Fibro and CFS, misunderstood disorders?

EDITED: FEBRUARY 13th 2014

I originally wrote a blog post called "Fibro and CFS, mental disorders? WHO must rethink" in response to an article claiming that "The World Health Organisation (WHO) is due to "label Fibromyalgia and ME/CFS mental and behavioural disorders".

This article has since been withdrawn due to inaccuracies. WHO has clarified that there is no intent to classify these conditions as such in ICD 11. However an image of the article is still available here if you wish to read it.

WHO tweet: Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11

It remains the fact though that a large part of the medical community believe that these conditions are primarily psychological in nature. They also have a particularly bad press with the general public. This is concerning due to the seriousness these conditions can have.

Rather than remove my blog post entirely I have therefore simply amended it by removing any references to today's inaccurate WHO article, as it is otherwise still relevant to these problems.

                                                           _____________________

I am not an expert on fibromyalgia, ME and CFS and the differences between these 3 conditions. I am aware though that a great deal of research is currently ongoing and there is more and more evidence arising which suggests that these are physical illnesses (eg impaired pain receptors in fibromyalgia, SIBO and fibromyalgia, CFS may be autoimmune disease) These conditions have however have long been overlooked, misunderstood and more importantly dismissed by the medical profession and the public alike.

This dismissal is what has been the most damaging in my opinion. If the illness is not taken seriously then little research will take place. Without this research, medical knowledge and understanding will not advance and any possibility of proper treatment will remain out of reach. Furthermore patients will continue to be misunderstood and belittled by medical staff and the general public.

Sadly the feeling among the general public is that these are not "proper" illnesses on the same level, say, as MS, lupus or arthritis. Yet in my experience serious cases can be just as debilitating and require just as much support. This support is not just physical and practical but emotional too. Not receiving this and instead getting disbelief and even condemnation from friends, family, doctors, co-workers, acquaintances and the media is isolating and soul destroying.

A certain amount of bias also exists among medical professionals. While some doctors are sympathetic towards their patients, others are still very dismissive. Others still believe that these conditions are primarily psychiatric in nature. In some countries such as the USA the DSM 5 reclassification also makes these conditions particularly vulnerable to being classified as having a somatic symptom disorder.
There is nothing wrong with having a mental illness. However having a physical illness misdiagnosed as a mental illness is very wrong as it means that most patients will not get the treatment they need. Worse, they may be forced into unnecessary and inappropriate treatment. Imagine an MS patient being sent for CBT to alleviate their symptoms. Sounds barbaric? Not so long ago MS was also considered a psychosomatic disorder because the symptoms varied so much from patient to patient and doctors did not have a clear cut way to diagnose the illness. We now look back on this in horror. I believe one day we will do the same for fibro, ME and CFS.

I will admit to a certain level of personal bias. When I first got sick my symptoms fit MS. However this was unsupported by any test. Instead of delving deeper, my doctors in their wisdom decided that I had some form of psychosomatic disorder. Some went further and decided I was malingering. I was harrassed. One doctor went so far as to say "Think what you are doing to your family". I was sent to psychiatrists who found nothing wrong. This was ignored.
Eventually I was diagnosed with lupus (SLE). By then it was a little late. Permanent damage had already been done, not to mention 4 terrible years during which I began to believe I was an evil person for being ill! It took many years for me to shake the shame and guilt I felt. The psychological damage this caused cannot be emphasised enough.

I don't blame my doctors for not diagnosing lupus immediately. I was far from a textbook case. I do blame my doctors for reverting to a psychosomatic/malingering diagnosis when they couldn't find out what was wrong. It turns out that lupus is one of the most misdiagnosed disorders, known as "the great imposter" and many patients are told their symptoms are psychological.

This attitude of the medical profession must change. There is no shame in saying "I don't know". Medical research has only gone so far and doctors can only work with what they have. If something is unexplained it may simply be that medical research has not yet advanced enough to explain it. I strongly believe that this is the case with fibromyalgia, ME and CFS. More recent research tends to support this.

I can but hope that this research will continue to be well funded and shed light on what is really going on. Only then will patients receive the treatment they need and the stigma surrounding these illnesses finally disappear completely.

Fighting illness isn't always about battles

I like days like today.
I woke up feeling terrible and have felt very ill all day. (I know I'm definitely ill when I switch on my favourite video game, pick up the controller, groan and switch it all back off again!)
BUT... I have had a good day.
TAKE THAT illness! *pulls rude childish faces and blows raspberries*

I got to spend some all too rare time with my youngest sister who leads a hectic lifestyle in London as a freelance classical musician (french horn). She had stayed the night and I HAD intended to take her out for lunch.

