What’s wrong with me?

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.

So here’s the official list of diagnosis.

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.

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Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

5 thoughts on “What’s wrong with me?”

  1. I’ve tried the spoon theory, it helps to a degree however a lot of my condition can go wrong with no apparent cause (other than you know, the big hole in my spine). A very well written peice though. A has a certian detachemt and clarity, it expalins things simply without bogging the reader down in the emtional side. the emitonal side IS important don’t get me wrong, but soemtiems people need to assimulate the facts first. I’ll probly send along anyone who asks me abotu ME to this blog post if you don’t mind

    1. Of course you can send people here. This blog is all public and if what I have writen can help anyone then I have achieved something good. I have just updated my description of ME to convey the problem a bit better.

  2. This was a great insight. I don’t know anyone with these diseases, but I’m glad for a little understanding as it’s probable I’ll one day meet someone similarly affected. It makes me very grateful for the abundance of energy I have in comparison and which I often take for granted. I’m sorry to hear you’re suffering worse as of late. Hoping things get easier for you soon.

  3. “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!”

    How can we have any clue?  I DO feel tired in the mornings and just lately my muscles do seem to ache, and, Yes!, I do fancy a lie-in occasionally.  And I’m not getting any younger.

    But please don’t scream at me if I don’t understand your particular condition. 

    I do manage to drag myself out of bed and into work every morning, although I might not always want to.  It’s more out of a sense of duty to my children – to my employer – to my own self-esteem.

    But please don’t scream at me if I don’t understand why you can’t do that.

    1. I’m screaming because all those people – just like you demonstrate here – compare themselves to those of us with chronic conditions. I say “don’t tell me you’re tired” and what do you do? You fucking tell me you’re tired. Guess what. If you managed to drag yourself out of bed, then your fatigue is infinitely smaller than what I am talking about. You dare compare not wanting to get out of bed to being so unable to move that I can’t get up to piss? You don’t get it. You really have no clue.

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