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.

bertram

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.

making-tea-with-near-fainting

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!

hoofbeats2

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

CRPS Awareness photo challenge: time

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

Time.

Suzy's photo challenge, 2015, day 16

 

 

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.

 

Firey ribbon, iceberg, graded background, info poster

 

Flaming ribbon on iced glass info poster

 

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. 🙂

Flaming ribbon info poster- photoshop saved

Whaddya think? Will it do?

I really enjoyed creating this. 🙂

x

CRPS Awareness photo challenge: regained

Suzy's photo challenge, 2015, day 11

Something I never thought I’d do again.

A bit tricky for me as if I find I can’t do something any more I don’t think “that’s it, I’ll never do that again”, – I accept that I can’t do that for now but I don’t write everything off entirely. That would be a very defeatist approach which I avoid because that’s enough to make anyone prone to depression. Besides, this neuro condition is all about change. Some changes can be positive. So there’s nothing important that I’ve written off that it turns out I can now do again during physio time. Except for… grating cheese and rolling pastry!

Heh!

The important things that I had to accept as written off are few but sadly they still stand.

But at least I can grate cheese again, right?!

x

CRPS Awareness photo challenge: happy

Something that makes me happy even though I’m in pain: nature aka The Great Outdoors.

Suzy's photo challenge, 2015, day 4

 

Also, cute babies and smiling dogs feature on the list as well! X-)

Losses and hope

There’s a photo challenge running this month for CRPS awareness. Yep, Nervember has come around again and I’m sporting my orange awareness ribbon on my bag and have matching ribbon lacing my knee-high boots just to make it stand out more. Every year I’ll get asked about it and that’s the whole point. Raising awareness amongst people who wouldn’t come across the information otherwise. 🙂

One of the challenges is to post a poem or quote which describes the losses I have experienced as a result of CRPS impacting my life. And the very next day the challenge was to post a picture about hope.

The losses challenge resulted in me just writing from the heart, that bit was natural. The hard bit has been making myself post it.

The list of losses are initially from way back (I’ve come a long way in knowledge, pain management and personal growth these 16+ years) and the last loss is just 5 years ago (please don’t worry – I’m coping. The last line is less severe these days as I have worked to find new meaning in who I am. I am still grieving, but also living again).

Losing so much as a result of an acquired turn of health is enough to make anyone depressed but CRPS is known in the USA as ‘the suicide disease’ because without diagnosis there is no treatment, no support and crucially no understanding for a patient who has mystery pain which doesn’t make sense. People just want out. It’s too much. Too relentless. Often with no answers.

But loss of neurological function is different. It’s terrifying when you find out what’s happening but before that it’s just confusing. Everything is confusing. Basic conversations become really difficult because you just end up guessing all the time. And then you try to reply with something which hopefully is on the right lines to make some sort of sense. The likelihood of misunderstandings beginning and continuing is frustratingly high when we’re going through this.

Loss of family is so common for CRPS patients that it is surprising (but wonderful) when we meet a fellow patient who hasn’t.

It’s so hard to rise to the awareness month challenge and post this. I don’t like to focus on the old losses and I still struggle daily with the latest one. Egads! Okay,
here goes…

Suzy's photo challenge, 2015, Day 6

 

And because I can’t end this post on that note, here is the post about how I eventually managed to find myself and start to re-build my life:

The way forward for me after the greatest loss was to find who I am at my core. I had to anyway because loss of family meant a large part of my identity was no longer there. So I had to rebuild with me at the centre instead. It felt very alien to do so, and was rather like a rollercoaster ride but it was worth it.

Knowing who we really are at our core is one thing but having our identity built on that alone is quite another and it allows us to live that core openly and comfortably every day which results in a sense of peace and a kind of improved emotional suspension system which smoothes out the bumps. When we are truly ourselves resistance falls away. We can just be, because when our identity is rebuilt on who we truly are (instead of where we come from, who our family is, what others think of us, what we do/did for a living, societal role expectations and so on) there is no resistance. There is just us. Other’s opinions may affect our emotions but our sense of self is no longer affected by them. And from that point life kinda opens up. 

