I used to be a regular poster on the old boards but this is my first visit here - and the first time I have felt a need to connect with other MSers again…
This is probably going to be a long ramble so please feel free to move on before I bore you.
I have looked through recent threads to see if this has already been discussed but couldn’t find anything.
I don’t know how many of you are aware that Clive Burr, the original drummer with Iron Maiden, died this week aged 56. He had had MS for a while ( though obviously it wasn’t the ‘lifelong battle’ that one newspaper it as…).
I am experiencing a welter of emotions. First and foremost is my sadness that someone so talented and admired has died so young and how devasting it must be not just for his many fans, but most acutely for his friends and family.
Then there are many more thoughts.
Some of the online comments have made reference to the ‘cruelty’ of this ‘horrible’ etc condition. I surprised myself by feeling pleased that others viewed it as such - so often I feel that what I go through is seen as ’ no big deal’ - especially by some MSers who are mildly affected. Even a lot of the MS literature seems as if it is at pains to point out that MS is really not too bad and with a little adjustment you’ll be just fine. Whilst I understand the need to reassure the newly diagnosed and also to reflect the advances in care and treatment, it irritates me as I feel it negates my own harsher reality ( I do realise how subjective my opinion is). I suppose I am especially sensitive in the current climate where those in receipt of disability benefits seem to have become the new public enemy.
My confused thoughts then move on to looking at the reality of my situation - assessing just how much my daily life is compromised and then realising that even I do not get any worse it will become much harder to cope without DLA ( I would not meet the current criteria proposed for PIP). I am no longer able to work and I am single so have no one else to share the physical, practical or financial load.
I usually try to avoid self pity ( I have never once thought ‘why me?’ - if anything ‘why not me?’) and for me diagnosis was a relief. But fifteen years in stories like Clive’s bring into sharp relief just how much worse things could get. I am not looking for reassurance that MS does not kill you - I think that is just semantics and I know enough people (including some old users of the boards) who would not have died so soon if it was not for their MS. It is not the dying itself that worries me - my life is not good enough to feel it would be any great tragedy for me to shuffle off - but the increasing possibility of reaching the stage where my MS becomes life threatening and all that that entails. Then I like to think that that would never happen because I have every intention of taking death into my own hands if it looks like I am at risk of becoming totally incapacitated.
Then I think, Oh s**t - does that mean I am already contemplating death? And if so should I not be trying to do more with my life at the moment while I still can? Then I think I don’t have the physical energy and am in too much pain and discomfort to actually get up and do something about it.
And now of course I have mentally exhausted myself with all these thoughts. Then the realisation that I have no one to share them with - then a brief respite when I remember the boards. Hence my long and tortuous post.
If anyone is still with me, thank you for listening.