Tuesday, 27 September 2016

Millions Missing

Couldn't be bothered to find jods so that's just a nice blue sock.
Apparently this is a thing today: people are sharing photos of a pair of their shoes to symbolise the ‘millions of lives unlived’ because of ME/CFS.

I was diagnosed with ME when I was 17. I couldn’t stay awake for more than a few hours at a time, I was seriously underweight because I’d given up on eating, I was dangerously sick and I was desperately unhappy. At the time, I was trying to finish my A Levels and to get into Cambridge, but I couldn’t do five lessons in a row or five days at school a week. I stopped everything I enjoyed (mainly athletics and huge amounts of music). Instead, my days were full of three things: school work, hospital/therapy, and sleep. School were pretty good about it. They helped me through hospital admissions. They arranged for me to miss lessons and to have somewhere quiet to lie down and sleep at school. They agreed to cut down the number of days I was in school each week. I dropped a subject (Russian). I did what homework I could manage and prioritised coursework. I was already doing exams separately with extra time because of my wrists being hopeless (EDS) but they also agreed to do things like changing the order of two three-hour exams on one day so that I could sit the more important French exam in the morning and General Studies in the afternoon.
This was Chav Day. I forget now why we had Chav Day.
At the hospital, there wasn’t much they could do. I had all sorts of therapies which didn’t work, and some which helped a little. I had CBT sessions with a kind lady who was one of the only medical professionals to understand my ambition (to go to Cambridge) and to help me to achieve it, instead of telling me to adjust my dreams. I did gentle physiotherapy - so far as I was able.

I was severely depressed, and was diagnosed with bipolar disorder. In an attempt to control the dangerous sides of bipolar, I was on heavy medication which exacerbated the exhaustion and hopelessness. In between my AS Levels and my A Levels I had two stays in a psychiatric hospital and underwent treatment at another clinic in London for a week. It's hard to reconcile the fervour of my Cambridge goal with my inability at the time to contemplate my continued existence into the next week. Looking back, it’s easy to imagine how I was feeling: angry that my friends were doing fun things that 17-year-olds do and I was getting home at 4pm, watching kids’ TV in an attempt to stay awake long enough to eat tea at a normal time, then heading to bed at about 7.30pm; frustrated that I could barely walk into another room without collapsing; fear of the future; and so on. To be honest, although these things did bother me, I mostly felt a huge emptiness: I was so tired, so miserable and so desperate that any strong emotion was too much to cope with. It takes a lot of energy to be angry, frustrated, or fearful. In difficult situations where you don’t have the energy for emotion, you just feel detached from everyone and everything around you. Apathy is possibly the closest word to describe it, but even that fails to do justice to the extent to which ‘normal’ emotions are alien to you - it's not that you don't feel the way others do, but that you don't feel anything at all. Despite the best efforts of my body and my mind conspiring together, I did get into Cambridge and I did get the grades.
Pale, thin and tired but wearing the gown in Old Court!
I am very lucky. I recovered to the extent that I could go to university (just!) and complete my degree (just!).
I even had some energy to enjoy Freshers' Week, and eventually I put some weight on!
ME settled down a lot whilst I was at Cambridge, but it was never far away and I had to be careful about over-exerting myself. I barely went a week at Cambridge without having to go to the hospital for one reason or another. I had a great GP who was very supportive and who always made time to see me if I needed her. I had numerous ambulance rides and a lot of missed deadlines. Every term I would let myself believe that that would be the term when I didn't have to go into hospital, but I never achieved that goal. That said, by the time I finished (just one year late) I was infinitely healthier than when I started, even though my EDS had progressed so much. Managing fatigue and learning to pace myself properly is especially important given that I will never be free of Ehlers-Danlos Syndrome (and all that comes with it) and bipolar disorder. The breakthrough moment was when we found the right medication for the bipolar, but that took more than three years of fruitless experimentation.