Suzy's photo challenge, 2015, Day 7

 

xxx

 

 

CRPS and flu vaccinations

Please note: this article, and the meta-research mentioned within it,
is only discussing flu vaccines

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The question of flu vaccinations in particular has come up recently. This is a very individual decision based on our very individual bodies. Current CRPS research is looking at the subtypes of CRPS, so sweeping statements about all CRPSers are inappropriate. For example, some people experience CRPS spread whilst others do not, some people have other immune issues and/or autonomic dysfunction whilst others either do not or experience few symptoms of these. I could go on, but you get the point – we are not the same simply because we have the same condition.

Everything needs to be considered for our individual body, with our particular array of conditions and symptoms. What is okay for one patient may be problematic for another.

This means that sweeping statements are something to be very cynical about. If someone says all CRPS patients should get the flu vaccine there will be some patients for whom it’s not appropriate. Similarly, if someone says that all patients should avoid the flu vaccine then there are patients who would have benefited who are consequently put at risk. So the first rule of thumb is to steer clear of the sweeping statements.

What you need is facts – so that you can consider your own personal situation in light of the information. You need to be able to make an informed decision.

The difficulty when looking for facts is that most of what we find online is influenced by opinion and to sift through the science you’d need to trawl through many medical journals, (preferably the smaller ones as the big journals tend to publish more of the research funded by pharmaceutical companies which means lots of bias, and don’t forget what I’ve said before about negative data not getting published, too). But helpfully (or unhelpfully depending on how you look at it!) an independent systematic review found that there is no really clear evidence for or against flu vaccines (Jefferson et al, meta-analysis, 2010).

So to make a decision about whether we should have the flu vaccine or not then we should focus on how it works and how that might function inside our particular body.

file0001208028901(picture source)

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A bit about vaccines:

A  vaccine is merely a weakened or dead version of the virus. The flu vaccine has always been a dead version but I have heard from a pharmacist that very recently this has changed as some are weakened rather than dead – so if your body needs you to be sure which your doctor is offering just ask in advance.

They work because our immune system learns from the experience of the weakened or dead version so that it is prepared if we are later subjected to the same strain of the actual virus itself.

The manufacture of vaccines for seasonal illnesses like flu has to begin ahead of time to enable the manufacture of enough vaccine. So the experts have to predict which strains of the virus are going to be the most problematic several months in advance. This of course means that there is room for error, even the experts can’t always predict the next haute couture in flu viruses that far in advance. So there can be strains of the virus around which the vaccines don’t cover.

Ultimately a vaccine allows the human body to have a swifter and harsher response to the strain(s) of virus it protects against. Which is good for us in general terms because immune issues are part of having CRPS (and for one subtype of CRPS may be the foundational factor), but as general terms is not enough when it comes to chronic illness – always look at your own personal health issues to make a decision appropriate to you and your body.

 

One common area of discussion among patients results from experiences of becoming ill after having a vaccination. There are several ways you can become ill after vaccination:

– The vaccine reduces your chances of catching the strain(s) of flu in the vaccine. So the potential for illness if you are subjected to these strains at some point is still there depending on various factors (including the state of your individual immune system).

– It is still possible to catch a different strain of the flu virus which wasn’t included in the vaccine, especially as your immune system will be busy dealing with the vaccine at the time.

Many people think the vaccine itself can cause illness which is not the case as the flu virus in the vaccine is most commonly dead. However, as I mentioned above, there are some flu vaccines which now involve weakened versions of the virus and I feel I should include a caveat here simply because the human body is a complex critter and I have had enough encounters with patients with rare diseases and immune issues to know never to say never! But yes, really, if you got ill after having a dead vaccine the greatest likelihood is that your immune system was rather busy and that you caught a different strain that the vaccine didn’t cover.

