Posted in Blog Posts, fibro

Nil Desperandum!

When I had the unsatisfying appointment with the rheumatologist a couple of weeks ago, he mentioned referring me to the physiotherapist to have a cortisol injection in my hip. On Monday afternoon I got a call from Crosshouse Hospital to offer me an appointment the next morning.

The physiotherapist, let’s call her Lucille, was very pleasant. She asked where I was experiencing pain, was sympathetic,

and offered to assess me against the Beighton Scale for EDS. To say I was hopeful is an understatement. So I took off my breeks and socks and waited for her to begin.

She definitely did assess me against the Beighton Scale, but she assessed me for how I am now, as a woman in her 50s, not as I used to be which is what the guidelines suggest. I questioned Lucille about this, but she just dismissed it and ignored all the other symptoms I have. I don’t have the energy or the mental accuity to argue with medical folk any more so I meekly said, “OK,” and let her carry on.

I do have bursitis, on both hips, but until I could strengthen my core she refused to inject me as I’d only get a couple of weeks relief and then it would come back again. I tried explaining that despite religiously doing all the exercises physio gave me in the past, I never received any improvement in my symptoms, that I even had tendon release surgery on both elbows yet the tennis and golfers’ elbow pain was back, worse than ever, on both arms. It didn’t matter.

Then she asked me if I knew what pain was and did I understand the difference between acute and chronic pain. I explained the difference perfectly and despite saying that I seemed to have a good grasp of the concepts, went on to explain it to me again. Then she went away to get a few things and left me to get dressed.

Now, I have had a fibromyalgia diagnosis for 12 years. I have read many books on fibro and on pain. I used to run a website devoted to positivity with FMS and I told Lucille this. But when she came back she had a print out of some exercises I had to do and a few sheets on What Is Pain. She also offered me a leaflet on Fibromyalgia Syndrome. So there I was, 12 years of fibro experience, having read so many books and papers on the topics and this woman was offering me a print out from the NHS website and a leaflet.

A fucking leaflet.

I refused both, suggesting that she save it for someone else.

She went on to say that I seemed angry and that I wasn’t in ‘acceptance’ of my illness, that I was still looking for a cure. Damn straight I am! But because I wasn’t accepting my position, she would not be able to refer me to a specialist pain therapist or the pain clinic. I tried to explain that if I were to accept that the constant, never ending pain and utter exhaustion was all there was, there would be nothing for me to cling on for. By being angry, by refusing to accept that this is all there is, I am fighting for my life. It’s the anger that keeps me going. By this time I was in tears, angry tears.

So, unless I accept that this is as good as it’s going to get I won’t get any focussed help. Well, fuck them. I’ll do the exercises and go back in 4 weeks, but I won’t stop reading and searching for something to help me. I have bought a book on trigger point therapy and maybe, just maybe, I’ll find some relief from that.

Nil desperandum! Or something.

Author:

Writer, photographer, creative fantasist.

4 thoughts on “Nil Desperandum!

  1. I hope you won’t just give up, Nettie. It seems clear to me that she didn’t take into account your knowledge of your own situation. What’s worse, she didn’t treat you with respect or really take into account your particular situation. I hope you’ll go somewhere else.

  2. This post makes me angry on your behalf. I could almost hear her shout ‘NEXT’ as you were leaving. I believe she should be sent a copy of this post. You are a person, not an NHS number. Sending love. xx

  3. Damn I hate judgemental asshats. I’ve run into the same thing (different issue).

    I am sorry Nettie. Have you tried CBD oil? (You do NOT get high from it).

  4. I’m so frustrated for you!

    I get so angry when health professionals try to palm you off with leaflets on something you’ve studied and researched for years. I’ve had the same for anxiety and depression – NHS leaflets that say nothing compared to what I know and have lived. I’ve also tried to get help for severe Misophonia, which I am very well-versed in, but they aren’t, so obviously, it’s just not a thing. My NHS therapist, who I saw for six weeks at the end of last year, said she’d go and ‘look it up’, guess what? She found my blogpost about it, which told her more than she could offer to help me! Her response and advice over six weeks for my problems – was have more ‘me time’ and learn ‘how to breathe’ . Grrr.

    I wish I could say “Go back and give them hell, Nettie,” but it’s not that easy and both confrontation and sitting back calmly don’t work.

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