Interpreting new medical information

How do we find reliable information and not freak out when given a new diagnosis?For those of us with multi-systemic conditions new diagnoses are pretty much par for the course, but our laid back attitude to new conditions is won from experience.

Weirder still is how we also have to deal with no clear diagnosis as this often means the continuation of confusion in the medical practitioners working with us.

This year I’ve experienced both!

I’ve been to see the UK’s top autonomic dude and been told I have POTSy stuff going on but not enough to be diagnosed with POTS. This is confirmation of autonomic dysfunction and how in my body it is also wreaking extra havoc with near-fainting (near syncope). Not that less specialist practitioners really know what to do with ‘autonomic dysfunction’ or what array of ‘interestingness’ that can result in.

I’ve also been to see one of the team at the UK’s top department for hypermobility and been told that I have partial hypermobility. After all my years working hard on my legs (for example I no longer have to work my kneecaps until they loudly *bang* back into place)! I am still very hypermobile in my core, though. This explains why even my breastbone has been subluxing in recent months. (Subluxing is a patient shorthand for sub-luxation which is when joints pop out and back into place, it’s a partial dislocation rather than full-on dislocation/luxation). So I received some instructions to get referred to physio’ rather than any diagnosis which would be clear to other medical practitioners.

Frustratingly the hypermobility expert noted that she didn’t see any signs of CRPS in my skin at all. I wrote to her asking for this to be amended in her report as although a CRPS expert would know that whether any ‘signs’ of CRPS are present or not at any given moment in time has no bearing on whether that patient has CRPS or not, she sadly did not deign to a) respond or b) amend her report. So her report effectively includes what looks like a query over my CRPS diagnosis which only experts would realise was unfounded and any other medical practitioner would actually take that questioning of the diagnosis on board. *sigh*

The latest info’ arrived long after the hypermobility appointment as a result of an x-ray which was requested by the expert to ascertain whether I had shallow hips. I’m going to use the resulting letter to show how I choose to filter search information online.

First rule of searching online: searching individual terms is handy for a clearer understanding. I don’t want to find lots of vaguely or potentially related information, I would have no idea whether what I was reading would be related to my personal situation or not, so first of all I only want to find the exact meaning for my body.

Second rule: use a reliable source with a clear explanation. Once again.. I want a direct translation, not a load of vaguely related gumph that might not even relate to my own personal situation. So no wikipedia, no tangents into something that includes the terms I’m searching, simply a good medical dictionary or medically grounded information website.

So, here’s the info’ from the consultant’s letter..

Letter, hip x-ray, part 3

 

Essentially I want to translate this key bit of a sentence:

“…minor dysplastic changes with minor degenerative changes in her hips.”

First of all – note that “minor” is used in both cases. Long-term chronically ill folk usually don’t panic anyway, I mean, what’s the point right? I wrote a post a while ago about the time I visited a cardio’ doc’ and he said he could think of nothing that would make my permanent near-fainting anywhere near bearable or functional except for a pacemaker. Even in a situation like that it’s a case of allowing the emotions to pass and then getting back to life. We don’t do our thinking when we’re emotional because we recognise (from that bumpy old road of experience) that our thinking is pretty poor under those circumstances. It’s just the way the human body works so don’t worry about that happening, it’s just the way it is. And anyone with autonomic issues knows that when the ‘fight or flight’ kicks in then we’re not to even bother thinking at all, coz that mechanism means we don’t have full access to our higher functions anyway. So, even if you receive a shock diagnosis…. allow yourself time to calm your nervous system down. Stop, sit, have a cuppa and don’t try to figure out what it might ‘mean’ because our brain is not equipped to do that until we get calm again.

So yes, back to looking at how to decipher medical info’, which we only do when we’re feeling calm…

“Minor” sounds positive, “degenerative” can sound scary. It would be quite natural to skip past the “minor” and focus on the “degenerative” but it’s unhelpful and inaccurate to do so. Once we allow our emotional response to choose the focal point then our imaginations start getting involved. Our imaginations are amazing things, that’s why some of the scariest horror films are the ones that don’t show you what is actually happening to a character at the time – because it’s way scarier to let our our imaginations do what they do. So leave the imagination out of it. We simply want facts. Just a translation. Keep focused on that because it is key to dealing with medical information in a manner which is most helpful to our health (both mental/emotional and long-term physical).

The initial question is: “what does dysplastic mean?”

We can type “dysplastic” into our search engine, but then we also have to remember that we need a reliable source with a straight-forward translation in medical terms so adding the words “medical dictionary” or “medical terminology” or something like that might help us. But even then the search will still find case studies, specific types of dysplasia, maybe even hip dysplasia which sounds so appropriate that it would be tempting to follow one of those links, but I just want a meaning for “dysplastic”. That’s all. I don’t want to read stuff which may be medically relevant to the subject but not actually relevant to my health or my body.
I can read around the subject after I have a basic understanding.

It is important to notice here that the information that we choose not to explore is at least as important as the information that we do choose to read. Restricting our initial reading reduces that chance of reading things which don’t actually directly relate to us and which might make us worry unecessarily. Choosing to look after our mental health and emotions at this stage is as important as finding out how to look after the physical health issue we are looking into. We deserve to be able to work through new information in a manner which is informative without adding extra layers of potential distress.

So I ignored pretty much everything that the search brought up because it wasn’t specific enough. What I did take on board was that it is a very vague term. “Dysplasia” bascially means that something is not entirely ‘normal’. It simply means that there is a standardised ‘norm’ for things and we do not fit that norm exactly. So in that letter I’ve basically been told that there are changes which have resulted in my hips no longer being described as ‘normal’. That is all I need to know at this stage – it is vague, and my hips are just different. But vague is better than wrong, so my careful filtering out of lots of info’ has done it’s job…

Many of the links included references to moles and cancer, imagine what could have been taken away from a search on “dysplastic” if I hadn’t been so determined to simply find a translation. Anyone in this situation could have started worrying that the changes are really scary, it would have been all too easy to make assumptions about what that letter meant, about what’s happening inside the body, what it might mean to future health etc. So yep, translation only – avoid all round-the-subject information until you are sure what exactly has been reported about your own personal body.

So, “minor dysplastic changes” meant that my hips had developed something different from the norm. The next bit says there’s some minor degenerative changes, too. But that’s it. There is no other info’ there to make it any clearer. And when you live with a complex condition where many possibilities exist then there’s no point worrying about anything unecessarily. Whatever is, just is. So all I want is some more info’ to clarify what I’m dealing with because key to working with this is to know what I’m working with, of course!

So I asked my GP for more information. She’s used to me asking for more info’ and she knows that I ask simply because I want to understand how to do the best I can for my long-term health. I live in the now, but that doesn’t mean that I don’t look after my body for my future.

