CRPS Awareness photo challenge: fear and coping

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

Fear is the mind killer

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

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


Photo Challenge for CRPS Awareness, Day 10

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

Day 10 – A picture of your something you’re afraid of

Well, initially Magic Dude took a piccy of a spider for me! *shudder* But this is a photo’ challenge for CRPS awareness, so I feel I would be missing the opportunity to share some insight on living with CRPS if I went down the spider route. (Plus, I’d keep seeing the spider picture as I flick through blog stuff and that’s not something I relish!)

As a patient with multiple chronic conditions with a large dash of progressiveness, fear is something I am used to. I don’t want to be afraid of what the future may hold, or other things that may ‘go wrong’ with us. Let’s face it – that would be a waste of my time as who knows what the future holds? And even if we could say for sure, dwelling on it means life passes us by and I’d rather live my life thank-you! 😀

So… let’s look at the immediate issue – what if an unplanned for event means that I end up in hospital? Most of us humans do at some point, after all!

If I do, the information the relevant doctors and nurses will require is quite simply only going to come from me. The likelihood of them having a clue about CRPS in it’s basic sense, let alone in it’s complex multiple system reality, is about as likely as every other doctor and nurse I’ve ever met….. either none at all or a wonky out-of-date version.

So…. what can I do about it? Carry information?

Sure, but carrying research papers with ‘read in an emergency’ written at the top of them is not really going to help matters if things have to be dealt with in a hurry. Medics have standard ways of dealing with specific situations and wherever I don’t fit into that I need to be able to highlight quickly and simply so that they can quickly and simply work around the issues.

I have a wallet card. Originally I printed off the RSDSA card (see my Useful Links page) but my condition developments mean that a pain-only information card is just not appropriate for me any more. So I made my own, printed it off and covered it in sticky-backed plastic to keep it legible in my wallet.

Every now and again I have to change or add bits. New health information or medications need noting. Loss of family ties (which is horrifically common for patients with chronic, complex and little understood conditions such as CRPS) means having to update the emergency contact if that changes, too.

There was some discussion in one of the CRPS groups the other day, about being prepared when we go out. A wallet card was something that a few of us mentioned and those that don’t currently have one were asking what we have noted down on our cards.

So, here’s my new wallet card I’ve been creating today. It helps to reduce the fear of inadvertent mistreatment by medical staff and thus reassure me that if they have the facts upfront they may be able to at least help avoid creating any new problems for me!

Elle and the Auto Gnome, Wallet card

Which, in close-up, looks like this….

Front of wallet card

Front of wallet card

Back of wallet card

Back of wallet card

If there’s anything you think might need adding to my wallet card, or aspects that might be handy to add to a general wallet card, or indeed any comments on this that could help others, then please do comment below as I am sure that your input will help fellow patients piece together what we each need to include on our own wallet cards if we’re going to create one, x


Additional note added 11th June 2013:

My reply to a question about the non-adrenaline anaesthetic: Yep it’s CRPS related.. because our autonomic nervous systems are disrupted our ‘flight or flight’ mechanism kicks in really quickly over very little,.. we want to do everything we can to keep our nervous systems calm so that we can get through surgery / dental treatment / anything invasive with as little raised response as possible. Adrenaline is part of the fight or flight response, so we really don’t want even more of it in our body than is already being released under those circumstances. So using non-adrenaline (non-epinephrine) anaesthetic means that we reduce the likelihood of the body over-reacting which means less chance of spread or new issues in the area and less chance of a new faulty autonomic issue precipitated from the over-reaction, xxx

Disability protest barely covered on the news

In case any of you were wondering what is going on in the UK with regard to the removal, sorry ‘reform’, of the disability benefits system…

There are various disability groups attempting to raise the profile of what is happening to the disabled in this country. Focus groups around the UK were asked about how many disabled people they think are fraudulently claiming benefits, and the figure that transpired was 70%. You may remember from my previous post that the actual government figure is merely 0.5%, (less than all other benefits apart from pensions). So the view of the general public is distorted. Okay, so now we know (officially) that this is the case.

So what’s happening now then?

Well, some of the newspapers are beginning to write a bit about some of the more salient points. A bit. Sometimes. It’s an improvement, though.

The ‘ATOS Games’ (mentioned at the end of my previous benefits post) kicked off with a protest outside the ATOS building involving hundreds of people. ATOS are the company running the disability assessments for the government. The company that has the task of removing benefit from a large percentage of the genuinely disabled and declaring them ‘fit for work’.

