Monday, 5 October 2009


I have been somewhat absent from here for a little while I'm afraid. This isn't a case of the novelty of a new shiny thing wearing off, but because I have been tired...

Tired, you say? We all get tired! But without turning it into a modern life pissing contest, I know tiredness. I suffer from chronic fatigue (or CFS), with the result that I spend an inordinate amount of my life in a haze of exhaustion.
Some people think CF is one of those illnesses that is a figment of the imagination, a way to withdraw from day to day life or simply doesn't exist. This doubting attitude makes me cautious of telling people that I suffer from this problem. I am worried that I won't be believed or that I will have to answer increasingly invasive questions about my life. I'm also slightly embarrassed that at the tender age of 31 I have difficulty keeping up with the pensioners I know. I should be in the prime of life after all...

Strangely for something described as chronic, my fatigue fluctuates and at times I maintain a normal life, able to deal with day to day doings. At other times, making a cup of tea feels as momentuous as stepping back and realising you have finished the ceiling of the Sistine chapel. I first encountered CF when I was 14 and went from a lively teenager to zombie almost overnight. I'm not sure if anything in particular triggered it, partly because it was so long ago and partly because like everyone else, I attributed it to glandular fever which is the go-to diagnosis of all weird conditions in teenagers. I missed around 8 weeks of school and discovered the feeling of being disconnected from the real world for the first time. I felt like I was missing out on everything important, but at the same time I was too tired to care. Luckily I felt fairly normal in a short time and life picked up where it had left off.

I remained active and busy until shortly after my 18th birthday when CF made an abrupt return to my evil combination of severe emotional upset, a nasty dose of the flu and a then unknown gallbladder problem left me unable to get out of bed. Over the next few months, even as the stress calmed and the gallbladder was removed, the fatigue didn't lift. A busy day involved having a shower and getting dressed before 4pm. Everything was clouded in a fog of exhaustion that felt like a combination of a hangover and being sedated. The only good thing about this level of debilitation was I was too tired to really feel the emotions of such upheaval.

All around me, my friends began new adult lives, sitting A-levels, taking jobs, moving to university while I remained attached to the sofa in my mum's house by an umbilicus of enervation. I rested all week and perhaps unwisely, went out at the weekends determined to keep a connection to the life my peers had. The social contact helped me remember why I wanted to be better and I began to improve, managing to attend college part time and get the precious exams that would allow me to get to university eventually.

This improvement was aided by the help of kinesiology, an alternative therapy similar to acupuncture. Regular sessions of this combined with a spectacular regime of supplements (such as cow's adrenal gland) and every vitamin from A to zinc meant that 4 years after my spectacular burnout, I finally made it to university here in England with my hard won A-level. Along the way, I had learned some life lessons I wouldn't have got as an 18 year old fresher, including how to cook like a demon thanks to all those afternoons of Ready Steady Cook, and I was more than ready to start that adult life I'd been waiting for. I had put chronic fatigue behind me.

Things went swimmingly for the next few years and while it became swiftly apparent that university and I were not as compatible as we might have been 4 years earlier, I did a lot with life, moving to London, finding a whole new social life, starting the career of my dreams and working full time. Things were coming together nicely, especially when I remembered to take an afternoon nap every so often.

And then with sickening repetition, severe emotional upset and a (now long diagnosed) gallbladder condition came back into my life. The good times were put on hold and my attentions were dedicated to finding a way through the immediate emotional traumas. This maze of disasters finally showed a way out in August 2008, 4 years long later. Life was fresh and new and filled with possibilities again...until I started struggling to get out of bed before noon and desperately needing a nap again by the time Neighbours started. Chronic fatigue had found me again.

I knew from past experience that fighting the fatigue simply makes it worse. I gave in and tried not to enrage it by doing anything silly. I realised I had to prioritize to prevent CF completely dominating my life again. I chose napping 6 afternoons a week to have the energy to see people the rest of the time. Social contact encourages me to try new things and see if my stamina was improving...sometimes I get overexcited and do too much too quickly and am always surprised by the results.

A week can pass when I am barely able to do basic tasks. Cooking becomes too arduous and dry cereal suffices. Cups of tea turn herbal when the walk to the shop to get milk feels like my version of the Marathon. I lie on the sofa dazed with tiredness, too fuzzy headed to follow Murder, She Wrote, waiting for my limbs to stop feeling heavy and aching, debating whether to turn the heating on because I just can't get warm when I feel like this. Time feels endless and I crave sleep like I've gone cold turkey after a bender. I just wait for the worst feelings to fade and after 6 or 7 days of this restful stupor and insanely large quantities of B Vitamins, I start to feel passably human again.

Every single time, I swear to myself that I'll be more careful and not overdo it again. I'll go to bed early and eat my greens and take my cod liver oil...and then I forget and do it all over again, because despite the title of this post, the one thing I am not tired by is life.

I want to be active both socially and professionally and lead the kind of life 'normal' people have, where events can be spontaneous because I don't have to worry about overdoing it by accident. A life where I can enjoy my interests without a faint feeling from concentrating for too long. This would be a life where I would have more interesting things happen in my day than discover that Jessica Fletcher once shared an episode with Magnum PI...but not a life where I forget that I'm pretty bloody lucky in many ways. I've got my mobility and freedoms and I'm not dying of anything. I even know this fatigue will lift eventually.

In the meantime, I'll live my life like an little old dear as I convalesce, pottering to the shops complete with shopping trolley to save my energy, taking my daily constitutional and debating whether to get a blue rinse. I like to think that I'm simply the living my life in reverse and with my practise at being delicate in my earlier years, I will be the liveliest lady in the retirement home while everyone around me finds it hard to adjust. Maybe I'll even solve a few murder mysteries while I'm at it?

1 comment:

  1. This is painfully timely for me as one of my close relatives (aged 35) was just diagnosed with CF. So that makes 2 people in my family. *crosses fingers that it's not genetic*