The extra info’ the GP gave me is from the radiologist and is less of a potential emotional minefield as it simply requires translations of terms for parts of the body…

Letter, hip x-ray, part 2

The “femoral heads” are simply the top of the thigh bone (femur), and “acetabula” is the rounded bit of the hip joint that is part of the pelvis (plural of acetabulum so it refers to both hips in this case). Simple searches can uncover this information as long as you continue to refuse to get led astray. ‘Just the facts, ma’am, just the facts!’

“There is minor uncovering of the femoral heads but the
acetabula appear well formed”

So, interestingly my hip joint is not too small, which is what usually happens with dysplastic hips (see how easy it would have been to read information which is relevant to the words used, and even to the condition in general, but incorrect for my own body). So as the tops of the thigh bones are not fully covered by the joint sockets then I guess they must be too big, or is that another assumption?! See how easy it is! As my fabulous fellow blogger Isy Aweigh pointed out it could alternatively be as a result of my ligaments being too stretchy to keep things where they should be (totally viable in my partially hypermobile body), or it could be that I have a strangely chunky amount of cartilage in the mix, or even a mix of all three of these things. I don’t know because the information doesn’t specify. Whatever it is, whether it is a result of the changes over time, or whether the changes are something else and I’ve always had abnormal femurs/ligaments/cartilage is not something which is explained here. So that is unknown because you can’t assume anything when it comes to your health! Though the hypermobility expert has interpreted them as “dysplastic changes” in her letter so maybe she was privvy to more information than the GP and I, or maybe she made an assumption, who knows?!

The last bit of the radiologist report reads:

“Minor degenerative change noted with some sclerosis. Joint space is preserved.”

It doesn’t answer the questions I would have as a non-medically trained patient… ‘degenerative change to which bit?’ Don’t be afraid to ask your GP to explain things to you. And don’t be afraid to ask them to get more information from the expert in question if the issues are not fully explained.

In this case my GP translates the radiologist’s report as the tops of my thigh bones having the degenerative issues and my joint sockets as being a-ok. My wonderful nurse friend has also said that if it doesn’t specify where the degeneration is then it means that it’s in the joint space (which includes the cartilage and the ends of the bits of the bones that help to form the joint), but as patients there’s not really any way we’d have of knowing so asking medical practitioners for more information can be very helpful.

Whereas a quick search on “sclerosis” wasn’t actually very helpful. *sigh* The various links advise that it is a thickening or hardening of tissue and then go off on various different specifics which may not relate to my personal situation. Once again the handy Nurse Isy crops up to advise that sclerosis is basically scarring – tissue that has been damaged and repaired, but the repairing tissue is different to the original tissue, it’s thicker and denser – hence the thickening and hardening effect.

Knowing that the joint space is still good is great news as it means that the bones are not grinding on each other, which would involve further issues to be looked at if they were.

As it turns out, I’ve been taking high strength glucosamine with chondroitin for, oooh, about 12ish years now I guess, maybe more. It’s a good combi’ for cartilage repair (not regrowth) and even repair to some small fissures which can occur in the ends of the bones at the joints; or at least that’s what the research said years ago! It’s still said to sometimes help with joint pain anyway. So who knows… maybe that’s part of the reason the issues are still noted as “minor”. Either way, it’s been no bad thing for my body to keep taking the combo’, which is rather nice to know. 🙂

So, if this was your medical info’ would you be champing at the bit to find out more yet? Okay, okay!

Now that we’ve checked out the terms one by one and got a clearer understanding of the basic issues as they relate to the specific patient’s body, let’s see what wider reading on the degenerative issue can tell us…

A search on “degenerative hip joint” basically brings up Degenerative Joint Disease and advises that it is also known as Osteoarthritis. Oh. Right. That seems pretty clear then! Except it’s not – it turns out that they are not the same thing in diagnostic terms at all, and each have very specific criteria which at this early stage I would not meet. So I had figured that I had early onset osteoarthritis, and yet it was not the case at all. I am predisposed towards it yes, I have early signs of hip degeneration yes, but at this moment in time I am a patient experiencing issues with my hips, but I am not a patient with a diagnosable hip condition. Again, another example of how tricky it is to find truly accurate and reliable information online, and another whopping great example of how important it is not to over-interpret what we find. Keep it specific to you and your body, don’t expand the information to broader health issues because they may have nothing to do with your current situation.

I would always advise the same filtering system to be in place when you search anything on the internet, especially anything health related because the impact of false or even just tangential info’ can be so problematic for our understanding and current health as well as how we are to assess any changes to our lifestyle for long-term health.

Rule of thumb: look for a medically sound website which is not pushing one aspect or another. We want to know what works, or not. Not what sells. Remember… ‘Just the facts, ma’am!’, and just relating to your body.

I found a link when I originally searched which noted all sorts of different treatments from cortisol injections to surgery, and I loved the information in that link because it was also noted that many of the treatments enabled a short-term improvement at the expense of worse long-term issues. I immediately knew that I’d not be opting for any of those and that my existing approach of exercise (including strengthening), good nutrition, and medical/fitness support on hand if I need it would be my way of working with this development. I have just searched again and haven’t found that link. That just goes to show why our self-imposed filter system is so important in these kinds of searches.

As far as me having hip problems goes, it’s no biggie. Many people get joint issues developing from middle-age onwards regardless of any pre-existing health issues. I’m just starting somewhat earlier that’s all. And it’s not like I don’t know how to manage pain, or how important both physio-exercise and recuperation-rest is. So this is easy to take in my metaphorical stride (even though I’ve been stuck on the sofa for several hours recovering and resting after my morning physio’ earlier today, I can still metaphorically stride, right? 😉 )!

But my letter that I’m using as an example could easily have been perceived as scarier. In fact this example could have been scarier simply by handling the learning process differently and failing to filter out the excess of information which may not even be relevant.

So if you’re going to search medical info’ (and I recognise any ‘expert patient’ is going to do that at some point because we’re the centre of our health web and need to know what’s what).. be aware of the importance of how to search medical information, and of the importance of keeping the info’ specific to your body. Most especially be aware of the huge importance of how to filter out the less reliable information and that which is less specific to your body. And never forget to allow yourself time for the emotions first – medical searches are not helpful when we’re feeling emotional in any way. Allow yourself time first, then if you’re going to search for something only do so when you are feeling calm because that means that our brain is in a better state to filter and work through the information accordingly.

And finally, there is a footnote in the letter from the expert, did you notice it?

Letter, hip x-ray, part 3

“Should she continue to have significant problems despite that a referral
to a local orthopaedic surgeon is advisable.”

Would it have worried you?

