News update:
I have been officially accepted to Uni-Nursery and I have my accommodation sorted! I will be living on campus with an en-suite because of my many medical things.
The University have been really accommodating; they have organised for be to have (as I put it) A royal scribe (a note taker) and a noble steed (someone to carry my books and help me in class or on the way or way back and to help me carry equipment). They have also arranged it so that I have an electric key card for my dorm doors and (hopefully) a memory foam mattress.
They did as much as they could but they could only help arrange things for educational purposes. So next my mum contacted Social Services so that I could get personal care as my conditions mean that I get flare ups which can leave me bed ridden for days at an end. Social Services came over to my house for an 'assessment' and my care worker concluded that I do, in fact, need personal care and that I need it a lot!
She has put her assessment in writing now but because I am living at Uni she has to contact agencies near the Uni instead of agencies near my house. She called yesterday and told us that she is liaising with Uni but the agency that they gave her doesn't work at weekends so she needs to try somewhere else.
I have also had an assessment for an electric chair and they declared that I will need one for Uni. Since then I have had to have a driving test in an electric wheelchair to prove that I'm competent with using one and that I am not a danger to myself or others, even though I've been using them since I was about 12. Suffice it to say I passed (although I didn't get a licence - I might make one for myself) and yesterday they dropped it off so I can take it to Uni with me when I move in (which is about 1 1/2 weeks away AHHHHHHH).
I do have some reservations about moving to Uni; if I'm not well I have to trust my carer to help me more than usual and I won't have my mummy to help me or look after me (which she has had to do a lot over the past 4 years [with these medical conditions] in fact, my whole life. I will miss my mummy and my sister an awful lot! Oh, I don't think I told you... My sister's pregnant!!! She's having a girl and she's due 27th October. I'm hoping I can get back for the birth but I'm not sure how because I can't drive (stoopid doctors!)
It will be strange living with people I don't know, although I have befriended some of them on Facebook, as well as class mates and random people at Uni :) Also, what happens if I get bullied at Uni, I can't just go home, I will be at Uni. Plus, with all my allergies my mummy has decided I am keeping all my kitchen stuff in my room so no one will use my stuff or eat my food (I am taking a fridge and a microwave with me as well.)
I'm going to be the girl in wheelchair who keeps all her stuff in her room. I'm really hoping people don't think of me that way... :( I just want people to see me as me.
I move in on the 12th (I think) and Uni starts on the 17th. I've checked Fresher's MONTH (!) and there are a lot of dress up parties... Eek, can't wait :)
On the doctor's side of things, I have been told I have to go to a hearing therapist and an immunologist. I have also been put on 5mg of Midodrine 3 times a day for my POTS and I am seeing Prof in about April. I did tell him the I've been quite faint recently and feeling potsy but he told me it's probably to do with the weather (warm weather is very bad for potsies! so be aware of that) he advised me to continue to drink fluids and salt intake, I did ask him if it continues after the weather is more like English weather and it continues what should I do and he told me to just get in contact with him. (not much help really).
My migranes have been getting a bit worse recently soI had to go to the headache clinic and they have taken me off codeine completely and paracetemol for half a month because they said it interferes with my amitriptyline but it's not good because I have a lot of pain. I wish the doctors would talk to one another. They're also sending me to get a brain MRI to check everything is okay in my head (I'm hoping they don't find out that I have no brain :P).
I also tore the ligament in my foot and ankle again :( about a month ago, at first I couldn't walk AT ALL so I was crawling around on the floor (which made my knees crack and bleed) because I couldn't use my crutches nicely in the house. I am walking on it again but it hurts to move my toes and it feels bruised.
Anyway, sorry for all the rambling but updates are good and it has been agessssss...
Speak soon hopefully.
*huggle* for everyone!!!!
No comments:
Post a Comment