These days I have finally learned a lot more about pacing, but I still overdo it sometimes. One of the hallmarks of ME fatigue is the ‘boom and bust’ pattern - whereby you feel pretty good one day, so do too much, but don’t realise it was too much until the next day or two, when it suddenly catches up with you.
Nobody wants to see a picture of me sleeping, so here's one of Rosie with her squeaky toy hamburger instead.
Two days ago I was busy and achieved a lot. Yesterday I was in agony but rested a bit and exercised only gently. Today I have been exhausted all day and I haven’t left the flat. I feel pretty dreadful. I’m in a lot of pain. I can’t stay awake. I feel pretty miserable. I don’t know what will make it better. The trouble with this kind of fatigue is that it is linked to that bit of your brain that makes you feel useless and worthless. It’s linked to the bit that remembers old wrongs and the dark memories that you’d rather not dwell on. It becomes a downward spiral, and there’s no easy way out of it.

Chronic fatigue is difficult symptom to live with. It’s unpredictable, which makes it hard for you to hold down a job or to just to keep engagements with friends. I tend to avoid arranging things because I’m always aware that I might have to back out at the last minute, and since I’d rather not do that it’s easier not to commit in the first place. Chronic fatigue takes away from your life without giving anything positive in return. It stole a good part of my adolescence and early adulthood. It is ever-present and dominates my current plans. I am definitely a high-functioning ME sufferer, to the extent that I would consider my ME to be in remission - after all, I can do half-marathons, so things can’t be that bad! The problem is, though, that ME never fully leaves you. It’s always there to remind you when you’ve done too much.

These days, I CAN get out and about. I’ve adapted my life a lot and it’s nothing like I thought it would be, but I can do things and achieve things. I can have meaningful relationships and I can work towards goals. My ME was very bad, but I’m enormously lucky that it has improved this much.
This post is therefore intended to raise awareness of those people who are stuck on the other side. I have a foot in both camps - I remember the desperation and misery of ME, and I have the means to communicate with the outside world. There are millions of people with ME, and vast numbers of them are stuck at home, housebound or bedbound. Most don’t have access to adequate medical care. Most will struggle to convince government officials that they need financial help in order to continue living an expensive life in which they cannot work; a life of disability. It is not OK that people are dismissed as lazy, hysterical or unreliable because their illness isn’t understood and because their illness robs them of the ability to engage more fully with the outside world.

The shoes I am sharing below are my vaulting shoes, because:
  1. I would never have started vaulting if it hadn’t been for the RDA, and ME is part of what led me to the RDA.
  2. Two days after wearing these shoes and becoming a national champion, I am crippled by the remnants of my ME.
  3. What I have achieved this year in vaulting I would never have thought possible even this time last year. In those years where I really suffered, I didn’t think I’d even still be alive by now - and nor did I want to be. My vaulting shoes represent a lot of fun, hard work and achievement.
I’ve gone for one foot in and one foot out. Unlike people sharing pictures of their shoes because they themselves are invisible to the world, I am visible. The world can see one part of me; the part that is in a shoe; but there is another part it doesn’t see. It doesn’t see the part that has to spend the majority of each day just resting. It doesn’t see the difficulty faced every day by every person with a debilitating chronic illness. That empty shoe represents the part of me that I hoped I would be today: the part that isn’t dependent on a wheelchair; the part that lives a full and independent life; the part which doesn’t rely for continued existence on a huge cocktail of medication; the part which can be frivolous and go to bed whenever, or go out for a drink (alcohol!); the job I would hope to have and the earnings I would hope to make; the PhD I would have been most of the way through; the miles I would have run on my own two feet; the friendships I would have had the energy to maintain. That empty shoe represents the fact that the person I thought I would be when I was 14 or 15 is never going to emerge. It represents the things I can’t do, and the things that I have lost. In doing so, it represents many others whose position is similar to me.

I have one foot in and one foot out. It’s not an easy way to live, but it’s the best I can hope for. I just hope that I can keep it that way.

Tuesday, 20 September 2016

Pain Ladder - Migraine

I have a subconscious set of 'pain ladders' which I adhere to when I need to deal with pain. It's only recently that I've realised that my brain has created them and that it's actually quite useful to be aware of them more consciously!

All of these ladders start at the bottom, with things I try to do every day to handle my pain. I can then go up the rungs if the pain is still there. It's probably easiest to show you what I mean rather than tell you, so read on...

