Friday, February 8, 2019

Disability

So heres how my life has gone so far.

I was born with clubbed feet. Now they usually correct them with surgery but due to a family history of arthritis they decided against surgery.

I was also diagnosed at an early age with hypermobility syndrome.

Throughout my teenage years I dislocated my shoulders several times due to the hypermobility syndrome.

Meanwhile I had 2 severe seizures. These were investigated but was deemed to be normal.

I had severe issues with my mouth and teeth which led to having many teeth removed and braces in preparation for major reconstruction surgery on my jaw.  This never happened fortunately as they said the risks to my health outweighed the benefits.

When I was 21 I was diagnosed with a degenerative eye condition called Keratoconus. I was devastated as at the time I had no idea what it was.

In 2009 I started having seizures. 9 in one week. After many tests they found I have Generalised secondary epilepsy. Which I still don't really understand how it affects me. I have all types of seizures. My memory is not always great and I forget if I've told someone something. I just tell people to remind me if I've already told them. I don't take offence if they do.

In my early 30's I started to experience major knee problems. After over a year of fighting. I actually got the diagnosis of osteoarthritis. I was angry because the consultant at the time just kept dismissing me out of hand as the xrays looked normal. After begging a registrar of the same consultant he did a weight bearing xray. Well I had so many apologies from them as they could clearly see how much damage had been done. I was at stage 4 which is bone on bone.

Now as you can imagine this led to me losing faith in doctors. I've had several severe asthma attacks due to ignoring the symptoms as I felt like I was wasting the doctors time.

After my knee diagnosis. My other knee started to go the same way. This has happened so rapidly that my mind as you can imagine was in a tail spin. I've had an operation to smooth out the bones but unfortunately it didn't really help. Injections have been tried also and that doesn't help either.

When I was 36 I was diagnosed with early onset type 2 diabetes.  So I went on a clinical trial for a particular drug. Its brilliant I lost over three stone and almost went in to remission.

Now yes I'm overweight but I cant exercise too much because I've pain. So after talking to consultants and GPs I went forward for weight loss surgery. It's a tough process to go through. I've lost over 9 stone in all but they've never put me on the waiting list due to my mental health state.

Now my mental health is complicated. I have an OCD condition called Dermatollamania. I also have anxiety disorder and depression. All of which are trauma related in one way or another. Put incredible pain on top of that and my life is a living hell.

Recently a friend of mine pointed out to me that all my symptoms could be related to something called Hypermobile Ehlers Danlos Syndrome. This is a genetic connective tissue disorder.

I'm waiting now to see a rheumatologist who I hope will shed light on what's actually wrong with my body.

I'm tired all the time. Its fatigue which is more than just lack of sleep. I'm in pain constantly but pain killers make my life bearable at least.

I have endometriosis and polycystic ovaries too. I've had several cysts and one ruptured and caused an infection which necessitated a hospital stay. I am still having major issues even though I've got a coil fitted and on hormones too to stop the pain. They've pretty much said that I wont have kids. But I'm ok with that now. Especially as I could be a carrier of a genetic disease.

Very recently I've had corneal surgery which hasn't healed like they hoped. They want to do my other eye but due to the complications of the last surgery they are just going to wait.

So that leads me up to where my family sectioned me for erratic behaviour. I'm still kicking butt and taking names until this and my body is actually truly looked after.

The failure started a long time ago and the dots have only recently been connected by myself my eye consultant and my GP.

I do hope to get a formal diagnosis as this would give me some closure and peace of mind. And prove to the world I'm not making it up. Or seeking attention.

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