Chronic Intestinal Pseudo Obstruction & Polyneuropathy
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Finding inner strength in a troubled mind
Thursday the 26th of May
It's been a busy week.
Monday I attended a meeting at the local network of people suffering from Polyneuropathy. It went quite well.
Aside from the fact that driving services drive me nuts.
Got there way too early otherwise I could not get a car, and simultaneously I had to leave three quarters of an hour early for the same reason.
I truly hate being so dependable on others.
Back to the meeting which went well.
I am more or less voluntarily in a sort of working committee and I struggle to find the strength to this task. It's hard when you can never predict how your body will react on a certain day, but I do my best and the course we are planning, could help put focus on Polyneuropathy both from a patients point of view and perhaps even from the doctors point of view.
We are a large group of people suffering from this disease about which we know very little.
First I got the intestinal pseudo obstruction, the gastroparesis and acid reflux; CIPO alone counts about 200 people in Sweden (haven't really looked into these numbers recently) the non functioning bowel is not that common either and now this sub variant of Polyneuropathy leaving me feeling like a rare breed of guinea pig ...
Well at least some pieces fell into place; the professor we asked come do the seminar, she wanted quite a nice fee for her time and trouble and I do get that, but since the seminar facility merely covered a symbolic fee, we had to work out a new plan.
Luckily we got a lot of help from one of the employees at Neuroforbundet Skånes department in Malmö. And with the help of this fine employee, we got a scholarship which will hopefully be enough to cover the professor's fee.
Tuesday I had an appointment at the urologist office.
Unfortunately I am still unable to feel anything neck down, a fact I have a hard time coming to terms with.
So much like the neurologists appointment back in January, it were some unpleasant pieces in a puzzle, I do not know the context of.
After the appointment which took a lot longer than I expected, I went to pay the neurologists department where I lay back in 2014, I brought some chocolates on Monday to bring alongside a small note of gratitude.
Unfortunately none of the nurses or doctors familiar to me were at work but I left my humble gift, which will hopefully find its way to the right people.
But at least driving services functioned okay. And the sun were shining from a clear blue sky.
These two first days of the week took its toll on me, so Wednesday, I spent reading out in the sun, in our lovely garden.
And today it was back in business with the training.
First real session with the physiotherapist...
First part of the session was business as usual but the second half offered a few new treats.
Since all the machines are brand new, my physiotherapist had ordered a rowing machine, water operated and a bench press primarily for the legs. And today I got to test the bench press.
At first I "jumped in " and pressed the bench, it took all I had, while the tears ran down my cheeks, I did it.
My physiotherapist smiled and then scolded me for being to fast, he had not adjusted it for me, so it was set from a prior user at 120kg.
He took it all away but then it was not 'fun' so we agreed on a suitable load which turned out to be 20 kgs, he told me to take breaks in between which I did. So while he got my new appointments I did 6 times 5 pressers in the machine, at first I felt fine, but by the time I arrived back home, my legs had turned into rubber... And now 7 hours later, they are even more rubbery:-)))
I just get so excited when I am able to do something, so sometimes I overdo it.
Well time for a rest up before working therapy and the paraffin treatment awaits in the morning.
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