Chronically creative! My proposed solution for crippling fatigue.

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 chronic fatiguemy 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.

spoon necklace

In my head, I’m hilarious.

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?

Love,

Claire

xxx

4 thoughts on “Chronically creative! My proposed solution for crippling fatigue.

  1. Hi Claire,

    I have been reading your blog for a couple of months and wanted to say thanks for sharing your Endometriosis story with others.

    In January of this year, I was diagnosed with Stage 2 Endometriosis at age 21. I have now undergone 3 Laparoscopic Surgeries and am still suffering with ongoing (potentially ovary related) pelvic pain. To add yet another diagnosis, I was told by my Gynaecologist 2 weeks ago that I also have Adenomyosis.

    Having just read your post on Chronic Fatigue being Endo related, I am questioning the separate diagnosis by my GP that I also have Chronic Fatigue Syndrome. I had no idea that Chronic Fatigue and Endo could be so closely linked, as I’ve had ongoing fatigue for the last 6 months. Reading your post, it sounds just like me.

    Sorry, but I don’t really have any advice to give you as I’m still trying to work out how to handle my fatigue better. I have only just found out abut the spoon theory and it does make a lot of sense. I was told by the Pain Service to imagine that I had a 1 litre bottle of energy to last the whole day and that I had to choose how to use it. Some days I am more mindful of my energy use than others. Sometimes I just ignore it altogether, but regret it later as overdoing things or going out gives me what I refer to as ‘jet lag’ for up to 3 days afterwards.

    Thanks for this informative post and I hope you get your pizazz back soon 🙂

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    • Hi Caroline.
      Thank you for your lovely message. Sounds like you have been having a really tough time with endo too- it sucks doesn’t it?! I wish you all good things for the future though- we have to keep plodding onwards and upwards. It’s really interesting that you were given a separate diagnosis of CFS outside of your endometriosis- I’m not sure that all GPs are aware of the link, I know mine wasn’t until I told her! Still, as long as you are getting some support and being mindful of your energy levels that’s the best we can hope for currently. There is clearly no magic bullet out there for fatigue, which really is frustrating. I will keep you all posted if I come up with anything useful, and please let me know if you do too.
      Have a lovely Christmas, and do please keep in touch.
      Claire

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      • Hi Claire,

        Thanks for your reply. I think GPs can be a bit too quick with the Chronic Fatigue diagnosis, especially as I had other random symptoms at the same time that no one could connect to my Endo. To be honest, I think my body is just exhausted due to the constant struggle that is happening on the inside right now, so I’m not too worried about the Chronic Fatigue label (not today anyway).

        Tentatively, I’m looking forward to Christmas as hopefully this will be the first Christmas in 3 years that I haven’t spent half of the day on the bathroom floor in severe pain and throwing up and missing out on time with my extended family. My Gynaecologist has put me on a pill to turn all my hormones off, which has helped a little with the pain. However, I know this is only a temporary measure and I will be going back again in January to have another scan and talk to her about what to do now.
        Oh the joys of Endo 🙂

        Anyway, have a lovely Christmas and I will let you know how I get on in the New Year, as I come by often to read your blog.

        Caroline

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      • Hi Caroline,
        Yes that’s a good point about GPs, but think you’re right that as long as we know to plan and pace ourselves the exact label can be less important in the short term. I hope you are having a lovely (and as pain free as possible) Christmas! Mine is going OK apart from some shoulder pain. Do get in touch again in the new year, it is always great to hear from you 🙂
        Claire
        xx

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