But ATOS are the ‘middle man’, they are only doing what the government contract asks/tells them to do. I feel that it is more relevant to address the cause, rather than the symptoms. Many others feel the same, and yesterday a peaceful protest occurred outside the DWP (Government Department for Work and Pensions) offices in London. I don’t currently know how many people were there, I can’t find a report of numbers. Even the BBC barely gave it a mention, morphing quickly into a report about the paralympics being great, but how it was terrible that some cash machines did not have voice commands, (Coz that’s soooo much more important than people no longer being able to live, right?) (Yes, I briefly dissolved into sarcasm. Sorry about that. How unprofessional of me).

And that’s why I’m sat here writing this, when I should be winding down and taking care of the pain in my body. But how can I let this pass without commenting on it? Why is this barely being reported at all? Why is the footage of London police pushing, shoving and dragging disabled protesters not priority news? Why did the local news on TV make a point of showing yet another minority bad person who pretended to be disabled but was found out and taken to court? What is going on here? These are not rhetorical questions. Somebody somewhere is making the decision that this is not to be top news. Which makes the current state of affairs even more frightening.

It is truly shocking that the general public are not rising up against the wholesale abuse of some of the most vulnerable people in society. But this lack of clear and comprehensive reporting is keeping wider society from hearing about just how horrific the situation is. So the task of reporting falls instead to those of us who are living it.

I have heard this morning that some of yesterday’s protesters went and asked a BBC reporter why the BBC was not covering this situation in any detail. I have also heard that there may well be a bit of subsequent reporting coming up soon as a result. I hope so. And if there is, credit to the protesters who asked and to the reporter who went away and did something about it. Fingers crossed.

The figures are out there, we know there are less than 1% disability fraudsters, although admittedly the numbers have so far only really been out there for those who can be bothered to look for them. So what is going on?

Seriously Britain, what the flip?

Everyone in this country will know someone with a disability, there are so many disabilities and illnesses that it’s just statistically unlilkely for anyone to not know someone who is disabled in some way. In addition, none of us know when illness or injury may strike. This is relevant to us all.

These protests need to be made. The latest figure I have found for suicides and deaths of those who have been pronounced ‘fit for work’ is over 1,300.

Just in case you missed it….. more than…. one thousand three hundred.

Significant, no?

Likelihood of this number of deaths occurring in those who are truly fit for work…? Yeah. Not very.

So, in case no-one actually ever tells you about it. I am telling you about it…. Yesterday peaceful protesters gathered outside the British government offices for the department of work and pensions. Some of them made their way into the building. That was probably a rather bad idea, better to remain truly peaceful, but understandable considering the level of fear and distress these changes are causing. However, bearing in mind that many of the protesters are disabled, even if they don’t ‘look’ it, this video was a bit bit of a shock to see.

Please support British disabled in asking for nothing more than a fair system. We need your help.

Reeaally need your help.


In case you feel you would like the above clip in a broader context, here is a different, longer video recorded by a protester..

British disability benefits, shockingly shameful behaviour

New petition link added August 19th, 2012 (see first links below post), thank-you, xxx

Currently the London Olympics is on the TV all day every day. It’s on the news. It’s on the morning chat programs. It’s everywhere. The games seem to be going well, even the transport system is coping (admittedly this is largely as a result of us Brits being warned that it will be awful so none of us are going anywhere!). This year we also had a royal wedding and the Queen’s diamond jubilee. It’s a year for celebrations. A year to wave our flags and be proud. And yet I am currently torn between ‘joyful Brit’ and ‘ashamed to be a Brit’.

The force that has torn my attitude into two parts is that of the recent undercover insights into the UK disability benefits system. As this information has been popping up online I have been finding out that even friends from overseas are aware of the changes occurring. One person used the word “barbaric” and to be honest… I agree.

The old system certainly did need to be changed. The previous Labour government (left-ish winged) introduced a new scheme in 2008 which they admitted was lacking but that a pilot scheme would be run so that amendments could be made before rolling it out to the rest of the country. Of course you would expect that the election of a different government could well make that journey more bumpy , (current government is now a coalition: majorly right-wing, minorly left-wing), but an economic downturn took the limelight in the news headlines, and somehow this pilot study just got rolled out as it was in it’s raw form.

“Can you hold a pen?”, was the famous question that initially made us all quake in our boots.