I have more than one 'pain ladder', but here's one to kick us off: The Migraine Pain Ladder
  1. At Rung 1, it's all about lifestyle choices which prevent migraines. For example: I need to (try to!) sleep properly, eat properly, drink plenty of non-alcoholic stuff (easy as I'm often thirsty and I can't drink booze), get plenty of exercise and keep a good daily routine of activity. Bizarrely washing always helps, probably as it's just a nice way to wake up in the morning or relax at the end of the day. I don't have any major trigger foods to avoid (except for mint, which most of the time is fine and sometimes is dreadful!), although a shortage of caffeine or a shortage of salt can bring on a migraine pretty quickly. 
  2. Rung 2 is to use any prescribed prophylactic (i.e., preventative) treatments. I take amitriptyline every day and it's made a huge difference to how often I get migraines. Caffeine is a good prophylactic too! 
  3. Rung 3: although I don't have specific food triggers, I do have environmental triggers. Anywhere that's hot and stuffy, or too bright or too dark, doesn't have natural light, is noisy, or is generally overwhelming (busy, for example) is only bearable for a short while before resulting in a migraine. Generally, being outside is better, but I need to keep my head quite warm even if it's cold out, and if I'm squinting in the sun then bad things happen. Other than that, I find certain smells and tastes really difficult. Usually food smells are OK but the perfume section of a department store is always hellish for me - I can't hang around there long!
  4. Rung 4 is all about the simple things I do throughout the day to counter the early stages of a headache: brush hair, roll shoulders, click joints, get fresh air (wiggle nose! You can breathe in better even when stuck indoors if you just make yourself look like a pig...), massage head/neck/jaw/face (try using a hot flannel), have a drink and maybe a snack - things like that.
  5. Rung 5 recognises that things aren't great and I need to do something. At this level, I usually take sumatriptan alongside some NSAIDs. This is pretty much the weakest medication that my migraines will respond to. If a snack hasn't helped I often do a blood sugar test too to see what I'm in need of. At this stage I also heat up a wheat bag or a hot water bottle to press to my face - lots of people prefer something cold but the cold makes my migraine far worse and the heat is very soothing to me. The problem is that I usually need to apply it to one or both of my eyes and so for that I have to sit out from the rest of the world for a bit! This leads into the next part of Rung 5 - have a nap. For this, you need comfy clothes, a cool (but not cold) room that is dark and quiet, and plenty of cushion support to get comfy.
  6. If I wake up and I still have a headache then Rung 6 is all about making sure I've tried everything: more painkillers, snacks and water, and try to do some moving about, especially around loosening the shoulders and the jaw. Caffeine can help but in some people it’s a trigger.
  7. Rung 7 - things to avoid during migraine:
    moving my head too much (side to side, up and down, etc)
    getting dehydrated
    intense smells and inconsistent or loud noises
    getting too hot
    letting the muscles in my face, neck and jaw tense up
    cold foods (ice cream)
    other people!
  8. Rung 8 - things to try to do:
    eat a bit, even if you feel really sick, because not eating anything will only make the migraine worse.
    let yourself rest, and tell other people in simple language how you are feeling and what they can expect of you (this is a useful thing to do before you feel dreadful if possible!)
    keep breathing - deep breaths not only bring more air in but also encourage you to relax the chest and neck, which can help relieve some of the pain instantly.
  9. Rung 9 - medical help. Either suck it up until you can see your GP, or, if your pain is extreme and unusual or you're worried, ring 111 (in the UK - non-urgent NHS helpline). The first time I had iritis I thought it was just a migraine but I felt so dreadful that I rang them. They thought it potentially sounded like early stages of meningitis, I went to hospital, and it turned out to be iritis. The symptoms had just seemed like a bad migraine (massive pain in my eye - which is normal for me - , sickness/vomiting, dizziness/fainting, intolerance of light/sound/smell, etc.) but it's a good job it got diagnosed because, in extremis, iritis can cause vision loss and it was surprisingly quick and easy to control the symptoms.

