Is this forever?!

Starburst Member Posts: 2,546
edited 29. Sep 2010, 12:01 in Living with Arthritis archive
This is mostly a rant, so I apologise in advance!

I don't know if this is forever. Am I ever going to feel less fatigued and in less pain? Don't get me wrong, I am much better than I was a year ago but I seem to have come to a stop. I can tolerate this pain and fatigue but it's seriously disrupting my life to the point where I can't decide which degree to apply for because of it. The one I want to apply for is intense and in the 2nd and 3rd years, it's 5 full days a week, not including study time. I can't manage that. The only way I can is if there is a huge improvement in my symptoms. Is that likely? Who knows?! Not me, not my rheumatologist....does anyone? So, I'm sitting here trying to decide which degree to choose and the main factor that's swaying me is my RA. If it gets worse, I'm screwed. If I gets better, than great but if it stays the same, will I be able to cope with a full time course? Do I resign myself to part time work forever in case I'm never feeling better than this? I'm already struggling at college because I'm so exhausted. I'm cutting down my work hours because I can't cope with both, so now I'm having to watch the pennies very carefully.

If I'm rational, I would say well who can predict how I'll feel in 2 years time? If I got a place, I wouldn't be starting till Sept 2011 and the first year isn't so pressurised. So, I have 2 years to find a miracle cure!

My mum (being the sensible person that she is..) says that maybe they haven't got my meds right. Methotrexate is helping but my rheumy wants me on 2 DMARDS. I've tried hydroxychloroquine for the 2nd time but it makes me faint. Maybe if I find another DMARD, it will be much better and my bloods, joints etc will improve.

I'm scared and everything feels overwhelming. :(:(:(:(


  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Sophie,

    Flower it comes and goes. You have times when your so much better and times when you are not. If they can control it its less likely to be bad.

    You just hang in there, a lot can happen to get you under control in 2 years so hang on to that thought. I so hope you will start to feel a bit better soon. (((( )))) and just remember it gets better. Cris x
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hi Princess

    Sorry to hear you are having a rough time at the moment.. as Cris says, it does come and go.

    Have you seen Cthornley's postings? She has managed to get three degrees, I think, whilst also having RA, so she might have some tips for you...

    Keep posting and let us know how you are doing.

    Marion x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hang on in there, I know you are only 22 and I really feel for you. It does have its peaks and troughs, the toughest lesson is learning your limits, and that if you overdo things, accepting the payback. We are all walking our various tightropes, and we all get the occasional wobble. DD
  • frogmorton
    frogmorton Member Posts: 28,505
    edited 30. Nov -1, 00:00
    Hi Princess

    I hope you are feeling more optomistic today?

    I reckon mum is right - there are loads of other DMARDs to try (as I found out last week!) and your meds can still be tweaked to improve things a bit.

    Maybe you WOULD be wise to consider the less intense course? Rather than possibly set yourself up to fail? I would certainly think that is a possible course of action?

    Can I say it? It's NOT fair is it?!!!


    Toni xx
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hi Princess
    I am sorry you are having such a rough time, and all these decisions to make.
    Like Cris and the others have said, it will come and go, the thing is trying to decide which degree you take, will have to be yours my love, you will know in your heart the right one.
    I wish you all the luck in the world, and with your attitude I am confident you will get there.
    Take care
    Barbara xxx
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00

    Yep, it is an absolute fecker having to 'accommodate' the symptoms of our illness.
    I had to give up my career in March this year as I got so bad however it was a blessing in disguise .... although my career was very well paid in monetary terms, I had no life outside it and I just know that the stress was worsening everything. I am now concentrating on finding the right meds for me and aiming for 2011 to get my high heels back on and have already decided I will start up my own Company.
    What I'm trying to say is that don't stress yourself out wondering what degree will be kinder to your body. You don't know what level your symptoms will be then. Go by your gut instinct of what your heart is telling you what you want to do. We have all found out just how strong characters we are by dealing with our lives alongwith our symptoms and if heck forbid you pick a degree which then turns out in a few year's time that your body cannot cope with ..... well, then take your path from there as things happen for a reason ESPECIALLY the horrid things that happen ..... the more horrid the better everything turns out in the end I find!

