About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Thursday, April 16, 2009
Went to sleep very quickly last night and slept until I heard Richie close the window at which point I was sadly wide awake.
Very painful arms and legs as well as a very tight MS girdle today, did my arm exercises right away.
Then Richie worked his leg massage magic and got me the first of three lots of baclofen and a bag of thc vapour.
Instantly the thc relaxed my muscles which reduced the pain and as I become totally relaxed all the pain and discomfort fades into the background again.
Found it more worrying then when I did not know what the tight feeling round my middle was, now just think to myself oh the MS girdle.
Sounds nonchalant but that hides a hatred of this disease and the fact it has taken so much of my life away from me.
Wish I did not know anything about this horrible disease, the idea of having a dibilitating disease that baffles the experts and is not a comfort to MS sufferers.
Still glad I decided that I will be making the most out of this awful situation, that is better than getting depressed.
It has been difficult to keep positive when this disease has taken so much from me, like my working life, my self image,and even my sexuality.
Really taken all the important things in my life and it is important that I find other things to replace the loss.
Glad I decided that I would be positive and not get dragged down by negativity, this is something that I have to reconfirm everyday.
It is important for me to stay positive and to try to refind myself and the meaning of my life after the devastation of the MS entering our lives.
Very important to enjoy everything everyday.
Labels:
arm cramps,
arm exercises,
arm pain,
baclofen,
leg massage,
MS,
MS girdle,
thc
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9 comments:
I love the flowers and the colors are cheerful. I hope you have a good evening, Herrad.
It's sunny here this morning, and am hoping you'll be outside on a day like this in May.
I would hate the MS, and your positive attitude helps me remember to keep one too.
((hugs))
stephany
Hi Stephany,
Glads you are enjoying the sunshine too.
I am so looking forward to going out again.
If it were possible to go out now in a small bed I would.
People might be abit taken aback but I would not care as long as I was out and about.
Have a good afternoon and evening.
Love and a big hug.
Herrad
Hi Herrad, I would push that bed out there with you!
Hi Herrad -
Yeah, I noticed your bed was attached to the wall. BR's is on wheels and can be disassembled. It comes with us in the minivan when we travel and I set it up in hotels. We no longer know the meaning of the words "traveling light."
We're heading to New Orleans at the end of the month for Jazz Fest. Gina will be selling her Batik there again this year. Can't wait!
Hi Stephany,
Thanks for the offer.
Would love to get out.
Hi Steve,
My bed is on wheels and can be dismantled.
Its a shame that it can't be pushed out onto the balcony.
The New Orleans Jazz Fest sounds brilliant hope yo u have a great time.
Great to see Gina posting again hope she is doing well.
Please pass n my good wishes to her.
Love,
Herrad
Gina is doing great. 2 week recovery, and she says she feels 10 years younger. Funny how a working central nervous system will do that for a person, huh?
Hi Steve,
Shame about our central nervous sytems.
Can't you design some software to overcome this?
Love,
Herrad
If the MS were a software problem, I would just tell you to reboot. :-)
Hi Steve,
If only it were possible.
Maybe this should be the direction of MS research how to overide the central nervous system and 'reboot' and revitilize the system.
Love,
Herrad
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