It really angers me that this disease (or condition, illness or whatever) because it isn't terminal doesn't seem to get the same level of sympathy, understanding or research from friends, family, and even the medical profession.

Whilst it may not be terminal itself, the symptoms and impact often make me feel what the hell am I hanging around for? Waiting for some amazing breakthrough? Hoping that the pain, hot flushes, never-ending stress over worrying whether my employers will keep me on (or scared of applying for a new job, asking for a raise, etc.) or stressing about relationships that seem to need SO MUCH WORK to maintain and SHEER EXHAUSTION from the pain and/or medication and/or stress...will also somehow reduce at some point in the future which never seems to get there. I know I'm lucky in that my current employer (for the moment at least) accepts my condition as a disability, and I can sometimes work from home; I cannot help, however, to feel angry and that career which I qualified in, worked hard to achieve, seems to further out of my reach because I have this disease which never seems to leave me in peace?

I can't sleep well despite the medication because the PAIN KEEPS WAKING ME UP and the doctors say there is little they can do because of the numerous surgeries already conducted; I mean seriously, does anyone else sometimes feel that THEY SHOULD JUST GIVE UP AND LET GO because a life in pain is no bloody life at all? At 42, with only a few years respite after a hysterectomy in 2004, I genuinely often feel that there is hope and no point?

Sorry for the rant but if I don't say it on here (and I can't tell my mother because it would break her heart), I'M GOING TO EXPLODE..............

2 Replies

  • Hi Maria,

    I do feel like this too sometimes. Everyone is different in trying things to help them.

    I had been doing a lot of research on herbal things that could help and come across a study of Raspberry Leaf Tea. When I have bad flare ups I have a few cups of this and it does ease the pain. Please try this it may help you. You can get from Tesco's from the clipper brand.

    Another thing that helps slightly is meditating.

    I can honestly say I know how you feel, it's so hard sometimes but we have to find the thing that works for us to help ease pain to make life more bearable!

    All the best to you

    Tamara xx

  • I can't agree more!!! Hope you feel better soon💛

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