Remember: this is a footnote for my Doctor. It is not a note for me to worry about. If I go to her at some point in the future to report worsening hip problems it simply gives her a pre-set starting point instead of a new round of referrals to ascertain where it is best to send me first. That’s all. And in addition it also confirms that I’m doing the right things, which is always great to know.

Hoping this helps a little bit,

From your friendly blogger who, medically speaking, might actually be… quite hip?! 😉
(I know, *groan* right? Sorry).

(Not sorry, really. Hehe).

x

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CRPS – Frequently Asked Questions

I help out as part of a multi-disciplinary admin’ team in a couple of online support groups. One of the groups has had such a fast increase in membership that we found ourselves trying to keep up answering recurring questions a lot of the time. As we admin’s are also working around our on CRPS, co-morbidities, flare-ups etc we found that the amount of repetition required was taking more time than we could manage to function in per day.

So, the plan was to create an FAQ with a list of themes with various links, snippets of information and so on, so that instead of repeating ourselves and posting loads of information every time the questions came up we could instead say “hey, that’s in our FAQ, feel free to go and have a look”. And it seems to be working well. Now a few lines to direct the questioner towards the FAQ enables us to share lots of information without compromising our own healthcare in the process. Organised, or what?! 😉

But that’s just within that one support group, and until my peers and I get the charity website up and running there’s nowhere else that our fellow patients from outside the group can access these links. Plus even if the file gets shared it’ll soon be out of date as new links are added all the time. So I’m going to add the FAQ here in the meantime. My fellow admin’s are working on other areas to add more info’ and links to what I’ve gathered here so far and I will make sure that it all ends up available online (the charity webbie is being created so we’re getting there slowly despite the health restrictions).

I’ve just uploaded the FAQ. It is not finished (with this condition is never will though of course as knowledge is always moving forwards) and it is a bit rough and ready at the moment, mostly still in raw links (some of which aren’t working as links at the mo’ so for those ones just highlight the website address, right mouse click ‘copy’, and then right mouse click into your browser address bar and right mouse click ‘paste’). I’ll pretty it up when I get to but as I have a long CRPS advocacy To-Do list at the mo’ I decided that prettifying can wait – it’s more important to get this info’ out there and available.

Here’s the new page:

CRPS Frequently Asked Questions (FAQ)

As always, any suggestions for additions, feedback etc is always appreciated. This is to help our fellow patients so I always welcome input.

Much love from me, x

Ankylosing Spondylitis on the McGill Pain Scale

Recently Ankylosing Spondylitis (AS) has been found to involve neuropathic pain. A question from a fellow patient about the McGill Pain Scale score for the condition resulted in me pottering off to see what research had found regarding AS pain scores.

A recent research paper that involved a small AS sample group of 17 participants who completed the McGill Pain Questionnaire (MPQ). The MPQ score for this sample group was 28.

Please note that with such a small sample group this is a ‘ball-park’ figure for reference only.

I’ve added this to my MPQ diagram below, in case this helps any other AS patients out there to explain the pain levels they experience on a day-to-day basis.

McGill Pain Index, final 2

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The main objection you are likely to hear when showing this pain scale to others is that pain is subjective and so cannot be scientifically compared, so here’s some info’ about this scale…

There was no scale of the sort for many years because yes, pain is subjective.

The use of the basic 1-10 pain scale is simply to compare our own pain to our own pain – it is only relevant to us as individuals because only we know a) what pain we are experiencing, and b) what the numbers on the scale represent to us pain-wise.

The McGill Pain Scale (named after the university it was developed at) was introduced in the 70’s by Ronald Melzack and Warren Torgerson and was initially doubted by his contemporaries for the same reason. Of course no scale is perfect, but the MPQ has been rigorously scientifically tested over and over since it’s creation and has actually proved to be scientifically very robust indeed. (There is also a short-form of the MPQ available (S-F MPQ) ).

The reason it works is that it involves asking many patients (so it’s not a small sample group) and they are not asked to just name a number in a subjective way…
The MPQ asks various questions involving both numbers and words that are descriptive of pain. The words used to describe pain have been found to indicate different levels of pain when the similar groups of words keep cropping up in the answers. The set-up of the MPQ is complicated in that it cross references all of the answers with each other to assess things like consistency, but it is designed to be easy to use and easy to score. The complexity used has been found to be very robust for a general pain score.

This scale is a good guideline, therefore, for our understanding of condition pain levels in a general sense.

So yes, pain scales as a whole are still as subjective as ever. But the McGill Pain Scale is a reliable way of comparing conditions as a whole.

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References:

Melzack, R. & Torgerson, W.S. (1971) ‘On the language of pain’, Anesthesiology, Vol. 34, pp 50-59

Melzack, R. (1975) ‘The McGill Pain Questionnaire: Major Properties and Scoring Methods’, Pain, Vol. 1, Issue 3, pp 277-299

Melzack, R. (1983) ‘The McGill Pain Questionnaire’, Pain Measurement and Assessment, pp 41-47

Melzack, R. (1987) ‘The Short-Form McGill Pain Questionnaire’, Pain, Issue 30, pp 191-197

Melzack, R. (2005) ‘The McGill Pain Questionnaire: From Description to Development’, Anesthesiology, Issue 103, pp 199-202

Wu, Q., Inman, R.D. & Davis, K.D. (2013) ‘Neuropathic Pain in Ankylosing Spondylitis: a Psychophysics and Brain Imaging Study’ in Arthritis & Rheumatology, Vol. 65, Issue 6, pp 1494-1503

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It’s health activist nominations time!

Yes, it’s that time of year again. It’s time for the third annual health activist awards when we get to vote for all of our fave health activists / bloggers out there who have made a difference to us patients. 😀

wego-health 2013

I’ve been happily voting for bloggers, it’s so fab’ to get to share the love 😀

All you need to do is follow the link here and add the weblog (or Twitter or Facebook information depending on where they write and post), and click on the award that you are nominating them for. You can do so anonymously if you prefer. When asked for the nominee’s contact info’.. an email, Facebook page or Twitter account are all ways for WEGO to let them know that they’ve been nominated.

Of course if you want to vote for little ole me I would not complain! 😉 In fact some of you must’ve been busy as WEGO Health have informed me that I have been nominated for three awards…. wheeeeee!

