Sadly I've not got out as much as I'd hoped as I'm getting a lot a lot of problems with spasms. This means that every little bump, dent, cracks, stone or whatever unevenness it causes spasms and they are quite painful these days. They shot through my body and that's not the worst thing, the worst thing is the tension it causes in my back so one minute I am sitting straight and the next minute I am a lying in my chair and my back is rigid with the only contact point being that one point in my back and one at the back of my legs. This can happen at any time so it makes it rather worrying for me to go out on my own.
At the moment I'm hoping that my feet stay on the footplate of the wheelchair until my home care arrives at two o'clock, the other thing I hope is that while I know that I'm peeing myself right now I hope it all stays in the incontinence pants. As I don't want to change trousers and go through all the palaver of a change of trousers which has to happen on the bed. Someone is coming around about 14.30 to check on the progress of some repair work. Would be nice to be ready properly clothed when they arrive. It's really quite dramatic all the changes I have noticed in this last time, especially since we are here in our new place. I'm hoping that some of it will get better and that the increased spasms and rigidity in my back will decrease as the weather gets less hot and I recover from the move.
I feel really handicapped now, in the first month here I was getting used to carrying on the old rhythm of every two hours being helped on the toilet and after that I could carry on with whatever I was doing. Even managed to get out twice with good women friends, the first time with C was just round the block discovering where the various shops were. That was in the first week we were here, in the second another friend A took me all the way up the Kinkerstraat to the market. On the way we passed the Body shop and she joked with a woman outside that she was obviously doing free makeovers that day. To our surprise she answered yes we are why don't you come in.
So we went in and a very beautiful and charming young woman greeted us and enquired which one was having the makeover, when I said me and added that I hoped she would make me beautiful, she replied that I was already beautiful. She then proceeded to do my face everything was done very delicately, she explained to me that she was going to use the minimum make up, a very light foundation and a little bit of equaliser under my eyes to take the dark shadows away. She put a hint of blusher on my cheeks and a line under my lower eye and a bit of a mascara and that was it I didn't need any more she said.
I had great fun and so did A, the young woman in the shop was really lovely to us and especially to me she flattered me up the whole time we were there. She was a very nice young woman and what I particularly liked was the fact that she made an instant my contact spoke directly to me. The wheelchair did not make her want to talk to my companion instead of me and the other thing was that she asked me why I was sitting in a wheelchair, mostly people are just too scared or just do disinterested to ask.
Yes it was a really good day tafter the makeover we went down the market saw the stallholders we used to buy from and the cheese man bought some of his bargains. And then we tottered off to sit outside a cafe just up the road in the sunshine and enjoyed a nice sandwich and a glass of white wine brilliant! A lovely day the same weekend MD and I went shopping on a Saturday at the market it was excellent. And I since then I've been around the block a few times went to a coffee shop and to the local shops, never alone, always with with MD.
Then about three weeks on Wednesday we went to the staadsdeelraad, local council to apply for a new passport and sadly I had to go back after a week to pick it up so we set off but sadly only just got round the corner I couldn't go any further as it was too painful for me and everything was spasming really dreadfully, constantly lurching in the chair like I was going to be chucked out onto the ground.
Horrible so since then I haven't been anywhere not even round the block anyway must try and resolve this soon as I don't like to be scared of going out. Besides I don't know how long I will be able to do things so I must make the most of this time. And I will.
Have become very aware of how finite time and life is really have to be here and now live in the moment.
At the moment too preoccupied with my own deterioration. Had waited one year stuck on the 2 floor for a new house, caused great stress, bad for my ms. Finally new flat in May sadly since then further rapid deterioration now I can't write with a pen at all and only type with my right index finger. Notice finger getting cramped up like the others.
Have continuous painful spasms in my legs so difficult to go out.My writing for myself, my blog and podcast as well as email research and news on the internet are my major sources of communication. Would be devastated if this were also taken from me. This has all happened in the space of one year and is difficult to deal with. I need to keep a step ahead and be aware of what's happening.
Major disaster yesterday a spasm pushed me out of the chair and I hung upside down for 20 mins till MD could get here to rescue me. We are both shaken up horribly.