“Yes, even if I don’t know what it is at the time/am in the process of fainting/am in so much pain that I don’t really know what’s going on…” were some of our many varied replies. And the ‘yes’ box would simply be ticked.

Here is a link to the directives in which 11,000 disabled per week have been assessed in the light of.

It doesn’t take many brain cells to spot the consistently massive error continuously sledgehammering into our consciousness as we read those directives. Funnily enough, they have been found to be incredibly inadequate (i.e. a completely irrelevant bunch of arse), particularly for those disabled individuals who have conditions which are inconsistent and thus vary throughout each day. There are no grey areas in the form that the subcontractors have been advised to fill out on our behalves. It is black, or it is white. There are no other options with which to answer. So we are either terminally ill or obviously severely physically limited… or… we are absolutely fine and dandy. Oh skippety hop, apparently lots of genuine disabilities no longer exist. We must all be in remission, right? (Did you spot the sarcasm? Sorry about that!) In the light of these directives CRPS is not a disability, nor is any form of dysautonomia, or ME, or CFS, or mental health issues, or…, or………  Simply because we cannot say  “we cannot pick up and move a 0.5 litre carton full of liquid”, but we also cannot say “we can pick up and move a 0.5 litre carton of full liquid”. It’s not rocket science, it’s just that many many disabilities are not a yay or nay scenario. They are a “yay sometimes but with resulting pain and other condition issues, but nay the rest of the time because our conditions are varied and we permanently have to work around the symptoms as well as biological and neurological payback”. Oh, is there not a tickbox for this option? Grrrr.

A black and white assessment of a many coloured disabled population

This new system is costing government and taxpayers £100 million to roll out to all, and an additional £50 million every year in appeals owing to the level of fault in the system. The fault isn’t minor either, around 38% of appeals are successful, and if a professional is involved to shed light on the health of the individual then the success rate is more like 80-90%. This isn’t just hurting the disabled, it’s costing everyone a vast amount of money. Helping people to get back to work is admirable, the main problem is that they are targeting people who really want to work, but genuinely can’t.

The UK definition of disabled (under the Equality Act 2010) is….

“A person has a disability if:

  • they have a physical or mental impairment
  • the impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities”

And just in case that wasn’t clear enough….

“For the purposes of the Act, these words have the following meanings:

  • ‘substantial’ means more than minor or trivial
  • ‘long-term’ means that the effect of the impairment has lasted or is likely to last for at least twelve months (there are special rules covering recurring or fluctuating conditions)
  • ‘normal day-to-day activities’ include everyday things like eating, washing, walking and going shopping”


“Progressive conditions considered to be a disability:

There are additional provisions relating to people with progressive conditions. People with HIV, cancer or multiple sclerosis are protected by the Act from the point of diagnosis. People with some visual impairments are automatically deemed to be disabled.”

I reckon it’s now probably really easy to spot an ‘invisibly’ disabled person in the UK, coz we’re the ones with the expressions of incredulity and abject terror!

Hilariously (?) the voiced main reason for reform was to get those on benefits back to work, and yet there are reports beginning to surface that the replacement general benefit is going to offer less incentive to get back to work than the old versions being replaced.

For those of you not familiar with British benefits, there are politicians referring to a ‘benefit culture’ over here. They are referring to a percentage of society who were raised by parents on benefits, brought up to live supported by the system, and then themselves progressed into a benefit funded life as adults, thus perpetuating the problem. This is a small percentage of society, but one which gets noticed and which the rest of society is not too chuffed about.

Now…the really important bit… …these are people on a low income benefit, (called Income Support for many years and still referred to as such). It is ‘means tested’ (based on your income) and so it exists to support those on low incomes… carers, single parents, refugees learning english (only for their first year), people on parental (maternity/paternity) leave. So you can see how a fraction of people can continue to exist on this benefit for many years. Particularly carers, who do a sterling job for barely enough money to survive on. Not to do the single parents down, of course, just that as a disabled person I have extra insight into the carers life. A small number of people on low, or no, income, however, may have the opportunity to get off benefits but prefer not to. They are the sub-group to which the politicians are referring.

The disabled are not on Income Support. They are on Incapacity Benefit. Courtesy of their being incapacitated. The clue is in the name, see?

However, for many years I have been told that Incapacity benefit does not exist by all sorts of professional people filling in forms for me. It doesn’t always show up as an option on their forms, it just isn’t known well enough and gets missed off the lists. Everyone has heard of Income Support, though. The incorrect assumption is that disabled people are on this benefit. And thanks to some exceptionally poor media reporting, very unhelpful wording and theme-blurring by politicians, the misunderstanding is that the ‘scroungers’ includes most of the disabled.