I was most put out as I had been doing really well recently (relatively speaking) and was sure I would be well enough to do so. But after learning that pizza is apparently very expensive in London for some reason, I ordered some and we had a picnic in the garden followed by strawberries. She then went off to catch her train.

By then I felt far too ill to do anything at all, so slept and watched my fish tanks all afternoon. By evening I felt well enough to speak coherently with my friend who had come to visit. We had a good old chat before watching a couple of episodes from "Game of Thrones". We have both read the books so know the plot, but are really enjoying the series anyway. It is very well done.

I hope I will feel better tomorrow, but if I don't I have plenty of little short things I can think of to do even while feeling dreadful.

So there you have it. Today might have been considered a loss and a failure. I didn't manage to take my sister to the pub. I was incapacitated for the majority of the day. And let's face it, I felt like death warmed up!
But in fact I enjoyed my time with my sister anyway, had a wonderful lunch, some precious time outside the four walls of my flat and an enjoyable evening with my friend. I call that a win.

Had I tried to "battle on" and go to the pub one of two things would have happened:

1) I would have collapsed or had to come home early and caused a scene and great distress to my sister.

2) I would have "made it" but not enjoyed a minute of it and caused worry to both myself and my sister as we would both have been wondering if I was about to collapse.

Instead I was able to spend a relatively pleasant time with sister despite the fact that I wasn't feeling at all well. Neither of us was worried or concerned. We enjoyed our meal. We enjoyed our surroundings. 

Had I tried to "battle on" during the rest of the day and do things, I would not have been able to enjoy the evening with my friend and, from past experience, I know I would likely be very ill tomorrow. As it is there is every chance that I will recover. If not, well, at least I have given myself the best possible chance to do so.

I didn't manage to get much done today but, well... there IS a reason I'm on long term sick leave from work! Right now it means that if I have to put things off to tomorrow, or the next day, or the day after that, it usually isn't the end of the world.

I strongly believe that beating the illness isn't always about battling on and doing things despite it. I think it is about enjoying life even when feeling very ill and even when your plans have gone awry.

An exhausted lunch

People can see how my disability and illness affects me in the obvious ways. My electric wheelchair for instance is a dead giveaway. Needing to use wrist splints to pick up my spoon to eat is another.

What can be less obvious are things like debilitating fatigue. This affects me in strange ways. One thing I find tends to happen is that I become incredibly uncoordinated, clumsy and absent minded. As I am usually on my own when I am tired, this is one aspect most people don't see.

Here is an ironic look at a real life example. One single incident is not terribly "disabling" in itself but apply it to everything you attempt to do that day and you can see that it mounts up to a bigger problem.

An exhausted lunch

I think I'm tired. Just tried to "make" lunch, which was soup in a mug, which my carer had left ready for me.

Step 1: Take cling film off mug.
Step 2: Take cling film off hand
Step 3: Take cling film off other hand
Step 4: Pick cling film off floor
Step 5: Get up off floor
Step 6: Put cling film in bin
Step 7: Detach cling film from bin lid
Step 8: Repeat Steps 2 and 3
Step 9: Repeat Step 6
Step 10: Have a rest
Step 11: Put mug in microwave
Step 12: Drop mug
Step 13: Rescue mug
Step 14 Wipe up escaped soup and check enough soup is left for lunch
Step 15: Repeat Step 11
Step 16: Pick up saucer to put on mug to avoid splashes
Step 17: Drop saucer
Step 18: Rescue saucer
Step 19: Repeat Step 16 and put saucer on mug
Step 20: Start microwave
Step 21: Realise I have somehow set microwave to defrost
Step 22: Rescue soup
Step 23: Repeat Step 20
Step 24: CAREFULLY retrieve mug and go to lounge
Step 25: Discover I am now too tired to eat

#Beddingout: Lost Life? Busy Bed!

Artist Liz Crow is currently performing "Bedding Out". During this she takes to a bed in a gallery for 3 days to show the hidden side of disability which no one usually ever sees. It is a reaction to the current welfare rhetoric.

As part of this she organised a photo competition  #beddingout for fellow disabled people who are also house or bedbound depicting their bed and what it means to them.

This really got me thinking. I'm not a particularly good photographer, but I went ahead anyway and made the following arrangement and photo. It was more for my own benefit and pleasure than anything else and I don't intend to submit it. For one thing it is rather personal and needs a bit of explaining, which rather defeats the purpose!

As many of you may know, after 6 months stuck in my bedroom I replaced the sofa in my lounge with a daybed. This has proved to be one of the best decisions ever made and completely changed my life. My lounge is big and bright and a lovely place to spend time in.

