Trying the functional medicine option

Hello all, I’ve been rarely posting because of the shift in my health. I took a blog-break when I moved house but when I passed out on a concrete floor back in January 2017 my whole life changed. Aaaaaall my symptoms got worse and I got a few new ones thrown in for free. Skipping the details for now because it’s not what I want to talk about. I’m following on from my last post which wrote itself when I ran out of optimism.

Like the psych’ grad I am I saw my reaction to desperate times and the devastating loss of hope and knew I needed to step back and look at a bigger picture as small changes were not going to impact anywhere near enough. The scientist in me said ‘as there is no medical support… where else can I look for medical help?’

So I was looking into alternatives and I have followed through on that. I waited before saying anything because it’s an unknown and I wanted data. I now have some, albeit early stages, which I can share with you.

For health conditions encompassing the functionality of whole systems we are often let down by the reductionist approach of mainstream Western medicine. Don’t get me wrong, it’s awesome in so many ways, but when it comes to those of us with long-standing tangled and complicated systemic dysfunctions and interactions it simply doesn’t work for the chronic aspects of our ill-health.

When complex patients present to doctors we have an overwhelming array of symptoms that don’t appear to make any coherent sense. That prompts them to question our reliability at self-reporting and to wonder if there are non-physical reasons causing us to list so many things. Even if they do believe us they are trained to triage the list of issues, pull out the most concerning one and address that. But trying to address one symptom as if it is a standalone issue doesn’t make the picture any clearer. It’s like stepping in close to a painting and looking at the left eye, the fabric, that pudgy cherub – you have to step back and take in more pieces of the picture to see what it actually is.

This pic was created regarding pain but our array of other symptoms is this messy too!

Description: A diagram of a human form, both front and back. At the top it says “draw a circle where it hurts”. There are many many circles drawn all over both!

Occasionally we might get referred to a specialist who might know more and be able to give us more insight. In my experience this sometimes is of no help if the referral area was a bad guess, but can involve a fabulously coherent conversation for once, a practitioner who not only listens and takes what we’re saying on board but also believes us and can explain some of why this is happening to us, then they write a letter to the GP who shrugs and files the letter. The end.

The symptoms and poor quality of life continue.

And the problem here is not just that there is no treatment, it’s not even that there often is no recognition of the issues that specialists have pointed out we’re dealing with or even belief in the diagnoses the specialists have made, it’s the fact that if left unaddressed our bodies are left working harder, continuously, with no medical assistance so our fuel gets depleted and we can’t replenish it quick enough to keep up. We are spiralling but we are shelved by our GPs as if our symptoms are stable.

Most obvious in my case has been the downward spiral of never-enough-neurochemicals. I wrote about my attempts to help this here. It helped noticeably by treating the symptom but it didn’t address the underlying cause and as it continued to spiral it was no longer enough to make a difference. It’s hard to treat an underlying cause when your GP has no interest in finding out what that cause is.

Description: A sketch. On one side of a desk a doctor is waving a hand around saying “We are here to treat symptoms and side effects. That is all. I do not want you researching for causes”. On the other side of the desk the patient is doing a head-desk.

I’m specifically trained in research. I’m good at this shit. I’m a scientist so I read information and take it as just that. I never do the thing GPs are afraid of patients doing when we look for information – I don’t think that I have the thing I’ve just found information on. What I do think is that I’ve just found some information that teaches me more about the biological mechanisms that are dysfunctioning in my body but I never think ‘and therefore this is me’. For that I need a medical practitioner who can suss the reason that my body is doing similar things. It can be dangerous to assume, which is why doctors tend to whinny and rear when a patient says they’ve been looking online but, in my best Bill and Ted voice: ‘it’s most tiresome’!

It’s tiresome because many expert patients are actually trying to share useful data and information with a doctor who is fundamentally opposed to taking anything the patient is saying seriously.

So, yeah. I needed someone who would take a functional approach and look at my symptoms from a systems wide perspective. I was aware of functional medicine in the US but didn’t know much about it. Was it going to be the perspective I was looking for? Were they medically trained at all or just functionally trained random peeps?