Pause for perspective….. It is estimated that there are less than 1% of benefit fraudsters, and there are already teams in place who thoroughly, and secretly, investigate those individuals. Additionally, the government’s own statistics show that there are eligible people out there who do not apply for benefits to which they are entitled, either because they choose not to, or because they do not know that they are eligible.

The reality is that whole benefits system is being re-jigged, but the media/politics focus is on (a) the ‘scroungers’ and ‘fakers’ and (b) disability benefits. Unsurprisingly these badly presented and blurred themes have become one and the same in the minds of the general populous, and attacks on the disabled has risen substantially. As if to underline just how much people don’t understand the paradox they are perpetuating, the type of disabled who are bearing the brunt of these attacks are the ‘obviously’ disabled, adding even more trauma and difficulty to their already complex and difficult days.

There have been two investigative programs televised recently in the UK about this issue. They both uncovered the same issues.

First error: hiring an IT firm to do disability assessments. ATOS is a French company with no experience of working with disabilities. As a researcher myself I am all too aware of the dangers of an assessment like this even when it is undertaken by appropriately qualified professionals in the field. At the very least the assessments should be written by top healthcare experts in conjunction with top health psychologists. With the foundation of the project already throwing away all the crucial knowledge and complex ethics understanding which is required, of course it was going to be useless. No surprise there at all. The question to ask is why was there no effort to have any knowledge involved in this assessment at all?

An undercover primary care doctor found that: of the individuals assessed, allowing any more than 12 to 13% to remain on disability benefit would result in the assessor being assessed themselves because this is considered too many! This means that 87% of all individuals on disability benefit are going to be declared ‘fit for work’. Only a fraction of these will get any support.

This directly contravenes the Equality and Human Rights Commission’s (EHRC) ‘article 27’ which refers to work and employment of the disabled. It states that disabled people have the right to employment and that they should not be discriminated against, (for more information here’s the link), but that they are also to be “protected against forced or compulsory labour”. The British government agreed to this, (their one exclusion was with regard to the armed forces, which was challenged by the EHRC). And yet the British government is now openly contravening this across the board.

As many of you will know, CRPS is known in the USA as the ‘suicide disease’.  (I won’t go into why here as it would be a-whole-nother post, but if you want to know more about CRPS please take a look at this page). It concerns me hugely that seriously ill individuals who struggle daily to cope with their conditions will be put through a stressful process which will negatively impact further upon their health. The 87% (or 86% if you remove the ‘fakers’ percentage) declared fit for work whilst knowing that their conditions cannot cope with it are in a terrifying predicament. Particularly if the suddenly absent monetary support requires a number of working hours that cannot be built up slowly and steadily to reduce the inevitable health impact.

For anyone able-bodied who finds themselves in this situation the negative impact on the body is severe, so for someone with a chronic illness…, well, where do I start? Healthy people understandably experience depression under these circumstances. Chronically ill people experience depression, anxiety, fear, even terror because of the inevitable increase in their already severe symptoms. This is particularly the case for anyone who’s disability involves the nervous systems, autoimmunity, neurological deficits, neural rewiring/chemical imbalance, … in fact.. exactly those disabilities which get disregarded by these unthinkably blinkered directives.

Bearing that in mind, parliamentary figures that have recently come to light show that during the three years ending in October 2011, 31 people declared fit for work died during their appeals. However, The Guardian reported that Panorama’s investigation found that 32 people who were pronounced fit for work have subsequently died, not overall, ..that’s 32 people dying every week from January to August of 2011. There is no breakdown of this figure, so we currently do not know how many of those individuals died owing to stress induced health escalations, how many to more direct effects on physical health and how many committed suicide. But the mere existence of a death toll demographic is horrifying enough. Yet the tick-box assessments continue.

As a CRPS patient, suicide is sadly a familiar theme. Severe conditions which are nonetheless ‘invisible illnesses’, do result in suicide when the distressing day-to-day climb steps over into the impossible. Every human being can only take so much, and in the global online community we hear about fellow patients who have had some recent hiccup in their medical lives, (be it loss of meds, a knowledgeable doctor or financial support), and that they chose to step over that edge. Not because they wanted to die, but simply because they couldn’t continue to live in those worsened circumstances.