I took the photo on a sunny day with the light streaming through the large windows onto my daybed. Most of my friends and guests don't get to see my lounge during the day, so this is a chance for you to see what I enjoy while you're not here!

I've given my photo a title (click to enlarge):

Lost Life? Busy Bed!

Many of you who know me will understand what I mean.

The left hand side of the bed shows what most people see when they think of my life: a life lost, in darkness where the wheelchair and the wolf (illness, lupus) lurk.

The right hand side of the bed is a mess! It is supposed to be! Bathed in light it shows that life has gone on, even though it is in bed. I threw on some of the things I do, all from my bed: books, games, audiobooks, sewing, laptop (and everything that allows, from campaigning to skyping to surfing the internet). Many of these things I enjoy doing with friends who continue to visit regularly.
I included small ornaments indicating interests I still enjoy, like Dr Who, Science Fiction, Science, and even my fish tanks.  The 3 pictures above the bed are ones I made myself and depict my love of wildlife and nature which I now indulge via documentaries.
I also added the toybox that my goddaughter and little sister love to play with when they come on their regular visits. Only, they don't play with the toys on the floor. Oh no! They love nothing more than to clamber up on the bed and play with me, dragging as many toys up as possible. The bed becomes a place of adventure, imagination, giggles and joy.

So yes, my life has become restricted. There is no doubt about that. I am extremely ill and I do need help and support. But at the same time life has gone on. People often ask me if I am bored. I think my bed has the answer to that!

P.S. As an aside, this is where the Spartacus Report was mostly written: in that bed, under the duvet with that laptop and a bucket load of painkillers!

Half a life?

Musings about the half of my life since I became ill and disabled.

At the end of this week I will turn 34.
Coincidentally it is exactly 17 years to the day that I went into hospital with what was thought to be a "minor head injury" following an accident during a handball match. We now know that it was in fact either the trigger of my lupus or my first real nasty lupus flare, although, because it "pretended" to be MS it baffled doctors for quite a while and I didn't get diagnosed until 4 years later.

Whichever it was it marked the start of my illness and subsequent disability, a completely life changing event. I went from an active sport loving teenager just about to finish school to someone stuck alone at home hardly able to sit up.

A half life biography

Eventually as the illness fluctuated and the doctors did get a grip on things matters improved. I was able to go back to school and get my A levels. I went to university to do a chemistry degree. Unfortunately the illness  worsened dramatically at the end of my first year and I got kicked off the course for "health and safety" reasons. My doctors advised me to abandon university and return home. Knowing that if I did I would probably never leave again, I refused and instead started a maths course from scratch. This was a really good decision as I turned out to be talented and maths is something you can do from your bed!

The next few years were very hard. My illness and disabilities were increasing. I had to give up every single hobby and sport I used to do, even those I had relearned to do from a wheelchair, like archery, and the new hobbies I had started like playing the clarinet and saxophone. I needed care, deteriorated from walking stick to wheelchair, was often so ill I was in hospital and even when not, could rarely attend lectures. Despite all this I finished my degree, graduated top of my year and got a golden hello award with my funded PhD place.

My PhD years were really fun and are among my happiest memories despite being highly difficult physically with many new symptoms developing, such as epilepsy and a rapid deterioration of my muscle condition. I made some very good friends I think I will keep for life. One great memory is trundling down the aisle in my electric wheelchair as bridesmaid at my best friend's wedding! I was terrified I would roll over her veil!

My PhD was also successful. I published a very good paper and on the back of that obtained an all too rare EPSRC funded postdoctoral research fellowship at the end of my PhD. My illness was getting worse and worse so I went 75% part time so that I could manage. I "officially" worked for a further 5 years. However I was off sick for most of the last 2 and eventually went on to long term sick benefits. I held out until I sent off the last paper I was working on for publication. At this stage though my memory and concentration were so shot that often I didn't recognise my own work from one day to the next or remember conversations I'd had with colleagues. When you're trying do do international research, this is a slight issue! I'd also had a couple of serious health scares.

Despite my sadness at having to give up work, I'm very proud of the work I did. We published some excellent papers in our field and as a result the group in which I worked ballooned from just two doctors and two PhD students when I started my PhD to one which now comprises 10 permanent members, 2 research fellows and 7 PhD students.

After giving up work I kept busy looking after my little god daughter and doing various enjoyable hobbies before eventually getting involved in disability activism. This became very successful when I co-authored the Spartacus Report. This and other projects with We Are Sparacus, in particular "Past Caring", took a lot of my time last year before I eventually had to call it a day as my illness had continued to progress and I could no longer manage.