I learnt that a functional doctor is indeed a doctor, a functional nutritionist is a trained nutritionist, a functional neurologist…you get the idea. They’re Proper! Aaaaand they take the systemic approach, yeeeeeaaaaaaah!

At this point I got stuck into looking online…

It’s made its way over to Europe and more. Practitioners have their own array of specialisms which, happily, include things like autoimmune disease, chronic pain, chronic disease… This was looking more and more hopeful.

I found so many practitioners in my locality that I got to choose who I saw by the areas they had trained in to increase the chance that they would understand complex aspects of my condition.

I emailed a functional nutritionist (i.e. fully qualified nutritionist who has then additionally trained in the functional approach and specialist areas) who is just ten minutes down the road from me. As I was going to be paying for the appointment I wanted to check they were a good match beforehand so I included bullet points about me, my health and the gaping holes in my current healthcare that I needed to fill. I ended with “…if you feel that this is not a good fit for you I’d really appreciate any recommendations you have for someone you feel would be a great fit for this kind of scenario and complexity.” because who wants to pay for someone who isn’t appropriate.

We scheduled a phone call to cover what I was looking for, my health issues, what she has to offer me etc. – no cost to me

She sent me some questionnaires online, simple tick-box ones, based on the themes apparent to her from our phone conversation. – also no cost to me

I sent her my medical history as I already have it in a neat little (hah! okay, huge) table in a saved document. She’s used to this as so many complex patients have already created tables in the hope that the information will help doctors to hear what they’re saying <sigh> .

We scheduled a 1.5 hour assessment. She came to my home last November (we had the windows open for a through breeze and wore masks as I have to shield from COVID). She stayed an extra half hour because my health situation is so complex. Thank goodness she is totally used to complex health issues because it’s people like me who tend to go to see functional practitioners. The sad bit is that the reason we go to see them is because we fall through the nets of conventional medicine.

My experience of that assessment was akin to talking with a fellow patient. As she’s trained from a systemic perspective all the things I was saying made sense to her. She was unsurprised, she wasn’t confused by the diverse array of symptoms, she didn’t question the reality of what I was describing, she didn’t distrust me or think I was hysterical. She didn’t hear how knowledgeable I am and then automatically assume I’ve been self-diagnosing online. Like a fellow patient she heard everything I said, believed it, knew it to be true, cared about it, then on top of that I found that I could use all the technical medical jargon instead of explaining stuff because she knew it already from her relevant areas of training! I found I could just skip past that big chunk of any appointment with a new practitioner because I didn’t have to explain anything! We could just cut to the main issues and get on with it. My partner was there with me to help when my brain slipped away but because I could skip all the taxing explaining and just talk about what is effectively my specialist subject these days, I made it through the appointment without neuro downsliding and could keel over and recuperate afterwards. In fact he said to me afterwards that he didn’t understand most of what we were saying to each other.

What came out of that assessment was a report on my health situation from a functional and systemic perspective with recommendations for any exercises, tests, supplements etc moving forward.

Key things to note with this is that they are only recommendations – whether I follow through with any of them is entirely up to me. This is a good thing as a lot of the tests still get sent to the US so they are expensive. The report was sent to me so I can choose whether to share it with my GP or not.

The key priority for me that came out of this was that I have chronic brain inflammation. Very clearly so. Systemic inflammation is a part of CRPS, I’ve known this for a long time, but there appear to be different subtypes of CRPS (still not yet pinned down) and I am one of those patients who rarely has any visible symptoms of my primary pain condition. There are many other patients who continue to experience swelling beyond the acute stage as a significant part of their chronic pain response. The only visible signs I occasionally get are red spots on my knees warning me that I’ve done too much (and I’m too darn practiced at pacing to do that unless it’s a big occasion) or the burning red of my periodically on-fire toes. So, I figured, inflammation can’t be that bad in my body, right?

Oops.

