Geeks Vs Loneliness: living with ME & CFS

The impact of ME and Chronic Fatigue Syndrome is seen, but rarely understood…

This article comes from Den of Geek UK.

A warm welcome to Geeks Vs Loneliness, the area of the site where we try and natter about things that may be affecting you, or people around you. We’re realistic: we have no miracle cures for anything here, but hopefully, there’s a tip or two we can pass on that may help. That, or just a virtual hug from us to you.

This week, we’re handing over to the brilliant Jane Roberts. Without further ado…

‘I touch the fire and it freezes me. I look into it and it’s black. Why can’t I feel? My skin should crack and peel. I want the fire back.’

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– Buffy The Vampire Slayer – Walk Through the Fire

I remember when I first realised something was wrong. I found myself asleep on the desk, face cushioned by my history textbook. Some would blame the topic. It happened again in English. Our teacher had a habit of parading about teaching us Chaucer with a very dubious approximation of old English dialect. He was funny. The class was interesting. I was unconscious. After this happened several times my teachers stopped being irritated and began to be concerned. The school nurse suggested a trip to the doctors.

I was 17, and for the first time I could remember I absolutely loved life. My sixth form was small, supportive and a lot of fun.

I was happy.

I did have a mild throat infection. My legs ached and I was exceptionally tired. Blood test followed blood test and my white blood cell count was classed as abnormally high. More tests. More sleepiness. No appetite. I was immensely relieved when they told me it wasn’t anything serious, just something the doctor called ‘M.E.’ caused by post viral syndrome.

M.E. Two innocuous enough letters that added up to a whole bundle of trouble. The ME Association explains that a number of different names exist for what is an illness of uncertain origin affecting around 250,000 people in the UK: Myalgic Encephalopathy or “ME”, Chronic Fatigue Syndrome, Post-Viral Fatigue Syndrome and Chronic Fatigue Immune Dysfunction Syndrome.

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I’m lumped under the first three. Anyone can be affected. There is no magic pill, no proven cure for this condition for which the symptoms include severe and debilitating fatigue, painful muscles and joints, disturbed sleep patterns, stomach problems, poor memory and concentration (the infamous foggy heads). Chronic burn out after either physical or mental exertion. The onset is often linked to a viral infection, as likely in my case. Other triggers may include an operation, accidents and possibly stress and anxiety.

Back in the late 80s I was relieved. I just didn’t grasp it at all. I didn’t realise I was going to be sick for a year. Reach a dangerously low weight. Mess up my A Levels. There was no Internet then to help me understand. And there were only four TV channels to watch when housebound. For weeks on end Red Dwarf was my closest companion.

I didn’t realise then I would spend 20 odd years dealing with the disbelief and mockery of people who don’t – or won’t – understand this condition, convinced it is a mood disorder/depression/sheer laziness that can be cured by a good kick up the backside to motivate me, with a few batches of happy pills to help me on my way. My family didn’t have a clue. My friends were confused and then generally disinterested (a year is a long time to a teenager). I barely made it through my A Levels. My school was brilliant – a rare bright spot in an otherwise pretty dark time.

M.E. is an invisible illness. Some of my friends thought I had an eating disorder. Or was just a bit flaky. Certain members of my family thought the skinnier I got the better I looked. To them my illness was nebulous. It wasn’t definable. It wasn’t real but attention seeking behaviour. I wasn’t exhausted – I was lazy.

I got a job, became a responsible if sickly adult. For quite a long time, I managed to be a functional human being. ME never really left me.

The ME Association highlights that people affected fall into one of four categories:

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* A small percentage who manage to return to completely normal health, although this may take a considerable period of time.* The majority, who tend to follow a fluctuating pattern with both good and bad periods of health.* A significant minority, who remain severely affected* A few, who show continued deterioration, which is unusual in ME/CFS.

I’m one of the majority. My relapses began to become problematic around the year 2000. I had a good job, was studying at night school, a lovely husband – a good if quiet life. I caught a virus.

Bang! Back down that rabbit hole we go. This has been the pattern for the past 15 years. In 2009 I was diagnosed with vasovagal syncope (a blood pressure/fainting disorder) directly linked to having M.E./CFS. I can’t regulate my body temperature and tend towards excessive body heat (my husband loves having a small furnace for a bedfellow). My heart often goes into arrhythmia when I get sick and I have a small murmur as a result.

June this year – another viral infection. And the exhaustion and the muscle aching is back and appears to be staying for a while. My wrists and knees are particularly badly hit and while the thought numbing brain fog is lifting I find that my anxious mood is not. I’m at the mercy of the need to take frequent nana naps. I feel like an epic failure of a human being. I can’t really work at the moment. I’m not a reliable person and I let people down which breaks me up inside.

People nag me for not having a job. They don’t have to explain to a potential employer why they may need to take a week off with a cold. Two or three weeks for a virus. It’s just not worth the stress anymore. My illness isn’t just invisible – according to some it is also unbelievable and it’s certainly inconvenient.

There are bright spots in all of this. I have the most wonderful, understanding husband (who sees firsthand how wrecked I become and has given me the space and freedom to recover as much as I can without stress). I have you lot – the GvL squad, a group of the most wonderful decent human beings I’ve ever come across giving me support. I have a genuinely caring GP. And I recognise that I am not seriously ill or disabled – I know that is a blessing.I guess I’m weary of accepting my limitations. Of being told by people who should know better that I have let down their expectations of where I should be at this stage in my life. I just feel like Buffy in the sublime Buffy the Musical: Once More With Feeling. Going through the motions. Walking through the part.

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And like Buffy, I want the fire back.

For more information please visit the M.E. Association website. They’re brilliant.

Thanks for reading and take very great care.