At the moment I'm hoping that my feet stay on the footplate of the wheelchair until my home care arrives at two o'clock, the other thing I hope is that while I know that I'm peeing myself right now I hope it all stays in the incontinence pants. As I don't want to change trousers and go through all the palaver of a change of trousers which has to happen on the bed. Someone is coming around about 14.30 to check on the progress of some repair work. Would be nice to be ready properly clothed when they arrive. It's really quite dramatic all the changes I have noticed in this last time, especially since we are here in our new place. I'm hoping that some of it will get better and that the increased spasms and rigidity in my back will decrease as the weather gets less hot and I recover from the move.
I feel really handicapped now, in the first month here I was getting used to carrying on the old rhythm of every two hours being helped on the toilet and after that I could carry on with whatever I was doing. Even managed to get out twice with good women friends, the first time with C was just round the block discovering where the various shops were. That was in the first week we were here, in the second another friend A took me all the way up the Kinkerstraat to the market. On the way we passed the Body shop and she joked with a woman outside that she was obviously doing free makeovers that day. To our surprise she answered yes we are why don't you come in.
So we went in and a very beautiful and charming young woman greeted us and enquired which one was having the makeover, when I said me and added that I hoped she would make me beautiful, she replied that I was already beautiful. She then proceeded to do my face everything was done very delicately, she explained to me that she was going to use the minimum make up, a very light foundation and a little bit of equaliser under my eyes to take the dark shadows away. She put a hint of blusher on my cheeks and a line under my lower eye and a bit of a mascara and that was it I didn't need any more she said.
I had great fun and so did A, the young woman in the shop was really lovely to us and especially to me she flattered me up the whole time we were there. She was a very nice young woman and what I particularly liked was the fact that she made an instant my contact spoke directly to me. The wheelchair did not make her want to talk to my companion instead of me and the other thing was that she asked me why I was sitting in a wheelchair, mostly people are just too scared or just do disinterested to ask.
Yes it was a really good day tafter the makeover we went down the market saw the stallholders we used to buy from and the cheese man bought some of his bargains. And then we tottered off to sit outside a cafe just up the road in the sunshine and enjoyed a nice sandwich and a glass of white wine brilliant! A lovely day the same weekend MD and I went shopping on a Saturday at the market it was excellent. And I since then I've been around the block a few times went to a coffee shop and to the local shops, never alone, always with with MD.
Then about three weeks on Wednesday we went to the staadsdeelraad, local council to apply for a new passport and sadly I had to go back after a week to pick it up so we set off but sadly only just got round the corner I couldn't go any further as it was too painful for me and everything was spasming really dreadfully, constantly lurching in the chair like I was going to be chucked out onto the ground.
Horrible so since then I haven't been anywhere not even round the block anyway must try and resolve this soon as I don't like to be scared of going out. Besides I don't know how long I will be able to do things so I must make the most of this time. And I will.
Have become very aware of how finite time and life is really have to be here and now live in the moment.
At the moment too preoccupied with my own deterioration. Had waited one year stuck on the 2 floor for a new house, caused great stress, bad for my ms. Finally new flat in May sadly since then further rapid deterioration now I can't write with a pen at all and only type with my right index finger. Notice finger getting cramped up like the others.
Have continuous painful spasms in my legs so difficult to go out.My writing for myself, my blog and podcast as well as email research and news on the internet are my major sources of communication. Would be devastated if this were also taken from me. This has all happened in the space of one year and is difficult to deal with. I need to keep a step ahead and be aware of what's happening.
Major disaster yesterday a spasm pushed me out of the chair and I hung upside down for 20 mins till MD could get here to rescue me. We are both shaken up horribly.
3 comments:
Herrad darling...my heart goes out to you and yet you find time to call and support me through my crisis. Lots of love. J.
this is one of those "don't know what to say" moments. i feel honored that thru all of your troubles, you take the time and energy to share with me what is going on in your life. i wish i could leap across "the pond," and offer you more than words.
how are you doing today? i am so glad you had fun with wine and a make-over. it is the little things that bring joy. you write so honestly and fearlessly. i feel so humbled. please keep writing. i for one, am reading.
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