Having /M.E/CFS and reflections on the past 10 years

*Originally written in April 2012, amended slightly*

Prepare for the self pitying :)

I fell ill with ME/CFS (official lazy diagnosis) around this time in 2008, so 5 years I’ve been ill now. My 20s have been pretty much plagued with ill health, at 20 I had a bad case of glandular fever (mononucleosis) which in turn triggered a bad case of depression. It took me a good few years to recover but by age 25 I was doing well. I had a great job which paid a good wage, a good social life and I was regularly exercising. Swimming a mile once a week and attending the gym. Then, one day at work around 11am something hit me. My arms felt heavy, my head slumped to my desk and I had only one thought, I’m coming down with the flu and I need to hit my bed. A few hours later and the flu hadn’t hit, I just felt all the same sensations as having flu but without any sign whatsoever of the fever or migraines. My muscles hurt, my back, legs, arms, everywhere but that was it, nothing else seemed to be happening. Two weeks later I went back to work thinking whatever this was would eventually disappear, but it didn’t. 

A month later I went to see the work doctor and explained the situation, I had come back from Mexico a few months previously so that was his first though, that I’d picked up some tropical disease. So off I went to the tropical disease specialist, nothing. A hundred different blood tests, nothing. Apart from a low functioning immune system. I’d also had an endoscopy recently for a stomach complaint, so another avenue to explore was that the procedure had aggravated the epstein barr virus in my throat. Possible? I don’t know. Unfortunately due to staff cuts my doctor left. I feel like I’d be in a better position now if I was still under his care, very knowledgable and very understanding. My diagnosis switched from Fibromyalgia to ME/CFS. He put me on antidepressants as after 3/4 months of being ill I was starting to become depressed. I knew the signs and wasn’t prepared to go there again. He had also sent me to a fatigue specialist to get my diagnosis/2nd opinion. I didn’t like him so never went back.

3 years later my health had deteriorated to such an extent that I had to give up work, having previously been working part time hours and missing almost 12 months in total from the last 3 years or so. It was a hard decision to make but was no doubt for the best. My partner and I had to give up our beautiful home and move in with her parents, we’ve been here 9 months and fortunately are now in a situation where we can get our own place again, thanks to a friend who has agreed to share with us and thanks in part to the government who’ve been on time in returning the excess tax I paid last year!

I don’t really see my current doctor and have refused referrals to CBT treatments. I told him I think they’re absolutely ridiculous but he’s convinced I should at least try them and see before judging. After the recent PACE trial I dare say I'm correct. I became frustrated with the medical profession over it’s sometimes antiquated and irrational views towards M.E/CFS.

So what’s having this illness like? For the most part I’ve accepted it but relapses are still traumatic and sometimes frightening. I’m forever living in fear that I will deteriorate and be permanently bed bound, unable to face daylight. The number one cause of death for people with this illness is suicide or heart attack, sometimes I can understood how hard it would be to deal with the extremes of CFS/ME day in day out and be forced to see suicide as the only option. On some level I’m lucky, I can still go out and see my friends, go on holiday, read, drive but just plan my day so I use as little energy as possible. On bad days it’s hard to stand up but on good days I can go for walks and be relatively active throughout the day. You probably wouldn’t even notice I was ill to look at as the only time most people see me is when I’m in remission and I have the energy to go out.

As for the physical symptoms well they fluctuate, fatigue is obviously a major part of it. Think the sort of fatigue you have when you’re suffering from flu, that’s how it is at it’s worst. Throw in the intense muscle aches but picture it without the fever. I suffer from brain fog where I forget what I’m doing and become confused and agitated, words don’t seem to make sense and sentences stop midway and I’ll wander off having completely forgot what I was doing. This usually happens everyday. I’m slowly developing food intolerances and suffer from acid reflux.

I miss working and my independence but I’m not unhappy. I’ve learnt to appreciate things I’d never have if I hadn’t become ill and I have some great people in my life for which I’m eternally grateful.

March 2013 update:

Not much has changed, my health is still the same, I had a relapse throughout December and experienced a bad period of mental health. I've since taken on a course of meditation, have began to put more effort into my pacing and  now avoid all painkillers as basically, they don't help. The last two months have been pretty good, I can usually get out once or twice a week depending on what the activity is. I'm also slowly starting to develop a small plant nursery which brings in a little extra income, hopefully I can develop it further but don't really have the funds to do much.