Back in 2008 I stopped studying because my brain wasn’t playing ball any more. When I pushed myself to complete my research before the qualification timed out I regularly lost my brain. Doctors had no interest in me earnestly informing them that if I use my brain I lose it. Even when I lost three months to it and could not process words or think straight all that time. I guess it’s testimony to my skills and knowledge that I got my Masters degree under those conditions. Yikes! And now, 13 years later I find out the never-ending downslide of my brain functionality that I’ve been asking for help with has been inflammation….that has never even been considered let alone addressed?!

The other clear issue was regarding my neuro-mediated immune responses to ‘normal’ environmental things. Western medicine had also found this and prescribed a repeat prescription anti-histamine. Effectively saying my brain is an eejut and here’s how to calm the stuff it tells my immune system to do. Functional medicine takes a step back and considers all the information to look for clues as to why my body is doing this. Increased intestinal permeability is a likely issue so then we look at what we could do that might help reduce permeability somewhat.

Description: very rough sketch of my face. My eyes are crossed. There are three question marks around my head.

And this is why I need functional healthcare. Desperately.

The functional nutritionist gave me some diet variations to test out which helped a bit, but initially barely a drop in the ocean. The specific brain supplements however, wow! Significant improvement. Even though it’s still a very small improvement overall, it has nonetheless made a significant impact on my quality of life. Let’s face it, we’re talking many years of chronic brain inflammation and that has no easy fix. The supplements are expensive and there is no pressure to try any of the suggestions she’s made but I’m so glad I did. Once I got to the low histamine diet I realised that not only did that also help but that when reading up on the issue that it basically lists, in weirdly precise detail, all my weird and mysterious symptoms that had previously made no sense to me. Okay then. More knowledge is helpful.

Next stage: more tests. I’ve left this til now because it’s expensive. After the tests arrived we were ready to schedule but the main blood array is going to tell us more if they can see the impacts… so I’ve got to return to the impactful stuff. Boo and hiss! If I’d been up for the expense earlier I could have got them out of the way and then found the things that improve my functionality. As it is I’m gonna have to knowingly lose functionality for a while and that’s not gonna be fun. At least it will be a temporary situation but ugh!

More when there’s more.

Love and hugs, x

The Screaming in my Head

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.

The 1st sketch is of two women with their heads down on their separate desks, arms hanging straight down by their sides; an arrow leads to the 2nd sketch which is of the same two women sat at a laptop behind the same table smiling.

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.

Even

          When

                    We

                              Are

                                        Screaming

                                                            On the inside.

                                                                                     – It.       Does.       Not.      Show.

A sketch of a woman with no expression (other than maybe her eyebrows are a little raised, I’m not the best artist, hehe), inside her head is a sketch of the person screaming in that famous painting ‘The Scream’ by Edvard Munch.. mouth open wide, hands to their cheeks, and zig-zagging lines radiating out from their mouth. Next to the sketch it says “Best ‘poker face’ ever…?!” and is signed “Elle and the Auto Gnome”

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.

The 1st sketch is of a woman’s face with open rounded eyes, her thought bubble says “I must try to be useful aaall the tiiime”; there is an arrow to the 2nd sketch which is of a smiling woman, the writing next to her says “OMG! I function better if I take time out? Whuuut?”

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.

Love as always, x

.

You can read my pal’s post about this here:
http://livinganyway.com/wp/2021/07/28/a-nonstop-something/

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).

My phenylalanine experiment

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!

Created for this post by the Hypermobile Hobbit

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?!

Created for this post by the Hypermobile Hobbit

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.

…

 

Update: 16th September 2022

The phenylalinine really helped….until it didn’t. And I didn’t know why. I now do…

Guess who has chronic brain inflammation?!

Ohhhhh, that explains a lot, eh?!

Systemic inflammation is a Thing with CRPS although I experience very little visible inflammation. In my case inflammation was apparent during the 1st year of acute CRPS but during the subsequent 22 years of chronic CRPS it’s not been visibly apparent unless I experience a trigger like an insect bite and then holy moly! I figured it can’t be that bad in my body. Erm, yeah.

