Dying with M.E. as a software developer
A couple of months ago I wrote about Living with M.E. as a software developer. What I didn’t write about was the true extent of my illness, the potentially fatal prognosis of M.E. and what I want to happen as a precaution to my possible death.
M.E. Can Be Fatal
A lot of people don’t believe or realize M.E. can be fatal. In fact, according to the latest research (PDF), 30% of M.E. cases are progressive or degenerative, with a death rate of 10%. The leading causes of death from M.E. are:
- sudden cardiac arrest (or less often, liver failure) as a result of over-exertion, often as a result of receiving incorrect healthcare treatment
- suicide due to refusal of welfare support
- vegetative state (locked-in syndrome) as a result of long-term decline
While the health “service” and welfare state have certainly put me at risk of options 1 and 2 over the last year, and continue to do so (money will run out permanently in July no matter what I do from hereon), option 3 is what I fear the most and seems to be what is happening.
I want to state that I have no written documentary proof that I will eventually end up with locked-in syndrome, but over the last 3 years it is clear that my health is in a steady state of decline and is not improving in any way, despite trying pretty much everything. In December, I was hospitalized with exhaustion when I reached a point that I was unable to move, speak, go to the bathroom etc. I was found after some days lying in my own vomit when a friend broke into my apartment due to my silence. The hospital said if it had been 2 days later I would have died from dehydration. This led to a period of over one month where I was unable to walk or function alone, so I have now taken precautions such as updating my Will and providing my friends with keys to the apartment. They check on me daily now (in the meantime, the health service still don’t care and still place impossible demands upon me on a near-weekly basis – if only I had the energy to take them to court).
My Relationship With Teenagers
In my last post I briefly mentioned that I spend a lot of time with local teenagers. Contrary to many people’s pre-conceived notions of what teenagers are like, these young people have been an inspiration to me and changed my life completely. From a depressed, anxious, socially withdrawn agoraphobic that therapists and psychiatrists failed to help for many years, the teenagers that are now central to my life have turned me into a confident, extroverted person with little-to-no depression or social anxiety. From being afraid to enter a grocery store (to the point of breaking down and crying, or starving myself) or taking the bus, to having no problems with it at all, these people took the time to help me and showed their love and care for a random person like no adult had ever done in my life. They pulled me out from a deep hole and gave me my life back.
The teenagers are now my friends, my family, my nurses and my psychologists, and hopefully, I likewise am to them. When I need food making, or my apartment cleaning, the trash taken out or my dog walking, they do it. When they need someone to talk to, help them with their own health problems or their schoolwork, I do it (when I can). They are a true family and I consider myself extremely lucky to know them.
I Want To Make Some People Happy
I’ve always said I never wanted a funeral, and that I just want to throw a big party for everyone. After some back and forth, it has been decided that this party shall take place while I’m still alive. In an incredible gesture of kindness, the teenagers set up a crowdfund last week for my small bucket list and put in over $500, but I propose to use most of the money on throwing them a party they won’t forget.
Nightclubs have been called, 150 teenagers who have been the main reason I get out of bed for the last 3 years have been invited. Now we need the money. A lot of money. So I won’t pull any punches: please make a donation to the crowdfund below and whether you do or not, re-post this article or the link, re-tweet or promote however you can. I want to give these guys a final gift they will remember for the rest of their lives.