Uni advice

[alice-emma-louise]

Hi,

I've just finished my first year at university. I am back again in September and thought I did OK last year without support. However when I picked which modules to do next year, I realised I was looking at timetables and picking modules without early lectures. Then thinking back, I realised that actually I really really struggled with fatigue last year, I was falling asleep in lectures every morning even though I was getting early nights every night, I was not concentrating in lectures and coming straight home from uni and going to bed. This wasn't a problem in year one as I didn't have too many lectures, the results didn't mean anything and I wasn't working.

However, this year I will have more lectures, more modules, more early starts and late finishes, it counts for 30% of my final degree and I need to earn some money. I'm really worried as I am realising I kinda went through year one in a kind of trance and remember nothing about it now, I was just surviving! I'm terrified that I barely make it through lectures let alone be capable of doing the extra work/reading required for passing year two (and i just found out that noone on this course has got higher than a 2:1 without a chemistry A level which I don't have so I need to work even harder to do well). The thing is, whilst I suffer more with pain than I thought I did (I just started a new job waitressing which I used to be able to do with only a little pain and yet last night I came back in so much agony!) I don't really suffer too much during uni (I do make sure I rest loads!), I get aches when sitting too long in lectures and struggle with the walking in between but I manage (and luckily our department is really well off so we get printouts rather than writing notes ), because of this, I would feel like a fraud going to the uni support office and asking for some kind of help getting through the day, but I really can't just get on with it like I did last year. I need to take my HMS more seriously, but I really don't know what to do....do I deserve support for "just being tired" or should I just stop moaning?

I feel like I can think much more clearly about these things now it is the summer break and feel much more rested so I find myself brushing things off and saying "well it wasn't too bad last year"...but it was quite bad, and it can only get worse ....as an off point, does anyone find memory being a problem with HMS? I find I forget how bad pains are and end up feeling like every time is "the worst ever" cause I just can't remember how bad it was last time, maybe it's just a coping mechanism?

Sorry for the long essay but I really am worried!

I hope someone can help!!

Thanks,

Allie.

[Ruby]

Hi Allie,

Yeah the memory thing gets me too. I'm lkike a goldfish! I think it must be a coping mechanism. I think women have a chemical in their brain that makes them forget severe pain. Why else would women choose to give birth more than once!

I think you need to go to student support/disability student advisor and let them know the problems you may face. It sounds like your second year is going to be tougher and you may need someone to help you out within the uni. Perhaps they could help you manage your timetable/pick modules and lectures to attend. Would they let another student record lectures for you so you didn't have to attend every one? A bit of understanding from those around you can go along way in keeping you positive to carry on.

If you need to moan, come and tell me about it! I can moan for Scotland about HMS!!!

[Rosie]

Hi Allie

I think you need to see a disability advisor at your UNI as soon as possible, and tell them exactly what you have said to us i.e. that you only just coped with last year and are worried about how you will cope in your next year. Fatigue can be incredibly disabling but their are ways to get help. You may well be able to cope with the walking around campus, but maybe if you had assistance with this you would have more time/energy left for other activities, like essays or work.
Also, have a look on [url]http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/On_a_low_income/DG_10034876]here[/url] to see if you can receive any benefits,this may allow ou to concentrate your energies on your course.

Rosie

[alice-emma-louise]

Thank you both so much for your advice! It really helps to know that I'm not just being silly about the whole thing! I think I will go to my doctors as soon as I get back to Liverpool and see about some painkillers that actually work and see if they'll refer me to a physio. Then I will go and see uni and see if they can offer me any help, I don't know if I have my letter of diagnosis, will I need it? Even if they ask lecturers to email me notes for morning lectures so I can miss those and have enough energy to get through the afternoon ones it would help. They might be more happy to help if I tell them about me taking books out of the library over the summer to get to know the modules for next year before the lectures start, 'cause I know once they've started I'll be so tired that nothing will go in properly and I'll find it really hard to get my head around the modules. Last year I was just getting through the week, waiting for the weekend then sleeping all weekend, its not the life of a student really is it!

Thanks again! I really am grateful!

Allie.

[Stone]

Bit late to the party, but definitely tell the uni people - they're used to people not telling them until it's too late so they love it when you're proactive The senior tutor for my department used to give a talk at the beginning of every year to remind people that he had a big comfy leather chair in his office and they were welcome to come and cry in it, but he was less sympathetic the closer to exams they left it! (and he was lovely to me when I went to see him so I believed him...)

People don't remember pain at all well, like ruby says it's a coping mechanism to stop you being paralysed by fear of getting hurt whenever you try anything new. HMS can give you memory problems but not remembering pain is completely normal and totally welcome!

Enjoy your time at uni, you only get to do it once

Stone

[alice-emma-louise]

Hi Stone,

You're right I need to get it sorted sooner rather than later, for piece of mind as well as keeping the uni people sweet!

The memory thing really does me no favours, my fella no longer believes me when I'm "really sore" because he thinks I've forgotton how bad it was last time and thus he brushes it off as an exaggeration, although I've been using these forums to teach him about HMS and I think he's starting to understand more! Only taken a year to get it through to him lol!

Thanks for your advice, I am very keen to enjoy uni, as you say it only happens once, and it's as much about the social aspects as it is about the education so it would be nice if i can get enough rest next year to actually make it on a few nights out rather than going to bed at 11 every night....even my grandmother doesn't go to bed til 1am!

Allie.

[alice-emma-louise]

Hi All!

I wonder if anyone can advise me. I have emailed my head tutor at uni asking to discuss what arrangements can be made to make uni life easier next year. He has asked for documented evidence of the condition in order to proceed. I never received a letter from my rheumatologist when I was diagnosed (I don't think) and I moved doctors surgery right after my diagnosis, will my new doctors surgery have a copy of the rheumatologists diagnosis or will I have to contact my old doctors surgery?

