The thing I hate the most about my endometriosis is the free gift of chronic fatigue that it comes with. I can be such a warrior in the face of even the worst pain imaginable, but this constant, grinding, debilitating exhaustion has really knocked the life and pizazz right out of me. I honestly used to be the life and soul of the party, but right now, even the word ‘party’ makes me cringe. It’s also obliterated my short term memory, which as a PhD student is really not ideal. What’s strange is the fatigue crept up on me so slowly that I can’t really pin-point when it began for me, or when exactly it started to be a big problem. With hindsight, I think that I was in slight denial about how bad it had gotten before receiving my endometriosis diagnosis, I just thought I was depressed or something. The fact that is is here to stay in blinking alarming though! I really need to work out how to live a good life with this chipping away at me.
In contrast to pain management, effectively tackling chronic fatigue seems a lot more complicated and less well understood. When I asked my GP for advice for example, she stared at me blankly and then suggested that chronic fatigue isn’t a symptom of endometriosis. So that was pretty much useless. I think it is pretty weird that this symptom has never been mentioned to me by any of my doctors, especially considering how commonly it is experienced by women with endometriosis. My fellow bloggers and tweeters have been much more helpful, and seem to offer advice centering on forward planning your time to prevent over-exertion which can exacerbate fatigue. This blog post provides a particularly helpful summary of thinking in this area.
I’ve been giving this a go, although it’s easier said than done and doesn’t really doesn’t come naturally to me- I think I have a tendency to run around and burn myself out. My mum says I’m a classic Sagittarius in that way *rolls eyes*. Having had a good root around on twitter, I came across Christine Donato’s ‘spoon theory’, which is worth a read if you have time. When explaining her chronic illness and fatigue to a friend while eating lunch in a cafe, she used spoons to represents units of energy, which a chronically ill person must choose how to spend in order to undertake the daily tasks of living and socialising.
Being mindful of my ‘spoons’ has been very helpful I think, certainly in respects to planning my weekly schedule more carefully. I also like that the theory is linked to an active online community through the hashtags: #spoonies and #spoonieproblems, where people with a range of chronic illness share information, advice and sympathy. However, using this approach I sometimes feel that I still missing out on too much of life, like social events which should be things to look forward to, not dread. Also, for myself personally, I think the spoon theory falls down slightly as I think it can imply that you wake up with a full set of energy, whereas for myself and many others, this isn’t the case. But these are minor quibbles, overall it rocks and is actually quite empowering.
In light of my recent efforts- to cheer myself up and encourage myself to keep going, I decided to buy myself a little gift of a spoon necklace. I figured this way I will always have at least one spoon, and so will never run out of them entirely! 🙂 This plan can’t fail right?! I also find regular exercise can be really energising, but it can be a vicious cycle as I often find I am feeling to exhausted to exercise in the first place.
As ever, your thoughts and experiences on chronic fatigue, and how you manage it, would be very much appreciated. My pizazz my be temporarily on shut-down, but I am determined to get it back, one way or another! Have you shared the spoon theory with friends and/or family? If so, has it been useful?