Also bear in mind that the vaccination can cause some symptoms reminiscent of the illness for a day or two as the immune system learns about it inside your body.

Plus those of us with chronic illness continuously hanging onto bearable health by our fingertips can become more susceptible to illness during this period.

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Each year new strains of the virus have developed, so a new vaccine for the new strains of flu is created to help protect our bodies against them. This is why we are called in to our doctors’ surgery for a vaccine each autumn.

Sick person

(picture source)

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The vaccine positive: Reduced chances of getting flu. The key word is ‘reduced’, it’s pretty vague because different research has come up with different statistics on how well the vaccine works.

There are various aspects to this, we each have different bodies with our own immune system, does our body tackle this stuff well or not? Is this likely to work for us as an individual? Have the experts’ educated guesses been as good as usual about which strains are going to be the big problems this coming winter? We have to weigh up both sides and decide what’s best for each of us.

Personal vaccine positives: vary for each of us because getting or not getting flu is just the beginning in our chronic illness vaccine considerations. Being what we CRPSers tend to playfully call ‘normal ill’ means that our pain management regime is severely disrupted. We cannot maintain our usual paced daily activity which means that a pain flare is pretty much inevitable. What that means will vary for each of us, and even more so once we start taking our other related conditions (comorbidities) into account because being ill often has a detrimental affect on those, too. So what would be a week of flu for an otherwise healthy person becomes weeks or months of extreme hideousness for us chronically ill folks as we a) work through the flu itself and then b) work through the longer task of trying to get our health back to the level it was before we got ‘normal ill’ on top of our chronically ill which screwed up our delicate balance needed to manage our health as best we can. (Grr)!

We each have to weigh up potential injection-event pros and repercussive cons against the potential mega-flare that will result from having to get through a bout of flu on top of everything else. CRPS patients of any age fall into the ‘at risk’ from flu category courtesy of our compromised immune systems alone, before we even get started ticking off other stuff on the ‘at risk’ list and yet some patients out there could have good reasons to avoid the injection event. Sweeping statements do not apply.

For me personally I avoided the flu vaccine for years and every year I got ill and spent pretty much the entire winter trying to claw my way back to some semblance of functionality again. So I finally tried it (back in 2010) to see how it worked for me, and in my case it was a positive experience. Actually it was a reeaally positive experience because I’ve not had the flu since. Wowsers! Now that I know that, it’s a no-brainer for me! I cannot face the mega-flare that results from me getting flu. I have been through that delightful experience many times and each time it took me weeks, and sometimes months, to get back on track. Horrific doesn’t really cover it. So having tried both sides I now know that I personally would much rather have the vaccine to give me a greater chance of dodging the flu and instead incur a mere few days of potential flu-like symptoms as my body gets trained in kicking the butt of this years virus strain. I’ve had completely transformed winters since I started having the vaccine each autumn. But that’s me personally. You have a different body, a different set of symptoms, a different set of conditions. What works for me or for anyone else is irrelevant, you need to think about what works for you.

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So when people warn CRPSers against vaccinations what are they referring to?

Some of us have bodies which do not favour even such small invasive procedures as one needle. Good general advice is to to have the flu shot in an area unaffected by CRPS. If you are still unsure then discuss the potential difference of using a smaller children’s (paediatric) needle and whether that may be worth a try.

Perfectly healthy people can experience soreness in the area of the injection site so the potential for soreness is there anyway, and possibly amplified pain if our autonomic nervous system is playing up about it.

Elle and the Auto Gnome, notebook

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There are also some basic things to take into account:

If you have any allergies then these should be discussed with your medical team beforehand to assess how appropriate it is for you. There is also a standard list of questions that the nurse should run through with you beforehand, particularly ‘are you allergic to eggs?’.

If you’ve had a reaction to the flu vaccine in the past it is likely you will be advised not to have it again.