You can ‘endorse’ me on my nomination page if ya like. Only one of the awards I’ve been nominated for is showing on there at the moment, though, so here’s the relevant prettification for this post…

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I started by nominating someone for a health geekery award! There’s one blogger who ‘geeks out’ at research even more than I do so I just had to get in there and vote, hehe Go on, share the love people! 😀

x

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Healthcare wishes

Today’s WEGO Health Challenge is: ‘Votes are in – you won!
If you got elected [Prime Minister], what are the three changes you would make to healthcare [in the UK]?’ (wording amended to suit the country that I live in. 😉 )

1) In the UK the National Health Service (NHS) has been quietly privatised bit by bit in the background during that last few years. Many NHS sites are run by private companies already and very little is left to do to leave us without the NHS we have known for the past 50+ years. Up until now it’s been a case of private healthcare being available to those who can, and want to, afford it (as is health insurance), but every UK resident has had access to free healthcare since it’s birth in 1948. There are always some medications which aren’t covered by the NHS owing to cost (and they get discussed separately) but most forms of healthcare have been accessible for all. The privatisation of healthcare is going to change that massively over time as a healthcare system which is profit- rather than ethics-driven is a whole different animal. As Prime Minister I would want to ensure that free healthcare continued to be available to all and retain the ethics upon which the NHS was built for a healthier population.

2) I would ensure that doctors have to periodically be brought up to date in different areas of health. Research and knowledge moves forward over time and understandings of health conditions change, it is not acceptable to have doctors working on outdated premises as it can result in incorrect and mis-diagnoses. I do not expect general practitioners to have specialist knowledge of course, but to have a good general understanding of health conditions as they are currently viewed.

3) I would ensure that medical training includes a ‘zebra’ section about the conditions that appear paradoxical in their presentation and how they can be easily misdiagnosed as a common disorder, resulting in either no treatment or incorrect treatment. For example, basic information such as anxiety symptoms can be caused by anxiety, or sometimes by a disruption to the underlying mechanisms – never assume. (Oh and P.S. doctors are not qualified to diagnose psychological conditions such as depression so patients should be referred to a qualified clinical psychologist for appropriate assessment before writing something in their medical notes which is, effectively, merely a non-specialist opinion and may not actually be correct).

An illegal #4) (Ooh, I’m such a rebel! Mwoohaahaaa!) I would also ensure that the list of health conditions referred to by various organisations (such as disability benefits assessments, for example) are routinely updated so that descriptions of conditions are kept up to date and moved to more appropriate umbrella headings as required. (My experience of the benefits assessment recently is that ‘RSD’ is on their list of conditions, but the new name ‘CRPS’ is not – how can it not have been updated since the name change in 1994? Back then it was thought to be a common-or-garden ‘pain condition’ so when I spoke about it affecting the autonomic and central nervous systems they had no info’ on that, or on the auto-immune aspects, or on the neurological re-wiring effects including neuro-psych’ deficits. It is rated on the Department for Welfare and Pensions’ (DWP’s) list as such a simple condition that I was told that there was no need even for me to be assessed by a non-specialist general doctor with no knowledge of the condition, that a non-specialist nurse with no relevant specialist knowledge was sufficient. Only when I mentioned ‘dystonia’ did they realise that I needed to be assessed by a neurology based doctor (I ended up being assessed by a surgeon). And that was pure fluke that dystonia happened to be on their alert list rather than any of the other CNS and neuro’ issues that I have). This has to change. Working from a description of conditions where some have no bearing on the current medical understandings is completely ridiculous.

I am not the Prime Minister, however, and I don’t envisage that job being part of my future! But I still have hope for change, not because I think that the PM is going to suddenly wake up at 2am one day and have these things occur to him, but because people like you and I can help to highlight issues that need addressing. The NHS is so far gone I don’t know if we’re going to get to revert it back to what it once was anytime soon (although that doesn’t mean we shouldn’t try of course). But by raising awareness of our complex conditions we can make a big difference. The key is in using the skills we have rather than trying to do something which is tough for us on top of living with our wonky health day-to-day.

My skills are founded in psychology and research, plus I love helping others and sharing information so that naturally translates for me into research papers and advocacy work. But I am not able to work so I do what I can when I am able to do so.

For many other patients life is filled with things like working and being a parent so in those instances it is easier to look at things like sharing information, taking some papers to the doctor for them to update their knowledge, signing a petition to highlight a particular issue and so on. We each do what we can, and hope is in us, it’s in our hearts.

Brain power

Today’s photo challenge: “a picture of an item that gives you hope”!

My own personal hope is founded in my brain, though (whenever it actually works and for as long as it will do so!) because I spend time reading research papers and collating information that helps me to work with my doctor and local pharmacist to figure out what’s the best path forward for my particular array of health issues. My heart and my determination will undoubtedly continue, it’s ‘just’ the brain fog I need to work around, the brain is my hope! ;-P

x

Taking ownership

Today’s WEGO Health Challenge is: “Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).”

If I had been asked this a few years ago I most likely would have cited the time I realised that my physiotherapist had got things wrong and I decided to keep doing the physio’ exercises regardless of what she said. But now, only one thing stands out as a complete life-changer, and that was losing my family.

Pain of confusing loss, broken heart

I’m not going to talk about the process of loss, or the extreme grief and confusion. Or about the neurological issues that screwed up my processing, my comprehension, my word recall and more. That’s not the core issue for this post. The real crux of the matter in today’s writing challenge is that I was suddenly adrift; more alone and lost than I’d experienced before, and it brought home some harsh truths.

1) I had to accept that there was much I did not know about my own condition. And that the lack of knowledge contributed to the loss as none of us recognised the neuro’ issues. It would have been so obvious many months earlier if only we’d known it was part of my condition in the first place. 

2) I realised that I cannot assume anyone will stick around, even those who I thought would always be there. So I am even more super grateful for those who do.

So firstly I had to stop relying on doctors’ poor knowledge and stop assuming that those close to me would roll with the odd changes along the way. I had to get educated and I had to do it properly because I needed to take ownership of my health issues. I am at the centre of the web of my own life, I cannot expect others to just deal with stuff because I don’t notice it happening. I need to be aware, and in doing so I can self-advocate in my own healthcare, too.

Researching on the laptop

After that life-shattering event my world now feels pretty unrecognisable from what it was. For the first year I was incomprehensible and struggling to function at all. Distraction techniques were key that yearNow I know that the shock, grief, lack of understanding of what had happened, had all combined to make sure my ‘fight or flight’ didn’t shut off at all. The one event that escalated my existing autonomic issues to extreme levels and helped to create new ones… was also the one event that forced me to ground myself and take control of my own life.

The second year after the loss I was still experiencing severe autonomic issues but the whys and wherefore’s about the health issues were beginning to fall into place. I was mortified that so many fellow patients out there were just like me – with rare contact with doctors who understand (or who are even aware of) the multi-systemic issues, and no reliable way to find relevant, up-to-date and correct information themselves. (I have found the internet information on CRPS to largely be very hit and miss and rarely encompassing much more than the basic pain aspects. Morahan-Martin’s research has found this to be the case with health issues generally).

