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Chronic pain

izy Member Posts: 4 Listener
Hello. I'm not very good at talking to strangers, but I suppose after you take the plunge you're not a stranger any more.

I have had chronic Crohn's Disease for 30+ years, 8 operations leading to an ileostomy. Further surgeries mean I have minimal bowel left and so although I have daily pain with Crohn's flare up and adhesions, nothing more can be done. The Crohn's affects all soft tissue including my eyes, nose, mouth and areas down under lol. (Not used to or good at talking about all this. I'm called Mrs Fine at the hospital because that's my answer to how I am. "I'm fine!) Having taken masses of medication throughout the years I now have peripheral neuropathy which affects my lower legs and my hands - most annoying. Sometimes I am wheelchair bound with it, but not too often thank goodness.

I have very low thyroid output which is strange since I bob between 6 stone and 7 stone 7.

I was prone to collapsing quite frequently since childhood which was put down to my low blood pressure, however in 2008 I collapsed and fitted and came round in the ambulance arriving at the hospital. This became frequent and after tests and scans I was diagnosed with epilepsy which they say I have had in petit mal form from the age of 4. That's what all the falling over and going into dream states was about but my mother did not allow illness in our family so I was never properly looked at.

After my joy my husband couldn't stand it, (although he had never been kept "short" in that dept if you know what I mean. I thought we were a very loving couple.) and didn't like the look of it even though I made little jazzy covers, but to cut a long and dad story short, he went off to Thailand with all the family money and even double mortgages the house and cashed in my pension by forging my signature. I This was in 2000 (Happy Millennium) and I had worked full time teaching music and IT to boys with social and mental problems. 

I can't go on with this because I'm sure you are all bored to tears. I just wanted to say what I'd been through to see where I am now. I had to stop work because I had a total mental and physical breakdown. I've been up and down since then with many scenarios you wouldn't believe on Coronation Street..... BUT, I've survived!

I can't write any more and I didn't mean to write this much. I'm appalled and was going to scrub it all out, but it's down now. I'll come back to the site and see if I can help anybody with any of the experiences I've had with social worker, housing, forms, doctors, psychiatrists etc etc etc (sigh)

Bye for now. Sorry for the long message and I know I'm not half as unhealthy as many people. Maybe I can help



  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Welcome to the community @izy thank you for sharing this with us.

    No worries at all, we are happy for you tell us as much as you like. You may be interested in our dealing with chronic pain discussions.

    If you have any questions, please let us know and thanks for wanting to help out on our online community. ;).
  • Castiel
    Castiel Member Posts: 4 Listener

    Hi, Izzy sorry getting used to this format my first day here. Computers are not my friends. It looks like you have had a lot of issues to deal with and it can't be easy. I admire your strength your condition is not an easy one to live with.  I have watched people go through operations young and old. I live with Chronic Pain and some days are better than others so I empathise with you. Always keep fighting.

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @izy, just wanted to add another warm welcome to the community from me. I'm so sorry to hear of the things you've been through, but I'm so glad you're here.

    I hope you find comfort and support in being a part of the community. If we can be of any assistance, just let us know!
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    Hi @izy, I'm adding my welcome too.  You have been through so much and I think that writing it down makes it so real doesn't it?!  I find when you're living through changing health and life circumstances you have to get on with it.
    I too am a Mrs Fine - but that is a coping strategy for some of us.
    There are many people here who will "chat" and lots of resources to help.

    Claire Saul
    Chronic Pain Advisor
    [email protected]
  • AnkyieSpon
    AnkyieSpon Member Posts: 138 Pioneering
    @izy welcome to the group. Please don't apologise for writing too much! Say what you need to say  better out then in ? we are hear to listen and help 
    (Ankyie Spon)
    I'm a Pain Warrior
  • Saffy5
    Saffy5 Member Posts: 8 Listener
    Hi I too suffer with chronic pain where would we all be without forums you write away we are all here listening and although our problems may not be exactly the same at least we have each other 


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