again its been a long time since my last post. i guess mainly because i was igrnoing what was happening and not wanting to think about things.

things have deteriated with my health alot.

my sight continues to deteriate.i have been finally registered sight impaired. the photophobia is horrible now. the filter specs and sunglases dont work and even when i close my eyes the light still burns so much through them into my eyes.

my night blindness is continuing to affect lighter and lighter dim light situations. and on top of this im seeing things inth dark that arnt there like the cieling crashing down on me or lights shooting towards me. im getting quite scared of the dark now.

sight level wise im about line 2 on the chart with my good eye. the low vision googles i got dont help me now and i have an appoitmnet to see if theres anything else they can give me.

hypermobility has gone down the pooper to. my SI joint has finally triggered and im in constant pain with that. i walk with a walking stick now but for other reasons that il explain further on im needing more support.

my right shoulder has started to get very clicky and clunky so im quite concerned that is going to sart to dislocate. my wrists and finger joints are getting stiffer and more painful so loosing alot of fine motor skils with them.

last time i blogged i metnioned that i was to see a specialist. well i did and she was brilliant. she is such an amzing caring docotr she even foned me at home at night after seeing her kids tobed to discuss some test resulsts with me.

she has put the pieces together of all the puzzles iv been given the docotrs for the past year, pieces that gps ignored, put down to 'anxiety' or simply told me wasnt possible to have them at my age. along with the sight loss which still hasnt been explaeind she has figured it all to be connected. and it all comes doen to some form of degenrative condition such as MS or motor neruone. my new gp agrees with this too and im waiting for an mri to give some form of confimation.

i ant really walk far now. i have walkgint sticks but can only manage 10 mins of standing max or 20mins walking. after that i need to sit and rest for ages. so ive been loaning wheelchairs on days out. as well  as walking frames. im 28 and lining up wtih the old ladies at the post office comparing zimmer frames. its the most degrading thing.

im prety incontinant too now. yep im not afreaid to say it aout loud. im 28 and i have to wear nappies because i pee myself throughout the day. i have a pampers wet sheet on my bed and getting intimate with my boyfriend usually ends up with me wetting myeself in the middle of it.

i was pretty positve about thigns before but now im gettig peeved off. peeved off that i dont knwo what is happening to me. if it was wose case scenario and i was going to end up a lump in a chair with no contorl over anything then so be it. thats what i chose this life for for some reason i havnet discovered yet but i just want to know.

i now have to eat with my head really low down because i cant lift the sppon up to my mouth repeatdly. i have to dilute my cup of tea with cold water like a child because i cant hold the cup long enough to drink it sipping it like i use to.

i gave up photography and digtial art because i couldnt see to do them and it crushed me and so turned to painting and ceramics but last week i left the studio crying because i couldnt hold the hrush to glaze my pot and  i broke my pot becuase i couldnt hold my hand up to use the whirler stand and i broke a big chunk out of it lifting it down to the table so i could like my and on the table and slp the paint on like monkey.

im on mega high dose of sleepers now because the spasms and cramps are son intense at night that the jerks my brain is making my body do to get out of them is throwing me out fo the bed.

so i cant walk much, cant eat properly, cant drink properly, can go to the toilet propelry (for added insult to the incontinace wet style , my bowel is now pretty much non existant in terms of fucntion so im on laxatives every day like smarties just to get to the loo once a week), the pain is constnat, cant sleep unless im comotosed, cant see a great deal and im getting worried about my hearing but im not mentioning that to anyone i kno. i know my famile and friends dotn read this so i can be open here.

i just wish i knew why. just one answer. amd i going to get worse or am i going to get back to normal again/? yes or no. whats happening to me, why does my brain hate me so much. why is my body so intent on fighting me,

people are being so kind and genrous to me. i use an email version of ebay for blind people. and i mentioned on there that i had recieved no funding to help me buy some of the essential things to help me adapt to my sight loss, software for my computor, a braille machine, etc etc the amount of moeny people have offered me is so huge. another woman who i dont even know who knows of my situation through my mum has offerd to give me her anual xmas charity donation to help me buy the software.  iv been in tears so muc this week at the kindess of total strangers. i cant acept any of the moeny becuase im just so taken about the people who dont know me can be so kind. so i have asked them if they want to help me can they donate to action for blind, an organisatin that has supported me so mcuh these past few months with advice, helping me find work, kicking social services into gear etc.

im still appearing the usual carrie to everyone else. i think because i dont know how im supposed to be. i know people go through a greiving stage, an angry stage, a complete breakdown stage when tehy find their bodys are slowly dying. i want to be able to do that now, i feel at that stage but because no one has said whats wrong, i cant do that yet.  my family are very concerned now. they notice the deterations more than i do. we have talked about applying for dogs for the disabled once we gt an anser from the mri. my mum is no longer recoiling at the thought of using a wheelchair and is encouraging me to use the walkers and chairs. he concern is how can i move safely in a wheelchair with a white cane. anser. i cant . unless i use an electric chair. but they arent always on offer to loan for the day at shopping centres or museums.
i cant use a manual when im with my boyfriend because hes blind and despite us trying it just doenst work.

im sorry this has just been one big feel sory for myself blog. its not like me as you know to be so down beat about things. i promise to post again when im a bit cheery.

i aplogise also for the hidisouness tat is now my typing. i posted this and read it back and im so ashamed at the awufle mistakes. the communicaiton beteween my brain and my fingers is getting alot worse too now and bwhile befor i could joike that my fingers were too fast for me, now thers big parst of my writing that are unreadable. im sorry if things dont make sense and i promse i do still have the same iq or 120 that i had las year lol

to end on a positve i have my first proper braille lesson tomro after going for my regual prod and poke at the doctors.