I wanted to help share the information I’d found, but it needed to be freely accessible and searchable. I decided to set up a website, and the best way for a website newbie like me seemed to be to use a reliable blog host. And so this weblog was born of my life-change. I had found a path along which I could help others and make a useful difference.

I had acquired knowledge which helped me to a) better understand my own condition and piece things together, b) to present things more coherently to my doctor as well as teach them more about my condition and how they need to think along different lines for patients with conditions like this; and c) which I could share with fellow patients all over the world.

Openness about reliability is very important to me, so I put dates at the top of the separate info’ pages so that readers could see when it was written and when it was last updated. Many websites do not do this, which is how people still think things like the ‘stages’ of CRPS are still being used when they were discarded so many years ago.

Poor quality and outdated information is rife in our patient group because it’s such a multi-disciplined specialist area that our general doctors just don’t get the new updates. Not all of us can read through research papers to filter the key information to add to the bigger picture, so I figured that’s where I can use my research skills.

And it’s rolled on from there. I’ve met other ‘expert patients’ who also have multiple co-morbidities and multi-systemic issues. We are part of an international informal network of CRPS information sharing. We admin’ in support groups and share information with others, some of us blog about our health conditions.

For my masters degree research I focused on what I could do to help fellow patients within the constraints of my academic field. I was overwhelmed by the number of wonderful patients who participated in the study and I’m now writing a research paper which I would like to be available to all via an Open Access research journal.

Dissertation parcelling up

Three copies of my research dissertation ready to be posted in March 2013

All of this gave me value and self-worth, gave me purpose and confidence, which rolled into other areas in my life as well. Before I knew it my physio’ Tai Chi classes led to performing in public at a Chinese New Year celebration in a local town, then I found myself winning medals at two national competitions and it’s exciting thinking of the potential for the future.The advocacy work and my involvement with other patients online has resulted in my meeting the most wonderful fellow patients who shine so brightly. I am privileged to have met them and honoured to call them my friends. I think about taking blog pic’s when I’m out. I write blog posts to share info’, to share experiences, and sometimes for pure silliness and a bit of a chuckle (coz that’s important too, of course)!

It’s now just over three years since the life-changing loss. I still think about it every day, I still wonder what happened, and it still hurts so much, but even though the pain doesn’t go away I am getting better at dealing with it. I have found new paths because the family context of my identity is no longer there, I needed to create a new context – I have been forced to focus on me, which was initially totally alien to me and felt all wrong. But I’ve increased my awareness, knowledge and I push myself all the time for more (within sensible constraints to keep my health ticking over, of course). My literature review is getting bigger, and it looks like it’s going to become a separate co-written paper with one of my peers who is medically trained so that we can both bring our skills to bear. Again,.. Open Access for availability to all would be wonderful. Oh and in 2014 I’ll be moved up to the intermediate level at the nationals so that’s ongoing to. So many plates spinning all at once! 😉

I always thought of myself in terms of being a daughter and a sister in my family. Who I was then was intrinsically linked with who I was related to, our family morals, likes and experiences. We’d always been there for each other and had come through so much together over the years. Now I have to see myself as me. Just me. I think I’m finally getting the hang of it!

I think we can safely say that the training wheels are off and I’m metaphorically thundering along a bumpy road with boundless enthusiasm. How about adding an international charity and associated information website into the mix? Oh yes, it’s coming! I’m designing tee-shirts for the shop when I am able (I’ll post a link once there’s items in there to look at, x), and it’s wonderful to know that all of the proceeds will be able to go towards making a difference. Everything takes longer because I am chronically ill, as are my counterparts involved in the same adventure, but we do what we can when we can and eventually we get there. Time has to be flexible, deadlines aren’t always viable, but with direction and determination I’ll get there!

x

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Thoughts on the international disability access symbol

There has been some talk of late about the international symbol of disability access…

accessibility

We all recognise this, right?

It’s a symbol that everyone can understand without the need for language. We all know that this wheelchair symbol does not mean ‘us’ unless we are disabled. So these symbols get used in many countries to point out disabled-specific facilities such as parking spaces, wheelchair accessible toilets, alternative doorways for the disabled, safety ‘shelter’ areas in multi-storey carparks for those who cannot take the stairs in an emergency, and so on. We all know what this symbol means – there is no confusion over where the disabled facilities are.

Nothing is ever that simple, however.

The universality of this symbol (metaphorically speaking, although aliens may well need disabled access too 😉 ) means that over time the association has been less about the facilities it was intended to represent and more about the ‘disabled’ it is now generally (mis)understood to represent. The repeated associations every time we see it mean that the symbol itself has affected our concept of ‘disability’ – Disability means being in a wheelchair. Being in a wheelchair means that you are disabled.

But the reality is that only 8% of disabled in the UK use a wheelchair.

Yes. You read that correctly…. 8%

So, yes, that means that 92% of disabled people in the UK are not in wheelchairs, and yet the symbol is now so entrenched within our cultural understanding as representing ‘the disabled’ that it’s hard, for those not already in the know, to figure out what on earth those ‘disabilities’ might be.

Assuming that a symbol for a whole population such as ‘the disabled’ is acceptable when it only represents 8% of that population, then other 8% alternatives should also seem completely acceptable to us, right??

Let’s see now…. well…. Age UK’s 2013 report of the UK 65+ age group shows that…

8% are black and minority ethnics

8% have no religion

8% have definite major depression

8% have gone without food to buy christmas presents

an estimated 7% have faecal incontinence

So, by the current disability symbol way of working we could safely represent all older people living in the UK as black and ethic minority atheists with mental health issues, a mysteriously pooey scent and a penchant for gift-giving.

Right??

Um.

No.

Because the disability symbol was never about representing “disability”, it was about letting people know where the disabled facilities are.

So what does this mean for the other 92%? And what about the part of the 8% of wheelchair users who can stand for a time? Indeed keeping muscles from wasting (atrophying) is oh-so important for those of us lucky enough to be able to do so. What are the responses from the general public when a wheelchair user walks to the back of their car to get their wheelchair out? Or when someone on crutches parks in a disabled spot? Or when someone who ‘looks’ healthy parks in a disabled spot and walks to the shops? What indeed? How is the wider population able to interpret this as within the scope of disability when they have the concept of the 8% in wheelchairs as representing us all?

How indeed.

The UK description of disability, as per the Equality Act 2010, is that you are disabled “if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”

It is quite clear from this that if you can walk but your lack of arms stop you reaching your cereal in the morning – you are still disabled, if you can walk but you have a tendency to pass out at any point – you are disabled, if you can walk but the type of brain injury you have that means you can’t process information for long without becoming incapacitated…and so on. This description is what can’t easily be put into a symbol, even though it needs to be to redress the erroneous cultural belief that has resulted from the current symbol.

