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Hi, my name is Trekster!

TreksterTrekster Member Posts: 14 Connected
I have multiple disabilities imcluding
Dyslexia: this is mild and I can compensate for it most of the time by reading upside down, yep my brain reads upside down better than the right way up.
Fibromyalgia: this flares a lot causing extreme brain fog, muscle pain and tender spots at certain points of my body.
Elhers danlos syndrome: all my joints except my back are hypermobile. They frequently dislocate. In addition to this my ears also dislocate and my voice box. It hurts like hell I'm like a puppet with loose strings. I use a manual wheelchair most of the time. 
Complex ptsd: caused by a range of abusers from mostly my childhood. Flashbacks come out of nowhere, I'm on edge most of the time, have difficulties with long and short term memory.
Insomnia: caused by a range of pain and mental health problems.
Ocd: compulsive spender and obsessive hoarder, most folk think ocd is about checking and washing your hands, it's not. My hoarding is flaring at the moment but my spending has improved.
Ibs-c: I avoid foods containing gluten and dairy and drink tonic water whenever this is a problem.
Depression and anxiety, caused by a range of the above as well as having two deaths in two years in the family. I still get shaking panic attacks.
Hypogonadism: currently on testosterone treatment but cannot tolerate benzoates in the preservatives of the injectibles, that leaves a tube, a tiny pump I can't manipulate or a larger pump. But the dosage has been adjusted since the satchets were discontinued. This has caused major problems for me because the dosage has been reduced by 20g. One pump more and I risk heart disease, one pump less and my elhers danlos is affected. This is drastically affecting my life. 

I'm currently trying to get my heat intolerance recognised as ortho static intolerance by my gp, but as I've had a lot of other things going on he's reluctant to send me for treatment.

I self identify as dyspraxic but don't feel the need to get diagnosed, however it is causing a number of problems partly because this sets off my elhers danlos syndrome.

My medical records from before 2012 went missing, the NHS has lost them and I was born at the end of the 1970s. This has resulted in my having to be reassessed for autism. Despite having a lot of peer confirmation, due to the way the questions were asked of me and my mother (so called father is 6ft under) the answer was no. Both of us have major difficulties accessing our memories. This wasn't taken account of when being assessed.

I live in North Somerset and am active in the autism, elhers danlos and volunteer in the mind shop. So I am aware of what's out there it's just knowing who to ask and how to word my needs to get them met.

My hobbies include, embroidery, Liverpool fc, geography, history, stamp collecting, playmobil characters, quiz shows, soaps, karaoke, wide range of music tastes, my choir, snooker, darts, Olympics (including para Olympics) and I can't think of any others. 

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Trekster   Pleased to meet you Welcome. Thank you for sharing. I am sorry what you are going through. I know the community is very supportive.

    Please can have a look at our forum lots of posts and information around the conditions and disabilities you have.  From the community who wish to share, talk , make comments.

    Ask the community anything you wish some one will reply. Lots of new friends. Looking to listen.  Just let you know that. 

     Anytime you want to.  Great to meet you.

    Take care

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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