Feeling utterly alone

Sorry to come here when things are bad. I'm not sure what anyone here can do - I just need a place to rant.

I'm struggling a lot with my asthma and other medical stuff at the moment. I'm on 40mg Pred and Omalizumab but still struggling with falling peak flows and difficult symptoms. I'm back at the scaring others phase. Even had my consultant contact me and remind me I must go to A&E if necessary. I've had so many medical appointments that in the last three weeks I've actually been at the hospital more days than I haven't. :(

This would all be enough to handle alone, but I'm also trying to balance this with my final year as a full-time student and thinking about jobs, housing etc for afterwards.

My uni had been partially helpful and provided me with a support worker which I had found really useful - she helped me keep everything together, manage all my appointments, and liaised with other uni staff for me, especially when I was unwell. It took a lot of the pressure off me which in turn made my medical issues 'better' (well slightly!) because I felt I could cope with them. She knew how bad my asthma could be as she'd been with me on one of my many trips to Costa Del NHS via priority boarding AKA resus...

Recently I've missed three appointments with her due to hospital appointments - two I knew about in advance, one was an emergency so couldn't give lots of warning. I've had a letter today telling me the support has been (not even being - no chance to discuss) stopped because of the missed appointments indicating that I'm not finding it helpful.

I'm so angry - I would much rather have been with my support worker than 'enjoying' Costa. It's been made out that I've lied about these appointments, as if no-one would actually have than many appointments...

I find it hard enough to cope with the asthma and medical stuff. This is too much and I don't know what to do.

12 Replies

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  • Hi ratty

    Not sure I have much in the way of ideas to make you feel better but I hope a hug will help a little... so sorry that you are having to go through this and I think the uni are being totaly out of order and poss get your cons to contact them? just a thought.

    Anyway, you can moan on if it helps, always here to listen.

    Take care

    Snowy x

  • Hi Ratty,

    I second what Snowy said, get your cons to call and explain the situation.

    I to am sending you big hugs.

    Serenity xx

  • Oh Ratty, you're having such a bad time at the moment and I wish I could think of something that would help you. Can your family help you deal with Uni to get your support worker back? You aren't alone, though. I'm sure your family wants to be there for you, and you know you can come here for support. Sending you hugs and wishing you well.

    xx

  • HI Ratty,

    That all sounds horrible - final year is stressful enough without having to deal with all that!

    I know the support worker is supposed to liaise with the staff for you, but is there a sympathetic tutor, maybe someone like a 'personal tutor' all students are assigned, who could help with the paperwork and admin side of dealing with this? Just a thought as you may feel uncomfortable talking about this with an academic tutor, but if you did have someone who you could talk to they might be very helpful with getting things in motion. If you can think of a good way to do it, perhaps try reminding the uni that your results reflect on them as well and would they not rather help you to do as well as you can?

    Or is there any kind of student advice centre? I don't know how much use they would be but maybe worth a try?

    Otherwise I agree - get your consultant involved if you can. Never hurts to bring in the heavy guns! It's not the same thing, but when friends have had issues with annoying estate agents trying to rip them off or deny their rights they've found a letter from someone's dad who just happens to be a lawyer worked wonders - they backed right off! I would have thought a consultant in his/her official capacity might have the same effect in this case - maybe a very official letter on headed paper plus a phone call if you can get that?

    Sorry for long post, but hugs as well and hope you sort this out. xx

  • hi ,you always have us guys on here for you xxx

    Would get a letter from hospital consultant and GP letter also get

    Proof of any alowance or help you.

    Good luck Ratty and hope all works out for you.

    love glynis xxxx

  • In addition to getting your consultant and/or GP as others have suggested, have you contacted your student union? They might be able to help you get you get your support worker back. Also if you have any letters or discharge summaries etc regarding the hospital visits it might support your case.

  • ratty

    this is awful. you certainly need to get ur student union involved. u certainly should not be dealing with all of this alone, defo not in final year of studies. i am finding things VERY hard at the mo, whilst working, never mind the added stress of being in final year with exams, housing, career etc. that you mention.

    please get union involved and indeed consultant/ gp and everyone else you can think of!!

    sending big hugs

    x x x

  • Thanks everyone, it's so nice to know that I can come here and there's people who understand and care. It really really does mean a lot and helps me feel just a little less isolated.

    I need to take some time to think about what I do next; I'm really not well enough to fight this at the moment and to be honest, I'm fed up of fighting. Academically my uni is fantastic, but they just don't want to know on the social side or if you don't fit the model of 'traditional' student. I had no inkling this was going to happen and I don't feel that I can manage alone. I don't know what's going to happen now.

  • Hi there,

    I was just wondering if you've actually been able to speak to your support worker? I'm just asking because I'm a social worker and I would be horrified if I learned that this mistake in discharging one of my clients had been made. I have run into workers who have been completely jaded by the system, but I guess I'm hoping you worker isn't one of them. I'm so sorry. I well remember what it was like a few years ago when I was getting out of school, and had heart surgery the last year, and was just so tired, and it did take me a bit longer than my friends to turn around and find a job.

    It worked out well though because one of my professors who knew about my health was really helpful in helping me get a good job, but it just took several months for the position to open and was stressful in the meanwhile.

    Do you think your parents could help you out some? Mine aren't any good with that, but I hear some are....

    Take care,

    Bee

  • Hi Ratty,

    I'm so sorry to hear you are feeling the way you are right now, and have everything crossed for some improvement for you. I know to some extent how difficult it is to deal with final year and worsening asthma symptoms, as last year as i was completing my degree i went through a really scary phase - after over 12 years of controlled asthma, it spiralled and now i seem to be seeing my asthma nurse more than i'm seeing my family. I find that people (even my friends) don't believe me when I say i am going to the doctors/nurse (again), like it's some excuse. I'm now doing a PG, i'd rather be spending my time anywhere else but with her!!

    You really must contact the university and let them know why you haven't attended these appointments - or do you have someone who could do it for you? The universities are used to treating people like crap and stopping support, without even knowing the reason why. The nice lady who was your support worker knows better what you are going through, so try and contact her too. She wouldn't want you to feel alone and unable to cope when the only reason you couldn't attend your appointment was a trip to A&E.

    Also, does your university have a dispensation for people coping with special circumstances? usually applications are submitted in the second term (ie. now) and it might help you get some recognition. missing classes and meetings is upsetting and stressful and you shouldn't have to feel you haven't done as well as you could have because of your asthma.

    feel free to send me a message if you'd like. it sounds like you are really low, and even if you have someone to talk to, you might want to hear from someone who understands (at least in part). i don't want to try to pretend to know exactly what you're going through, but i can go part of the way. and i'm pretty much chained to my computer right now anyway, as I have a chest infection and an essay due on thursday!!

    natalie xxx

  • Hi Ratty!

    Just wondered if you'd tried ringing either the support worker or whoever coordinates the whole thing, like a disability centre? Sometimes they send out letters like that cos the majority of cases are people who've decided that they don't need it any more, and just explaining might actually do the trick. Otherwise, cons letters etc...

    If you want to PM me about stress, feel free. I'm also doing finals with multiple hospital admissions (2 ITU last year).

  • Ratty, You can get your asthma nurse to contact them to explain it worked for me when I missed a vital appointment due to asthma.

    Worth a try.

    Gill

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