Tuesday, 13 September 2016

How my pain affects me

I've been putting off writing this post because I thought it would take me a while to get everything down. However, I've given it a bit more thought and realised that it won't. In the last post you can read some stuff about how I experience pain. This post is about how that affects my daily life, and as it turns out it's all rather simple...
I am so sophisticated right now.
I have a simple rule when it comes to training: if you're not ill enough to be in hospital, you go to the goddamn session.
Obviously this isn't safe or sensible for most people, but if I started to let myself off at various times then it could become a slippery slope and I would never do anything. Fortunately, my activities can be adapted if I need them to. For example, last night I went wheelchair racing. My left shoulder is incredibly painful at the moment because I damaged it the other night whilst vaulting (who knew that doing a roly-poly off a horse might cause problems for me?!). Pushing my day chair is really unpleasant and difficult because it hurts so much, but you don't need two arms to push a race chair in a straight line. I did a bit with the left arm just to ease up on overdoing the right, but I didn't do any pushing with that hand by itself, nor did I do much, and what I did do was of a pretty low quality because I couldn't move my arm enough to get a beautiful technique going. I kept my rule: I couldn't train through the pain on my left arm, so I rested it most of the time, but I still did the session.
Besides, I have good roots in one-armed wheelchair racing!
On other occasions, I know I just need to put in a bit less effort. This has been hard for me to accept - I always want to put in maximum effort! - but it's the compromise I make in my mind between sticking to my golden rule and going over into overtraining. Basically, the theory is that something is better than nothing, but that you can have too much of a good thing. Learning my limits has been a long and varying process - and one which is by no means finished - but apart from the fact that I can optimise training schedules it's also helped me to get more out of myself in training and competition, because I understand my body and how it feels far better.
The "I totally understand my body" face.
I know that I should have the flexibility to say that I can judge when I need to stay home - that there should be a level between going to training but feeling a bit rough and being in hospital. Part of the sensible part of me thinks that this is true, and it's certainly something I'd recommend to other people. However, you can always be tougher on yourself than you can on anyone else, so my rule stays: hospital or train. If I didn't have this rule, I would miss an awful lot of training, and then I wouldn't be as prepared as I want to be when I go to competitions. I need the rule and the self-belief that I get from it in order to compete.
The first time I tried this (canter leg changes), I had a nasty fall and I ended up in hospital. To my great annoyance, that led to me missing some training whilst stuck in the MRI and on the ward, but I still managed to do a 10k wheelchair race a few days later. It was incredibly painful but I'd been discharged so my rule stuck. I got a trophy and prize money for winning and I gained the knowledge that I can perform even with the odds stacked against me, so I'd say it was worth it. As for this particular move in vaulting, it's still my least favourite but every time I do it I get better and more confident. Sometimes ignoring the threat of significant pain is harder than anything!
My pain is enormous and affects me all over my body, including constant headaches and gut pain, but mostly I choose to ignore it. I've learned that it doesn't really matter whether I am busy or not - I will be in pain whatever. I'd far rather be busy and do lots of fun things (and some less fun things like sets of 400m sprints - urgh) and be in pain than do nothing and still be in pain. Being busy distracts you. Partly, this is because working hard gives me what I think of as 'legitimate' pain - i.e. pain that normal people get! My lungs hurt, my arms hurt, I'm puffed out, I taste blood, and it feels great just to have NPP (normal person pain).
Yay! Normal person pain!
I'm good at ignoring it. I've practised it hard for many years, so that even when something is constantly sending me messages of, 'Ow! Ow! OW!', I can just carry on with what I'm doing. If pain is your body's way of telling you to stop doing something, then my body hasn't picked up on the message that if I stop doing whatever it is, it should stop telling me. Basically, with constant pain your body is saying, 'stop existing!', and I choose to ignore that. I've recently learned at the pain clinic that a lot of chronic pain is the result of neural feedback going wrong rather than there being any actual damage - and so it's not bad to push through it. They were quick to point out that I do also have ongoing new damage (cheers EDS!) but I'm happy to group that psychologically with all the other stuff really.
Me to my nerves.
Are there times when my pain is so bad that I just can't train? Of course. Mostly, I try to limit the impact of these occasions to times when I'm not planning to be training. The rest of the time, I would then be in hospital.
So, how does my constant pain affect me? Well, it definitely makes me tired, and often cranky, impatient, and physically sick. It gets me down and makes every part of every day a struggle. Occasionally, it pierces through my armadillo layer and makes me really, really miserable. Most of the time, though, it makes me determined. It makes me brutal (towards myself!). It makes me stubborn, gutsy and driven. It helps me to win races and competitions. It makes me fast; it makes me strong. It makes me fit and it makes me powerful. It seeks to bring me down, but it is self-defeating: it seeks to break me up but mostly it builds me up. Pain gives me a reason and an excuse, but to me those are reasons and excuses to do more, to dare more, to challenge more; not to do less. Pain makes life harder, but it makes me live more. Pain causes stress, but it makes me appreciate things more, and it makes me love more. Pain sometimes holds me down, but whilst I know I will never be able to fling it off me I can make sure that most of the time I carry it around, giving it a piggy back and one hell of a ride.