If you have an extremely poor immune system you will also need to discuss it with your medical team as you may be advised against the flu vaccine

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Each of us has a good idea about what our own bodies can handle. We know ourselves best. We live inside these bodies of ours and we know what is likely to set off a flare, and if so how bad it could be, and whether we are prepared to go through with that. For me personally, vaccination is well worth the positive outcome I experience from it, but we each have to make our own decisions.

x

Loss of a friend and raising awareness

Today I write with a heavy heart. I lost a friend to suicide. Yes, he had CRPS, but he actually coped astoundingly well with the condition. His love kept him going. His love of his God, his love of his canine companion and his love for life. He enjoyed being outdoors and growing veg’ in the garden sharing photo’s of his crops as many of us gardening types do, he really enjoyed going fishing with friends until his condition worsened to the point where he could no longer do so, he loved his music (from Beethoven to ACDC) and he just loved and believed in goodness so strongly that every time his health knocked him down or stopped him from being able to do something he found the strength to dust himself off and grow from it.

His first response would be to share the beauty he felt in that recovery with his friends by posting in a CRPS support group where he knew fellow patients needed to hear just that. He always supported fellow patients, encouraging them to keep going, reassuring them that he understood the pain, the loss, the limitations and yet that there was still beauty in the world. Still a life to be lived. Still love to experience. He truly was a shining soul who lifted so many in dark times of their own.

His outlet was his poetry. That’s how he found the words to express his experience with CRPS. A condition so removed from common experience that words just don’t suffice until you suspend the usual way of communication and get creative with them. He let those words fall from his mind onto the page and they captured moments living with such intense physical pain. Burning. Loss. And yet hope. Love. The will to continue.

Cross' poem, CRPS doesn't own me (2)

One of Cross’s poems that he shared on his public page to raise awareness about CRPS

So yes, he had coping mechanisms that allowed him to find the strength to focus on the beauty in life to keep going. All of us will have a point where our situation finally outweighs our coping mechanisms. In fact I wrote about this just 12 days ago and it rips me apart to know that he so desperately wanted those around him to understand. He appreciated my article and wanted others to read it to help them to understand what he had been feeling for so long. He had been talking about suicide on and off for a long time by then. It was one of the reasons I wrote the post. I needed to create something that fellow patients could share with loved ones that said what they could not find the words to say. To reassure those close to them that it’s not cowardice or weakness, selfishness or meanness or anything else of that ilk. It is human and understandable. That those finding themselves in this situation are not to be treated badly but helped to gain more coping mechanisms, helped to make the necessary changes. Helped. Understood. Helped.

His spirit was strong, his will to live was amazing, his love for others was out of this world, his coping mechanisms worked as any of ours do – only as long as they are not outweighed by the situation.

When the situation is out of our control we have to make what changes we can that will enable us to keep going. As dis-empowered as we can be by our own supressed self-worth, by the lack of CRPS knowledge that causes others to behave badly and/or inappropriately around CRPS patients, we can still make changes. We can change our way of thinking and our approach to our health, we can choose which physio’ we can do at home, we can choose who we are in contact with, change the way we plan our day, we can stop trying to do what we used to do and start thinking about things we can do whilst we are working on the physio’, or when resting afterwards. We can make changes. My friend was unable to do so because even his most personal space was not his own. In such extreme circumstances we can still make changes because there is a social care safety net and a social protection safety net – people we can contact in dire need who are directed by law to help. But when that fails, well, there is quite simply no safety net.

My friend’s safety net failed.

It shouldn’t have.

Public services should not fail like this.

I cannot stress how much we need to spread greater awareness of CRPS and it’s multiple effects. No not that embarrassing Pepsi ad’ with the link to a local support group website which is out-dated and incorrect despite being asked to update and correct it by patients, that is so unhelpful. Every time I see that blasted ad’ I <headdesk> in a way akin to shouting “Whyyyy?” at the heavens. Link to the RSDSA please. They are up to date, they are informed and they have current professionals in the field working with them. 

