Can anyone reassure me?!

littlemimmy
littlemimmy Member Posts: 111
Hi everyone,

I recently joined the forum and have found it to be a great source of information and support.

I was diagnosed with rheumatoid arthritis last year, and have just read in the European Fit for Work Report (2010) that one in three people with RA become disabled and that 40% leave work completely within five years of diagnosis.

This has terrified me; my career is only just starting and I can't imagine not working, both financially and emotionally.

I'm an Adult Education Tutor, and I'm hourly paid, which means I can be fairly flexible and cannot be forced to work evenings, etc. However, I'm having to work as many hours as I can because of our financial situation, and I don't see that changing any time soon.

Can anyone reassure me? I obviously know that lots of people do manage to work, but has anyone been able to keep up the same number of hours in the same job? I'd love to hear about it!

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hello littlemimmy

    I can see reading that report really has scared you, being at the start of your career and needing to earn too.

    There are many, many people who work and have arthritis. Yes people may change the work they do or the way they do their hours, but they are still able to work and earn.

    To turn the figures on their heads you could say 2 in 3 people with RA do not become disabled and 60% are still working 5 years after diagnosis.

    Until some forum members come along to give you their story I have attached this link and hope it helps:

    https://www.arthritiscare.org.uk/living-with-arthritis/working-with-arthritis

    If you feel it would help to talk to someone you can always call our helpline on 0808 800 4050

    Take care of yourself.

    Ellen
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    As Ellen points out turning the figures round is less scary! Two other things to bear in mind - the report also highlights the importance of early diagnosis and treatment, which is relevant when you consider that the report covered people of working age which will include those older people who haven't had either of those and so the disease has had a greater effect on them. You may have picked up on the forum that some of the members have problems that are not seen nearly so much these days due to medical advances in both diagnosis and drugs.
    The other thing is that the report appeared in 2010(so the data will be pre-2010), which in terms of diagnostics and drug development is quite a while ago, so the situation has likely improved even since then. Something else which will have moved on is technology to address difficulties due to disability, and that progress will continue, although I think that certain types of work will always eventually rule themselves out - manual or very physically active jobs being the obvious.
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    Thank you both so much for your replies and reassurances.

    Even after turning them around the figures still scare me, but I've been lucky enough to have been diagnosed early and to have been on methotrexate for several years before my diagnosis.

    Although my job is flexible, very little can be done to change my working conditions and I won't be able to afford to reduce my hours (in fact, I'm considering picking up a third role within my organisation, as I really need the money).

    I know I should be more positive and look to the future, especially with all the advances in medicine and technology. And I know that I'm about a million times luckier than so many people, too. There just seems to be so much to worry about at the moment.
  • frogmorton
    frogmorton Member Posts: 26,685
    edited 30. Nov -1, 00:00
    Aw Littlemimmy :(

    I can totally see why you feel scared when you need the money at the moment. I was exactly the same when my health took a turn for the worst.

    I was a single parent with two young kids.

    Luckily for me work was definitely do-able and my boss was fabulous and even slightly changed my role for me. This was despite surgery and other health - inconveniences.

    To be honest you seem to be the sort of person who won't give up easily and your job sounds reasonably flexible. Both good factors in your favour I should think.

    It is normal to have blips and worries though from time to time.

    I hope you feel less worried about the future soon ((()))

    Love

    Toni xxx
    Love

    Toni xxx
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    I know I should be more positive and look to the future, especially with all the advances in medicine and technology. And I know that I'm about a million times luckier than so many people, too. There just seems to be so much to worry about at the moment.
    It's natural to beat yourself up in this way, but it's worth getting out of that loop as far as possible, or at least reducing its circling. My sister once passed on something she was advised by a counsellor friend of hers which was to take 'should' and 'ought' out of our personal narrative as they achieve nothing positive and can make things worse.
    Yes, there are always people worse off than ourselves - but that doesn't actually reduce or remove the difficulties that we are experiencing, just makes us feel worse!
    I sympathise with your worry about the future - I am going through a bad patch with that at the moment - but some at least of it is stuff you can't do anything constructive about. You don't know for sure how the disease will progress and affect you, the wider, longer-term, world of work etc is very much an unknown, so best to acknowledge the worry and then as far as possible park it to one side(trying to remove such thoughts altogether is counter-productive - they feed off denial! -and so a waste of energy) while you get on with life now.
    Keep posting. Getting your worries out in the open rather than constantly circling the inside of your head does help in dealing with them.
    Now I need to get dressed and start following my own advice!
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    Thank you daffy2 and Toni, I really appreciate your replies and support.