I'm now at a slight crossroads. I'm never bored as I still have many hobbies but am not sure of any long term goal and am unused not having one.

Half a life?

So I have now officially been ill for half my life and my entire adult life. When I first got sick I used to think of my life in two parts: pre and post illness. I felt I only lived properly for the first half. I wanted to get better so I could start "living" again. I've realised that I don't do that any more. I'm not sure when this stopped, although I think it was quite some time ago. I find it is no longer possible to try to imagine my life "if I hadn't got sick".

The illness made me come back to the UK from France where I was finishing school. It made me switch to mathematics in which I had a successful (albeit short) international academic career.  It meant I took a strong active role in some disability activism.  It did make me give up things I loved like sport, but it also meant I tried other things like archery, learning the clarinet and the saxophone and playing in a concert band. In time as the illness continued to progress I also had to give those up too, but those are experiences I might otherwise never had had.  On a personal level it has shaped the person I am. I have some wonderful friends and am godmother to a beautiful 4 year old. These would not be part of my life otherwise. There can be no going back.

That said I do still wish I wasn't ill right now. I don't mind the purely "disability" issues quite so much as there are usually ways round them. Getting round the illness is far harder. Being "healthy and disabled" and being "sick and disabled" are two extremely different things.
When I was less ill and closer to the former, there were still ways of working around my illness and having a job and an active social life outside my home. But at this stage of the illness I can see no way round it and my life has become far more limited in the past 2 years.

But all in all I am usually content and often happy. I have some good friends and supportive family. I am always busy even if I cannot move from the daybed in my lounge 95% of the time. I am always bemused when I hear people bemoan that they are bored!

I have had to radically change my activities and hobbies and my life today would be unrecognisable to that of the young 17 year old who was hurt 17 years ago. She would most probably be horrified. In fact if I remember correctly, before the accident she once blithely said that if she couldn't do sport she would want to die! But then she hasn't had the benefit of 17 years of living and adapting and inexplicably finding that life is incredibly enjoyable under circumstances that most people would outwardly judge are not. Which, incidentally, is why no one should EVER judge someone else's life.

Half a lifetime of being ill? Yes. Half a life? No. Not only have I done a lot while being ill but I have enjoyed life while I have done it. It has been one heck of a rollercoaster ride and I am willing to bet it will continue to be.
Right now I do feel at a bit of a crossroads and am still adapting to having stopped work. I feel I want to find some sort of long term goal and am very unsure of what I can do. But hey! So far things have had a habit of working out in the end. Bring it on. I'm not done yet.

Attack of the Spoon Pixies

The term "spoonie" is a familiar one to many people working in disability and chronic illness circles. Put simply it describes anyone who experiences debilitating fatigue and has had to learn to continually plan and pace their daily activities. The name comes from the essay "The Spoon Theory", and is an excellent way of explaining fatigue to relatives or friends who just "don't get it"!

In essence energy is represented by a number of spoons. While people who are not ill have unlimited amounts of spoons, for some unknown reason "spoonies" only have a set amount each day. Every activity, be it getting dressed, eating, or going out uses up a certain amount of them. The harder the activity, the more spoons are used up. Once there are no spoons left, you're stuck for the rest of the day! Hence why a "spoonie" has to be so careful and plan their days in advance.

Some spoonies are even more unlucky and their number of spoons varies considerably. Some days they have a lot of spoons and can do a reasonably amount. Other days they have hardly any spoons at all.

Why is this?

We have given this much thought and finally have the answer everyone has been waiting for.

SPOON PIXIES!

Spoon Pixies belong to the same species of creatures as the Tooth Fairy and are a cousin to the Common Garden Gnome.

Like the Tooth Fairy they visit at night when you are asleep.

While the Tooth Fairy takes away a tooth and leaves some money behind, the Spoon Pixie is a much nastier piece of work. It steals spoons but leaves no trace of its visit.

This is why it has (until today) left both patients and doctors completely baffled.


While we cannot prevent visits from the Spoon Pixie a number of suggestions have been made.

1. The first of course is to make sure spoons are carefully locked away before going to bed. 
2. Secondly, it may be possible to stop the Spoon Pixie. Leaving sticky tape beside the bed may prevent it from reaching its goal. 
3. Finally, a much more daring course of action being researched is to actively bribe the Spoon Pixie. In this way it may even be possible for the Spoon Pixie to return some stolen spoons! Leaving coins and shiny objects under the pillow or by the bedside *may* entice the Spoon Pixie into a "spoon exchange". Research in this area is also ongoing. 

We are open to more suggestions.