Monday, June 15, 2009
Gareth came round again yesterday at 14.30 and stayed until 18.30 and as always with a particularly good visit from a good friend the time just flew by and he had to leave again.
Very pleasant talking with Gareth and enjoying the delicious strawberries he brought with him and the chocolate.
I was advised to have a strawberry with a piece of chocolate which was very nice indeed; it was dark chocolate with lemon.
Certainly could cope with alot of visits like that.
I am in lots of pain today there are not too many parts of my body that are not painful, think my face and neck and my arms from shoulder to elbow are not painful.
Everything else hurts like hell, the discomfort is increased by the hot muggy weather so feel hot, sticky and longing for a breeze.
Trying to not focus on my pain but it is difficult to do so keep spending to much energy on it and have to adjust my focus time and again and tell myself to think about other things.
This morning realised again how little movement I have, can only lift my head and my arms.
If I want to raise abit of my body I need the handle that hangs down over the bed then I can get my shoulders off the bed.
Tried to see if I could do this on my own without the aid and could not do anything but lift my head up.
It is really strange to find myself in this situation as it is something that I have read about.
Did not expect that I would be experiencing it myself, sadly, so now I know what it is like to be very handicapped and 100 % dependant on others.
And that is not easy at all, in fact it is bloody difficult and for all concerned, took me ages to get used to the idea of someone else washing and dressing me.
Still do not like it at all, the one good thing for me is that Richie does it all and he is so good that it is much less intrusive than the agency carers
Now that I have personal experience I know how one manages, you just do, you just get on with it and hope for the best of times even in this ghastly situation.
I have managed by being myself and staying that way too, think I used to worry that everything even that would change drastically and unrecognizably.
The changes to our lives have been immense; think we are still reeling from the speed and the intensity of the progression of the MS.
The biggest frustration is not being able to do anything to change what is happening, think that is part of our conditioning.
We tend to think that anything can be solved or cured or mended, so something like MS is a terrible shock to everyone coming into contact with someone with MS.
Guess that is why some people can’t bear to be in touch, it is not they suddenly don’t like me.
No it most likely is fear and the realisation that there is nothing they can do to change things, plus the fear of confronting something that is scary.
As if there was a risk of getting MS just by being near to someone with MS, as if proximity alone would be enough.
Have lost a few people that I thought were good friends, they have all not said anything just do not get in touch anymore.
My email address is most likely on the blocked list so there really is nothing that I can do to change this state of affairs.
It is very sad.
Think that it is best to put away all ideas of changing the situation either of the MS or the ex friends and focus on relaxing and enjoying the moment.
Bloody hard to do especially today