Hi, my name is JH60! — Scope | Disability forum
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Hi, my name is JH60!

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JH60
JH60 Community member Posts: 1 Listener
in Start here and say hello!
Hi,
I have Familial Hemiplegic Migraine, Diverticulitis, Colitis, a previous stroke and have had a complex PFO closure for a multiple fenestrated atrial septum. I have just found out that the birth defect I have been so ashamed of all my life, due to a cruel remark by doctors when I was a baby and small child, is due to Spina Bifida Occulta.
I have difficulty with balance and walking, also loss of vision, speech and concentration. I also lose consciousness with warning, so need someone to take me out - lockdown is nothing new.
The latest neurologist (number 4) just said 'no cure, so as long as we can keep the pain levels lower that's the best we can hope for'.
Well...at least I no longer wish for decapitation lol.
Don't you just love it when people ask what's wrong and when you tell them they say 'Oh I get headaches too.'
I lost my job due to the migraines as I get them three to four times a month and they can last for up to 70 - 150 hours. Luckily I did get PIP on appeal, and the Occupational Health people at the local council have been amazing after my GP put them i touch with me, so I have a fall alarm etc.
Sorry..that's a lot to say Hi.
JH60
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community and telling us about yourself 

    Feel free to join in or ask any questions 
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Hi @JH60 :) Welcome to the community.

    Firstly, there's no need to apologise. Thank you for sharing your experiences with us, and for being so open. 

    I'm really glad that OH have been able to offer you lots of support. Do you feel as though you receive enough support now? 

    I'm really sorry to hear about the comments that your doctor made when you were younger. Does this still affect you? Has getting the new diagnosis helped you to work through those feelings?

    We look forward to seeing you around on the community! Please just give us a shout if you need anything. You might like to start by looking through our categories or recent discussions pages, or by saying hello in the coffee lounge.
    National Campaigns Officer, she/her

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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi @JH60 - & welcome to the community. Thank you for joining & telling us about yourself. I'm sure you'll enjoy being part of this friendly & supportive group. :)
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