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Liz Argall writes about SEDS

We are delighted to be featured in poet & author Liz Argall’s comic ‘Things without arms and without legs’, and in her below blog. For full details see here.


A few years ago, I learned about hypermobility spectrum disorders and it really helped me understand and accept parts of myself. Ways that I’d cursed myself for not being strong enough had new context. With new information I could appreciate how successful and strong I was, given the cards I dealt with.


Now I see all my attempts to be buff as a teen and feeling like I was a failure were actually impressive strength building activities that helped protect my body. Under an x-ray my ”non-injured” shoulder looks like it has a grade 2 separation. Thank heavens I did all the strength building and shoulder stabilization activities I did, even if I didn’t achieve my surface goal.


Thank heavens I walked home from school so much, even though I often felt like I might pass out from the effort! Singing show tunes helped distract me from discomfort and build lung capacity… and if I really couldn’t sing helped tell me look for a spot to sit down and rest before moving again. Consistent movement with a purpose did me much good and helped me stay in decent relationship with my body, even if I was often frustrated with it.


I have softer and thinner skin than average, and I’m pretty sure that includes the skin in my guts. I’m a lot kinder to myself about that these days, feel less stupid about how so many bras can give me welts! I’m a lot more pleased with myself about the body tempering I do have and understand the greater need to be patient and consistent. I can bruise easily and have spider veins from sitting on the couch badly. Difficulty gaining and keeping muscle mass can be part of the challenges with a hypermobility spectrum disorder.


With hypermobility I do recover faster from certain parts of an injury, but it also means I need to be careful and precise with my physical therapy. Sprained tailbones manifest as pain, but no loss of mobility. Gaining mobility back after an injury is just not something I need to worry about too much, I just need to be careful I don’t over extend. I’m very good at walking without a limp when I have a sprained ankle.


Big shout out to one of my patrons, the Sussex EDS Society (Elhers Danlos Syndrome is a particularly savage connective tissue disorder and EDS folks often help out hypermobile folks with great resources AND what is EDS and what is Hypermobility Spectrum Disorder has changed over time) https://www.sussexeds.com/


Connective tissue disorders are massively under diagnosed, here are some great notes from the Sussex EDS Society around what to look for:


Common signs, symptoms and complaints with EDS and HSD


There are some common signs and symptoms that are diagnosed usually before a diagnosis of HSD/EDS. These are acute and persistent pain syndromes, Fibromyalgia, Chronic Fatigue Syndrome/M.E, osteoarthritis, eating issues, Gastrointestinal Issues,  gastroparesis, bowel and bladder issues, Raynaud’s phenomenon, anxiety, allergies (different types can be severe such as anaphylaxis) and autism.  Plus separate symptoms in EDS/HSD of multiple dislocations, tendon and ligament ruptures, muscle rigidity, spasms, myofascial pain, macro and micro tears. Some people have rarer types that affect the vascular system, heart or brain. Often people with EDS/HSD can have very smooth, thick skin that is young looking or very fragile, thin skin that bruises and tears easily.


Transcript:


Liz is wearing her Aikido gi and hakama (Japanese formal wear that looks like an awesome pleated skirt).


Liz: Why do I feel so terrible and itchy?


Caption: Being hypermobile means that symptoms are sometimes repressed. If you injure something and don’t lose range of motion it can be tricky figuring out what’s going on. It can feel like this…


A small spider crawls up onto Liz’s hakama.


Liz: Oh look, a spider!


Liz pulls up her hakama to reveal two legs entirely covered in spiders.


Liz: It’s all spiders!!


Liz‘s hakama is back in place. Her hand  brushes the one visible spider away from her foot.


Liz: Well, at least I know why I’m itchy.


Thanks to all my patrons and a special big extra thanks to Kate Webb, Erik Owomoyela and Sandra M. Odell

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