Septemeber has been and gone.
I have been at uni for about 2-3 weeks; I have had lectures for the past week and Fresher's month for the past 2 weeks.
The Uni has sorted it out so that I have an 'assistant'; she helps me by writing notes in class, carrying my bags/equipment and helping me with some organisation. They have also arranged for me to have a mentor - not entirely sure what she does as I haven't met her yet but I will be meeting her tomorrow.
For classes/lectures/workshops I am usually in my electric wheelchair (unless I feel well enough to walk around - but that's usually only in the workshops), I have had trouble making friends... I think it's the wheelchair that's putting them off. I would have hoped it wasn't but I can't think of what else it could be, but it's still early days so I'm hoping it'll change.
I've met my carer's... originally the company we went with said that I'd have one permanent person and one who would do it if the other one couldn't make but now I have 3 but my favourite one is leaving as she needs more hours than this company can provide and I'm getting a new one (who doesn't seem at all interested) but apparently she's leaving soon too.
For now though I like having all these people helping me; not because they are helping (although that is nice - my carer's do my washing up :P), it's because they have become my friends... My assistant was the only person talking to me during class hours for the first week so at least I wasn't stuck on my own. My carer's listen to me, care about my things (they aren't happy that I'm not making friends in my class) and the other day I was having a bad day, in pain all day and then a couple people I thought I was getting on with kind of flaked on me and all of that kind made me burst out in tears, my carer listened to me and then gave me a hug and made me smile.
I have been loving the SU events!! Loads of fancy dress parties and I do love my fancy dress!! Plus pub style events every Wednesday :) oh and tomorrow we have an X-rated hypnotist coming, I think that will be hysterical!
Last night at Emergency 999 Fancy dress night (for which my outfit was amazing!! I used make-up to give my self a black eye, cut lip, a slash on my face with stitches, blood dripping from my ears, I put a bandage round my head and my arm in a sling... - I decided I couldn't really dress up as a sexy nurse or cop whilst in a wheelchair - It was the most convincing outfit there [not sure if that's because I was in the chair or if it was just good make-up] in fact it was so convincing that people kept coming up to me and asking if I was alright and if I had been in an accident :D) I wasn't feeling very well, I scolded myself in the shower and I stood up for too long... I fell onto a chair and I felt as if I was going to faint any second so I left early.
I'm hopefully going to start a photography club for my uni so we'll see how that goes.
So, I'm hoping people will realise that I am more than just my chair - and more than just my illnesses - but only time will tell.
I'll keep you updated :)
*huggle* for everyone!!
Tuesday, 2 October 2012
A beautiful 'poem' about Chronic Illnesses
Loving Someone With a Chronic Illness By Anon
To love someone with a chronic illness is to be a doctor.
It means helping them to remember their medications. It means driving for an hour to the only 24 hour pharmacy when your local CVS does not have the medication they need. It means helping them to know when their normal symptoms turn into something serious that requires more attention. It means driving them to the emergency room in the middle of the night, holding their hand in countless waiting rooms, talking with their doctors, and knowing their diseases almost as well as they do.
To love someone with a chronic illness is to be patient.
It means knowing that some days they won’t feel good and there will be no visible reason. It means canceling long term plans when suddenly they don’t feel well enough to go on a trip. It means waiting to go to bed while they do their night-time medication routine. It means knowing that preparing to leave the house, for any reason, can be a time-consuming ordeal.
To love someone with a chronic illness is to be a counselor.
It means consoling them when they’re tired and feel like they can’t do it anymore. It means listening while they try to figure out their new diagnosis and medications, and not passing judgment if they make mistakes. Or, during those tough times, listening to their burial wishes – just in case.
To love someone with a chronic illness is to be a guardian.
It means standing up for them when strangers accuse them of being a drug addict. It means discreetly asking their friends to keep an eye on them when they are testing new medications and don’t know the reactions to their body yet. It means defending them when doctors dismiss new symptoms. It means making explanations to family and friends when you have to cancel plans at the last minute.
To love someone with a chronic illness is to not be superficial.
It means seeing their bruises as beauty marks. It means seeing their scars as evidence of strength and survival. It means kissing their dry lips when they are hooked to IVs. It means learning to look past the mobility aids and medical equipment and being attracted to the person behind it all.
To love someone with a chronic illness is to be smart.
It means investigating new medications, even though they never asked you to. It means listening to them explain their research findings in terms that aren’t “normal” language. It means knowing how to make them smile when they desperately wants to scream.
To love someone with a chronic illness is to be selfless.
It means going to a restaurant based off a menu that fits their dietary needs, and planning dates around their limitations. It means going without when money is tight so that you can buy their medication instead. It means learning how much more difficult normal daily activities are for them, and scheduling your time around their time.
To love someone with a chronic illness is to be brave.
It means keeping your chin up while they talk about those scary, painful moments. It means keeping a positive attitude even though all of the websites tell you that their life expectancy will be far too short.
To love someone with a chronic illness is not easy.
It means putting their medical needs before any other finances. It means worrying every moment whether or not they are okay, especially when you aren’t with them. It means trusting their life in the hands of so many doctors who do not know them, or love them, like you do.
Thank you for loving someone with a chronic illness.
Saturday, 1 September 2012
September's Coming!
So, it has been a very long time since we last spoke. I apologise.
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!!!!
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!!!!
Saturday, 26 May 2012
May Daze
This may I have been busy;
I have a chest infection that refuses to go (I'm on my fifth set of antibiotics), I have 2 final major deadlines for college (one video and one photography), plus hospitals in between.
I have missed a few weeks of college which is making it increasingly difficult to record for my project; I have to be at college for some of the filming and (because I don't have that many friends anymore) I am enlisting the help of my classmates.
