Is it me…?

I keep having the same, utterly futile, conversations with my nurses.

Conversation No. 1 – Staff Nurse: “You must agree to compression or your ulcer won’t heal.”

My reply: Assuming I accept that as a given,” (I don’t believe it is – no-one even thinks beyond compression**), “what can you do about the pain, and the fact that it doesn’t work for me?”

No answer.

**They don’t think outside the box because they don’t even know they’re in a box.

Consider the inconvenient facts:-

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The Curse of Compression in Lymphoedema…

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.

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More leg problems.

My nurses are taking the piss.

Yesterday I was told that my two lesions had merged into one big ulcer. Not happy, but not unexpected.

Thing is, I can’t actually see for myself due to the awkward location – I can see it clearly only with my camera and it was late yesterday when I thought to check for myself (I take photos at every dressing change). This is the result. Continue reading