I haven’t written about my friend’s particular circumstances because another good friend has already done so with her fabulous professional knowledge from working in the medical field and her close contact with our mutual friend. You can read her piece here. I’ve delayed reading it myself so as not to muddle my own writing here, so I shall pop over and read it (and probably have a cry whilst doing so) once I have finished writing this post.

The bottom line is: this shouldn’t have happened.

What I want to do is highlight my friend’s beauty of character, to remember him in the way that his friends knew him and not in the way that a few quotes from his last few desperate and angry days on social media inadvertantly make him seem. He wanted to live, but could find no way to escape his circumstances to be able to do so.

What I want to do is to to highlight the impact that lack of knowledge about this condition can have.

In fact what I want to do is initiate change.

With regards to that – watch this space. And share the link to the RSDSA, the CRPS FAQ of useful links and information on here, and don’t feel you have to keep quiet about CRPS.

There is a drive to get information to doctors on the Facebook page CRPS Research and Developments, so pop in online and ask for a postcard or two to drop in for your doctors to read. This is important. So very important. So many lives are lost to CRPS each year, and if we wait for the general medical field to catch up with the specialist research it will be too long. Too late for another soul who found that their safety net was missing because CRPS was not understood.

There is an opportunity to raise awareness with the RSDSA’s event “Color the World Orange” which you can see on Facebook here. It gives you an excuse to shop for clothes *and* you can help raise awareness. And if you would like to be part of an orange display on here too then please do post your all-oranged-up piccies to my Facebook page here, because I would love to colour this blog orange too, x

There is also a patient-initiated memorial event which you can see on Facebook here. If, like me, you do not want to release balloons owing to the potential effect on wildlife don’t worry there are other ways of raising awareness and it would be wonderful to have your company raising awareness in honour of such a good soul.

You can purchase awareness tee-shirts and other items on the CRPS, Art & Spirit Cafepress shop here. All of the proceeds go straight to the charity (currently in the process of setting up, and there are no wages to pay at all thanks to our awesome volunteers with a variety of fabulous professional skills) which is involved in sharing information and knowledge with those who need it to help bridge the gap between doctors and patients. If you can’t find what you’re looking for in the shop then let the CRPS, Art & Spirit team know here because we may well be able to rustle up a design at your request. 🙂

If you knew Cross and would like to leave a condolence message then you can do so here.

I am so so glad and honoured to have known him. I will always remember him because he has a place in my heart and that’s forever-land in terms of my memory.

Cross, be at peace my friend. Your wish to educate others and spread the word on CRPS to help fellow patients will continue, xxx

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Much love to you, readers, as always.

Thank you for looking into one or more of these easy awareness raising events, it means an awful lot to us patients and it would swell my friend’s heart to know we are working on his fondest wish.

x

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Invisible Illness Week 2014

Invisible Illness Week is 8th-14th September and the 30 questions are in circulation again. So here’s my answers for this year, it will be interesting for me to see how different they are from last years answers too..

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30 Things About My Invisible Illness You May Not Know….

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1. The illness I live with is:

Multi-systemic – it affects entire systems in my body with multiple ongoing issues all day every day…

faulty autonomic nervous system,
which affects the central nervous system,
plus unhelpful neurological re-wiring and
a compromised auto-immune system.

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So I have a terrible disease but not to worry

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2. I was diagnosed with it in the year:

CRPS in 2005

Dysautonomia 2014 finally in writing, though it was diagnosed verbally back in 2010

Partial Hypermobility 2014, as the mega ‘growing’ pains and clicky joints were dismissed by my childhood GP despite my Mum’s concerns

Degenerative issues in hips 2014

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3. But I had symptoms since:

CRPS since 1999

Dysautonomia since 1999, it kicked in within weeks of the CRPS with IBS, closely followed by a tendency towards low blood sugar and body temperature dysregulation.

Hypermobility always (also affects the autonomic system)

Degeneration in hips over time – a development potentially related to the hypermobility

All of these conditions are inter-related. The issue from birth was the hypermobility… which can affect the autonomic nervous system but I experienced no major issues there originally.

