such an extreme life decision makes it a lot harder to accept and cope with. And that shock never seems to go away. Every day it slaps us in the face again. Having a faulty nervous system sucks.
One thing I do manage though is to hang onto what was. Before the inexplicable. Maybe that makes it harder in some ways but it definitely makes it easier to not implode entirely. I remember when Mum knew who I was. All those years, all that love, all those shared experiences – they are not erased and they’re not changed to fit with my new reality. They are a part of me and of my journey to who I am today. Admittedly who I am today was also massively impacted by being disowned but I do not have to let go of those good memories to deal with the confusing past few years. The good and the bad times are not mutually exclusive, they can co-exist Shroedinger style. Which can also be upsetting as the contrast is so extreme. But it forces me to look at the now. What I want from life in it’s current reality. And prodding me to keep focused on the present is no bad thing at all. That’s where life gets lived after all. I want to fill it with smiles and goodness.
So in each moment – what would help with the smiles thing? If I find I’m a bit stuck… planning housey stuff and sketching ideas (refocuses my mind to positive developing stuff), arty stuff (currently embroidering my first ever home-made curtains, they’re gonna be the prettiest bodge-job ever 😉 ), playing Lord of the Rings Online (it’s currently the Yuletide festival on there!), Facebook (connections with friends), online ‘window’ shopping (pretty stuff!), sometimes I can handle some music (maybe something enthusiastic like Florence and the Machine’s ‘Dog Days are Over’ or perhaps something beautifully chilled like Stevie Ray-Vaughan’s version of ‘Little Wing’ or delightfully nervous-system-calming like Ry Cooder’s ‘Dark is the Night’). What would your go-to list be? And would it be helpful to have that list up somewhere so that you can see it when your nervous system is raging or the thoughts are circling endlessly round and your cognition needs a helping hint?
This post was prompted by the first acknowledgement of my existence in aaaall this time by that one family member: today they removed me from an old message group. So I guess I finally have my answer on whether a) they wanted to have contact but felt caught in the middle, or b) it has been their choice to avoid me all these years. Maybe that’s helpful. I’m not sure yet. Maybe that’s one less question to drill into my soul each and every day.
I wanted to share my experience with my fellow patients so that you know that you are not alone. If you’re struggling with this kind of loss I want you to know that I ‘get it’ and I’m sending love and hugs. I am open about my loss, my distress, my confusion, my ongoing attempts to cope all these years later because this kind of stuff happens and I want you to be able to talk about it if you need to. It’s okay to talk about it. A common misnomer is that loss and grief get ‘better/easier with time’ whereas it’s really that we get better at coping with it. Of course it can be difficult to get better at coping when you’ve got a faulty nervous system that freaks out the moment that big-stuff-subject pops into your head. Hence that handy list of calming in-the-now stuff.
Getting my feelings down in writing also kind of helps. When this stuff begins to devour me I need to get it out somehow. The process naturally makes me re-assess my approach and behaviour which helps me think about what I need to work on next to better cope with the loss and confusion. There’s plenty of research on how writing can be helpful. If you need to talk and there’s no-one around at the time it’s another option to get those endlessly whirling thoughts out of your head. Maybe give it try. Poetry can be pretty cathartic so don’t be afraid of different types of writing. Write like no-one’s ever going to see it because no-one ever has to.
If this post makes you feel any better, any less alone, then hopefully you now know that it’s okay to feel how you feel. This is no easy or quick fix. We are complex beings even without the chronic neuro-illness complications. But it’s okay to feel and it might help to get some of those feelings out, whether that’s onto paper or with a trusted friend. You don’t have to bottle it up.
And if you know someone who is struggling with the impacts of chronic illness on their family attachments (or indeed struggling in any way). I want you to know that just by listening, by acknowledging, just by being you – you make a difference. There’s no need to encourage them to talk endlessly about things, (with conditions like mine that could actually rile up the nervous system even more), just being an ear and then being the much loved distraction that you are helps enormously.