Monday, 19 March 2012

Knees bent, arms stretched, ra-ra-arghhh...


It's not yet two weeks since Floodway Thursday, and look at me: laid out on the sofa, blanket over me, hot water bottle on my front, heat pad on my back, and strong painkillers in my face. Again. It's not another period; it's one of the mid-"month" bits I loathe almost as much as the periods.

It's not period pain, but pelvic pain. It's heavy. It drags. It's sharp, and drawing, and piercing. It aches deep inside in all the bits you can imagine and more you can't, and it won't stop unless I take painkillers. As an aside, I think I also have another sinus infection, on which I'm blaming my meagre appetite, stuffed up nose and relentless headache. I'm not sure if it's my perception of feeling a bit more ugh or if I actually am feeling that way that's made me tearful. I've felt really quite low and, while it's always easy to blame it on hormones, it might just be something other than. I keep experiencing trouble with my face, ache-worthy as it is. My sinuses always feel blocked, I have a (newly-discovered) deviated septum, and regularly feel pressure in my face. Usually, it'd be my brother using his hand to push me out of the way (aha ha ha) but now it's that unsettling feeling of a headache which just. won't. stop.

To a point, I can control my "normal" pains. I feel some pelvic aches, I take the appropriate tablets, I wait an hour or so, the pain lessens. I feel sleepy, sometimes giggly, always unable to concentrate. Occasionally, I can't speak coherently. That's when I giggle. And others do, too. The sods. It is funny, though.

When I went to the hospital a few weeks ago, they gave me a booklet called "Your guide to managing chronic pain" - it's full of wonderfully supportive words. It doesn't tell you to think positively to wish away your pain, because that's not how it works. It doesn't magically disappear and they know that. I know I've iterated this fact before, but I'm going it say it again: they believe me! They believe us!

Several days ago, I happened upon Krishna Talsania's article about the reporting of benefits "cheats" by uneducated readers of The Sun. In the piece, she says what I, and doubtless innumerable other people, have felt for so long: "It is a strange burden to have to be conscious of strangers' perceptions of your disability, rather than concentrating on striving to live life to the full." I still feel concerned about what others think of me, walking to the shops with such apparent ease. She's buying a set of pens? From Lidl? She must be laughing at all that money! No-one has actually said that to me but maybe they've thought it. The first thing people (who've asked about my employment situation) seem to wonder about me is why I'm not working. I could be working, of course. I could be a part-timer, I could be self-employed, working at home, on holiday. But when they know I claim benefits, but not necessarily what for, I can see in their eyes - not all people, but some - that they doubt I'm really deserving of the money, of the "attention".

The NHS pain services are, as mentioned, fantastic. Well, they are to and for me. Some of their literature includes some words of wisdom (also known as "common sense" in some quarters), and includes, "However pain in both the short term (acute), and long term (chronic), can be severe enough to lower quality of life, and in severe cases profoundly disrupt your ability to engage in day-to-day activities. Pain can also cause both short-term and long-term emotional and mental health problems."

Chronic applies to me. My quality of life is, currently, less than ideal. It's crap, actually. That's not to say I have no reason to live; I have many! Jeez, I can't count how many - that's how many. Yeah. Amazing. Anyway. It's the relentlessness that gets people down. I know this as a fact because I have spoken to people and read "stuff" and things. (I have.) The frustration and lack of social interaction/reduction in social life are the two aspects that people with chronic pain mention most often as the things that really, really get them down. They really, really get me down.

Here's something extremely pathetic: the new Lidl leaflets are something to look forward to. Just hear that tumbleweed go! There it is, look. All tumbly and... and weedy... See also: new Avon catalogue. And I genuinely really like the Avon catalogue event. I do. Less exciting, though, are the arrivals of the Kleeneze and Betterware catalogues.
Walking to Lidl, or the Post Office, or the charity shop from whence so many of my books have come is something to sort of prepare for. It's not Everest, admittedly, but it takes effort and it hurts me. It depends when I walk, though. When in my "cycle", that is. Premenstrually is not good for me. Yesterday - Saturday - I was not premenstrual, but it was still a little too much to do. It sounds so dismal a way to do things. And it is, reader. Dear reader. You poor sod.

The NHS booklet, with that comforting "we know it's not something you've made up" tone, has images of several gentle exercises to help you achieve tension release, and the stretches are easy to do. I still have to get back to the yoga. I did recommence it, and I felt good! I actually felt good. Well, not "good" but... but I felt "better". No, thinking back to it, I did feel good. And I tell you what, that's worth so much to me I don't even know which words to use to express how it made me feel. And then I stopped the yoga. Why? That's right! I had a period. *Sighs out loud.* I just sighed out loud. True.

In my last post, Housekeeping, I talked of my task of sorting hundreds of photos on my laptop. I'm still sorting them. There are more than hundreds. I think "thousands" is more apposite. It's taken so long, I can't believe it! Resizing photos from 4MB to 300KB, moving them in to new folders more appropriately named than "STUFF", moving them again to sub-folders more appropriately named than "OTHER STUFF". It takes time is the thing. And it takes effort. Bloody effort. Sitting. Just sitting, typing a few keys, clicking a few buttons.

But it's not. Because I also have the dihydrocodeine, which makes me very drowsy. The pain for which I take the tablets makes me fatigued and moody. The anti-depressants make me drowsy. I've said all this before. I'm basically always tired. And mental concentration has taken it out of me. When I'm "tired", I get emotional. And that's why I cried myself to sleep on Friday night.

The frustration of the computer being too slow, my pelvic cavity being a git and hurting every place it could two hours after I took two of the strong tablets, the cats' snoring getting louder, my face full of sinussy snot. *Cue dramatic bit* This bleeding, broken flesh prison, which doesn't let me have a break from any of it, is waiting until the next event to laugh me down and suffer simultaneously, in a fortnight's time. Or three weeks' time. Or four weeks' time. I don't know. It's day *checks calendar* 15 of my "cycle". I am dreading the next time I am sentenced to the sofa with almost all my independence stolen from me by my own womb and ovaries. *Understands this is endometriosis, which is not fatal, and realises this may sound theatrical when others suffer so much more.*


So, does anyone truly believe I, or other people, want to not work? That I'd not want to earn money through working? I think some people think I enjoy this life. I think those same people think that, as I said in the previous post, the pain stops once the state's money is given, that the mood lifts, the Sun shines, and the rain clouds disappear. Oh, look! A Disney bluebird flying round and round, over by the window. How quaint. I've had three doses of the strong stuff today. It's all helped. It's relieved the heaviness, the sharpness, the piercing stitch-like ovary pains. It's helped. But that's all it does. It doesn't stop anything. It doesn't cure it. It's all temporary. The laparoscopies are just maintenance. It's all just... housekeeping.





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