Monday, 5 September 2016

My understanding of the word 'pain'

What’s your earliest memory?
 Some of mine are from my third birthday. I remember my brother popping his head round my bedroom door in the morning to be the first to wish me happy birthday, and I remember poking my fingers into hula hoops as my brothers and I had a birthday lunch with our mum. I also remember my fourth birthday - I was at nursery school, and they brought in a newborn lamb. I distinctly remember feeling disappointed that I wasn’t picked to walk the lamb around on its little lead, but I felt better when - as the birthday girl - I was chosen to feed it from a bottle of milk. Earlier memories are harder to date, but I know from thinking back that they were very early indeed. I remember a lot from when I was two years old, especially when my lovely grandparents were involved. Many of these memories are important because they describe things that happened to me when - except for the case with the lamb - there weren’t people around to photograph it. I know that I can trust the memory (and that I haven’t just filled in the gaps of a photo album) and that they are precious because they can only be seen in my mind’s eye.
Up a hill with my Grandad and brothers. I was older here - about 5.
The relevance of all this to this post is that I think my memory for my early life is pretty good. My memory now is pretty bad (I blame brain fog) but I certainly vividly remember many details of my childhood.
Starting school.
One thing I can’t remember, however, is any time when I was not in pain. I remember learning to hold a crayon, but I don’t remember not being in pain. I can remember a holiday when I was tiny, but I can’t remember a single day when I wasn’t in pain. I remember the days when I still wanted to drink hot milk - which stopped before I was two! - but I could not tell you a single day in my life when I haven’t been in pain.
It took me a while to realise that what I experienced, all the time, was pain. It’s hard to describe a sensation which other people feel most of the time, but which I have never experienced - and even more so when that sensation is really the absence of a sensation.
Here's an attempt.

