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HSD & hEDS advice required
I wondered if anyone can give any advice finding suitable employment with the HSD & hEDS conditions?
In Jan 2019 I was diagnosed with HSD. I also have 2 faulty collagen genes causing some mechanical rigidity to my tendons and ligaments, with frequently occuring tendinopathies, ligament and joint injuries.
I am trying to ascribe to myself what my degree of disability I have? How does one achieve a rating? Who gives it? I am quite able, but only some of the time. Sometimes you would not notice anything is the matter. But at other times, I will be stuck at home, bedridden/ virtually unable to move, in acute 8/9/10 pain due to sub luxed hip/ unstable SI joint/ displaced sacrum. This seems to now take around 8 - 10 weeks to resolve itself, and may happens once or twice a year (if I am unlucky). But usually, 2 -3 times a month I sublux or pop something. Sometimes I recover quickly after a bit of ice/rest/ ibuprofen, other times might require a trip to the physiotherapist to help with a reset of say my shoulder. Last year I had about 3-4 months injury free/ and low pain which was bliss. I was even able to complete some decent DIY work around the house then (very slowly and gingerly, with lots of breaks, but I got a lot done). Since realising my likely diagnosis (about 6 months before my actual diagnosis was confirmed) I have managed to make some improvements. This was due to previous NHS advice being contra-indicatory to my condition and causing harm, but in overall terms I am not able to get better, only manage symptoms better.
It is unfortunately the case that it has taken 10 years from my first significant injury to final diagnosis (which is just the beginning of my journey). Although I had ankle ligament replacement surgery 25 years ago, it was not connected to my condition. In these last 10 years, I've been on the receiving end of some pretty shoddy treatment from the NHS. I don't want to get into the detail, as it is a vast amount of ground to cover. However in this time my physical condition deteriorated rapidly, particularly from 2014 to Sep 2016 when I was frequently ill/ bedridden/ due to a constantly displaced sacrum/ siciatica/ nerve sign. All the way up until early 2017 I was hobbling around on a cane when I could walk. My dispute/ issues with the NHS are ongoing and are unlikely to be resolved anytime soon. At present they will not admit to any clinical error/ are pushing back terribly, and so at the moment assistance & suppport from them and my GP is very limited. In the mean time life goes on ........
I am advised by a PIP charity to keep a diary, which I started this year. I was physically knocked out Feb - May, so not a good start, but with knowledge of the correct diagnosis/ clincial context for the first time, and help from a suitably HSD/hEDS skilled (private) physiotherapist, I was able to significantly shorten my recovery time.
I am 53 years old, and although I was still able complete some temporary part time work up until Jan/Feb 2014 (when the last employer asked me to leave my assignment after 1 week due to my obvious physical condition/ and distress), I have not worked formally for the past 10 years, and now with this illness I am hoping to make a recovery/ return to work on some basis.
I do not qualify for any DWP/ income support benefit due to my wife's wages being to high. However I will add that, in the year before my injury 10 years ago, my wife was also very ill. Fortunately she has been able to make a magnificent recovery, but during the time we were both ill, we still owned several properties, and of course for that reason of property ownership we were not entitled to any DWP/ income support. My knowledge of the DWP/ PIP, etc, is very low - prior to illness I had always maintained 100% employment. We do not have sufficient income together, and I do need to work now that I think I can. We've been in steady decline for 10 years.
I also think I have high functioning Aspergers, although I succesfully rocked in my accounting/ systems tech type job for the two decades before illness. It was never a factor. I will ask a separate question on this later.
If you've read this far, congratulations, and thanks