What else would constitute evidence? I may have some letters referring me to physio and my current doctor has referred me to another physio (which I have yet to hear about).

By the time I was diagnosed with HMS I had been in and out of consultants offices, doctors surgery and hospitals for so long that I just kind of had a big sigh of relief then brushed it under the carpet so I really am only just starting to work on my HMS now, will this go against me? Will I not be taken seriously if I haven't seen physio's very much or been on painkillers for very long? I'm so glad I've got the ball rolling but also terrified that my head tutor will think I'm making it up.

Thanks in anticipation of your advice!

Allie.

[Finarda]

What I did when my work asked for documented evidence was got my doctor to write a two sentence letter stating that I had been diagnosed with EDS and that this affected my joints as well as some internal issues. That satisfied them - all they probably want is, like my work, some evidence to show that you really have a disability. This way you don't have to worry about tracking down a specific letter.

Fiona

[WinonaLemonade]

for my school i got a letter from my gp saying 'this is to confirm amy winona has hypermobility syndrome' and then i just provided them with information about hms and symptoms

[alice-emma-louise]

Thanks Fiona and WinonaLemonade,

I think I will just ring my doctors and ask for a little note then take some leaflets, I hope they have the rheumatologist's diagnosis on file so the receptionist can just print it off as I would hate to take up a whole appointment slot just to get the doctor to write a few lines. It's a nightmare seeing a doctor at my new GP's so I wouldn't like to take the slot from someone else!

Hopefully it should be enough, I just worry about it not being taken seriously, I really have no visible sign of the condition (I dont use splints, crutches, sticks or a wheelchair - lucky me!!) other than occasionally wearing tube grips and I have this annoying habit of never, ever showing my emotions to anyone so I always seem like I'm coping fine even when I'm not! I am meeting with my head tutor soon though so I think I will sit down and write all my symptoms and what I struggle with so that I am not tempted to say "well I'm fine really" and then regret it 3 months down the line, after all, I'm feeling pretty good after a long summer break to recuperate from last year so I forget what I suffered with last year.

Thanks for your advice!

A

[Sarah-Mary]

Hey Allie,
Hope I'm not too late but wanted to add my piece - Check what kind of letter your uni wants from your doctor. It dosen't have to be from the rheumy, your GP will do. My university wanted what's called a Senate letter as opposed to a bog-standard letter. It just says that I have HMS and suffer from pain in my joints.

Good plan to have it all sorted now, much better than regretting it when you get into the really heavy workload in the middle of term. Check out the other thread about claiming for disabled student's allowance as it can help a lot.

[alice-emma-louise]

Thanks Sarah-Mary,

I have been to the uni's disability support people and am applying for disability student support, the support woman is also emailing my department to ask them to be understanding if I miss lectures. I'm very stressed at the minute because the last 4 weeks have been chocka but I only have 2 more weeks on this timetable then switch to an easier one so just hanging on 'til then really. I have seen my doctor about evidence and she just filled in a slip that they usually give to school kids to explain when classes are missed due to appointments, hopefully it's enough, I will go and drop it in tomorrow. Other than that I'm just waiting for the ball to start rolling.

Thanks again to everyone for all the advice, I feel so pathetic asking for help from uni, I feel like I shouldn't get "privaleges" just because I have a condition so it helps to know that people on here understand!

Thanks

Ax

[Sarah-Mary]

You are NOT pathetic for asking for help from uni. At the end of the day, you have a medical condition which puts you at a disadvantage from other students, so why shouldn't you get help with it? It's no different from someone with dyslexia asking for help with their notes or whatever. I can completely sympathise with how you feel because I was the same in first year and as a consequence was considered a skiver who just didn't bother until I dared to chat about it. Better to get it sorted out so they know what's happening.

Hope you get on okay with the disability people, they should suggest things which can make your studies a bit easier, i.e understanding when you miss lectures, use of a computer, extra time in exams etc. (I use mine to take a wee stroll and stretch my fingers!) Don't be afraid to ask them about any ideas you have, I get a little trolley in the library to cart my massive biology books in now because I mentioned having problems.

[Julie]

Hi, I need a little help too.

Ive just gone back to uni since i got my HMS Diagnosis nearly 2 years ago, the course is great im absolutely loving it, the staff are lovely, but ive been there one month and my pain levels are going through the roof, and im subluxing a lot more than i was previously.

The main problem im having is that there is only stairs (which are quite steep, its an old listed building) to the work studio's which i will be needing to use for the next 2 years, and getting down them is hard enough but on some days i need to take my kit which includes fabric, toolbox, and a variety of other things, ive bought a wheeled bag so on flats i can get my stuff where its needed but im having to carry it up and down the stairs and im starting to get really bad shoulder pains, if my course mates see me struggling they offer to carry for me but i feel awful about it.

Im on the program board and this issue was mentioned, in connection to our breaks which are 20 mins and we have to go over to another building, by the time ive done the stairs gotten over to the other building got sat down its time to head back and the only response was we will get back to you, the fact that the stairs are a constant struggle doesnt seam to have gotten across

Any advice?

[Willo]

Sorry to hear you're struggling at the moment

Two lots of people you could contact directly at the university, firstly the Disability Rights/Student Welfare Officer and secondly the Student Union. Both of whom should be able to help find a solution for you

The solution to the dragging the kit about may well be a lockable box in the studio so you can store your kit in the place that it needs to be when you're finished with it.

Breaks is a little more tricky to get around if the lecturers aren't willing to budge on timescales - maybe alternative place to have a break?

Best of luck