About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Tuesday, July 13, 2010
Remember It Is Business.
Francis Bacon.
http://en.wikipedia.org/wiki/Francis_Bacon_%28painter%29
Its 13.00 already, two huge spasms started the day, felt like I had been pushed violently up and down in the bed.
One second my arms were painful and the next it felt like I had been kicked, big spasms feel like being moved but there is no movement at all.
Tried to regain my equilibrium and get my arms stretched out and do my arm exercises, which all went well.
After my arm exercises, I asked Richie for the leg exercises, also asked if he needed to empty the catheter bag.
When he looked he saw that there was nothing like the quantity he expected, at first it seemed everything was ok, but as soon as he begun to do my leg exercises Richie saw a small leak.
Apparently the catheter was slowly coming out, luckily Richie managed to pop it back in quite quickly, sadly not before the sheet got wet.
So Richie got me out of bed and to the toilet and then under the shower which felt marvellous, it was excellent to get showered earlier today.
Feel very good that everything got sorted out so quickly, once back in bed Richie did the leg massage and exercises and then he set me up with my laptop.
I got an out of office response from Harm, from Welzorg, who should be adjusting my arm supports, the mail informed me that Harm was off on holiday until 8 August.
Have been waiting for him to come round here to adjust the arm support, especially since Michelle, my ARCA advisor called me on June 21.
She called to enquire whether the arm supports had been done or not, when I told her not, she was very surprised and said she thought it had been done during her holiday
Which was at the beginning of June.
She said she would get it sorted right away, from then until now I have not heard from her again nor has any action been taken.
Have just sent my case manager at ARCA a mail expressing my disappointment and sadness that I have been waiting so long, in fact since the end of last year.
Waiting with so much pain and discomfort, for the arm supports to be adjusted so that I can use them and do not have to support my arms and shoulders myself.
Doing that was so very unpleasant, but for a time I actually thought that the painful shoulders and arms was the progression of my MS.
It was a huge relief when Richie made me some temporary arm supports a week ago and I instantly could feel the difference and know that it was lack of support and not my MS getting worse.
What a relief that was, my case manager has just phoned and she and Michelle my mobility aids advisor will be here next week Wednesday, to discuss the situation.
Well after a cloudy and pleasantly cool start to the day, the sun and blue skied are back again its pretty, but hope it does not get any warmer as this is good.
Ok that is if for today will be doing my best to enjoy today and not get too wound up with the shortcomings of burocrats.
Keep reminding myself it is not personal, it is only business, it helps me dealing with them.
As Richie said ´´remember it is business, it´s best to not take it personally, then it won´t hurt you´´
Labels:
arm exercises,
catheter,
leg exercises,
leg massage,
pain and discomfort,
spasms
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8 comments:
Waving HELLO to you from WA !!!
I know what you mean. I've had to talk to Dr's about a bill twice now. You just want to pull them through the phone and have them be in the room with you. Then, they would do what they were supposed to do ... And, it is just business but it drives me crazy !!!
Enjoy the rest of your day,
JC ^,,^
(today I had time to send you a message but like I said before, some days I don't. and my fingers have been giving me a bit of trouble lately ... which you know all about ... so, just know I do read your blog most of the time. I'm here even it it's far away)
Hi JC,
Lovely to see your comment, agree with you about getting frustrated and wanting to pull the person causing it through the phone.
Hope your fingers improve soon, horrible not being able to use them as you like to.
Waving back to you.
Love,
Herrad
GRRRRRrrrrrr....some days you just want to grrrrrr..... and hope that makes everything work right.
But it doesn't.
Hi Herrad,
Gosh I HATE the muscle spasms. Enuf said about that.
Sorry your people over there are taking their sweet time making things right for you.
You'd think that after all this time you've spent in bed that they'd have a heart and put a rush order on anything that would give you comfort and/or independence. Doesn't seem to work that way, though. There's NO excuse for it.
But you're right - it's no good for you to waste energy on it. Richie's fix will have to last awhile more.
Hard not to take it seriously when it affects your daily life. I say do what you can each day to keep things, moving, then set it aside and enjoy a bureaucrat-free day.
Take care, darlin'!
-steve
curesucThat is dreadful my dear keeping you waiting all this time you have enough on your plate. Hope it gets sorted asap. Hope the weather stays cooler for you. LOve Joan
Hi Sherry,
I agree some days you have to have a growl, I usually have a few therapeutic couple of minutes swearing at my MS, it always feeds better afterwards.
Hi Webster
You are right spasms are shit.
And you are right there is no excuse for the arm rests not being done already.
Having been in bed for so long as a result of being given a w/chair with no support that was too big for me is inexcusable.
Hi Steve,
You are right it is hard not to let all the frustrations get to me.
I do keep reminding myself that it is only business and not personal.
Hi Joan,
We are hoping too that they get the arm supports sorted quickly.
Thanks everyone for coming by, its very frustrating that after all the good work getting the wheelchair adapted and then wait for months to have the arm supports done.
Trying to keep calm, we both are, but as Sherry pointed out a growl helps and then I move on.
Love,
Herrad
We here in this complex have disabled who are independent still but graduate to walkers and wheel chairs and scooters. I saw the neatest wheel chair today going out in the 115 degree heat with a shade on the top and when he came back he had a huge 20 roll package of toilet paper tied to the top. I did get a laugh out of that one. I do hope you get the arms rests soon. I will be glad to hear it. I was pleased to think I recognized Francis Bacon pictures as soon as I started scrolling down. I am not usually that smart.
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