So anyway, imagine inflammation that is untreated and unchecked. I’ve been going to my various GPs over the years asking for help with my concerning neurological issues for well over a decade now. They have never been interested. To find out only once I’ve given up on expecting healthcare for complex multi-systemic patients to suddenly be a thing is kinda gutting – if only they’d listened, right? If only they’d considered the implications of the symptoms I was experiencing, and which were continually getting worse…for yeeaaars. If only. But instead I only found out when I paid someone to assess me who is trained in coming at complex health conditions from a complex and broader viewpoint.

I’ve written about how this discovery came about here.

Trauma in a faulty nervous system

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?

xx

Coping with ‘still’ being disowned

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.

Wishing you smiles and goodness,

Sending love to you all, xx

Managing in a new home

Well, what a palaver moving home is when you are chronically ill eh?

It all started so many months ago with packing well in advance so that I could do a little bit each day during my paced daily activity. The pacing is such a crucial part of my pain management so I can’t go overdoing it as then I risk sending my nervous system back into it’s old amplifying ways. But then there’s all the viewings of potential houses, sometimes Magic Dude was at work and I had to drive myself to viewings and take pictures to show him. It all adds up and takes its toll. And it takes its toll for a long time afterwards. Trouble is it doesn’t stop there of course.

We tried to buy a place and had to pull out when we found out there were potential structural problems so we found ourselves back at square one again. Our buyer hung on (and on) (for months) and we eventually found another place, won the bid and then it took ages to actually get through all the paperwork and reach the incredibly stressful moving day. It was all so well organised by us to best manage my health issues but the handing over of the keys was out of our control. Our lovely removal guys were sat outside the new place for hoouurs waiting for us to call them and let them know that we’d finally been given the keys and were on our way. In the end it was so late in the day that they called in a couple of extra guys at no extra cost just to get unloaded in time. They were awesome. But yikes, what a day!

As I now have immune responses to loads of different things Magic Dude and I cracked on with my second paced activity of the day removing the bedroom carpet, under which was a layer of lino and under that was a layer of disintegrating black spongy stuff. It was a messy job so we wore facemasks and got on with filling up rubbish bags and cleaning the uncovered floorboards. Windows open to air it out. Mattress made up on the floor. Eeeeeevrything else shoved into the extension because we foolishly thought we’d be decorating everywhere pretty soon, haha. Silly us!

We have got loads done, though.

First things first… the health stuff:

New boiler because I need to be warm to help manage my pain levels.
– we were lucky to get a government grant via a local environmental charity and after taking some info'(including Magic Dude’s income) we were awarded an additional grant from one of the charity’s other schemes as well. The government ‘Green Deal’ has finished now but it’s always worth checking with any local teams or charities to see what’s available as they receive grants from elsewhere too. Your local council should know who in the area you could contact to ask about this stuff.

Loft and wall cavity insulation for the same reason. If I’m not warm I’m in more pain. Simple as.
– we had the work done by energy company EDF as per advice from our local environment team. Many energy companies in the UK offer schemes like this but EDF are unusual in that they are the only one currently offering this service to disabled people who used to work. If you receive contribution-based disability benefits you are not included in many schemes available. Purportedly this is because contributions based disability ESA (for those of us who happened to have been able to work at some point in the past) is more than the income based version but for me personally the addition of about £3 doesn’t make enough of a difference for this to make sense. Yes, I know, whether we used to be more ‘able’ makes no difference to our current state of disability or the help we need now, but hey, the rules are created by non-disabled people and they are politicians who don’t get stuff. What can I say?!

Both these schemes for the boiler and the insulation were brilliant. I am so truly thankful for their assistance I have no words to describe it.

