26 November 2009

im confused...

i often think someone is playing a joke with me. i mean i have a condition where i cant stand up! isnt that funny, and for a while i couldnt sit up, pretty much most of the time i still cant.

then i go down that track, what have i done? come on think back. mum would always say if i did anything ungrateful, then stubbed my toe, 'jesus done that'. she isnt religious. so i stop myself from fully entering that road.

i have two appointments left this year. one next week at an m.e clinic. and then one to see the original consultant. im not expecting much. i take my pills each day just to stand still ( well i dont stand, stay still).

then theres the medical bill, the rents paid it and i have to pay them back.

then theres the bigger question, what is going to happen to me? do i stay permanently reclined? will i be using the temporary wheelie chair for good? will i be able to drive again? will i be able to work again? will the anxiety subside when the p.o.t.s is eased/ceased? will the p.o.t.s ease/cease?

then i dream of a different life. parking up in crystal palace there is a band of wagons, jalopies. four in all, freegans ( i know this cause they were on some tele show a while back). so they bin raid, free clothes, free food, peace and love and all that. wouldnt that seem attractive to you? then i think of the reality, food in bins, come on, i wouldnt eat something past its sell by date. jumble clothes, i did that when i was a student. cold campers, freezing feet, sleeping bags, not so attractive in reality if its not your thing. so what is my thing...........

what is my thing? i dont know. i know some sort of action needs to be taken.

im so confused.


Coffeecup said...

Looking in from here, the action that's needed is a good prognosis and some medication that cures your problem. I hope with all my heart that these 'pros' get it sorted out for you, and soon sweetie. It's not fair, no. This is not a punishment by any means, no one deserves to get ill, it just happens like picking raffle tickets from a tombola. All a person can do is try to accept that it's happening to them and find their own way of coping. It's a bummer, agreed. I just want to see you well. Not being able to sit up and atand must be a miserable situation, but can I say, you seem to handle it with courage, acceptance and a positive philosophy. Maybe you were 'chosen' because you are strong and have the will and tenacity to see it through no matter what. Stay smiling lovely lady. I think you are an incredible inspiration to all of us. xxx

Melinda said...

I definately do not think you are being punished by being sick either. I am thinking of you - and prayin that you get better, feel stronger, find answers, feel loved.

I always thought it would kind of cool to be a freegan...

Anonymous said...

Hi Alice,

No wonder you have so many questions. You've put yourself through so many tests and acquired some sort of label. It is good to know the cause but of little use if those questions you asked are not answered. Surely by now they should be forthcoming.

And that does lead to your other point about asking what you want. How can you know at the moment without knowing how/if your life will be restricted and for what length of time. Given what you have been through I really do hope they start helping you soon so that you can properly start thinking about what you want for the future. There will be something bubbling away there which will rise to the surface when the doubt has been cleared.

All the best


Ellen said...

Hi Alice,
I'm cranky from just a week long bout of the flu, so I can imagine what you must be feeling after all this time. It sounds like a miserable condition.

It may be best not to worry about your future at this point, as you don't yet have the answers you need. In one way, you are fortunate, as you have a supportive family that is willing to help you. That's a great asset, and not everyone has it.

I've got my fingers crossed for you that you get some good news with a way forward in the next appointments. Like your new profile photo BTW.

alice said...

hi cc

i would love to be more stronger. a little bit of courage would do me. and on the positive i can sit up now for two or more hours, which at least means when im feeling ok i can go. i think thats down to the fludrocortisone, they upped it last time. thanks for your kind words of future hopes. xxx

hi melinda

i think i picked on the media ideas of freegans bin raiding. i would like the life, however england is so cold, the thought of living in a camper would freeze my little toes off!!! now living in the med through the summer as we did when we were kids, wow that was a different matter. thank you. im hoping the future will bring betterness or acceptance. xxx

hi nechtan

im hoping that the answers will be forthcoming either next week or in the new year. im so near getting them, i think i become impatient. i need to be assertive and calm. thank you.xxx

hi ellen

i thought i looked a little ill in the photo, thanks for that. also i hope you are feeling better with the flu. that makes you feel so awful and brings you down because you just feel so yuck. im crossing my fingers for you. xxx