Update - and with giant, small changes ;-)
Since last update things have started to move fast.
For some time I have begun to feel small jerks and much greater weakness in the legs than I am used to !
I knew from the treatment when I was admitted that it is a neurological relaxation that makes you feel weak and shake, and the legs become "weak" - it may be a little scary if you are unprepared!
I was not this time - I was very happy the day I noticed the first signs.
dr Petra Kliempt send me this when I first wrote and asked her about these symptoms !
I also needs larger catheters, a sure sign of far greater relaxation in the pelvis. When I started using catheters I should use size 12, but as the deterioration and stronger cramps - size 10 - but then again a change because of a little more relaxation! Also one thing I remember from hospitalization.
My breathing has also changed. After having been in the pressurizing chamber I almost completely without difficulty breathing low in both lungs!!
Left lung use to be very painful.The oxygen I am connected to outside chamber also helps enormously.
I am also beginning to experience the body as a symmetrical whole. - And not a whole lot of fragmented parts I could not bear to have a combined experience of.
The pain feels familiar but I feel also a clear correlation in the body.
I remember also this from the treatment in hospital.
Also get a second distinct experience of being able to coordinate my movements much better.
I have added about two hours to my day - meaning I am able to be up from the bed for two hours more than before treatment started! INCREDIBLY!!
Then - the big, small changes are beginning to be felt!
Unfortunately, I have big problems with wounds
the places where elastic rubber bands from the masks are in contact with skin, I have sores and irritations.
Because of EDS it is very hard to heal so it must be avoided.
Nose is very dry and also characterized by irritation and ulcers - which of course hurts.
I hope it recovers soon.
I'm waiting for a headstrap from the States as I so can change the mask type.
A well-known problem for people with EDS - if you must use assistive devices it must be possible to switch between at least, two kinds, in order to avoid constant pressure ...