The painful opening of the eyes

The painful opening of the eyes

Not mine - although the associated 'getting out of bed' is generally not a pain-free experience - but my boss'. I had a brief chat with her yesterday, as she was trying to arrange my final stage 2 sickness meeting (about time it was my final one, as I returned to work in February, and haven't had a day off since!), and explained that, provided the blood results aren't positive for antibodies, inflammation, or rheumatoid factor, then I have fibro. Her response was 'oh, well, that's just a generic term'. Which I suppose is a step up from 'that doesn't exist!', but then, she didn't know that would end up being my diagnosis at the time, so I suppose she may now be showing a rare, faint glimmer of tact.

So, I'm trying to get together a pile of information for her to read (and hopefully understand - she is a clinician, after all) so that - when I go to my next meeting with her and HR, she might actually realise that this condition is disabling, painful, frustrating, and - at times - a flipping nightmare! I know I smile and try to look fine, but that's because I'm dealing with patients and colleagues all day, all of whom have their own problems and don't need to be burdened with mine. It doesn't mean I'm not struggling with the pain that has gatecrashed my body and is having one hell of a party at my expense.

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  • You poor love, this condition is so bewildering to us all it's so difficult to explain it to anyone.

    Before I was diagnosed with fibro I felt as if I was 'broken' - or felt 'poisoned'. My whole body seemed to go into meltdown and I suffered with depression and anxiety.

    I love charity shops and found myself in the charity shop Arc which have very helpful leaflets, one of which could have been written especially about me - it was a booklet about Fibromyalgia and it so helped me find the help that I needed to cope with this debilitating illness.

    Take some booklets into your boss and ask her to read them so that she can understand your symptoms and I'm sure she will be more sympathetic.

    Good luck, honey...

    Soft hugs Ren Robin...xxx

  • Thanks, Ren - I'm trying to find some good booklets that explain what it's really like to have this invisible condition. I'm also planning (in my role as training lead) to deliver a talk on chronic pain etc. to the rest of my team, as we deal with patients who also suffer from it. I thought maybe I'd buy plastic spoons and get them all involved in Spoon Theory!

    Gentle hugs!

    Sara xx

  • I was given a small pamphlet/booklet about Fibromyalgia from the hospital. If you haven't found anything, it might be worth trying at your local hospital. They should have some info in their Rheumatology Department/Clinic.

    Best of luck to you SootyB! I hope it all goes well for you, take care.

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