The pre-disposition to autonomic issues and the priming of nervous system default responses during childhood resulted in the development of CRPS (which involves faulty pain signals through the ANS) after a minor injury… which had the knock-on effect of more autonomic issues developing over time (some within weeks, others years later after a trigger event).

Plus the long term hypermobility has also had its own effects on my joints.

So it’s all very over-lapping.

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4. The biggest adjustment I’ve had to make is:

Learning how to still be *me* despite the massive lifestyle changes.

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when life gets harder

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5. Most people assume:

That I’m not that ill <facepalm>

(because I usually look and sound fine when they see me during my physio’ which is the tiny portion of my day where I’m mostly functional) :-/

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What you see depends on what you look for

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6. The hardest part about mornings are:

Having to wait for hours to actually be able to move about with less extreme pain and/or less extreme near-fainting.

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7. My favorite medical TV show is:

Scrubs 😉

(In the UK medical programs are all soap operas. We also have documentary series which might occasionally cover a health issue).

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8. A gadget I couldn’t live without is:

The kettle!

(because my hot water bottle is a permanent fixture in my daily pain management *and* the kettle also enables cups of tea!)

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9. The hardest part about nights are:

I know I should probably say the pain, or the fact it never ever ever goes away, or the silent tears that might escape every once in a while when it gets so hard to just keep fighting when even sleep won’t grace me with it’s assistance. But you know what really bothers me the most? Trying not to wake Magic Dude up coz the headboard creaks when I shift position when I’m sitting up!

(He says I shouldn’t worry about it but I’d rather he got more sleep)!

That not to say that it’s worse than the other things, just that the other things are permanent and horrific so I tend to focus on the fleeting or non-health aspects of the toughest stuff to help me to deal with it!

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10. Each day I take ? pills & vitamins:

9, plus painkillers when required (with occasional anti-inflammatories though I try to keep away from those if possible owing to detrimental long-term effects)

Bitstrips, meds and supps

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11. Regarding alternative treatments:

‘Alternative’ can have many interpretations. If we’re going down the ‘anything that’s not prescribed’ route… even 8 of my 9 pills are supplements crucial to assisting my body cope with this condition. I ‘pace’ my activity to manage my pain (because it retrains my autonomic nervous system to not over-react). I don’t just do functional movements at home I also attend classes to further strengthen my muscles, improve my balance, work on my awareness of surroundings and where parts of my body are during different movements etc. I also attend a tougher class once a week as I find that this enables my nervous system to compare the rest of the week with that hour rather favourably which also helps baseline pain levels! I’ve had acupressure, auriculotherapy (non-invasive acupuncture on the ears) and even carefully applied acupuncture (they didn’t help the respiratory issues because the faulty de-fault had been set in place for too long, but it was worth a try especially as it was available on the NHS which, by my own description of alternative being non-prescribed treatment, renders all that as mainstream medicine now anyway). I use helpful psych tools for dealing with problematic symptoms of my conditions and to work through any negative feelings I may experience about various aspects of my health (these are available through pain management teams on referral but I acquired these skills myself partly through my psych’ studies but mostly through self-searching and trial and error). I learn much about my own conditions so that I can logically work around the health issues and give my body a better chance of coping with all that is wrong within it. I also happily accept reiki healing offered by friends.

My conditions mean that meds are very problematic in various ways, so doing all that I can to try to keep things vaguely functional without adding the negative effects of meds is reeaally helpful.

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12. If I had to choose between an invisible or visible illness I would choose:

I have both depending on whether it’s during a paced active part of my day and how much various symptoms may be playing up in that moment. Both have their pros and cons, but having both gives me the extra insight which I can employ usefully by helping others, sharing insights and so on.

