Anyone with a chronic illness.....

Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
Hi everyone, just wanting some general advice. I have rheumatoid arthritis, and started uni in september. The arthritis isn't incredibly severe, but severe enough that it's caused problems with note taking at uni, and can make me feel pretty sore and grumpy. I was having a really hard time to begin with, just cos I couldn't cope with the note taking and I got really wound up, but they've organised people to take notes for me and everyone's really trying to help, so that's getting sorted.
What I was really wanting to ask about is how do other people with long term illnesses cope at uni? At home it was never as big a deal, but here it really makes me feel different. For instance, at the moment I've just started a new drug treatment, and everyone's really understanding and stuff, but I just wish I could feel normal like everyone else. It's making me really tired and just generally a bit under the weather, and on top of that I've got loads of work to do, and I just feel like a recluse! I'm leaving my door open and stuff so it's not like i'm being anti-social, but I just haven't got the energy or time to go out lots. And on top of that I can't drink alcohol at all on this medication (which I'm on for the foreseeable future), which is just really weird when I go out. I know I should be able to have a good time without drinking, but it's hard, when everyone else is plastered...it's just hard, I dunno.
Anyway, this has turned into a right ramble, just wanting to hear from other people really, any advice appreciated. Tates x

Comments

  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    i have the chronic illness of diabetes. although it is something that shouldnt have too much affect on your life, sometimes it does. im sufferin serious eye problems because of it and i find it hard to cope at college sometimes due to stress and worry.
    my mum has arthritis and had to give up work cos of it and i know it gets her down.
    i gotta go get my dinner but ill get back to you on this one.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    look pm me if you want but im going to lay my thoughts down here.
    firstly you say its not that severe but if its a constant thing its going to get you down from time to time. my mum says its like having tooth ache all over your body. she gets down with it and grumpy!! i get down about my diabetes too, ive had it 15 years since i was 9. i dont have physical pain which i am thankful for but sometimes i get so fed up with the whole thing, i get sick of doing jags and testing my sugar levels and having to be careful but then other times i feel grateful that somone was clever enough to dicover insulin cos otherwise ide be dead. im more fed up with it now as im suffering the complications of it and having treatment which will hopefully stop me going blind. its so frustrating and i cry a lot about it.
    keep talking to the people at uni about it. keep them updated so they can keep helping you. its really good that they are getting you help with note taking. ive been getting stressed at college with the problem with my eyes and i spoke to a tutor. they told me to try not to get bogged down with things and if i was having problems to go and see them whenever i needed to. its tutors jobs to help you out. with your circumstances im sure they will be more than willing to help if you are finding doing the work hard at times. they can give you more time and stuff for work.
    sometimes i feel like i cant cope and i want to jack it all in at college but i just seem to keep going with a lot of tears and grumpy moods and fights with parents and fiances along the way.
    sometimes its good just to have a good cry and im lucky that the people i take my moods out on understand and always forgive me.
    keep going with the new drugs, i know its hard especially if they are making you feel under the weather but that will probably pass as your body gets used to it.
    best of luck with it all. try and keep your chin up. i know how hard it can be. i cant relate too much to the arthritis but i do know how it is to have to live with a pain in the arse condition on a daily basis x
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Thanks for the reply wee wuman. It's good to hear from people who understand.
    I've been in pretty regular contact with tutors and people like that, and they've been really good. I guess the hard thing now is that a lot of the problem is just me trying to cope with it emotionally. I mean, there are problems like drug side effects, tiredness etc, but also it just messes me up! My tutor mentioned counselling, but it's just not something I'd feel comfortable with, and to be honest I don't really think it's gone that far.
    I've talked about it with my friends, and they're all really lovely about it, but I don't want to burden them. And since we've not known each other that long, it still feels like you're wanting to make a good impression, not annoy people and whatever, so I just don't want to be moaning all the time. Right now, everyone just thinks the problems over because I've got note takers. Which is kind of true, of course that has solved problems, but it's not something that'll just go away. Guess that's something I have to accept too, it's just difficult.
    I have a nurses appt on friday, and I'm going to try and mention how I'm feeling then. I guess it's something they'll have experience with, and be able to offer advice on.
    The alcohol thing is really getting to me.....people keep saying, 'lets go out, we'll get really pissed' and then tailing off when they realise I can't. Not in a nasty way, it's just part of uni life, and it's weird not being able to be a part of that.
    Sorry, don't know why I've just written another long rant, this was just meant to be a thankyou for your message! I guess sometimes you just need to offload. Thanks again, Tates x
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    no problem and rant away. thats what these boards are here for. its good to get things off your chest. defo talk to the nurse about how your feeling emotionally. i think dealing with chronic illness emotionally is the hardest thing of all. when i was diagnosed with the eye problems i went through every emotion possible i think. i wanted to smash my room up at one point.
    anyway, like i said pm me if you want
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