Ask anyone in the 92%, or in the part of the 8% who try to walk when they can. Ohhhhh we’ve got stories we could tell you! About people shouting at us, and banging on our windscreens angrily, and kicking our outstretched painful legs as they walk past. Oh yes, we could tell you so much about what it’s like to not live like the symbol and still be disabled. It’s not pretty.

Concepts got muddled about with the 2012 Paralympics. The disabled in the UK are now fairly neatly defined as either heroes or scroungers. The heroes put on fake legs and win medals, or wheel to victory, or do some kickass volleyball moves whilst sitting on the floor. They officially rock! So the public ‘know’ that ‘disabled people’ can do things, too. The ones that claim benefits are therefore seen as shirking and not trying hard enough. The concept of being disabled as a result of being chronically ill was left out of the politicians’ welfare re-jig and the resulting media onslaught, and only seems to turn up in single case stories in the media once in a while. As is how limited Paralympians can still be in their day-to-day lives. But this conversation can lead many off track. The welfare issue is indeed an issue. A massive one. And it needs to be addressed. But this post is about the symbol that has mistakenly come to represent disability itself rather than disabled facilities. There is talk of changing it to something more positive, but the core issues never get raised. Talk tends to be within the same confines. A mere variation on a familiar theme.

In New York they came up with this…

new NY disabled symbol ..and yes – look at that wheelie go! They are a person, they are living their life, they simply happen to have wheels instead of legs, right?

Uh-huh, you’ve got it! This is all well and good, but it doesn’t address the fundamental perception that disabled people use wheelchairs when, unknown to most people, a massive 92% of disabled people are not the wheelies they are assumed to be. And seeing as 1 in 5 people in the UK are disabled in some way (and that the population mid-2012 was 63.7 million)… that means that 12.74 million people in the UK are disabled, of which 11.72 million do not use wheelchairs.

If you want to redesign a disabled symbol you can ask people what they think, but most people think a wheelchair is representative of the majority. You can ask disabled people but, you know what, we’ve got used to the disability symbol, too and though we want to not be shouted at in public when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc it is hard to think outside the box when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc!

How many of us knew how many disabled people actually use wheelchairs? I didn’t. Until I read the Papworth Trust’s 2012 meta-analysis report.

So…. to create a new symbol – look at the facts, look at the figures – who are you trying to represent in the symbol? And by ‘who’ I do not mean a generic stereotypical ‘who’, I mean what types of disability need to be included to make public perception more accurate? Because we have to bear in mind that the symbol also affects the way people perceive disability itself. Personally I’d like to see something like this become the norm…

Disability symbols

It clearly shows that disabilities vary and, crucially, that they are not always visible. It could mean less distress for those of us who do not fit the minority stereotype, and it could improve many many lives by doing so.

One concern might be that ‘anybody’ could then park in a disabled bay, but we still cannot park in a disability space unless we have passed the criteria to be awarded an official parking badge, and the alternate symbol may reduce the amount of hostility and flak the walking disabled have to deal with. Similarly, disabled bathrooms are blatantly designed for wheelchair access, but also very useful for head injured people who need less processing to deal with or blind people who just don’t feel like sussing out a new public bathroom layout and would find it easier to have everything close to hand for example. ‘Disabled’ covers different things which the current minority stereotype doesn’t, and a new multi-symbol could help adjust perceptions to something closer to reality.

What do you think?

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SSRI stabilisation effects on the autonomic nervous system, and my muscle tension side effects

SSRIs (Selective Serotonin Reuptake Inhibitors) are one of the types of medication which can be used to help stabilise the autonomic nervous system (ANS). When our ANS is dysfunctional one of the things it can do is to over-react to varying serotonin levels in the brain. The SSRIs effectively flood the brain with serotonin so that there are no longer varying levels for the ANS to react to. Simple, right?

Well, not quite. Each of us is an individual in our neurological make-up, each of us has a unique selection of ANS issues as a result of our dysfunctional ANS, each of us reacts differently to each medication.

As with most medications, there are a whole host of possible side effects. It’s a well-known joke in chronically ill circles that the list of potential side effects for each medication also tends to be a list of the very things we are trying to resolve! 😉

My experience of trying an SSRI began as a desperate attempt to improve my functioning whilst awaiting my autonomic consultant appointment. After the first couple of days enduring hideous side effects it settled down and made a significant difference to my day-to-day quality of life.

I was hoping that the med might reduce the continuous near-syncope (near-fainting) and maybe even reduce the permanent severe nausea. The reality was so much more.

I experienced improved baselines in…

– near-syncope  (less severe)
– nausea (improved baseline)
– brain fog (improved baseline)
– some of the neuro-psych’ deficits (improved baseline for issues with word recall and spelling)
– constipation (improved baseline)
– heart palpitations and dysrhythmia (more stable, still irregular bouts)
– body temp’ extremes (more stable, fewer events)
– tingling and numbish sensation in face and arms (now only when near-syncope)
– fatigue (improved baseline)
– disrupted vision (fewer occurances per day of blurriness, tunnel vision, appearance of writhing, ‘dust motes’ of light)
– eye tremors (rarer)
– breaking fingernails (improvement)
– strawlike hair (improvement)

I have plenty more symptoms than just these, but these were the ones that improved baselines as a result of the SSRI. (For more info’ on autonomic issues see here).

SSRIs are also used for nerve pain, but I was not expecting any change in my pain. However, it became apparent over time that there was a significant change in the CRPS pains in my legs (the worst, and longest affected, areas in my body) – they were much easier to manage than before. That’s some bonus, huh?!

SSRIs are most commonly thought of as being for treating depression. If we have depression as well it is possible that our mood baseline can also be improved. I didn’t notice any change, but that’s not surprising as I have not been experiencing any depression (I tend towards the chirpy side! 😉 ).

There is no ‘magic bullet’. There is never a medication for this level of medical complexity that doesn’t have pros and cons. And over time I found that certain other symptoms got worse.

The one that has been causing mega problems is the issue with my jaw. I have had a clicky right side of my jaw for years, but it’s never been a problem. About 20% of the population have jaw issues like this that do not develop into anything more. My dentist checked my jaw every appointment and each time there was no change – everything was fine. But the SSRI changed that.

The first two days of side effects had included extreme effects on my facial muscles. It felt like my face was trying to pull itself downwards off my skull and, according to Magic Dude, that’s what I looked like too! Pretty extreme, but my doctor hadn’t started me off incrementally so my body had a big change to deal with. Initial side-effects are worth working through to see what benefits the medication really has, and if you start on a smaller dose and build up gradually the transition is much easier than my first experience was.