Many CRPS patients that I’ve spoken to have stood at the edge. To come back from there takes monstrous effort and huge strength of character. Those patients are not weak, they are strong beyond most people’s imaginings. Many patients live their lives with that edge always in sight.

Today I read a comment on an online post about these benefit changes which recognised the suicide risk involved. In response to that was a further comment from one patient who already knew of two young people in their area who had killed themselves as a result of the benefits changes.

Various individuals have started online petitions on the UK government website. I heard a few days ago that these petitions are repeatedly getting hacked and signatory’s names removed. I would like to post a link to these petitions so that you can have the opportunity to add your voice, and may well do so, but I am cynical about whether your voice would still be there at the end petition date. At this point it’s all beginning to feel a little Orwellian. (Later addition to this post: two petitions had finished recently, there is one still open until 1st November. I’ve included the link below so please please add your name before then, x)

Of course the foreign IT company is doing such a grand job of ripping vulnerable people’s lives apart that they have also been awarded the contract to assess with regards to the other disability benefit (Disability Living Allowance). This benefit does not depend on income as it is for any disabled person to put towards travel to appointments, hospital car park costs etc, which is why the amount awarded varies depending on how the disability affects each individual.

The recent media storm where journalists finally seem to be catching on to the idea that people are suffering as a result of this reform has enabled the word to get out, but is it enough? After so long with the general population getting the horrifically wrong idea that the disabled are scroungers, are they really going to take this enlightenment on board? Or are they going to think it’s some sort of ploy by the alleged disabled scroungers?

The media may well slip into silence again as the ATOS assessors are now being asked to sign the official secrets act. Unnecessary on top of their existing professional ethics, and unrequired for the years so far until the recent media nosiness into the behind-the-scene workings. ATOS claim this is normal procedure that’s been in place with other contracts for years, but the key point to note here is that it was not normal procedure for the Work Capability Assessment for years… but now it suddenly is.

Shockingly there is also a dastardly ‘clause 99’ in the Welfare Reform Act which stipulates that before a disabled person can appeal against a Department of Work and Pensions (DWP: the benefits department) refusal for benefit after assessment…. they must first get the DWP to reconsider it. Yes, that really is exactly as it sounds –if the DWP says no, you can ask nicely, but if they still say no then you are not allowed to appeal. No appeal. End of. If the assessor made an error, if your health condition has been misunderstood… tough…. there is no appeal. This was questioned in 2011 and the answer was clear:

“…to ensure that fewer people end up going to appeal and that there are fewer successful appeals, because long waits for successful appeals serve nobody’s purpose.” 

–          Chris Grayling, Minister of Work and Pensions

(Elle and the Auto Gnome says: “Ahem… serves no purpose? Except, of course, that of the genuinely disabled person….”)

Grayling expanded by saying that the intention was to get it right in the first place….

…Erm….is that why they hired an IT firm to do a tick-box version of a really complex healthcare/psych’ based assessment?

We can scream and shout at ATOS all we want, but they applied for the contract and won it. They are doing as requested. The government refuses to make available the full contract. With the Freedom of Information Act in place, this withholding of requested information is concerning, to say the least, but ATOS is doing what the government has told them to. And that is why it is so particularly terrifying.

But multiple charities and voices for the disabled are now finally getting heard above the white noise of ignorance and disinterestedness. It is notable that the British Medical Association (BMA) is now openly against the Work Capability Assessment. But with the assessments running since 2008 and due to end for 2014, what are our chances of a do-over?

What can we do to help these vulnerable people?

Here’s a letter to quickly download and send to your G.P. to ask for their support in opposing the inappropriate WCA, written by the Social Welfare Union,

Here’s the main official e-petition on the UK government’s website:  This petitioncloses on 1st November 2012. It is already number 11 on the petitions list, can we please get it into the top 10? Please ask your friends and family to sign this. It takes but a moment and they will be glad to help someone they, or someone close to them, cares about, x

Here’s the new petition link (added to this post August 19th, 2012) which asks for a more humane system than the one causing 32 deaths per week

I am aware also that DPAC is planning their own ATOS games to coincide with the Paralympics (Mon 27th – Fri 30th August), they have mega respect for the paralympians it is no slight on them, it’s their way of hounding ATOS.



