Final Diagnosis = Narcolepsy

I finally got a black and white diagnosis of my “mystery illness” yesterday. Indeed I do have Narcolepsy, which is a very rare sleeping disorder that is very hard to diagnose in the absence of cataplexy collapse.

What Took So Long?
It’s easy to blame the NHS and to a large extent … you have to (particularly when they didn’t know how to do the spinal tap) but the real reason is that Narcolepsy in the minds eye is sudden collapse into sleep like Epilepsy and that doesn’t always happen to me, or at least to start with. As time progresses, I am starting to get really bad bouts of dizziness and limp feelings in which I have to sit down or I will fall down. My GP canceled my sleep studies, I was misdiagnosed with depression and then chronic fatigue syndrome, both of which were rescinded and I was constantly told it was Sleep Apnea or Diabetes. Very few people were willing to accept one consultants view that it could be Narcolepsy.

“Sleep Apnea was finally ruled out, but the spinal tap which can prove a chemical deficiency which causes Narcolepsy? Well they might not have done the right test!”

Emotional Drain
The past 12 months since loosing my job due to this have been incredibly hard, made so much worse by the Government’s war against the long term ill and disabled. However I feel better able to at least explain what my condition is, even if it’s not understood at least I’ve done my part.

“Having won my Tribunal to get Employment and Support Allowance (I’m allowed it) they are dragging me back to the start to begin again (to say I’m not allowed it)!”

To make matters worse, having won my Tribunal to be entitled to sickness benefits, they are dragging me back to the start to begin again! To sit in front of an ATOS nurse who will tap a few things into the computer which will tell me I don’t qualify for state support. So it’s all bittersweet, yes I have a name for what is happening to me, it’s called Narcolepsy, but there is very little chance that society as a whole is going to accept and understand enough about it to determine that yes this qualifies me to be supported.

I may have to start applying to a judge for “emergency hearings” to get my welfare case heard quicker. It’s mad because the tribunal has ruled that I qualify for ESA and the DWP may pretty soon say that I don’t because the ATOS medical is fundamentally flawed. It’s not the sort of thing you want to deal with when you are going through all this. It’s another thing on my plate.

Driving and A Job? Normal life?
I’m still being advised to not drive, which sucks, because there have been jobs which I can actually do but are they located near to train stations? No, did they have good bus links? No. More importantly, would they allow home working? No, and I don’t see why, because I can do my job as long as I have an Internet connection. There is just so much resistance out there, in general society to do the logical things.

“I’m still being advised to not drive, which sucks, why? Because some jobs on my career path are hard to reach by public transport”

Ah well, I guess I’m further down the journey, but it doesn’t feel like it’s coming to an end and after 3 years, I really just need some understanding in general society about narcolepsy and the need to sleep in the day and at inappropriate times.

Wetherspoons Update
Oh yes, I did receive another letter from Wetherspoons HQ. They are still amendment that customers who fall asleep, represent a significant health and safety risk, again swerving the actual incident that staff were trying to remove me from the premises for sleeping (because it was upsetting other customers). Oh dear, see I feel there is a general pattern emerging in how people react to Narcolepsy and it’s out of embarrassment, they don’t want me to be around anymore.

Posted on Saturday, July 23rd, 2011