It’s been a couple of weeks since my last blog post. That’s because reality decided to reassert itself in my life and I’ve been reminded quite forcibly that I am, in fact, ill. I never seem to notice when my health has been good until afterwards when it goes bad again and then while I am stuck in bed I realise that I’ve been out of bed quite a lot in the preceding few weeks. I’ve acquired a cold and a cough that has now turned into a painful chest infection. The result is that I have spent the majority of my time in bed for the last two weeks and my days are punctuated by fits of coughing that leave me seriously dazed afterwards. I visited the doctor today and started antibiotics so hopefully it will clear up soon.
I haven’t been completely inactive though. I’ve visited my doctor, which is a fairly big effort in itself for me. I have had quite a few phone calls with my solicitor dealing with aspects of my case against the DWP, and been sent mountains of documents to read to do with that. I have been to my first parish council meeting as a councillor, and managed to get drafted onto the planning committee and been to a meeting of that too. (Not actually as much work as it sounds.) I have even managed a few hours of computer gaming recently, something which I haven’t been able to face much while my mental health has been bad. The majority of my time though has been spent trying to stay awake but not really managing to do much more than slump in bed and stare at twitter, too tired to even tweet much compared to a few weeks ago.
And on top of that, I’ve been sent an ESA50 form – Limited capability for work questionnaire. It had to happen eventually, it’s been nearly two years since my last work capability assessment. The form arrived a couple of weeks ago and I think I subconsciously chose to bury it under a mess of paperwork so that I didn’t have to think about it. Unfortunately that means that I haven’t got very long left to go through the soul-destroying process of filling it in. I had better drug myself up and go and get on with it instead of procrastinating through blogging.
I’m ill. I suffer from several serious diseases. As such it shapes my life, and affects everything that I do and say. When I am talking to someone, sooner or later my illness comes up when I have to explain why my life is a certain way or why I cannot do something. Many of those people ask what is wrong with me, and since it is very hard to explain it every time especially on twitter, I have explained it here for future reference.
I’ve had the migraines all my life. I get between one and four a week. The main trigger is fatigue, other triggers are red wine and some blue cheese. I get migraines with pain over the right eye, pressure throughout the head, tension in the neck, and aura including nausea, vomiting and bright flashing lights in my vision. I treat the migraines with Sumatriptan (Imigran) nasal spray which is fast and effective at stopping them.
I was diagnosed with Diabetes the day before my 30th birthday. Given my family history I had fully expected to become a diabetic one day but I had expected it to be at least another ten years away. I control my diabetes with tablets, but it is progressing absurdly quickly and so I may well be given insulin injections soon. Note to detractors and “it’s your own fault” idiots: I am not obese.
Restless legs is fairly common, affecting 1 in 12 people. I have extreme restless legs. It makes me move, twitch, stretch and convulse any time I am required to keep still, especially when trying to sleep or in a car. Combined with ME and an inability to move sometimes, it’s torture. It is a major cause of insomnia for me so that I am now afraid to even try to sleep. I treat it with Pramipexole which is a dopamine agonist aimed at parkinsons disease. It makes me feel horrible and sick, but if I don’t take it, my legs try to rip themselves off of my body.
Insomnia is an obvious one really. I don’t sleep when I should. It is quite debilitating in its own right since going to sleep at 6am makes it nearly impossible for me to get up and do anything at 8 or 9am. It is fueled by a natural obsessiveness in me that won’t give up on whatever I am doing just for sleep, but also by my Restless Legs and by an inability to switch my mind off and stop thinking, which is a common problem in those with ME.
I have had ME/CFS for 10 years now. Many people get ME after a viral infection such as flu. They simply never recover from it. I first got sick after being in bed for a week with flu. After the flu seemed to be clearing up, the exhaustion, the headaches and the muscle pain stayed on. Those are the primary symptoms of ME.
When I talk about chronic fatigue the words really don’t cover the reality of it. People use words like tired, exhausted, and fatigue all the time but they have no clue what it really means. When I say I am too tired to get out of bed it’s not hyperbole. I mean it. When I am that tired I can’t get the five metres from the bed to the toilet. When I am at my worst I cannot lift my head from the pillow or turn myself over in bed. If you have ever experienced sleep paralysis then imagine it continuing for hours. For the really unlucky ones it continues forever. One of the most frustrating things that people can say to me apart from “Have you tried…” is “oh, yes, I’m quite tired after work too.” I want to scream at them. You just have no clue!
The fatigue is not logical either. It starts about as low as energy levels can get so that every action is an extra effort. That effort must be gauged incredible carefully. Each action results in a bit more fatigue and in a bit more pain. Where most people could perform a physically demanding task for a day and then be refreshed by one nights sleep or perhaps a day off, when you have ME the refreshment doesn’t happen. A few minutes of extra effort can result in days of exhaustion and pain. Sleep can make things feel worse. The best analogy I can think of is that every bit of energy used must be borrowed from a loan shark. He isn’t forgiving. That energy will be demanded back the next day with menaces, and whatever you pay won’t be enough. The loan shark will be back again for more.
Other symptoms are many and varied. I have already mentioned fatigue, headaches and muscle aches. i also have burning pain in various muscles, brain fog, irritable bowel syndrome, problems with vision which appear when most tired, and more that I can’t remember.
Brain fog is worth explaining. Once again words are inadequate but it is often described as a head full of cotton wool or as thinking through treacle. Brain fog prevents me from remembering words that I need, from completing thoughts in my head, from finishing sentences that I am speaking. It’s frightening and horrible because it strikes at my own sense of self. It is brain fog that can prevent me from speaking at all on some day
For me, my illness varies a lot. I tend to have cycles of relatively good (~80%) health and then relapse for a few weeks of months where things get bad. I had flu, the real deal, not once but twice in the last few weeks. Since then my health has gone steadily downhill and I am now in a complete state of relapse. I have barely been able to leave my bed for the last few days and have been in a lot of pain with burning sensations in my muscles. I would say that i have rarely been as ill as this in the past.
I wrote about how ME affects me every time I wake up in my article A morning with ME.
For a full understanding of how chronic illness affects me I recommend reading Spoon Theory by Christine Miserandino or watch the video below to see Christine reading Spoon Theory to a conference. This is the origin of the #spoonie tag that you may have seen me use on Twitter.