Security.
– also recommended to us by our local environment team was a charity called the Blue Lamp Trust which covers England & Wales. It’s a security charity of which many employees are ex-policeman and so they really know their stuff. They help a lot of domestic violence victims as well as disabled and elderly folk. I’m home alone and non-functional most of the time so I had highlighted a security concern and said I’d appreciate some input and advice. What I actually got was lots of really good security advice on all fronts and even more than that… including two new smoke alarms, a door chain, a door bolt, three different planned fire routes for us to get out in the event of a fire, tips on how to handle cold callers (in person and on the phone), he would have given us a carbon monoxide detector as well if we hadn’t have already gone and bought one, and even some tips for avoiding identity theft. In addition to all that he was an absolutely lovely chap who used to police our area so knew it really well and he didn’t even complain when I made him a bad cup of tea!

So (for England and Wales) if you’re one of my fellow disabled or if you know anyone vulnerable (including victims of domestic violence) who would like to feel safer at home I can recommend contacting the Blue Lamp Trust through their Bobby Scheme.

Other than that it’s been typical do-er upper work!

We bought a place with the space I needed as I’m stuck at home unable to work. At the old house we had no space so if I wanted to try to do anything I lost most of my activity time to setting things up and then putting them all away again so I couldn’t actually get much done in between at all. Now we have more space so I can (eventually – once we get the boxes unpacked) set things up then just leave it where it is for next time. Reducing my set-up/put-away time and increasing my quality of life. Hurrah!

To get that space we had to get a do-er upper though. Houses ready to live in were too small and houses with space were in need of er, most things! So we bought a place that was well under our budget so we’d have some money to get it liveable, but we still couldn’t have done this without the help of the crucial grants. Thanks to the grants covering the boiler and insulation we had the money to get the dangerous old 1950s rubber wiring replaced throughout, get the two-level floor (with a steep ramp between the two where a wall had once been removed) amended to one level to stop me from tripping over it when I’m struggling with symptoms and a new kitchen (because we had to rip the very old one out to get the floor levelled).

Ta-dah! Money gone! So now we’re on to good old fashioned home DIY (‘Do It Yourself’).

Gosh I’d love to sleep in a bed! And have somewhere to put my clothes. And not have eeeeeverything re-covered in dust each day! But we’re getting there. Albeit slowly.

Our kitchen after the floor had been levelled

It’s been nearly four months since we moved in. It’s great to no longer be cooking on the camping stove and I’m chuffed to not have to wash the dishes in the bath any more although I am still washing my hair in the kitchen sink when I can stand up long enough! The shed now has a roof (storage space to reduce the amount of crap in the house!) and we’ve re-purposed the old kitchen units to go in there. I’m pretty chuffed with how that plan came together. Poor Magic Dude was so terribly down about living in such a building site so I arranged a surprise for him – his bestest mate and my lovely bruv came round one day whilst he was at work and we sorted out most of the shed roof. I say ‘we’, but that’s pretty cheeky as I couldn’t do much of course.

He was in shock for several hours after he came home and found what had been happening in his absence but eventually he started nudging me from time to time and then grinning at me! I had hoped it would help him out of the doldrums but the effect was way bigger than that as he got really enthusiastic again and threw himself at the remaining shed jobs with gusto. It was flipping wonderful for us three to be able to help him so much with a plan so ‘simple’.

One very holey shed roof!

I say ‘simple’. None of us had done anything like that before. We researched it thoroughly and then kinda made it up as we went along. 😉

After much removing of carpets, fire-hazard ceiling tiles, wallpaper, filling of holes and cracks, sanding of well, everything… we are fiiinally about to be able to paint some base coats on a few walls. In fact Magic Dude is doing exactly that as I edit this and I want to go and see but can’t get up, waaah! I’ll get to see it later though. And we still have the dyeing and varnishing of the upstairs floorboards to do (another thoroughly researched but totally new endeavour)!

So we’re getting there.

Slowly.

And my pain levels are worse because anything extra throws them out. I work hard to pace my daily activity but have found it easy to get too involved and overdo my morning physio so I then do less for my evening physio to balance it out. This then means that I’m doing different activities to usual and training my body to be more flexible on how my daily activity is grouped when it really is much more sensible to only vary one thing at a time. Still, I’ve done pretty well restricting my activity to the crucial paced time per day overall during all this change, tradesmen noise and long list of stuff that needs doing.