The extreme first side-effects calmed down but I continued to experience jaw clamping. It was very distracting as I continuously had to unclamp my jaw throughout all my waking hours. No sooner had I unclamped the muscles than I noticed they’d tensed up again. This was so continuous that it’s no wonder that my jaw pain worsened over time. I moved from clicky jaw status to having to physically (and very loudly) clonk my jaw into a different position just to be able to open my mouth enough to fit some food in, and I had to do this for each and every mouthful. Eventually the clonking, and even the clicking, stopped, but I couldn’t open my mouth very wide any more and the intensity of pain in my face was increasing day by day.

I knew that patients with autonomic dysfunction (dysautonomia) need to be aware of possibilities of things such as temporomandibular joint disorder (TMJ) which involves lock-jaw and jaw pain, but I’m not one to assume the worst. So I kept on going with the SSRI because without it my quality of life was frankly dreadful. I had no wish to return to the days of crawling along the floor just to get to the bathroom without passing out. But there came a time when the pain was so relentless that I decided it was time to go to the doctor and beg for a different SSRI with less side effects.

The doctor changed my SSRI as I requested and lo and behold…. I got even worse! The jaw clamping disappeared during the lower dosages transition phase and then came back with a vengeance. Permanent cluster migraine, woot! *sigh*

That alternate med was not the answer. It turns out that the fact that they were both SSRIs could be the problem, rather than the side effects of those ones in particular.

As my doctor had no ideas on the jaw pain, I contacted one of my awesome fellow patients who has oodles of nursing experience and has been piecing together neurological aspects of CRPS over the years. I asked her which SSRIs might be more likely to avoid this side effect. She found a research paper which linked jaw clenching issues and SSRIs. I then conducted a journal search on “bruxism, SSRI” (bruxism being the medical term for the jaw clamping) and came up with several more papers on that specific subject. Various psychotropic drugs including SSRIs have been found to have an effect on our motor responses. Tensing of muscles is not an uncommon issue, so research has found that jaw problems are pretty common in patients taking SSRIs. Papers have considered and discussed this over the years and last year one paper declared a “clear link” between the two. (References are included at the end of this post).

Research on bruxism and SSRIs

This new knowledge allowed me to make a connection that I had not made before – most of the symptoms that were worsening on the SSRI were motor issues:

– I developed jaw clamping, jaw pain, lock-jaw and soft tissue pain in the area
– restless legs at night had got worse, particularly the extra tension and resulting pain
– my occasional tremors were worse and more frequent
– dystonia in my legs became worse when it happened
– dystonia in my hands developed (I don’t even notice until I feel my fingernails digging into my palms)
– muscle twitches and spasms had become much more common

So suddenly I had a potential reason for these worsening issues. Next on the list… how do I address this problem?

One of the papers (the one that my friend had found originally) pointed out that SSRIs tend to suppress dopamine which has a knock-on effect on our motor control. Ah-haaaaa, now we’re getting somewhere!

So my fabulous friend started thinking along the lines of mixed SNRIs (Selective Norepinephrine Reuptake Inhibitor). As the name suggests – it works in a similar way to SSRIs, just on a different neurotransmitter chemical, norepinephrine (known as noradrenalin in the UK) and, to a lesser extent, it also has effects on the dopamine levels. A mixed SNRI works as both and SSRI and an SNRI.

So in theory a mixed SNRI could potentially solve my problem (I’m crossing my fingers here!) as it should enable me to retain the stabilisation of my ANS that the SSRI has been shown to achieve in my body, and the SNRI will (hopefully) counterbalance the negative effects on my motor control by reducing the SSRI’s suppression of the dopamine.

I could, of course, have considered taking an additional med as well as the original SSRI. But multiple pharma makes things complicated. Some meds have a tendency not to work well together, and even if they tick along together nicely we are no longer able to pin down what’s causing which symptom as easily as we used to because there would now be multiple variables in the mix. As a rule, less complicated pharma is the preferred option.

For extra info’:

I was originally taking 20mg of citalopram hydrochoride (Citalopram)
SSRI, Citalopram

I was then moved to 50mg of sertraline hydrochloride (Lustral / Zoloft) to see if the jaw clamping would stop. (50mg of Lustral is effectively matched to the 20mg of Citalopram).

SSRI, Lustral

Also known as Zoloft

I reduced the dose of the Lustral very quickly to 25mg to reduce the unbearable jaw clamping and resulting cluster migraine whilst not entirely losing the effect of the ANS stabiliser. It was far from ideal, but just to try and get me through until I could get a doctors appointment to share the intel I’d found and beg for a change!

There are only two SNRIs that get prescribed in the UK as per the Medicines and Healthcare products Regulatory Agency (MHRA). They are Venlafaxine (brand names Bonilux, Depefex, Foraven, Politid, Venlalic, Winfex, Efexor) and Duloxetine (brand names Cymbalta, Yentreve).

In the USA the Food and Drug Administration (FDA) approve both of the above SNRIs, plus a newer variation on Venlafaxine called Desvenlafaxine (Pristiq).

My doctor’s surgery tends to prescribe Venlafaxine as a first port of call so I went with that.

I checked with the pharmacist before paying for the meds and she confirmed it was a sensible response to the issues I’d been experiencing, and that it is also a pretty good one for less side effects. Phewee!

SNRI mixed, Venlafaxine

Also known as Effexor

So I now have a starting dose of 75mg of Venlafaxine (which is split over two doses during the day). My awesome friend advises that at the lower levels it is effectively only functioning as an SSRI (and research shows that jaw clamping is indeed disproportionately high in patients on this lower dose), and that the SNRI aspect kicks in at around 150-300mg. So I’m not expecting miracles on the starter dose.

This is now my fourth day of taking the low dose and, yep, motor control issues a-go-go! Some jaw clamping but mega-issues with dystonia constantly trying to onset in my legs. Sleeping is even less possible at the moment and it’s tough going. I was advised to call the doctors’ surgery to arrange the next dose increase and did so this morning. I should get info’ on how much extra to take and a new prescription soon. Then I will keep my fingers crossed for an improvement at the increased dosage when the SNRI should kick in and, hopefully, rebalance the dopamine levels.

On sharing this info’ with friends I found that quite a few people taking SSRIs for varying reasons had experienced jaw clamping as a side effect, and that they and their doctors were not necessarily aware of the link with the meds. So I felt that a post was warranted to share the finds with more fellow patients.

