Saturday 18 June 2011

I'm in the mood for lancing.


Mood music. Dream catchers. Wind chimes.


This is NHS acupuncture. For me, it meant a clinically stark hospital room with no windows, a sink, a desk, 4 chairs and a bed with obligatory MASSIVE toilet roll sheets upon it. I didn't need those, thankfully.

Admittedly, receiving acupuncture as NHS pain management treatment seems a little strange to me, but the pain continues, along with its myriad side orders, including fatigue and general narkiness in plentiful supply, interspersed with moments of laughter and joy. And, while that pain exists and the strong painkillers affect me in various unpleasant ways, I have to try other means of easing it.

I'm compelled to try to find other ways to at least attempt to "deal with" the pain(s) I feel and have felt every minute, every hour, every day for as long as I can remember. Somewhat luckily, I seem to be unaware of much of the pain while I sleep. I'm not wholly convinced that chakras and meridian pathways exist in and/or on our bodies, nor that putting needles in my (rather sensitive) skin can help relieve the severe pain endometriosis produces in me.
However, it's free, it may help me to relax (at least while I'm there), and it's not codeine. So, before the treatment began, it had those 3 positive points.

Needle Man was pleasingly frank about possible stings or pains, and was dry-witted; I took that as a good sign. The sign stating "Tea - 85p" next to the one with "Tea - £1.65" in the on-site restaurant after the appointment was a good sign, too...
We had the obligatory chat about what pains I have, how often, where, what I'd like to gain from or feel after the treatment. "Some help in how to better manage my pain", I said. "I'm not expecting a miracle; I know nothing can stop the endometriosis but if this could help somehow, that would be terrific." I'm sure the pain will never cease, nor, indeed, the countless effects it and endometriosis as a whole have upon me, but if there is relief to be had somewhere, that's a good thing. And an understatement.

That there is scientific evidence to prove it can help with the kinds of pain I have is a sort of reassurance that it's not all mystical crap. Hot water bottles, codeine, and regulated breathing like I'm giving birth to the children I'll probably never be able to have does, to a point, work "reasonably well". I gather the acupuncture sessions will be ongoing for some months, as the problem for which it is treatment is chronic.

The needles were mostly not painful or awkward. Mostly. Did it hurt? Well... yes, a bit, actually. I have a bruise the size of a 20p piece on my side. I know: fetch the Philharmonic Orchestra! I'm not complaining in the least. Lawks, if this is what it takes to help even a bit to lessen the hell that is endometriosis, then get the needles ready, Needle Man!

I'll be at the hospital again next week, on Wednesday. Not for another acupuncture sessions; that's the week after. This upcoming appointment is to (presumably) see the consultant whom I've not seen since Monday 15th March 2010, when he told me I did have endometriosis after telling me so often that I did not. I do, still, expect an apology, for he did make a mistake. I believe the delay in diagnosis led to my pain progressing to the point where the strong stuff is not strong enough. I think I've suffered more than I needed to, if anyone "needs" to at all.

I shall make every effort to ask why there are no posters or leaflets from Endometriosis UK at the hospital. In my GP's surgery, the leaflets I placed a couple of months ago have been taken and I have replaced them several times. Surely, that is a sign there are people suffering and wondering. After all is said, and after all is done in an attempt to find out what afflicts some women and girls, sometimes, doctor does not always know best. And it is still. not. good. enough.

My current treatment - round 2 of a temporary induced menopause, plus HRT, after last year's round 1 - is, once again, consuming the energy from within me like the Vashta Nerada, while simultaneously stiffening my knees, my back, my hands, and my neck, ensuring I feel as if they're becoming arthritic. It's an intensely sore aching, the bones feeling as if they're burning from the inside. My lower back is often immovable, cracking gently as I try to straighten myself.

I'm not really a typically forgetful person, but being menopausal has made my mind a vacant one. Thicko. It's not only frustrating, though; it's quite disturbing. Am I becoming ill and mindless or is it a symptom of my decapeptyl injections? I think I know. But there's still doubt.
So, too, am I not lazy. I dislike laziness. And yet, here I am, sat wearing my dressing gown, on the sofa, typing away. Dimbleby on telly talking about How We Built Britain, cup of tea on the table beside me. But I'm not lazy; I just appear to be.
Walking hurts me, always, but more so now. Trying to sit and stand and lay comfortably is not often easy, now.
My not doing much about the house - minimal vacuuming, dusting, tidying, cat-feeding, and the rest - isn't because I'm not bothered or I don't care. It's because it hurts. I'm also still weaning myself off the co-codamol, and this is now week 4. And taking painkillers for this kind of hurt isn't an option, because they doesn't work.

It's a sighsome situation, y'know. If I think about it too much, carefully analyse my life, what happens to me, how it affects my parents and brother, the stress I indirectly cause, I feel that horribly familiar sense of dread and desperation creep along, the anxiety-producing adrenaline sending that cold, sickly feeling to my stomach, my heartbeat quickening irregularly. I panic and cry and shake with fear that there is no solution. There IS nothing to stop endometriosis, because it will always be there and even with this current drastic treatment and the removal of my right ovary, I'll not feel "well".

It's not just about problems with periods; it's a lifelong condition, a disease, an illness. Whatever you wish to call it, it is a fucker of a thing to have. You can't see it from the outside, you can't really tell what's wrong or that when you talk to me, I'm hurting, constantly, the pain never ceases, there's always something there, something aching, piercing, tearing, swelling, aching, and dragging.

I seek attention for Endometriosis UK, but not me. I want you to know, if you don't already, that Endometriosis UK provides the most welcome services of understanding and such invaluable support for when we feel overwhelmed by the fucking huge hurdles ahead of us. These aren't piddly little fences to hop over. These are some of the biggest bastards you've never seen, the steepest stairs with no rail to hold on to, up the steepest mountain of endometriosis, the disease laughing in our faces, us looking back at it with red anger and fear.

The way I feel at this moment, as I type, right now, this second, I've no idea how I'm going to get on the train to London, let alone get round the 5k in Hyde Park in September.

But I shall. I will bloody well do it. And I'll bloody well have a superbly awesome time getting more money for Endometriosis UK at my 30th birthday party in November. Small things, short walks to the shops, a drive with Mum (she does the driving) to the next town, a visit from a friend, tire me, but I'm going to make sure that day is one of the best I ever have. Lots of planning, though. Bit tiring. Bugger.

And now I need to eat. Oh GOD, my life is SO UNFAIR!