    I can't imagine how you coped being a single parent Toni! I'm lucky that I don't have children (although that brings extra worries for the future, as I don't want the RA to make that decision for me).

    I do usually try not to compare myself to others and do the whole "others have it worse" thing, but those 'should' and 'ought' thoughts are hard to ignore. My GP suggested CBT to me last week, which increasingly seems like a good idea.

    daffy2, I'm sorry you're struggling with worries about the future too. Did you manage to get dressed though? I went to work this morning, and although I have tons to do, I'm trying to consider that enough of an achievement for today. I might manage to stick the washing machine on in a bit, if I can drag myself off the sofa!
  • frogmorton
    frogmorton Member Posts: 26,685
    edited 30. Nov -1, 00:00
    CBT is a great idea - this is a huge thing to take on board and we should take all the help we can get.

    As Daffy says keeping 'talking' on here is really helpful.

    Don't worry about me - it was tough at the time. My girls were 8 and 5 and I think young carers :?

    Things have moved on now and I have remarried to a great and supportive man.

    You take care of yourself

    Love

    Toni xxx
    Love

    Toni xxx
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    [quote=frogmorton post_id=628381 time=1490855283 user_id=10897
    Things have moved on now and I have remarried to a great and supportive man
    [/quote]

    That's so wonderful! That's cheered me up after a long and painful night.

    Now for a long and painful day at work....
  • DewdBro
    DewdBro Member Posts: 15
    edited 30. Nov -1, 00:00
    I call BS on those numbers. RA is a spectrum...it can be extremely debilitating or it can be a very mild nuisance. It's different for everyone. Change your diet to avoid inflammatory foods and get on meds immediately. You'll still likely have the occasional flare up but you should be fine.
  • andyswarbs
    andyswarbs Member Posts: 5
    edited 30. Nov -1, 00:00
    DewdBro wrote:
    Change your diet to avoid inflammatory foods and get on meds immediately.
    As Dewdbro says look at your foods.
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    DewdBro and andyswarbs, why do you think that I'm not on medication? Or that I don't know the first thing about my condition?! Did you even read my post?!

    As I said in a previous reply , I have actually been on methotrexate for almost six years, so I started taking it five years before I was diagnosed. Because I have been taking it for so long, it's currently doing a good job of keeping the RA under control.

    Regarding diet (which I didn't mention and didn't ask for your advice on), I have seropositive RA, so diet is unlikely to make a huge difference. I know that some people with seronegative RA claim that it can 'cure' them, and the medical guidance at the moment suggests that a Mediterranean diet is probably best for us, but beyond that there is absolutely no empirical evidence to suggest that certain foods will or won't help.
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    And breathe.....
    The means of transmitting the information might have been rather abrupt but I don't think either of those replies was intended to be critical or unhelpful littlemimmy. Not everyone reads all the posts from an individual before replying, especially if they appear over more than one board(the OP here doesn't mention what meds you are on), so information can be missed - or in my case even if read may be forgotten and if I'm in a hurry I don't go back to check...although in that case I do tend to flag up my uncertainty if I'm suggesting something.
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    I perhaps did overreact a little! Recent events in my life have made me a bit cynical and angry, and I'm starting to wonder whether it's changed the way I view things...
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    These things happen. You've got a lot to deal with, much of it stuff you can't directly get to grips with(under the general heading of what does the future hold). With any luck the CBT might help you to deal with the negative feelings and prevent them colouring your everyday interactions?

    Sorry just re-read that last sentence and realised it sounds a bit patronising - not intended I assure you!
  • littlemimmy
    littlemimmy Member Posts: 111
    edited 30. Nov -1, 00:00
    Thank you daffy2. Don't worry, it didn't sound patronising (although with me, who knows? My poor partner's walking around on egg shells!), and hopefully you're right. I'm on a waiting list, so won't be holding my breath.

    I'm away for a conference this week and then it's half term, so hopefully I'll be able to relax a little and try to stop worrying about everything.