What follows is a letter to be handed to my nursing team on Wednesday.
Notes on Compression…
May 26 2014
Let me start by saying that I feel very strongly that nobody involved in my medical care truly grasps just how much pain I’ve been in this past year, and with few exceptions, like today, still am.
It is, and I say this with no melodrama intended, a very rare day when, as a direct result of that, killing myself doesn’t seem a better choice than carrying on. There is simply no end to the pain, and I have barely slept as a result for almost 2 months. I seriously doubt my ability to carry on much longer if nothing changes. The only reason I’m still here is that I hope something will change. That hope is wearing very thin.
Take last night. I went to bed at 01.00. At 05.30 I was still awake. I must have been asleep for just minutes when my 06.00 meds alarm went off. I cancelled it and the next thing I knew it was 07.30 and my meds were late, which always messes up my entire day.
I also believe that there is far too much emphasis on compression. To an observer – as it might be, me – the attitude is that “we’ve always done this, so we’re always going to do it”. To me that also says that no-one is looking at alternatives to compression, and that’s a serious omission.
I have discussed compression with other lymphoedema sufferers over the past year, some with ulcers, others without, and it’s quite clear that my experience with compression is by no means unusual – it does not suit everybody.
And yet, repeatedly, this is all the Tissue Viability Nurse has to offer. Sorry, that’s not good enough.
Today I asked about the mechanism by which wrapping my leg in compression bandages would aid the healing of my ulcer. I was told that compression aids the function of the Calf Muscle Pump, improving circulation of oxygenated blood, removing depleted venous blood, and promoting healing.
For me – and while I’m not a doctor (though I have more medical knowledge than most people), I do have a background in engineering, and the human body is basically just a messy mechanism – that does not hold water. Or blood.
For the CMP to function it needs to flex – to compress and empty the veins – and then relax so the veins re-fill, then flex to repeat the cycle – a cycle which depends largely upon the proper functioning of the venous valves. It cannot do that while tightly wrapped in four layers or more of compression bandages and padding. Not for me, anyway.
It might work for someone who is otherwise normally mobile, who can walk well, but that’s not me. As I’ve pointed out before, walking the 6 yards to the bathroom is often beyond me.
My normal condition is inactive – this is not a life-style choice, it’s forced upon me. All compression does is make me even less active – it is self-defeating.
And then there’s the pain.
Compression is painful, often extremely so, and that was before I had an ulcer. I do not, as I have said many times before, need more pain in my life. With better meds things might be different, but that’s not going to happen.
Today is the first day since last summer that I haven’t needed Oramorph just to get out of bed or, so far, at all. I’m pretty sure that this is a result of using my new, painless, leg support yesterday
That means I have no “gratuitous” pain, which is my personal label for pain that happens spontaneously, unprovoked. However, any contact, even with a tissue to blot the gunk that oozes from the ulcer, or a swab for the hospital, is deeply unpleasant, and anything beyond that, like having a fresh dressing applied (unless I do it), or putting on a sock, is excruciating.
The effect of multiple, tight, mostly unyielding, layers of compression would be off the scale.
Finally, I still have a suspicion that sticking with what we’re doing now, but changing it daily, might offer a way forward. I’ve been trying to amass enough dressings to try this, but for a variety of reasons that hasn’t happened.