''Comeback Kid''

Lucebert.

http://en.wikipedia.org/wiki/Lucebert


So aware these days of every little change that is taking place in my body because of the MS, notice things that I try to both register and ignore at the same time.

Can see very clearly, that spending so much time nearly two years in bed, because of the deep pressure sore has been extremely bad for my body.

Spending so much time in bed has weakened me considerably; I shall never regain the use of my muscles in my torso.

They have gone for good now; all that time in bed has turned them from muscle to ‘pudding’.

I can no longer sit up unaided, if I try with Richie’s help, I collapse to one side or another.

Sometimes I feel like any longer and I would look and feel like a collapsed Yorkshire pudding.

These two years have been lost to me in terms of mobility, getting around, having interactions with people outside of our apartment.

I have made lots of friends in the blog world and think that without their support and writing my blog things could and would be even worse.

Feel very much that these two years have weakened me and given the MS a chance to move in even more.

Hope very much that what has happened to me will not happen to anyone else; hope that no one else will get such a deep pressure wound.

All because the people who organised and supplied me with my electric wheelchair did not make sure the wheelchair was the right size and provided adequate support.

Neither of those things was done and my feedback. reservations and misgivings were ignored and I was told to give it some time to get used to the wheelchair.

Well I did that and 5 months after I got the wheelchair I had a virtual crater of a pressure sore, which was 10 cm deep as a result.

Coming back from that is difficult and has taken all my strength and will power and endurance and does so every day.

Amazingly there is life after such an event and I am that ‘’comeback kid’’ who intends to enjoy as many moments as possible while I can and I do.

Ernst Ludwig Kirchner.

Not A Moment.

Last night I went to sleep quite quickly, probably just when I was thinking hope that I can fall asleep without any problems.

I recall thinking that and then do not remember anything else, not until I woke up this morning.

It was briefly sunny and the skies were a beautiful blue, sadly only very briefly, so much so that I can hardly remember what that looked like now.

It has become very grey and cloudy, with some wonderfully clouds, they looked like pure fantasy clouds.

Some looked like faces, others like mountains and others were even more fanciful.

Last night before I drifted off to sleep I was thinking about what I was going to write about today.

Only problem that now it is morning again and I do not remember a scrap of what I was going to have written about.

Wish I could remember it now, know that it was about how I am living now, how most of the time I do not think about how I am.

Just get on with it; every now and then it is quite a shock to contemplate exactly how handicapped I am.

When I recently discovered that I no longer have any movement in my torso I was shocked to bits, now that too has passed and I accept things as they and I am.

If I cry about it I could cry forever but that will not help, I can not change it for the better.

But I could make it worse by grieving excessively; mind you losing my mobility has been and still is awfully difficult for me and all those who knew me before to accept.

What I do find interesting is how my perception of myself changed at first because I just could not cope with the rapid changes.

Could not have imagined at the start being as I am now, would not have thought possible to live like I am now.

But it seems that losing so much has made me very appreciative for what I have and it means that life is even more precious to me now.

It has been and is illuminating for me to see this change in me, guess most people will recognise the emotions.

Life is difficult now that I am so dependant on Richie but what there is has become very special to me, so special that I do not want to miss a moment of it.

Not a moment, some say it is brave others that it is pure common sense to make the best of what you have, use it all while you can.

Live life in the here and now and enjoying all that can.

Got quite worried late afternoon yesterday and was winding myself up luckily realised that I was giving myself a hard time.

Dreadful that I have to be so critical of myself, whenever it becomes clear that’s what is happening I can back off and can stop berating myself.

Realise time and again that telling myself off is time consuming irrelevance and could better be nice to myself and just do what I can.

The result of telling myself off is that I lose confidence in my ability to do anything, that I feeI can't organise, can't deal with the post and pay bills.

Feel useless and can't seem to get out of that feeling so today is the start of my changing that too.

Accepting that my mobility has gone and I need help with everything is difficult and coming to terms with that has been hard.

Worse still is not being able to do much with my hands, the lack of flexibility and feeling and sensation in my hands is really hard to take.

Can feel pain but nothing more subtle than that which is a huge source of frustration for me.

Can't open my purse and get money out, can't open a letter and unfold the contents unless I rip the envelope open with my teeth and laboriously fold open the letter also using teeth.

Can’t pay bills online without Richie’s help need him to put the card in the card reader and put the codes in, hated that happening that couldn’t do that on my own anymore.

It’s been one thing after another and all very hard to deal with try to celebrate what I can do and not to dwell on what I can’t do.

Easier said than done, have to laugh at that, it is almost painful laughing just not which gives it an additional frisson of excitement!