Take a moment to consider your little fingers.
Are you aware of them most of the time? Assuming that you haven’t recently broken them, you probably aren’t. They probably move as your other fingers do - without you even really thinking about it. If you’re watching TV, having a shower, eating a meal, driving your car - whatever you fill your days with - you probably don’t give your little fingers a moment’s thought. If you bend one awkwardly, or slam your finger in a door, or prick it with a needle or something, then you might start to notice it, but otherwise they just exist - you can think about them consciously, but unless you have cause to do so you won’t really notice that they’re there. The difference is that I am constantly aware of them because they are constantly in pain. In the same way, I am constantly aware of my arms and legs, my back, my jaw, my eyes and ears, my throat, my stomach and gut, my ribs, my toes and feet, and so on. Sometimes I hear people talk about having exercised muscles they ‘didn’t know they had’. This is precisely my point. When your muscles (or any other part of you) hurt, you are suddenly aware of them in a way that you never had been before. It’s not because those parts of you weren’t there, or even that you weren’t using them - just that they’d never been painful, and therefore they’d pretty much gone unnoticed by you.
Look! Look how many there are just on the outside!
When I was small, I thought that everyone was like me - that’s what children do. It took me a while to realise that most people weren’t in pain all over, all the time. Realising it was a strange process. Imagine if you are deaf or blind from birth - eventually you realise that other people can ‘see’ and ‘hear’ but these words mean nothing to you. It’s impossible to put yourself into the shoes of someone whose experiences are permanently sealed off to you. You only have the vaguest idea of what it could mean. I have to admit that I still don’t really know what it would feel like not to be in pain. The best I can do is to imagine how I feel when I’ve caved in and taken a huge load of exotic painkillers - the pain is still there, but I feel I’m detached from it. It’s like I’m a kite on a string, and I’m connected to the pain on the ground by the string, but I’m also vaguely autonomous and floating. The pain hasn’t really gone away, but I’m a bit more detached from it.
Isn't this just the most amazing kite you've ever seen?!
When I was little (still at primary school) I found other children confusing when it came to pain. They seemed to get hurt very easily, and things which I didn’t think were major would result in floods of tears and anguish. I attributed it to my having two big brothers who had no patience with having a whiney little sister. However, I eventually began to realise that the other children were upset because the sensation they were experiencing was unusual to them. Even if I thought they were being a wimp, they weren’t used to the level of pain that - to me - was par for the course, and it made them upset. That was the first stage in realising what pain meant to other people, and it happened gradually when I was about five or six.
I was such a hardcore kid!
The next stage was realising that what I experienced all the time really was pain. In the first stage described above, I learned the difference between my reaction to acute pain and that of my peers. It wasn’t until I was a little older that I realised a further difference: that I accepted pain as a standard feature of me as a person. It’s difficult to do this because you don’t know what life is like without pain - again, it’s like being blind or deaf and imagining how it would feel to see or hear. I eventually realised that my pain wasn’t consistent: parts of me would hurt more than other parts at any moment in time, and at any moment it was possible for one or more parts to be far more painful than usual. As pain increased and subsided around my body, I would be aware that an increase in leg pain didn’t mean a decrease in headaches. The leg pain becoming more bearable didn’t mean it went away entirely. When I was about nine I began to learn what other people meant when they described pain. This might sound silly - as if I were stupid - but actually pain isn’t well understood by doctors so I think it’s reasonable! Pain meant discomfort, a sick feeling, burning, stabbing, throbbing, aching, restlessness, heaviness, fatigue. These were all things that I classed as normal so it took time to realise that they weren’t.
No time to sit around moping when there are ponies to be ridden!
A few years later, I learned that constant pain can have its advantages. I have a very high pain threshold, meaning that I can withstand a fair bit of bodily abuse before it really gets unbearable. Nobody can tell me if this is a consequence of living with a genetic disorder which causes chronic pain, or if it’s just a survival mechanism when pain is your default state. It’s a chicken and egg situation, but it doesn’t matter to me which came first because for all my life they have lived together and will continue to do so. It’s like that quotation about poison - that you can withstand a large amount of it if you are exposed to it just a little bit at a time. Constant exposure to pain means you can withstand loads of it. On the other hand, this isn’t all good. An example or two of my pain threshold will illustrate this point. When I was at school, I hurt my back doing gymnastics. It hurt quite a bit, but I got straight up from my dodgy landing and carried on with the session. I was pretty stiff and sore, but I carried on walking around anyway. It was painful, but the way that I had responded to it suggested to everyone that it was just a case of soft tissue damage.
When I was referred to a rheumatologist and some MRIs were done a very different diagnosis was reached: I had done serious damage to my spine. Several vertebrae were cracked, and the discs in between had been completely crushed. Consider the pain that most people are in if they break a bone, or if they slip a disc. A slipped or herniated disc is one in which some of the jelly-like substance inside the disc has escaped. I was told to think about discs as jam donuts. If you put too much pressure on them, some of the jam seeps out. The more pressure you put on them, the worse it is. My discs were so severely compressed that they had solidified into bone. It’s like squashing a donut so much that it becomes completely rigid, like a plate - and I had several like this all in a row. When a disc becomes ossified it can no longer function as a disc should. They should be there to cushion the vertebrae and to facilitate movement in the spine as a whole. When the cartilage that forms them has become as dense as bone, this can’t happen. When you have a string of several herniated discs and cracked vertebrae, it hurts.
This photo was taken shortly before the accident.
For normal people, a single herniated disc or cracked vertebra would be agonising. For most people, a string of them would be unbearable.
I was 13 years old. It took six months to be diagnosed: six months, during which time we all believed I’d just done a bit of soft tissue damage. Six months when, as a 13-year-old girl, I'd walked around and carried on life with a severely and irreparably damaged spine.

That is what I mean when I say that my pain threshold is pretty damn high. That is how I prove that getting on with things only masks my pain from others so I can bear it myself. That is the best way I have to begin to describe the kind of pain I am in every single moment of every single day.

(next post will be on the ways in which pain affects me - stay tuned!)

September is Pain Awareness Month!

This month, folk in the USA are observing Pain Awareness Month. It's not an official thing over here in the UK but we live in the internet age so I think it's perfectly justifiable for me to leap on the bandwagon!
I'm going to start out by tackling three main areas in separate posts:
  1. My understanding of the word 'pain'
  2. How my pain affects me
  3. How I handle my pain