Baumberg, B. (2012-08-07) ‘In defence of benefit take-up statistics’

Begg, A. (2012-08-03) ‘It’s not the benefits fraudsters who are targeted in the media, it’s the disabled’ in The Independent

Blog post on “Benefit Scrounging Scum: life in a broken bureaucracy with a bendy and borked body” (2012-08-03)(two authors, Sue and Kaliya, one of whom is a professional journalist)

Brennan, S (2012-07-31) ‘Sick and disabled people are being pushed off benefits at any cost’ in The Guardian

“Britain on the Sick” by Channel 4’s ‘Dispatches’,

Cassidy, S (2012-08-03) ‘Half a million disabled people may lose benefits under reforms’ in The Independent

Convention on the Rights of Persons with Disabilities, Office of the United Nations High Commissioner for Human Rights (pdf available via the following link…)

Disability and Equality Act 2010, UK Government website (,

“Disabled or Faking it” by BBC2’s ‘Panorama’,

Dunn, A (2012-08-02) ‘Don’t misuse your disability benefits – the DWP might’ in The Independent

Equality and Human Rights Commission, ‘Article 27: Work and Employment’,

Hundal, S. (2012-04-12) ‘EXCL: ATOS forces doctors into secrets act’

Income Support benefit, UK Government website (,

Malik, S. & Gentleman, A. (2012-04-12) ‘Private sector medical staff assessing benefit claims told to sign Official Secrets Act’ in The Guardian

Pollard, T (2012-08-02) Blog guest post by mental health charity ‘MIND’ who are working with other charities and the UK Government to try to make changes to the malfunctioning  assessment procedure

Poulton, S. (2012-05-25) ‘Oh dear, Dave. Now GPs have turned on you. Time for an exit strategy on the disabled, perhaps?’ in Mail Online

Scope CEO Blog (2012-07-30) ‘Watching the dispatches undercover footage’

Social Welfare Union clarification on the percentage of appeals which are successful, 2012-08-10, thank-you, x

Social Welfare Union (2012-08-05) ‘Old debate sheds further light on the right to appeal benefit decisions’

Social Welfare Union (2012-08-07) ‘Universal credit doesn’t help tenants off benefits and into work’

Social Welfare Union, (2012-08-05) ‘New disability tests will ‘cause suicides’ say disability campainers Disabled People Against Cuts (DPAC)’

Work Capability Assessment (WCA) list of tickbox directives,

Other links:

‘Thousands of disabled people have signed an open letter criticising their portrayal as “benefit scroungers” in the British media’ (2012-05-31)


Experiencing cognitive change

Trying to make sense of the cognitive decline remains one of the most terrifying aspects of my recent experience.

Not being able to follow a conversation, pick up on a context, remember really obvious words or spell words that I use really regularly is scary in a way that the physical pain levels, nausea and even the permanent near-fainting, never are. Losing our brains is often what we humans say we could never face. Conversations about ‘if I lose my marbles when I get old’ crop up from time to time in most families. And we all see it as a distant possibility towards the end of our lives. It becomes a more real possibility the older we get, as does everything associated with age and a naturally deteriorating body. But how do you cope with losing important and relied-upon brain functions in a period of just over two years? When you’re still in your thirties? And which directly relates to your existing pain condition, but which no-one ever forewarned you about?

Um. I just don’t know. So I’m ploughing on in the hope that I’ll work it out!


Many people experience things like this, but we just don’t think of it as the norm’. It’s easy to feel separate from this possibility that has already happened to other people through various types of acquired and traumatic brain injury. How do they cope? How do any of us cope with such a change? It is a simple answer which one of my besties, who has far greater brain issues to deal with than I, has given: “What choice do we have?”

And that sums it up, really. We get on with it because what else is there to do? Falling apart emotionally happens but it’s a response, not a permanent solution or way-of-working. And my friend is truly an inspiration for getting on with things within the restrictions of her conditions.

There’s no point in wallowing. True enough. But there is a period of shock, confusion and fear followed by finding out ‘why’ and then, sometimes, a period of being peed off because couldn’t someone have warned you about this so that you could realise what was happening at the time? So that you don’t put your foot in important conversations and have no idea that anything untoward has occurred until you lose people from your life with no comprehension of why or what is going on. Worse still, when they stipulate exactly what meanings they’ve read into your conversations and behaviour, it still makes no sense, it makes things worse. It’s like they have been brainwashed into thinking you’re actually someone else with an opposite personality and moral core to who you really are and have always been. ‘Cept it turns out, during a slow and horrific period of realisation that takes months or even years, that actually it seems that the taken-forgranted brain was seriously malfunctioning, (owing to oxygen starvation and ‘fight or flight’ shut-down, amongst other things). I now know that anything that I thought I clearly remembered or understood should now just be regarded as merely my faulty brain’s view, (and as a pure fluke if I actually ever remember anything correctly), because I now know that my brain was not processing information coherently at aaaall. I was having conversations that were totally different to the actual conversations. My understandings of what conversations were about and how important they were turned out to be terrifyingly different from what the other people in the same conversations experienced. It’s like I’ve lost a couple of years of my life as well as some really precious people, and it’s because of this thing that was developing.

