Sunday, 30 January 2011

Sack the electrician

My myalin sheaths are in meltdown! The insulating sheath around the wiring of my nerves is sloughing off, apparently due to some little bit of cross wiring that means my immune system believes them to be invading pathogens!
Good insulation is the cornerstone of every functional and user-friendly electrical device, which includes the nervous system of the body. The effects of this are, so far, strange sudden and unexpected in nature. Sometimes uncomfortable and often quite funny (in a slapstick way), but also, in the still of the night, sometimes ominous.
The purpose of this blog isn't for me to bleat about the unfairness of life etc, but born through a desire to document the progress of my journey.
The current state of play is that I am on day 7 of my current relapse. The last one I had was about 10 months ago. Both relapses have presented similar symptoms: waist down pins and needles, legs heavy and stiff, not much feeling in the feet (leading to most of the slapstick incidents!). So not so bad. Trouble is I am a curious soul with internet access, so naturally I have thoroughly freaked myself out with all the possible directions that MS can eventually take. And it can meander through some dark and scary places. One of the things that has most recently freaked the crap out of me is the possibility that it will render my diaphragm weakened and unable to find a pitch when singing...that is too horrible to think about (unlike loss of mobility, continence, sexual health, swallowing, cognitive ability..oh and dignity)!
I turned 40 last birthday. According to the internet, that is the average age that the relapsing-remitting form of MS transforms into the secondary-progressive form of the disease (it doesn't remit any more)....I really wish I hadn't read that! Well...not really! I don't intent to yield to it without a fight and knowledge is the key to power!
But the light at the end of the tunnel is it might never happen! - A tantalizing prospect that it may never get worse than this...but I'm not holding my breath.

I'm currently waiting on a list to see an MS nurse - I think that'll be a positive thing. I think the toughest part of this condition so far is having had the diagnosis without any guidance. All that I have at my disposal is the self-help-freak-yourself-out technique of getting to know your disease, which may not be the most useful...