As always, I hope this helps. Much love from me, x

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References for the research paper I mentioned:

Ak, M., Gulson, M., Uzun, O. & Gumus, O.  (2009) ‘SSRI induced bruxism: case reports’, Bulletin of Psychopharmacology, Vol. 19, Suppl. 1, pp 114-116

Bostwick, J.M. & Saffee, M.S. (1999)  ‘Buspirone as an antidote to SSRI-induced bruxism in 4 cases’, Journal of Clinical Psychiatry, Vol. 60, Issue 12, pp 857-860

Fitzgerald, K. and Healy, D. (1995) ‘Dystonias and dyskenesias of the jaw associated with the use of SSRIs’, Human Pharmacology, Vol. 10, pp 215-219

Khalil, R.B. & Richa, S. (2012) ‘Psychotropic drugs induced bruxism: a focalisation’, Annales Medico-Psychologiques, Vol. 170, Issue 3, pp 169-173

Kuloglu, M., & Ekinci, O. (2009) ‘Bruxism in psychiatry’, New Symposium Journal, Vol. 47, Issue 4, pp 218-224

Lareb (Netherlands Pharmacovigilance Centre) (2007) ‘SSRIs and venlafaxine in association with bruxism’, http://www.lareb.nl/Signalen/kwb_2006_2_ssri

Photo Challenge for CRPS Awareness, Day 27

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 27 – A picture of your favourite triumph in pain memory

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Okay, I’ve already mentioned the Tai Chi medals during the challenge, so today I’m going for the academic side of things.

On the 12th June I got the results for the final research module I’d completed in March towards my Masters Degree. I passed! Which also means that I have successfully completed my MSc. Hurrah!

Yes, I’ve got degrees before but this one was different. I studied for my BA Degree straight after school. I did it because I’d always expected to continue in education and back when I was 18 the UK education system did not involve scary tuition fees so the money we owed by the end of it could be just a few grand, not the devastating amounts that students find themselves owing these days. I was lucky. And I didn’t know how lucky I was at the time. I pottered along in life, got myself a job, met a guy, changed jobs to move to the same area as him, bought a house…. all that jazz.

By the time I studied for my BSc Degree I was in lots of pain. I studied it to retrain because I had a career path in mind, I wanted to make myself useful in the world and I’d spotted a niche that I could make a difference in. During that degree my health got worse, I went from crutches to wheelchair, I went from working to having to give up work, and I went from having no clue what was wrong with me to getting a diagnosis. The diagnosis turned up in the same month as my final exam.

My health was to scupper my career plans, but I didn’t know it back then so I rolled straight on into my MSc. I studied three of the four modules then had a major life rethink, and moved to a different county to be closer to my family. My family have always been most important to me in all the world so, unsurprisingly, my assessment of my new disabled life made me decide to change everything to be nearer to them. But I still could not give up all hope of following my career path, so I moved closer to my family but not right over into the same county because my hypothetical working future had more of a chance in the inbetweeny bit of geography. So, closer to my family and more of a chance of making a positive difference in the world. Ace, right?

But I had no money left to pay for the final module. As time went by my health got worse rather than better. By the time I’d saved enough money to do the final module (that took 6 years) the neuro’ symptoms were rife. My chances of studying to the standard I had done previously were seriously compromised. My viable study time was no longer ‘just’ affected by the chronic pain issues, but also by severe autonomic issues as well as brain fog that could render my brain pretty useless for days, and even weeks, at a time. I’d be a fool to spend the money on a venture like that, right?

So, fool or just plain determined maybe, I figured that my choice was to either a) try it and fail knowing that I’d at least tried, or b) not bother and always wonder if I could have done it. The second option didn’t appeal at all. So I went for option ‘a’.

Towards the end of the time period that I had available to get my research completed and written up as a dissertation… I lost my brain. For three looooong months. Good ole CRPS, thanks a bunch! So by the time I could comprehend things properly again I was three months behind. I was in a bad position but I wasn’t going to give up. The encouragement and belief in me from my friends online was phenomenal, plus my fellow students have been such a lovely bunch of people to travel this road with, of course Magic Dude did anything he could to help me healthwise so that I could concentrate on studying, not to mention the two amazing ladies who were my research reliability coders.

On the day that I completed my dissertation I took photo’s of the event. Whether I passed or failed would not detract from the achievement of just completing the challenge and doing the best I could for my fellow patients who I hope my research can eventually help.

But I did pass. And now I’m awaiting hardcopy feedback from the university so that I can address any issues before completing the paper for submission to an Open Access journal out there somewhere. I even entertain the thought of a PhD from time to time! But one step at a time. And each achievement should be celebrated rather than rushing on past it. Life is to be lived, good moments are to be savoured, and being proud of yourself is a good thing.

Completing the challenge was an achievement. Passing was a bonus!

MSc

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P.S. If you’re thinking about studying despite your disability I say “go for it”! In the UK there is a Disabled Students Allowance (DSA) which can help you. It applies to all universities including the Open University (if, like me, regular attendance is not an option). Here’s a post I wrote previously about studying with the help of the DSA.

Photo Challenge for CRPS Awareness, Day 12

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 12 – A picture of something you love

I am my own advocate. I continue to learn about my condition(s) and keep readjusting my overall view to find the best way of working for my body long-term. But as I am part of the informal global network of patients I am in a position to do what I love most… which is sharing that self-advocacy with my fellow patients. We pool our knowledge, ask each other questions, pass on research information and helpful links online. All to help each other. That’s what I love.

Best of all is that meeting other expert patients means that we get to piece together new understandings and links that are more apparent from our broad views as patients than they can ever be from specialist doctors’ views of their specialist area only. CRPS is a multiple disciplinary disease, it covers the ANS, CNS, auto-immune system and neurological changes. So it’s not surprising that many other conditions overlap with, or form part of, CRPS, for example: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Multiple Sclerosis, Dysautonomia, Hypermobility Syndrome, Ehlers-Danlos Sydrome, and many more. There are plenty of patients with these individual conditions, but many CRPSers have multiple conditions as part of their overall CRPS. The more I read about each of these overlap conditions and relate it to what I’ve found in the research about CRPS, the more concepts and understandings keep falling into place, or trying to (the complexity of this disease is a challenge!). I’m not medically trained, but it is phenomenal how much you can learn when you have to, and to be the best self-advocate I can be this is what I’ve had to do. If I can share what I find with others, and share what others have found and subsequently shared with me, and what specialists have found and made available through their research papers…. well, between all of us we have the best chance of pinning down key ideas, discovering links, piecing together new concepts which can then be scientifically tested.

Advocacy online

The only drawback, of course, is that I have CRPS!

Which means that I’m very limited in what I can do each day and for how long at a time, both physically and mentally. So progress and learning is naturally in fits and starts. But slow progress is better than none, and between us all we’ve made lots of progress, xx

Margaret Mead - small group of peeps can change the world

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