    Whatever happens you will find a way - ALWAYS!
    Keep smiling, Carol x :lol:
  • cthornley
    cthornley Member Posts: 627
    edited 30. Nov -1, 00:00
    Sounds like you are going through a rough patch :(
    Don't get too disheartened things will change, hopefully you will get through to a point that you become more comfortable even if that seems distant at this point.
    OK on the subject of degrees ....don’t give up now, as Marion rightly says I have 3 degrees, all of them taken since diagnosis and all very intensive (Architecture)
    I’m not going to lie to you it wasn’t easy but it wasn’t impossible either.
    I was diagnosed part way through my 1st year of university, 300miles away from my family and surrounded by people who wanted to go out every night dancing and do all-nighters in the studio. It was a miserable point in my life. However this was before the university disability service started at my uni (they set up the next year), my consultant told me I wouldn’t be able to cope and somebody suggested I should pack it all in. I am stubborn like that and set out to prove everybody wrong.
    I took some time out to sort out my meds a bit (not completely that took many years and still is getting tweaked dependent on circumstances) and let the uni disability service get up and running.
    They were fab – sorting out my disabled students allowance and assessment, sorting out support, assistance and equipment. Getting me longer deadlines and exams times so I could rest and people to help carry library books and help with model making for my finals.
    Some tutors were great, others appalling but the support of the service, my friends and a certain amount of stubbornness got me through.
    I did my first degree in 4 years instead of 3 (including the bit where I was trying to sort myself out) and then carried on like everybody else from there. I was the 1st person from my year to professionally qualify despite the original set back and I think in someways the RA just made me more driven on occasions than my peers.
    I would suggest that when you check out uni’s that you also check out their disability office, if you can get a good one of those then they should be able to smooth some of the setbacks out a bit for you.
    If you want to chat about it a bit more please don’t hesitate to message me as i can go on about it for hours but it is the end of my lunch break now
    Hope you don’t get too discouraged
  • chicara
    chicara Member Posts: 47
    edited 30. Nov -1, 00:00
    Hi Princess

    Like everyone has said we all tend to have times when we are better than others and sorting the right cocktail of meds can take some time. I like you had a quandary some years ago when I was offered an unconditional place at university. I knew I wouldn't cope full-time but did not have the finance to go part-time. Things have improved drastically with regards the help you can now get and as has been said it is well worth investigating what resources and help are available.

    Some years later my answer came in the form of the Open University which has allowed me to study pretty much at my own pace. The course tutors are very understanding and will give extensions for work when needed, you can apply for a disability grant to get extra help whilst studying at home or at residential schools if they are part of the course. If you are feeling up to it you can study a total of 120 points each year gaining a degree in 3 years or if like me you need to take things slower you can extend the length of time to suit your needs. Last year I went through a really bad patch and couldn't carry on with the course I had started, I was able to take interrupted study, which meant I took the rest of the year out but retained credit for the work I'd done up to that point, picking up the course this year from where I left off. I also cannot manage well with exams, the Open University give me an amanuensis to write up my answers and also allow me to sit my exams at home with scheduled rest breaks. I'm at the point of almost finishing my present course and then have one more to do to gain my degree in psychology. The other factor about studying with the OU is anyone on a low income gets there courses paid for, no big student debt at the end and you can even carry on working if you feel up to it. I realise the OU is not everyone's cup of tea, but it might be worth you considering it as a possible alternative depending on the degree you wish to study and how desperately you want the traditional brick uni life style. The OU has certainly been the best option for me, I certainly wouldn't have been able to do a degree any other way.

    Whatever you decide I wish you luck. I'm sure like many others on the forum, once you have made the decision of what you want to do and where you want to study, you will succeed one way or another.

    Best wishes

  • border
    border Member Posts: 94
    edited 30. Nov -1, 00:00
    As others have said there are good times as well as bad and somehow you've just got to get through the bad periods, perhaps take each day as it comes? Regarding degree study, I have just complete my first module for my master's and found it very interesting. I was able to take it at my own pace, but unfolrtunately I did not pace myself sufficinetly and ended up exhausted! Did not do much for a week!! OU is very flexible and there is loads of help if yhou wish to take advantage of it.
    Traditional uni is good as well, but perhaps more demanding physically i.e. getting to lectures etc.
    tomorrow is another day. Now I must get down to some reading for the next course!!
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you. Thank you. Thank you. Thank you. If I could read through the computer and hug each of you, I would! I really appreciate the time and care taken into the replies. I read every word and have taken the advice on board.

    I felt a bit stronger today and decided that I won't let this ruin what I really want to do. I spoke to my tutor at college and he said I can always defer a year or apply next year if I'm not quite ready.

    It really helps to know I'm alone. :oops: I feel a bit more positive and I'm trying to think of other options that DON'T involve me giving up the degree that I really want to do. xx