Sometimes you read something or see something, and it just resonates with you, you know?
It’s like today. Being Remembrance Sunday my thoughts, quite naturally turn to such things as the heroic sacrifices made by those brave men and women who gave their lives in battle, and the complete lunacy of the necessity of such sacrifice. It was whilst indulging in a little light breakfast social media-ing, that I saw someone share the final scene of Blackadder Goes Forth. A finer and more poignant summation of the above, I think, is hard to find, and it fits my thoughts on the matter perfectly.
The same can be said for Spoon theory.
Today I am tired. Yesterday I was tired. Tomorrow, thanks to my MS and possibly with a cameo from my Pernicious Anaemia, I fully expect to be... Well I’m sure you can guess.
It doesn’t help that this is what I have come to call my ‘Plegridy Weekend’. This is the time that I inject myself with the powerful Beta-Interferon designed to reduce the chances of a further MS relapse. This means that for a day or so afterwards I will experience ‘flu like symptoms’. Cue throbbing headaches, achenes, a raging temperature, and of course a generous extra dollop of tiredness.
A Marked Man
There are also some lovely red marks appearing on my body, around the injection sites, that kind of make me look like the opponent of a very precise and tiny handed boxer who favours body shots (not that type, get your head out of the gutter).
Anyways, the point that I am meandering away from is that my life, at the moment, consists of a baseline general weariness, and that again brings me back to the spoons.
If you’ve never heard of Spoon Theory please, please (with sugar on top) follow that link, the one there, under the words 'Spoon Theory'. You will find the most beautiful, precise, and elegantly written summation of what it’s like to live with a life limiting condition, written by Christine Miserandino of butyoudontlooksick.com,
I first came across spoon theory a few years back and it immediately resonated with me in the way I previously mentioned. At that time I either did not have MS or had not yet been diagnosed with the condition (frustratingly, no-one can tell me how long it has been with me, but it's at least a year). I was still constantly tired though, something I put down to having Pernicious Anaemia or low B12 levels. I think at the time I tended to normalise that weariness. I mean everyone gets tired, don’t they? Everyone has those days. Maybe I just have more than most.
The Off Switch
It’s ever since this years big relapse though, the one that put me in hospital, the one that got me in an MRI machine and let the neurologist see pictures of my brain confirming that the blighter was merrily munching away at the Myelin up there and had been for some time, that things have been turned up to eleven.
Lately there will come a point, in any given day, where I am just... done. The energy is suddenly sapped from me and it’s time to curl up in a little ball in front of the telly before retiring for the night. It really is that quick. One moment I will be alright(ish), the next the plug is pulled and it’s game over, thanks for playing, you lose.
There have even been days where I’ve taken to my bed mid-afternoon, in order to try and regain a spoon or two, something that has had limited success (I’ve never been a big fan of day time sleeping).
Of course some days are better than others, and I’m by no means down to the amount of spoons Christine and others with chronic, life limiting conditions are. The theory still holds though, it is what I experience, it makes sense. It’s strangely satisfying to know that someone ‘gets it’, not just on an intellectual level, but in a shared experiential way. I know some of what Christine is talking about. She knows at the very least some of how I feel.
I need to learn to manage my own condition, my spoons, a little better perhaps. I need to gauge how many I’m starting with on any given day and make sure I’m keeping that spoon in reserve, just in case. It’s easier said than done, and I’m sure there will be days ahead when I’m suddenly left spoonless, but, with practice and a little care I can minimise those times.
Until next time…