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I thought whilst I have this account I would talk a bit about one of my disabilities per day, talking about what it is, how I was diagnosed, how it effects me, how I manage it etc.
Let’s start with the big one - Hypermobile Spectrum Disorder (HSD)
[cn: long thread]
Let’s start with the big one - Hypermobile Spectrum Disorder (HSD)
[cn: long thread]
HSD is a connective tissue disorder. The collagen my body makes isn’t made correctly, so instead of being strong, my collagen is weak and very stretchy. As collagen is the glue that keeps your body together, this means everywhere in my body is weak and very stretchy.
The most visible way this presents is in my joints. The ligaments that hold them together are made with that faulty, stretchy collagen & as a result I have a much wider range of movement, but I also have weaker joints that are prone to dislocation, subluxation and other injury.
This is really painful. If you imagine for example that every step I take, my knees bend inwards, my ankles slip around and my hips pop in their sockets, that’s going to be painful. I also injure myself a lot doing every day things and sublux joints in my sleep. I sleep badly!
Some people with HSD fully dislocate joints. I don’t, but I do sublux (partially dislocate) most of my joints almost every time I use them. I have some joints that are permanently subluxed, like my right shoulder & most of the joints in my left leg (sometimes my hip is in!)
I also get a lot of muscle pain, cramps and tension because my muscles are desperately trying to do the job of my ligaments & hold my joints together. My muscles get really tight & I’ve had tears because my muscle is rigid & my ligaments give (looking at you, right shoulder)
It isn’t just my joints. Collagen is everywhere in your body! My skin is effected; it is fragile, scars easily & heals slowly. My eyes also; the ligaments that control focus are weak & stretchy so it takes physical effort to focus & see. It’s possibly the reason for my deafness.
I have issues internally as well. For me, my bowel is severely effected (the doc who did my colonoscopy said I had the stretchiest bowel he’d seen!) & combined with IBS I experience issues with pain, bloating, diarrhoea & lack of bowel control. A lot of my meds are for my bowel!
My stomach is also a problem. I have a hiatus hernia, which is common for ppl with HSD, which is where a portion of the stomach pokes through your diaphragm. The hernia and HSD combined means I have severe issues with reflux, which I manage though diet and medication.
My bladder is thankfully not too bad, but the effects of progesterone on relaxing ligaments combined with HSD means when I have a period I often experience temporary incontinence.
HSD is also the likely cause of my autonomic disorder, which I’ll talk about later on in the week.
HSD is also the likely cause of my autonomic disorder, which I’ll talk about later on in the week.
There are a very few benefits to HSD. My skin is stretchy, so I don’t get wrinkles on my face and look really young! I can pick things up with my bench feet, which is handy. Oh, and being able to bend in lots of directions is kinda handy for sex sometimes 
What causes it?
It’s not been found yet, but experts believe that HSD is genetic as it does tend to run in families. Some estranged family has EDS & other family show signs, but aren’t diagnosed. Other connective tissue disorders have known genes, so it’s a very plausible theory.
It’s not been found yet, but experts believe that HSD is genetic as it does tend to run in families. Some estranged family has EDS & other family show signs, but aren’t diagnosed. Other connective tissue disorders have known genes, so it’s a very plausible theory.
When was I diagnosed?
I was initially diagnosed when I was 13, when seeing a physio for another problem. However my mum was told it would just make me more flexible and a bit achy, so I went a long time with no management or knowledge.
I was initially diagnosed when I was 13, when seeing a physio for another problem. However my mum was told it would just make me more flexible and a bit achy, so I went a long time with no management or knowledge.
As I got older I found out more, and sought help with a private specialist who confirmed my diagnosis and reassured me I do have a very real problem and my pain is totally understandable. This was a huge boost for me, even if it hasn’t led to better NHS care.
How do I manage it?
Mostly through pacing myself, rest, taking medication, using a wheelchair, using aids to help with risky activities (my lightweight kettle is a blessing), avoiding activities I know cause significant pain, heat, use of braces and KT tape for injuries etc.
Mostly through pacing myself, rest, taking medication, using a wheelchair, using aids to help with risky activities (my lightweight kettle is a blessing), avoiding activities I know cause significant pain, heat, use of braces and KT tape for injuries etc.
I’ve had physio in the past but I’ve not found a professional willing to work within my limits of my HSD and other disabilities and also not try to get me out of my wheelchair. I have no desire to walk more, I just want to be in less pain and injure myself less!
I think that’s about it for the HSD. Phew, that was tiring to write! If you have any questions or want to know more, I’m happy to answer questions. I would ask that you don’t give me unsolicited advice, please and thank you. But otherwise I’ll answer (pretty much) anything! 
