30 April 2011

i said no,no,no

firstly a cute picture of some baby mallards, couldnt resist taking some snaps at MH today.

appt how did it go; got there in time, even found a parking space not too far from UCH. waited 45 minutes, didnt mind, i was seeing the top bloke prof g. was in the little windowless NHS consultation room for 30 minutes. Within that time we the prof examined my painful neck,wrists,asked me a number of questions, brought up on screen our private appt last year, a swiftly asked me would i like to go to rehab.


stanmore, north london, three weeks, due to the fact that EDS is a life-long condition, he wants me to learn pain management, physio so i can practise this at home. i nervously smiled, i found myself nodding before i could say anything, damn my pleasing side. i need pre-assessment to see whether im suitable, to see if funding will be given.

has anyone had this treatment? any tips or advice? my rational brain says its a good idea, i dont want to be on morphine at my age. am i a brave little thing, i will have to see, take it in my stride, one step at a time. rehab, i cant say no,no,no.

feeling pretty sick at the moment, hot, crappy, my ribs are moving about, strange feeling.


Ellen said...

Should you be saying "yes, yes, yes"? Maybe 'rehab' would be a good thing? Love that Amy Weinhouse song by the way. Hope you feel better very shortly.

Feisty Kitten said...

I love my rehab. I get to do aqua therapy and being in the water with EDS is so much easier. Its hard to find a physical therapist to work with my EDS, but the one I have is great, she takes baby steps with me and makes sure that nothing we're doing is hurting me. I really love it, and it'll help me maintain what mobility and function I have left for a longer period. I say go for it! Get excited. :)

Achelois said...

I have been on an extensive pain management course albeit some years ago and it was helpful. Learning multi disciplinary approaches to pain management. The only thing was because I have EDS the physical therapy I was not allowed to be included in. SOrry em I am not too well at the moment and so my words aren't exactly coming out very well. I haven't been to Stanmore but know that those who have have felt they are really helpful there as they understand EDS well. If you decide to go ahead, I am sure you will benefit from it. It may be worth speaking to people on the HMSA site who have attended Stanmore for more information. Obviously it would depend on funding, which in the present climate well you know what I mean. Sometimes things like this are scary but hun you don't want to end up like me because I do have to take morphine plus a whole load of other meds. You are young, and I am nearly forty seven, and if you feel its the right thing for you em, go for it. We all know EDS is incurable but a lot of us struggle alone each day with pain and debilitation that often we don't even let our loved ones know the extent of. It may be that even with rehab at Stanmore you decide that you need stronger pain medication along with multi discliplinary approaches to pain management and thats OK too. Some people are really agaisnt the opiod meds I talked with the pharmacist on my course and he explained to me that it was futile really to worry about dependency as with pain its not like being a drug addict. We don't take the meds for a high, so if we build up a tolerance its for different reasons. So long ago I stopped worrying about pain meds and see them as part of my personal coping strategy. If you decide Stanmore is for you, I hope that it helps. I found hydrotherapy made me a bit more stretchy but this does not apply to all. Whatever you decide no no no or yes yes yes, I know you will think of the personal pros and cons and give it all due consideration.

Take care em and my thoughts are with you.

Em said...

hi ellen

hopefully i will go ellen, thanks. i think when anything is put upon me i kind of flinch, then when i think things through i see the benefits. hope you well.x

Em said...

hi kitten

good to hear your experiences. i love water. i think the only place in england to treat eds is stanmore, so hopefully they will have the best staff there. thats the main thing, the future and the mobility you can maintain through having the therapy. thanks for the input kitten. hope you ok. xxxx

Em said...

hi achelois

not far behind you in age achelois. i think the hurdles that ive crossed ive always objected against in the beginning. the tablets being one, yet i got so bad i gave in and would take anything they gave me. then the wheelchair. now the strong pain meds. i hope this opportunity comes my way, will i be able to cope? im not sure, will the tiredness overtake me? i must give anything that will improve or keep my health at a standstill a chance.

sorry your feeling so ill. i would love a few days of feeling completely free of feeling crap. i have things planned in my head, yet i cant carry them through to the end in one day. always taking a long time i sometimes give up, put my mind elsewhere. i need to be more focused. have patience.

dont worry about your sentences. im much the same at the moment. very confused. hope you and your daughter are ok achelois, this illness is a twit. feel free to email me at anytime. xxxx