I try to put a positive spin on things, add a 'lol' or a joke but it is really hard!
At the moment I don't do much else with my week other than hospital visits and my course work for my web design course.
I thought I would write you an update as to what has been happening at the hospital lately. I will start from July, this is when I was diagnosed. I won't bother to go into what, how, when as if you wanted to know the ins and outs you'd have read previous posts.
So yeah, I was diagnosed in July with Joint Hyper Mobility Syndrome after months and months of pain and numerous tests, I was then referred for an ultra sound on my hip and shoulder as these seem to be the worst effected of my joints, or they were at that point. Now I am in a great deal of pain with my back too.
I had my scan at Whipps Cross on the 11th of September, so it was quite a wait from July! - at the Ultra sound he asked me when my last joint injection was etc etc etc, I hadn't had one so was a bit confused... He then asked me when my next appointment with the Dr who had diagnosed me was as he'd get all my paper work in before then in reference to some further injections... I hadn't had any injections and there was no following appointment of course so the guy who did the scan put me straight back on the system (or so he said he had) as he could see from my scan that I was in need of pain relief.
It got to October and I hadn't heard anything back from the guy who did my scan or the Dr who diagnosed me.... Went back to my GP and they referred me to Physio Therapy as this is a possible way of helping me with the pain too.
As of today which is... 12th of November I have only had 2 physio sessions so I can't really comment on whether it is working or not.
In my last session I ended up crying for 75% of the time. Considering I only get 20 minutes this didn't help lol. I produced the letter I got from the Dr who had diagnosed me that was supposed to follow after my scan. (I finally had some sort of acknowledgement of my existence from Whipps Cross) HOWEVER, in between the September Scan and my 2nd physio appointment Whipps Cross had 'lost my results' turns out that by error I was signed off of their books on the same day I was referred for my ultra sound scan.... (makes sense) This resulted in a letter from the Dr who had diagnosed me, without my results. They hadn't even been looked at after all that chasing and due to their error all that was said during my scan was lost and never considered... It never happened according to them! good old NHS!
As the waiting time to get onto the books took almost 6 months in the first place I have decided to try and give physio it's best shot. I feel the scans route has been exhausted for now.
The therapist is OK, but I don't think she understands the condition very well. She is asking me to do all kinds of ridiculous things and without any pain relief this is very difficult. My back goes into a huge spasm and cramps up nearly every time I try, add my shoulder and hip and everything else on my list of sh*t joints and this is why I just burst into tears in my last session. Frustration doesn't cut how I am feeling.
I am not getting my physio appointments frequently enough either. They are more than a month apart each time. I really don't have faith in the NHS any more...
As for me and my boyfriend at the moment. What can I say. my HMS has really had an impact on us. Obviously while I am still in so much pain I am unable to work and I am not receiving any type of benefit as I am not entitled. This p*sses me off too as I worked hard for 3 years full time paying taxes before it all got too much. Oh well, government for you. But as I was saying it has put a great deal of pressure on us as a couple. I haven't seen him for almost a month now. We do speak every day and I know I am not all to blame for our troubles as he has admitted where he has gone wrong but I can't help but think if I just had a little more support from the NHS or even a little bit of money our problems wouldn't have happened in the first place.
We lost our flat and a lot of things we enjoyed in life over the last year. I wish with every thing possible that we could get our life back to a fragment of how it was.
Money is defo the root of all evil.
I will keep you updated as un-depressingly possible!
L.Ux
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