Friday, 7 March 2014

State of Siege

(Granted, perhaps not your traditional siege. Good old Heroes III.
Image from )

Something I’ve been saying right from the word go from this blog is that illness is not a competition (and this indeed applies to most things in life actually) and that everyone’s experiences are equally valid and important.

In other words, I’ve stood staunchly by the mantra of “There is no such thing as not ill enough.” I still stand there in fact.

Given this I was a little surprised to find recently that I’ve been questioning myself along the same lines without actually realising it.

I think the surfacing of such thoughts coincided with the blog’s first birthday, and came hand in hand with feelings that maybe I should be quiet, that my experience wasn’t really that typical of other sufferers of Fibromyalgia (and particularly not Interstitial Cystitis which I have a fairly mild case of) and that given that maybe they weren’t actually all that helpful.

I say with something of a raised eyebrow that I think I’ve possibly been tricked by how well I was over our long spring and summer last year. Between the patches of fatigue and aching it was easy to forget that my conditions existed because my immune system seems to respond rather joyously to dry heat and plenty of it. I even had short periods where I felt almost completely “normal” again. Despite the fact it’s now winter and I’m suffering again I think the build up of so many “better” days led me into something of a false sense of “do I actually belong anymore?”

The reality is that I have a full time job, I have hobbies I can still enjoy and I still have a social life. All those things do become messy as a result of Petunia’s moods but the fact remains that I’m holding down all of them despite being ill. I am in a lot of ways very lucky that I can still engage in a lot of things I love.

Last week was probably proof that Petunia’s ears have been burning, because the combination of a dose change in the amitriptyline medication and some bad family news (when Helen Mirren said in Calendar Girls that cancer was “a shitty, cheating, sly, conniving bloody disease” she was right on the money) meant she recently had something of a party. For Petunia, it was Christmas.

To cut a long and somewhat grim story short, I found myself once more surgically attached to three things – my sofa, my blanket and my wheat bag. A fourth unwanted attachment was to the cat, who doesn’t understand that I’m on the sofa because I can’t really get up and thinks jumping on my stomach every time I’ve almost dozed off is a good idea.

(The fact is that when you're this cute you'll get away with anything and everything.)

Sometimes I do wonder if she and Petunia talk.

So, my body continues to reprimand me for my foolishness. As with most times I have a dip, being out of the dip doesn’t mean an automatic return to normal. The restriction in how much I can exercise or indeed just walk about is becoming maddening and doesn’t seem to be changing quickly at all. I am reminded once again of what winter means for my body, something it was easy to forget and trivialise over the long summer.

I did manage to get out last weekend when I returned home and visit The Chestnut Centre, an otter and owl sanctuary near Chapel-en-le-Frith in the heart of the Peak District. It’s a lovely little place with a herd of Fallow and Sika deer, several different types of otter (including the wonderful Giant Otters) and many different types of owl. Otters are one of my favourite animals because they seem perpetually happy – unless they are sleeping, they are seemingly always at play, and it’s hard not to find their good cheer infectious.

I suppose the moral of this story is that not only should you never trivialise anyone else’s health or problems, but that you should also extend yourself that same courtesy. Illness will never be a competition, and all experiences are valid. My difficulties might not be anything like the same as Fibro sufferers who are disabled and unable to leave the house, but they are still there and just as legitimate. In the end negative thoughts and self doubt do nothing except exacerbate the problems by interfering with your thought process in how to deal with them.

When you live constantly in a state of siege with your own body and immune system, don’t give the other side any more ammunition.

Does anybody else ever feel a bit like this? What do you do to pick yourself up?

Wishing you all many spoons xxx


  1. I wonder on a daily basis whether I've actually got something else, as my experience of FM seems so mild in comparison with everyone else's, even your own. I've hardly ever been so incapacitated that I couldn't move or function, and I've never had a day off sick due to FM (stress, yes, flu, yes, FM - no), and like you I have active hobbies (I LARP, that's pretty active), a full time job and a social life. I saw a physio yesterday from Occy Health through work, and she told me I am managing my FM amazingly well, though I could probably do with pacing myself a bit more, so yet again I am questioning whether I really have FM or not!

    1. LARP is something I keep thinking about as I have friends who participate :) lovely to hear about your hobbies and situation Lyn, and I hope everything continues in a positive way for you :) x

  2. I come from the other end of the spectrum. I managed the fibro fairly well for a few years, managed to care for my parents during their final illnesses. Haven't been able to work since 2009. DH had a foot surgery 6 weeks ago that has thrown me into total flare after a really delightful holiday season with a lot of travel thrown in. That has reminded me (as you find) how this miserable thing comes and goes of its own volition. I am hoping the flare will end soon, since I also begin to wonder if this is something new to the table of declining health. This is a good post and I am also trying to realize that healthy people are mostly scared to hear our real problems in case if might be them next, and we need others with similar problems to let us know we aren't all crazy. Everyone's pain is individual and its hard not to judge it. Thank you again for a good post.

    1. Thank you for reading and for your comment, the scared factor is an interesting thought and one I hadn't really considered before. I hope your flare up settles down as quickly as possible for you x