Now I’m trying to wake up and do something about it.

No-one can prepare us for this stuff, well, pretty much no-one. The tertiary level specialists that actually have a clue are spread really thinly and, as I’m finding out, getting referred to them is no easy journey. Just because you have autonomic dysfunction does not mean that you’ll get to find out that an autonomic dysfunction specialist even exists, let alone get referred to one. Partly owing to primary and secondary doctors not having a clue, and partly owing to the unhelpful presentation of the dysfunction which can too easily be misread as other simpler medical issues, (which quite rightly get refuted with each inappropriate secondary doctor you get sent to). Oh yes, and the fact that primary doctors in the UK now control their own pot of money which means that if they don’t understand your condition they’ll whinny and rear at your sensible request and run to the boss-with-the-money for a conference.


It’s a hard road for anyone with a rare and invisible illness. We explain what our condition is an awful lot. Even to our doctors. We become ‘expert patients’ and are used to using our good-brain-days to scour some more research papers to understand our own condition better, looking for ways in which we can help ourselves based on our own increased understanding of the esoteric neurological condition. We need to help ourselves because by the time we find out what’s happening and tell our doctor, they then whinny at us for a few more months before eventually referring to a secondary level specialist as a last resort who invariably says “If only you’d been referred to me sooner” and then explains how, if they’d seen you sooner, they could perhaps have done something, but that after all this time the faulty-ANS has made this new issue permanent and so all we can do is try to alleviate the symptoms if at all possible. It’s a repetitive cycle of unhelpfulness with a side order of deterioration.

We learn ways of dealing with all this. We develop amazing coping mechanisms. You know, depression is not something to be afraid or ashamed of, it is simply when the circumstances in your life outweigh your coping mechanisms. And that can happen even when you’ve become a coping superhero. We all have our bumpy rides. Some of us feel like that’s just the way life is these days! I’m good at dealing with bumpy. But finding the strength to research and then explain my own condition developments to doctors is really difficult on top of trying to function with the developments themselves. I am afraid of what is happening to me. I am afraid that belatedly getting referred to the correct specialist will be as detrimental as it has been every other time. I don’t know that would be the case but I am only human, and humans worry about stuff. Especially big stuff like not being able to function in normal conversations any more. I always said that since developing the chronic pain condition that I no longer take things for-granted. But it turned out that I forgot to really enjoy my brain whilst I still had it on top form.

I don’t know what the future holds, but I keep getting insightful views of it from the perspective of the types of deterioration that have been triggered in my body. I have a better idea than most about what the future holds because I have a condition and it gives me clues. And I don’t like the shape of it. I don’t know if I am strong enough. I am oh-so strong, I know that now, I have worked wonders with my levels of CRPS pain and it’s all down to my sheer determination coupled with my understanding of how the faulty-ANS was behaving. Basic understanding, but it did the trick. I got to a stage where I could live my life and be me. Lots of pains and restrictions, yes, but still me despite it all. But I don’t yet know how to do that with regards to losing my brain. What will be ‘me’ if/when it gets worse? What will be left will be my heart, love, soul, strength, but also my frustration at the confusion and difficulty at functioning in conversations and with processing more generally.

I now live with permanent brain fog and permanent continuous near-fainting. The degrees of severity vary, but there is a baseline beneath which neither ever goes and the rate of deterioration is truly frightening. I never experience clear-headedness any more. And I miss it.


I’m writing this first thing in the morning because, once I’ve woken up properly, I can think most clearly then. The moment I sit up in bed the heart starts going crazy. Sometimes it’s already beating a fast rhythm when I wake. But it always gets worse the moment I get up and start moving. And once it’s done that, it’s with me for the whole day. No escape, no relief, that’s it for the day. Fast heart rate + low blood pressure = fainty experience. Plenty of stuff can make it worse. And being able to think clearly enough to write is really rare these days. So I pick my moments. Magic Dude went off to work this morning and I propped myself up in bed with the laptop because I felt the urge to write this while my brain is functioning close to its best baseline. It’s taken me ’til lunchtime to write this.

