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Hi, my name is CG74!

CG74CG74 Member Posts: 1 Listener
Around 6 years ago, so in 2012, after being passed around the clinics at the hospital, I was diagnosed with Behcet’s Disease.  It is a condition that effects the small blood vessels, so can attack any part of the body and multiple sites at the same time.  I suffer with mouth, throat, gut and vaginal ulceration, I also get ulcers and hot spots on my legs, Chronic migraines, severe join pain and depression, although my depression may well be PTSD from my military service.  Along with all the pain I suffer with, I have periods where flashbacks and nightmares become a regular occurrence, so if pain isn’t keeping me awake, flashbacks and nightmares are instead/aswell.
I am very grateful to my GP and all the staff/consultants at the London Centre of Excellence for Behcet’s patients located at the Royal London hospital in WhiteChapel for my ongoing care.
my medicines regime consists of 22 tablets a day, including MXT and an immunosuppressant medication called Mycophenolate, along with top up Oral Morphine and 2 weekly Humira Injections which I have to administer myself.
My health is better than it was, although the day in day out pain and random symptoms do frustrate me.
l used to be incredibly fit and active, but now rely on crutchex and a wheelchair to get around, due to the amount of pain I suffer in my hips, pelvis, lower back and ankles.
The good days I have are few and far between, but I do my best to stay motivated  taken up archery has given me something to be a team player again in, which I really enjoy.  Archery is a very accommodating sport, with disabled archers competing with able bodied archers.
Help 4 Heroes has also helped me to start being my old self through support and sport.  I have just come back from a week of kayaking at Tedworth House in Tidworth Salisbury.
Being disabled is now something I look at with a more positive outcome.  It isn’t all bad.

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @CG74 and a very warm welcome to the community. Thank you for taking the time to share this with the community, we really appreciate it. I hope you will find the community a supportive environment to give and receive support. You may find the physical/ mobility impairments, mental health issues and hobbies and leisure boards particularly interesting :) 
    If you need anything else then please do not hesitate to ask!
    Community Partner
    Scope

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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @CG74   Pleased to met you welcome.

    Thank you for sharing may I say a positive story. We as a community are supportive care and share.

    All of us have issues and problems with disability or illness.  Also glad to hear that you are coping the best way to deal with what your disability does to you.

    All I can say have a look around the forum there are plenty of our community members whose disability or illness. May cause them issues and problems but strive and struggle to cope and try to give a positive outlook.

    Please ask the community anything if you wish to

     I am also sure the community will be contacting you on your inspirational story . Ready to listen.

    I am one as a community member.  Always here.

    Please take care

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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