Always something there to remind me...

1/28/2008 05:41:00 pm BenefitScroungingScum 6 Comments

Today was supposed to be about something different, but then I read Spence's post about assisting Bill up from the floor over at the incredible Siren Voices and mine became something else.

There's a reason I won't take the Oramoprh that sits in my fridge. My friends and my doctors all think its because I'm stubborn, proud even, but that's just what I let them believe. To me it hails both reminder and warning, there every time I open the fridge door should I raise my head enough to see it.

A reminder that terrifies me, the kind of fear that sometimes wakes you in the night, and chills the pit of your stomach. A warning call. Of how things were. How they could be again. Under extreme enough circumstances. Should I lose control.

It was the weekend before I met Big. A few weeks later my family situation would reach such crisis point I would somehow find the strength to break all contact with them. Diagnosed only months before I was yet to develop the management and coping skills I have today.

I can't remember now what event caused the dislocation. The one that floored me that is. Much of that time is blurry. For that I'm grateful.

My hips and pelvis were so painful I couldn't weight bear at all. Stark words on a screen leave it sanitised, anaesthetised. It was anything but. Pain so searing, so acute I could not eat, sleep, talk or even cry. I could not get out of bed. Literally. Couldn't even crawl.

In such circumstances eventually a decision has to be made. To pee the bed or not. So to speak. I came up with what seemed like an ingenious plan under the circumstances. No fluid means no need to pee. Or so I thought. So I stopped drinking. All together. It's probably no wonder I can't remember too well. It seemed the most logical thing to do at the time.

I saw my GP first thing that Monday morning. He doubled the pain medication I then took, and wrote another prescription. For Oramorph. Spoke strong words to me about taking it. Of dehydration, danger, and never ending up that way again for want of strong enough pain relief to move.

I never have. It's always been there.


Falls at home are one of the most common call-outs we get in the ambulance, and because we get so many it's easy to become desensitised to the terrible anguish behind each case.

By necessity, our approach is ruthlessely pragmatic: 1. how do we get this person up? 2. are they hurt / do they need to go to hospital? 3 If not, who do we need to tell? (Falls Prevention program / GP etc). After particularly difficult cases we'll talk about it in the cab afterwards, but then it's on to the next job... and you'd get worn out very quickly if you felt it too much.

But I do remember from my own, very limited experience of incapacitating injury, that horrible shrinking of the world to encompass the very basics. To have to endure that pressure beyond a few weeks is - well - unimaginable.

You are a very brave and resourceful person, BG. (and BTW - don't ever worry about calling the ambulance! As the advert has it: You're worth it!)

Mary said...

You know, there isn't a prize for enduring avoidable pain.

If your reasons are more "I don't like the side effects" or "I don't want to build up a tolerance" then I understand... but sometimes that has to be weighed up against the benefit of the pain relief.

I get certain side-effects from one of my painkillers. I try to not take them, or at least not take any more of them than I absolutely need to. But since I started work I've taken at least one dose every single day - because the nastiness of [unpleasant side effect the internet doesn't need to hear about] pales in comparison to the nastiness of sobbing with pain, losing my job, being unable to drink the cuppa Steve has made for me, etc.

Therefore, as well as regarding the Oramorph as a reminder and a warning, I would also regard it as a safety net.

Spence: Thank you. However, I think you are incredibly brave to do the job you do, I'm not sure I could (even if my body allowed) Managing to cope with all that the human condition throws at us day in day out and for such little financial reward, well, that's brave in my book.
The BYM often talks to me about the difficult jobs he's been to, just to be able to talk it through I think.
This post was based upon how things were for me some 3 or more years ago. Life since then has vastly improved, but yes, you are absolutely correct in saying in such situations the world shrinks to no more than the basics. That's the saddest thing about the lack of social/medical care we currently have in this country I feel.
Thank you for your comments BG x

Mary: Sadly it isn't avoidable pain. The double whammy being with EDS for some reason not yet known pain killers just don't work as effectively as they should.
Having said that the oramorph is my safety net. But just by being there. There's something about knowing it's there should I need it that's enough. If the situation ever got as bad as it was then then I would take some, but I take a synthetic morphine 3x a day to help with the 'normal' pain I have and prefer to use cannabis to deal with the rest of it, mainly because it's more effective with less side effects.
You are correct about there being no prizes for enduring avoidable pain, unfortunately this isn't avoidable and I have that big fear (that we all do) that if I take the 'top up' meds too often, one day when I really need them they won't work. Ain't life grand ;) x
PS you gotta love lactulose lol

Anonymous said...


Your resilience in the face of adversity is so classic of EDS. I think most EDS'ers are so used to chronic pain that we're not phased by the sort of crises that would have others dialling 999.

It's obvious you've found you're own medicine that works and the side-effects are sensational! :-D

I promise to email you soon!!!

hiya sweety.. My hubby is in a lot of pain all the time.. Our doctor wants to give him morphine .. but the spouse is a stubborn bugger and reckons that for him.. morphine is the beginning of the end..

He takes glucosamine and fish oil tablets.. which have helped with his hips heaps... and I mean heaps.. He uses cannabis as well.. I also make "grown up" chocolate which helps him to sleep.. and gives his lungs a rest....

Thanks for entering the contest.. I hope you win..

cheers kim xxx

Steph: You are absolutely right. I was thinking about just this last night. I'd crawled on the floor to try to pick something up and couldn't get back up again. So I stayed there. Knowing full well I'd be able to get myself up again in time. (I was next to the bed to haul myself up from) The real point being that we do become almost immune to trauma, we have to with the kind of injury and illness that is a normal daily event in our lives.
I do take prescribed medication which helps, but does not take the pain away. Just dulls the very worst of it. I don't know if you watched the documentary on Ch4 last night about how people in countries where pain relief isn't really available cope but it was fascinating. It made alot of sense to me as I describe it as having to ride your pain, and put it into a different place in your head. It can't be got rid of, but you can choose to stop letting it affect you. (I couldn't do that without a baseline of medication though)
You might be interested to know that cannabinoids are suggested to be most helpful for those with EDS by one of the experts I know.
As for the side effects, life needs some pleasures ;) Hugs, BG x

Kim: I'm sorry to hear the spouse is in such pain. Does he need hip replacements? I can totally understand his views on morphine. I would love to see cannabis legalised as a medicine as it is in places like california or Holland.
I use a synthetic form of morphine which I've found to be more effective and not too much of a problem in side effects, ie I can drive without a problem whilst taking it which if I took oramorph on a regular basis I could not. If things become more painful for the spouse I'd suggest one of those options (although they are comparatively very expensive)
I think your contest is the most fab idea, though the postage to the UK could be a bit of an issue if someone here wins! Maybe we should run a blog swap thing, I've seen them elsewhere. Love BG x