I’ll find a way through it. I always do. But this has been a particularly tough ride. I want to keep my brain as functional as possible. Here’s hoping the doctor sees the sense in referring me to someone who actually has training and experience in treating this, then maybe I can eventually get some improvement. I’m quantifying symptoms, making pretty little graphs and collecting helpful research at the most basic level for the doctor to look at if he wants to understand it better. I’m being the best ‘expert patient’ that I can be under the circumstances. Now I’ve just got to hope that my doc’ can do his best doctoring under the circumstances, too!


This Too Shall Pass

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” – Frank Herbert, Dune

I grew up knowing Frank’s Herbert’s quote. But it never became truly meaningful on a personal level until I became disabled. Not for the disability aspect, but for the continuous high pain levels and total lack of information about what was going on. To feel so much unbearable pain and find that even doctors could not understand what was going on, that causes distress, it causes fear. Fear of this being forever. Fear of there being no end.

But Frank Herbert also used the well-known adage ‘This too shall pass’. And so it does. Although sometimes I just allow the time to pass through me and beyond. Just for a while. So that I can run on neutral for a short time, to get me through the worst moments. We can’t do so for long, and it doesn’t fix the problem at hand. But if we can switch off for a few hours here and there, or sometimes just for a moment, it is helpful to give our minds and bodies a rest from all that adrenaline and tension.

My well-read copy of ‘Dune’

We cannot sidestep our fears, they will lurk and lurk. Nothing is achieved by worrying, but sometimes we just cannot avoid it. And, as tough as it is to do so, training our minds to step away from the worrying is so very important. Facing our fears and working through them can boot those worries into something we know. That we’ve already dealt with. So their reappearance is familiar because we’ve already taught them a lesson before and we know we can do it again! Yes, they rear their ugly heads from time to time, but we know them, we’ve already worked through the fear, and we made it to the other side. Otherwise we might have missed out on life. On moments that can be glorious. A moment in the sunshine. A message from a friend. A really good cup of tea!

I have found ways which work for me. I am the queen of distraction techniques that work for me! We each know ourselves best, and I’ve got really good at turning my brain round to look at something else. Not to ignore the real issues, but because I’ve already turned them over every which way, I know them as well as I know myself. So I just do not need to spend time watching the sad re-run! The best techniques are the ones that make me feel empowered, useful or creative. So I research information on my conditions to better understand them, (and to better explain it to the doctors, of course!), and I tell other people what I’ve found and write this blog just in case anyone out there finds it useful/amusing/distracting, too!

Nowadays, the bad times are when new negative information throws me into a phase of assimilation to try to regain my, already hard-won, equilibrium. If the circumstances are severe enough to outweigh my coping resources, then I will falter just like anyone else. That’s when I resort to really immersive but utterly unproductive distraction! It takes something really emotionally traumatic for me to have to resort to this, so it’s a very rare event. But when necessary, I do this so that I can break down the overall fear into more sizeable chunks, otherwise I just can’t think straight as my thoughts tend to spiral round in an endless circular fashion.

My ultimate survival tactics!


During one of these times I ‘discovered’ my boyfriend’s Playstation! It was the only thing that helped to shout over the worst of the pain and distress because it commanded my immediate and continuous attention. Yes, my real world was falling apart, but that dude with the big gun was trying to kill me and I needed somewhere good to hide and to find some more ammo’! Desperate times call for desperate measures, and so I became an avid gamer for a few months. I broke down the task of facing my fears into little chunks. And I came through it rather like an over-emotional plane in really scary turbulence, but I did come out the other side! The events that caused me such pain still rear their heads on a daily basis, but I know them, I have already faced them. They are my sadness. But I do remain.

After this time has passed and my brain has stopped the emotional uber-chemicals phase, I can step back from the situation a little. Employ my academic tendencies to assess in a less emotional manner, and then decide what to do next. After the fear has gone, there really is just me. Only I remain. And it’s my life, my body. Also my physical pain, my own disrupting symptoms, and only I can deal with them. There is no point in waiting for others to help me. I haven’t met a doctor, yet, who is trained to treat my dysautonomia. So I have to pick myself up, dust myself down and continue to find ways to help myself.

We all have our bumpy roads to travel. And no-one can be strong all of the time. But it can sometimes be surprising just how strong we can be when the circumstances demand it. We should give ourselves more credit.

The ‘me’ that remains after the fear has passed is always stronger.