So, life has changed quite a bit since I last posted on this blog. I am now a disabled girl as I have been professionally diagnosed with Autism Spectrum Disorder and Ehlers Danlos Syndrome Hypermobility Type III. Both diagnoses appeared within a couple of weeks of each other in December giving me some well needed time away from appointments over Christmas to adjust to the news.
None of it came as a surprise as my sister has these conditions but it still didn't prepare me for what was to come.
I had come out of a temporary job in September last year fully expecting to find another one. It was during a job hunting trip to Exeter that I injured my feet. I was wearing-in some DMs and thought they had got to the stage where I wouldn't need plasters. Unfortunately back in September my knowledge of EDS was limited so I didn't realize I had excessively soft skin tissue which blisters much worse than other peoples. So I walked round all day in them. I had so many blisters on my heels that this, in addition to my feet swelling and pushing against the tops of the shoes, meant I tore my feet to shreds and couldn't walk properly for the next three months.
I panicked. I could not get rid of the pain in my feet. My big toe joint was so swollen and sore I couldn't bear to have it touching a bed sheet. Needless to say I couldn't sleep for the pain and ended up spending 12+ hours in bed every day in the run up to Christmas. My GP gave me codeine but it didn't help me to sleep and I only felt worse after it wore off after six hours. I also couldn't imagine myself working whilst on such a strong drug so felt very depressed.
When I finally went for my Rheumatology appointment at hospital I scored 6/9 on the hypermobility test and was diagnosed with Ehlers Danlos Syndrome. I am now waiting to see a specialist in an EDS-focused clinic at Bath Hospital. I have been given slow release 24 hour pain relief medication which also helps me to sleep so am feeling better although I am still not walking normally.
Ehlers Danlos syndrome is a condition where the joints are hypermobile. Lots of people are hypermobile but don't suffer any problems because of it. Those with EDS do. It's a condition which affects every biological system. In other words it affects everything. I won't go into it here but you can click here for the Ehlers Danlos UK Charity if you or someone you know suffers joint dislocations or chronic widespread pain, severe IBS or heavy unexplained bruising. Please go to your GP as soon as possible if you think you have this as it takes three or four months to get diagnosed and then you may want to see a specialist in London or Bath and that can take a similar length of waiting time. Awareness of this condition is low and the only way my sister found out was through a friend with the same condition informing her. It is very rare at the moment but experts think more people may have it so do have a look at the charity website.
For me the most significant issues relating to EDS are: not being able to swallow properly, losing my voice sometimes, dry eyes, hair fallout, acne, jaw-lock, jaw partially dislocating, brain fog, mouth ulcers, sensitive teeth, eye stigmatism, overproduction of ear wax, food intolerance such as citric acid, overall joint partial dislocations, arthritis, easily bruising, bleeding for longer than usual, longer healing time, nails not connecting properly to nail beds, sweating excessively due to associated condition 'POTS', heart palpitations, muscle twitches and spasms, sickness, nausea, severe indigestion, asthma, eczema, insomnia, chronic pain, fatigue, excessive urine production amongst many others.
When I am work the symptoms which most affect me are the joint pain, sweating, losing my voice and lots of others. I am working with my GP on how to reduce these but as the condition is rare and complex I really need to speak to a specialist with experience of it to truly help. For now the pain relief, powerful deodorant and physio (posture can help with voice loss) through occupational therapy are going to help with the main barriers to feeling well and happy at work in terms of EDS. (Autism at work? That's another story.)
I am very thankful after following a few people with the condition online that I don't have it very severely at the moment. One teenage girl I follow is constantly poorly and spending time in hospital so if you feel able to please donate to the EDS charity. There is also another type of Ehlers Danlos Syndrome which is also incurable but also fatal. Please be aware I do not have this type as EDS is hereditary and my mother is alive and well at the age of 63! In fact all my relatives have lived to a ripe old age.
I wasn't able to knit at one point because due to the lack of exercise through not walking anywhere I became very lethargic and every joint screamed with pain. It was a vicious circle - the more pain I was in the less I did which caused more pain.
Luckily I was able to get myself motivated to go swimming once a week as I was regularly seeing a clinical psychologist from the autism team who encouraged me a little. After six swims I do feel like my arthritis is improving and my fingers and wrists are ready to craft away!
I have been crocheting my blanket and I have about ten rows left plus the edging to do. It’s very exciting indeed! I've also nearly finished a cushion which I started around the same time as the blanket. So this will be lovely to see finished and together.
Goodness I’ve nearly written a 1,000 word post! I will come back soon to chat again...