Invisible Disabilitating illnesse's recognised as a Disability
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I'm a 50 year old male and I have suffered or as my fellow sufferers with the same condition preffer to say "SURVIVED" for over 33 years with an invisible neurological condition called Cluster Headaches (aka. Suicide Headaches) This condition is the most painful condition known to medical science, worst than child-birth, stabbings, gunshot wounds etc... I suffer these ATTACKS ..... multible times, every single day .... spending up to 84hrs a week in immense pain.
From the age of 17 and for the first 25 years of this condition I was an episodic sufferer (1984 - 2009) and was only disabled by this condition for up to a few months per year, I held down jobs with some great sympathetic employers, who kept my positions open ..... even when I was absent for up to 12 weeks at a time.
In 2009 everything changed ..... I was off work for 7 weeks .... then after only a couple of weeks back in work ... I was off again for a futher 9 weeks. November 2009 was the last time that I can remember my life being pain free ..... I continued to work until February 2010 .... and the last 8 years, everyday has been a battle to survive .... suffering hours and hours of agonising pain and just wanting to die .... the doctors and neurologists have tried everything in their power to bring this condition under control .... and still are trying new cocktails of drugs, unfortunately with little effect.
This condition is not just about the pain or how it mentally drains you .... it completely over-powers and rules your life. My day consists of injecting myself with sumatriptan, shocking myself 6 times a day with a gamma-core neuro-core stimulator, scolding my body in the shower and breathing 100% medical oxygen to try to deal with the pain. I sleep for only around 14hrs per week, as sleep is one of my main triggers for an attack, I fear sleep which leads to even more problems.
Attacks come on suddenly, seldom with little warning, the pain I experience is so overwhelming that I lose control of my normal body functions and can wet and soil myself, this leaves me in fear of the attacks coming on outdoors .... and because the attacks are so frequent and leave you as vulnerable as a baby curled up screaming on the floor, I basicly isolate myself at home .... even everyday tasks at home like cooking, cleaning and generally looking after yourself become impossible and things become demoralising and just add to the difficulties and depression.
My life has no quality to it any longer, everyday is a struggle, for the last 8 years I've felt like a prisoner in my own home .... even in my own body at times .... I get no support apart from my family and close friends, I feel a burden on these most of the time and feel nobody really understands just how impacting on my life this invisible illness really is (people only tend to see you out, inbetween attacks, when you are ok) and at how depressing it is having to fight to have it recognised.
I have self-funded aswell as had NHS treatment and attend the National Hospital for Neurology & Neuroscience in London.
Would people feel different if I got shot or stabbed 8 times everyday and rolled around the floor screaming in pain for up to 16 hours out of the 24 with no pain relief ????? would people understand why I wasn't up for cooking or cleaning?????
Chronic Cluster Headaches and other invisible illnesse's are disabilitating and effect suffers and their families lives so much .... they should be recognised as the disability that they are. Life with these types of conditions are challenging enough .... and we shouldn't have to go without the basic everyday care we need.
The Department for Work & Pensions need to reassess how they address and evaluated people like myself with CCH and others with life changing invisible illnesses and recognise the difficulties and complications we face each day just to get by.
People are choosing death simply because things can become unbearable when your suffering and pain is not recognised.
Please sign and help me to gain the necessary help and support myself and others like me are so desperately in need of.
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