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13. Regarding working and career:

Work is not just paid employment so although the psych career went down the pan for me I have the 24/7 job of keeping my body functioning as best I can which includes trying to keep up with the latest research when I have enough Brain to make sense of strings of words. My hands are full just with that. When possible though I also spend time assisting in a couple of support groups (albeit rarely at the mo’ as I’ve been more symptomatic of late) and the infrequent addition of writing of course. 🙂

What's wrong with my brain

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14. People would be surprised to know:

How bloody awful I feel at any given moment!

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Pain scale with continuous smiling!

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15. The hardest thing to accept about my new reality has been:

How much it keeps me from doing really worthwhile things that would help others e.g. starting a charity as a healthy person would not take two or three years just to get to where we are with it now. It will be really helpful when it’s set up, but it’s so frustrating to be kept from doing things when there are good things to be done, it just means that everything is so slow going.

(Or, more personally, the people I’ve lost as a result of the effects of these conditions. But I’m still steering around that a lot of the time, although at least I’m finally coping better with it now it’s four years on, x)

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Start where you are, use what you have, do what you can

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16. Something I never thought I could do with my illness that I did was:

Start learning martial arts (albeit adaptive, but many able bodied people have injuries to work around so really ‘adaptive’ is a typical approach, or should be anyway).

when nothing is sure everything is possible

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17. The commercials about my illness:

That’s a very US thing, as the UKs NHS is now mostly privatised and getting more so I would not be surprised if we started seeing things like that over here eventually as it will lean more towards insurance for health care and all the knock-on effects that entails. There is certainly very little awareness of CRPS and Dysautonomia in the UK, even amongst most medical staff though, and I would be surprised to hear anyone talking about CRPS or Dysautonomia.

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18. Something I really miss doing since I was diagnosed is:

Dancing. Not professionally or anything, just dancing for the enjoyment of it.

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19. It was really hard to have to give up:

The career path I was working towards.

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Problem or how we percieve it

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20. A new hobby I have taken up since my diagnosis is:

Tai Chi

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21. If I could have one day of feeling normal again I would:

Skip! I would skip gleefully and laugh a lot!

Of course there’s so many things I’d want to do and any of them would be awesome, but the first natural thing of the moment would be to laugh with pure elated, unabashed, incredulous glee and skip skippety skip! (There’d probably be a cartwheel pretty soon after that, too)!

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22. My illness has taught me:

That I am stronger than I ever knew and in more ways than I realised.

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you decide how your soul grows

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23. Want to know a secret? One thing people say that gets under my skin is: 

I don’t expect much from non-CRPS people, not in any objectionable way at aaall, but simply because how could they ever be expected to know about such a complex and little-known condition? I certainly wouldn’t have prior to actually having the condition, and it took several years even after I was diagnosed to find out. But when doctors doubt the fundamentals of the condition(s) I have, or start down the “and what makes you think you have CRPS?” route…gah! It’s okay, I mean I can pull them back down to earth with a thud when I point out that I was diagnosed by one of the countrys top specialists courtesy of my medical history and an MRI scan as the clincher, but it’s the time it takes you know? It’s wearing having to explain basics to doctors all the time, and it’s a waste of valuable time.

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Arse from elbow

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24. But I love it when people: 

Check to see if I’m okay to do something because they know it might cause issues in my body. It gives me a chance to say if I’ll have trouble doing that today and it doesn’t put a damper on things because *that’s* why they asked. Looove those friends  😉

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25. My favorite motto, scripture, quote that gets me through tough times is:

“Be the change you want to see in the world”

I still use “This too shall pass” (a lot!) but I fancied including this other quote as it is a huge motivator for me.

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26. When someone is diagnosed I’d like to tell them:

Anti-oxidants!
Pacing!
Beware of outdated and incorrect info’ online!

Anti-oxidants..
Inc Vit C up to 500mg at a time (because that’s all the body can absorb in one go) 2-3 times a day. This is also a good thing to do before and after any invasive procedure (even dentist appointments) and 2-3 months after the event is common advice.

Many long-term CRPSers take vit C every day.

Antioxidants are so important to the long-term health of our mitochondria. I also take Co-Q10 every day.

