Tuesday 17 February 2015

The Big Bad Tired


My name is Hannah and I have ME/CFS.

The main idea of this blog is to give me an easy way to keep my friends and family informed about my road to recovery, and to help them understand my illness. 
This is primarily because whenever I have to talk to someone about my situation, I suddenly become Monty Python's black knight, cheerfully insisting I'm fine no matter how much I'm bleeding all over the forest floor.

That’s not necessarily a bad thing; I don’t want to be one of those people that whinges about their life every moment of the day, I don’t always want to burden my friends with what can be some pretty heavy stuff, and, slightly more selfishly, it’s really depressing talking about it ALL THE TIME.
The only problem is that is if I continue to act like I’m fine then people get pretty confused when I say I not up to seeing or talking to them. 
And if it’s a choice between my friends thinking the reason I don’t always see or talk to them is because I don’t want to (which is most definitely Not The Case) or being thought of as a moaner, then I’ll take moaner any day.

So, if you don’t know what ME/CFS is you can take a little look to your right where there is a (very) brief explanation. As you might've guessed from the title of the blog (you clever thing, you!) it means I'm exhausted. All. The. Time. 
Basically, somehow (and no one really knows how), my body seems to have forgotten how to store energy, so everything I do wears me out, and sleeping doesn't make me feel any better. 
It's a bit like being in a Duracell advert, but everyone else has the good batteries and I have the rubbish ones that someone got at a dodgy looking corner shop that smells a bit weird and stocks things like "Nezcafe" and "Androx".

It’s a condition that’s called a lot of things (ME or Myalgic Encephalomyelitis, CFS or Chronic Fatigue Syndrome), but, when I’m not calling it a string of expletives, I like to call it The Big Bad Tired. 

There are varying degrees of the condition, usually measured by a percentage. Some people are only marginally affected and can carry on pretty much as normal, with some minor adjustments to make sure they don’t overdo it (they’re the 90-100 percenters) and some people are completely bed bound (0-5%).
I currently level off at around 15%. 
I wasn't always, for the first year or so of my illness I went from zero to 40% fairly quickly, but unfortunately it's an unpredictable little sod, and now I'm back at 15%.
I’m housebound, and have been for a few months now, but I get up out of bed every day, and I can sit in the garden for short periods provided I wear as many layers as I can fit under my BMO onesie (I'm a classy bird).

My current rest ratio is 2:1, so any activity I do (and I rarely do more than half an hour at any one time) is followed by twice the amount of rest. And by resting I mean lying down, with my eyes shut, in silence, while I meditate or focus on my breathing (but not sleeping, as that would mess around with my sleep patterns). It's fair to say that that is about as much fun as it sounds.

Activity counts as anything that takes any effort, be it physical, mental or emotional. Whatever you can do consistently without making your symptoms worse is called your baseline.
I can normally manage about three small non-strenuous tasks in a day (not counting getting up and dressed, having my hair washed for me, brushing my teeth etc). This is normally things like ordering something I need from Amazon (more on how I'm certain my postman is judging me another time), writing emails, reading, writing blog posts etc. Any more than that and (somehow) my mind gets overstimulated and I can't sleep, and, as you can imagine, sleep is pretty important.
I can manage about half an hour in the company of one person (who is not one of my parents) and then I get tired. It's roughly the same with video calling (although video calling is slightly easier). 
I'm still trying to work out how often I can do this. I tried twice a week but I could feel the warning signals start, the harbingers of doom that promise retribution if I don't stop what I'm doing immediately, so once I stabilise again I'll try once a week.

Essentially my life is like a very boring version of Groundhog Day. Which probably sounds really depressing to you, but I'm kind of used to it by now.
It still sucks, don't get me wrong, particularly as there's not a cure. You can improve and manage the symptoms given time, and sometimes it just leaves of its own accord (please, please, please!), but there are no guarantees.
But it's my life now, and as much as I miss that person I was (so, so much), there's no point wishing it had never happened. I just have to grit my teeth and try and work my way back up to 16%, 17%, 18%...

And hey, if all else fails, I could always try Bill Murray's way: kidnap Andie MacDowell and get a groundhog to fall in love with me... Wait...


  1. I so empathize Hannah. I have the dubious pleasure of have ME/CFS as well. I was diagnosed in 1991. It's been sort of a relapsing/remitting disease for me. Relapses drop me below 25%, which is my baseline. Remission sometimes see me at 50% for a couple of days. But if I'm stupid and try to be productive during that time, the relapse comes back sooner and hits me harder. All of that just to tell you how much I love your blog!

  2. I love your sense of humor (and your Monty Python references!) You are amazing :) Lowen @ livingpositivelywithdisability.com