So, how would you describe your pain?

I love when health professionals ask me to describe my pain. Do they mean the different areas that hurt, the varying types of pain or how bad it is from 1 to 10? Because if they want to hear about it all, I’m going to need a three hour appointment and they are going to have to promise that they will actually listen to me. You see, it can be an entire day’s worth of spoons to describe my painful reality with any degree of precision and I’m simply not worth the effort if they have dismissed me before I even start talking. That’s also working on the assumption that any medication or sleep deprivation has left me with the ability to be a vaguely efficient communicator. On a good day I am a bumbling mess and despite the fact that I’ve spoken though what I’m going to say beforehand and have even made notes, I get caught off guard and any planning goes out the window. It’s extremely frustrating.

I saw the pain clinic professor dude this week. He was very pleasant and seemed to have a basic understanding of hypermobility. He believed my pain but he couldn’t help me. He has suggested another drug that’s basically a more modern variation of Tramadol – even he isn’t holding out any hope for this drug agreeing with me. He told me to stop the BuTrans patches on the basis that pain medication is only worth it if the pros outweigh the cons and it certainly wasn’t improving my quality of life. I’m a bit disheartened with this, but I know he’s right. I was just clinging onto that chink of light breaking through my very cloudy existence – just maybe I had found something that would make life less painful. Nope.

I was, however, relieved that the prof agreed that my hormones probably do massively effect my pain levels. Next time some specialist points out the lack of evidence of that being the case, I’m going to explain to them that if they want to plough £20 million into the fund, that’s the only way there will be any hard evidence. Until then, I’ll work on the basis that I KNOW what’s going on with my own body.

I don’t know what’s been wrong with me this last week or so. I’m not feeling particularly down, I just lack any sort of motivation for writing or anything really. I’m a bit sore and tired and bummed out, but it’s not the end of the world. My Mum is back from South Africa for a while so I’m generally spending my “better” days with her and have less energy to write. Tonight, my friend came over for cookies, tea and the Great British Bake Off. It’s always lovely to see her, she has such a cool life and an interesting job and is absolutely lovely. It always cheers me up to hear the adventures of the people I care about. I just can’t figure out if this melancholy is the downward spiral of depression or just a grim acceptance that I’m always going to be this sore. Either way, it’s not ideal.

I’m going to have a glass of wine and eat strawberries even though I know they give me reflux. Rebel.

nigelspoon
On a happier note, Nigel likes to spoon with Big Bear ❤

Ren x

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