Pacing..
the same amount of activity every day no matter what the pain levels. Starting with a few minutes if that’s all that’s viable is fine because it’s keeping it consistent that is important in retraining the autonomic nervous system to not set off the inner alarm bells every time you move. Eventually this will reduce the pain baseline and improve quality of life and it will even out the days instead of having good days and bad days (which we perpetuate by doing more on good days thus causing bad days and which is the worst thing we could do because it reinforces the faulty autonomic over-reaction, and hence the circular hellishness goes on if we do not pace)

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Online info…

The ‘stages’ were discarded in 2004.
The ‘types’ were a carry-over from the old RSD name but it makes no odds which you have – the nerves are damaged in both cases and the treatments are the same

Lots of info’ online is so terribly out of date and therefore incorrect. Research in recent years has shed loads of light on CRPS and most websites do not have this latest info’. Many fellow patients are also not aware of the latest knowledge and (sadly) neither are many doctors.

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27. Something that has surprised me about living with an illness is:

How much you often become one of two extremes depending on people’s view –
I’m either…

a) not that ill really or
b) not really a person, irrelevant to the point of near invisibility

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pirates have no concept of ableism

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28. The nicest thing someone did for me when I wasn’t feeling well was:

This past couple of weeks the near-fainting has been so so bad I’ve even been missing my crucial paced physio’ time. On a day where I was spinny on the sofa Magic Dude turned up after work with pizzas.

At the Tai Chi nationals in June I competed even though I felt so awful. I concentrated so hard and sweat was pouring off me by the time I finished my handful of minutes. As soon as I could leave the performance area I collapsed. Magic Dude was on hand with a bag of salted peanuts, a bottle of water and a sweet drink. He is on standby when I get really symptomatic and he generally knows what to get for me depending on which symptoms are being particularly arsey!

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29. I’m involved with Invisible Illness Week because:

The concept of ‘disability’ in the UK is worse than ever since the welfare reforms and the posited concept of the disabled as scroungers. The number of attacks on the disabled has increased shockingly. I have been screamed at for parking legitimately in a disabled parking space and yet I have many a time gone home in tears because the disabled bays were taken by people with no badges and the screaming pain was so bad I had to turn round and drive home again and wait days (weeks in the pre-diagnosis years) for the pain to calm down enough for me to try again.

There is even an organisation pushing for a more active looking disability symbol but still only include a wheelchair user in that symbol. Only 7% of UK disabled use a wheelchair so no wonder concepts of disabled have been so skewed for so long, let alone the worsening effects of contemporary politics. So it is apparent that even some of us disabled folk are conditioned to think that the wheelchair is the most appropriate symbol for a group of people, when 97% don’t wheel about the place and therefore are often targeted for not looking disabled.

To work so hard to change a symbol which does not address the distressing effects experienced by 97% of disabled who are mistreated for not ‘looking’ disabled is hard to get my head around. It’s a nonsense.

We need change.

And we need to make it happen, because we have the informative inside view.

.accessibility

7% of UK disabled, 93% of disabled look nothing like this picture

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new NY disabled symbol

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7% of UK disabled may experience improved attitudes, but 93% of disabled look nothing like this picture

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A broader idea of disabled which includes the concept of non-wheelchair users and which could help to broaden understanding of disability and thus result in less aggressive behaviour towards the 93% non-wheelchair disabled when they legitimately use disability utilities, parking bays etc

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30. The fact that you read this list makes me feel:

Relieved that someone out there wants to learn more during Invisible Illness Week.
So many people don’t realise that many disabled and chronically ill don’t necessarily look unwell.

So… thank you xx

seal of approval

^ geddit? X-)

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I’ve just had a look at my post from last year and I’m intrigued, and pleased, to see the positive changes in my answers to 15 & 18. 🙂

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A note on pictures: I have found these wonderful pictures floating about being shared on social media. If one of these is yours I would love to attach an official source so that others can find your work, or if you would prefer your work not to be included please do let me know and I’ll remove it straight away, x