Magic Dude has now driven me to a few Tai Chi classes whilst he’s been off work to try and help me normalise my paced activity a little more. I’m learning a new and challenging style (Chen) so that’s a good distraction to think about between paced physios. And when thinking isn’t distraction enough to help me cope with the pain I resort to immersing my senses in Lord of the Rings Online for a while.

Sometimes I’m able to help out a bit during my daily paced physio time

So, I guess to sum up: I’ve moved home, I live in perpetual dust, I’m trying to convince my lower torso get involved in Chen style Tai Chi and I’m nearly out of the dangerous tunnels of Moria! 😉

xx

CRPS Awareness photo challenge: time

Photo challenge: The biggest roadblock in my life other than pain.

Time.

 

 

I have limited activity per day re pain management.

I have limited activity, functionality, independence per day re the worst of the Dysautonomia symptoms.

I have limited ability to think, process and get brain stuff done because when I use my brain I can only do so for a while. Then it falls over and stops functioning and I’m blooming useless until it recoups. How long that takes depends on multiple variables.

With pain management and brain time it is the unexpected opposite… use it and I lose it. Every time. Though there’s no guarantee that I’ll have any type of functionality at any given time either .

So time when I’m able to think and do is so precious because of its rarity and fleetingness.

x

CRPS Awareness photo challenge: flames and ice

Today’s photo challenge is to post something which includes flames, as they are often used to symbolise the burning pain experienced in CRPS. As I created the firey flaming CRPS awareness ribbon the other day I have put together another couple of info’ posters using that but I have made a point of adding in something else so that more of us CRPSers feel represented.

Many of us experience a different kind of burning. An icy burning. Sometimes it occurs as part of the CRPS doing it’s thing in our affected areas and sometimes it is triggered by an external source (for example I have to wear gloves to get anything out of the freezer coz it burns so much). (Wow, that’s not a good font to write about burning in, it looks like it says ‘bums’, oh dear)!

Of course there’s not really a ‘one or the other’ scenario. Despite recent research rumblings about ‘hot’ or ‘cold’ CRPS as either potential subtypes or as a way of referring to acute and chronic CRPS, many of us experience both the hot and cold burning. So for a large percentage of CRPSers the hot and cold representations are a truer representation of our personal experience with the condition.

Anyway, I have created two more info posters using exactly the same info’ but with an additional cold theme. One with an iceberg, and one with a background pattern of the icy frost that forms on glass. Here’s hoping you like them.

 

 

 

I’ll add them to the Fbk blog page as well so that if you feel they are useful to share they are at least easily accessible.

Much love from me,

x

CRPS Awareness photo challenge: my firey flaming CRPS ribbon

Day 25: to design something with the awareness ribbon on it.

I already created something simple earlier this month (which I haven’t got round to posting yet because I was running behind on the challenges) so I got stuck into the challenge this time creating a CRPS orange ribbon from a pic of fire as fire is often used as a symbol of the CRPS burning pain. Although there is also the icy burning pain as well as the deep bone pain and more, but the flames are a recognisable shorthand symbol in the community of CRPSers and their carers.

I’m uncharacteristically proud of my flaming ribbon creation! X-) It turned out better than I thought it might. So I went on to cteate this shareable poster from it. Hope ya like it. 🙂

Whaddya think? Will it do?

I really enjoyed creating this. 🙂

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CRPS Awareness photo challenge: fear and coping

Today’s challenge is to post a quote which has helped me cope. This little gem of a quote is from the book ‘Dune’ by Frank Herbert.

It gives us a choice in the face of bad things. We don’t have to accept being flattened by our circumstances. Changing our response to fear gives us back some control. We can feel our emotions but we don’t have to be overwhelmed by them.
The kind of life changes that result from chronic ill health have been described as a kind of drowning.

This quote suggests we can get through this. And we can. 💜

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