My POTS gets in the way of everything. Getting a chest infection (or any illness) drains my energy and makes all my other symptoms a lot worse.
I feel like I am floating through the days of may.
I am looking forward to finishing though... I want to get good results even though I may not need to. I don't want to just get a Pass and that's it... I want to put all my effort into my work.
I am planning to go away over the summer... No where by plane though :( Sadness!
I will keep you informed.
*huggles* to everyone!
I have a chest infection that refuses to go (I'm on my fifth set of antibiotics), I have 2 final major deadlines for college (one video and one photography), plus hospitals in between.
I have missed a few weeks of college which is making it increasingly difficult to record for my project; I have to be at college for some of the filming and (because I don't have that many friends anymore) I am enlisting the help of my classmates.
My POTS gets in the way of everything. Getting a chest infection (or any illness) drains my energy and makes all my other symptoms a lot worse.
I feel like I am floating through the days of may.
I am looking forward to finishing though... I want to get good results even though I may not need to. I don't want to just get a Pass and that's it... I want to put all my effort into my work.
I am planning to go away over the summer... No where by plane though :( Sadness!
I will keep you informed.
*huggles* to everyone!
Thursday, 15 March 2012
No News Is Good News...
I have news....
GOOD NEWS!!!
I want to reassure all POTSY's that good things happen; I have been offered a place my first choice of university. You have no idea how excited I am!!
I had my interview with them exactly a month ago today and I was so nervous; even after the interview, and after my mum and sister told me that my interview (that was only supposed to be 20 mins) run over by about 25 mins I was still a nervous wreck.
I have been checking the UCAS website about 7 times a day, everyday! Seriously, my friends told me I had to go a whole week when I was only allowed to check once a day... That was a very tough week!
But, I did it... I ACTUALLY did it!!!!!
YIPPEE!!!!
*huggle* for everyone!!!
GOOD NEWS!!!
I want to reassure all POTSY's that good things happen; I have been offered a place my first choice of university. You have no idea how excited I am!!
I had my interview with them exactly a month ago today and I was so nervous; even after the interview, and after my mum and sister told me that my interview (that was only supposed to be 20 mins) run over by about 25 mins I was still a nervous wreck.
I have been checking the UCAS website about 7 times a day, everyday! Seriously, my friends told me I had to go a whole week when I was only allowed to check once a day... That was a very tough week!
But, I did it... I ACTUALLY did it!!!!!
YIPPEE!!!!
*huggle* for everyone!!!
Sunday, 26 February 2012
My February Daze
So far this month, I have actually been feeling alright... Not too floopy or potsy; with the odd bits here and there.
I am doing my college work (mostly on time) and my sister's birthday, 21st, just past. Her birthday hoopla (as we call) went off wonderfully. She loved all her prezzies and I think I have most definitely become the best sister in world... but I guess you would have to get her to testify to that.
Over half term I had my first University interview; I shall let you know how that went when I find out. I didn't have a date for Valentine's day though ;P
I think I'm doing pretty well at the moment.
*huggle* for everyone!!
I am doing my college work (mostly on time) and my sister's birthday, 21st, just past. Her birthday hoopla (as we call) went off wonderfully. She loved all her prezzies and I think I have most definitely become the best sister in world... but I guess you would have to get her to testify to that.
Over half term I had my first University interview; I shall let you know how that went when I find out. I didn't have a date for Valentine's day though ;P
I think I'm doing pretty well at the moment.
*huggle* for everyone!!
Sunday, 29 January 2012
My January Flare
Every year, around this time, I get ill.
It consists of me being unable to eat or drink, not sleeping, having an upset tummy and throwing up.
The past three weeks were this time for me... I went to A&E but they did blood and told me they couldn't do anything so I ended up visiting my GP everyday for them to do my blood pressure, weight, temperature (and blood) everyday. (The blood wasn't done everyday, it was done every few days - which was not fun for me as my veins run away and hide from needles.)
In the end, when it got to 17 days without eating, I went back to A&E where they did more blood and admitted me for 3-4 days.
If only they'd have listened to me and mummy at first because I've suffered from this 1-2 times a year for about 4 years. I usually get better after they put me on a drip for a couple days and give me anti-sickness injections instead of the tablets - which I just throw up anyway.
ARGHH... Silly doctors!!
*huggle* to everyone!!
It consists of me being unable to eat or drink, not sleeping, having an upset tummy and throwing up.
The past three weeks were this time for me... I went to A&E but they did blood and told me they couldn't do anything so I ended up visiting my GP everyday for them to do my blood pressure, weight, temperature (and blood) everyday. (The blood wasn't done everyday, it was done every few days - which was not fun for me as my veins run away and hide from needles.)
In the end, when it got to 17 days without eating, I went back to A&E where they did more blood and admitted me for 3-4 days.
If only they'd have listened to me and mummy at first because I've suffered from this 1-2 times a year for about 4 years. I usually get better after they put me on a drip for a couple days and give me anti-sickness injections instead of the tablets - which I just throw up anyway.
ARGHH... Silly doctors!!
*huggle* to everyone!!
Tuesday, 3 January 2012
Mumfs
So, I know it's been a few months since I last posted but I have good reason...
I accidentally 'broke' my thumb. Actually they aren't sure it's broken... Oh, the joys of being hypermobile.
So, a real update; I applied for universities and I'm nervous.
I haven't had any real potsy things happen but I'm still always floopy. :(
*huggles* for everyone!
Ps. I WILL write soon
I accidentally 'broke' my thumb. Actually they aren't sure it's broken... Oh, the joys of being hypermobile.
So, a real update; I applied for universities and I'm nervous.
I haven't had any real potsy things happen but I'm still always floopy. :(
*huggles* for everyone!
Ps. I WILL write soon
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