My Story

Hi. I thought that as I read all your blogs daily and have had a couple of my questions answered, I ought to tell you about myself. I live on my own, have done for the last twenty years. On the whole I love it, but you can get used to keeping your disease to yourself.I was working until the end of 2010 when I took early retirement. I worked as a room steward and guide at Hever Castle in Kent, but after trying for so many years to try and hide my afflictions it becme too much, especially the stairs and in particular the spiral stairs!!

I tried to do the best I could but it was all too much. I loved the job and if it weren't for the damn knees I could probably have carried on a few more years. Although my colleagues were always sympathetic I could tell they all thought it was just arthritis that they probably had. You do get fed up with explaining that RA is not the same thing and that it will never be cured (until that blessed time when it comes along).

When I first had the symptons of RA I too thought ,"Oh I'm getting old, all these aches and pains". I dosed myself up with Ibuprofen and managed to carry on somehow for some years, taking days off sick and holidays when I couldn't get up or carry on. My family were not very sympathetic either, probably because they didn't live with me thay never saw the worst effects, and usually got comments "come on old girl". They didn't see me crying my eyes out every day when the pain was so great I couldn't do a thing!

At the end of November 2010 I just had had enough I couldn,t take the pain anymore so saw my GP. He immediately told me it seemed to be RA and put me on Naproxen which was wonderful for the pain. Really worked well. Saw a consultant later who diagnosed it officially and gave me a steroid shot which once it worked was wonderful for about 6 weeks. Now on Methotrexate 15mgs which I've been taking for 5 weeks now, alongside the Naproxen twice daily.

Don't think I'm feeling the benefits yet but certainly don't feel any worse.

I have to say that all through my doctors and consultants have been marvellous and very speedy, so nothing to complain about really.

Thank you for letting me tell my story.

Carolyn

11 Replies

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  • Caroline,it was lovely to hear your story,but its sad that you can no longer work.Hever castle is a lovely place and having been there myself know what a place it is. You will get easier as the drugs start to work. Have you looked at bwhat benefits are available to you. Go to the dwp and see what they can do to help you finacially.

    Hope to hear more from you in the coming weeks.

    Sylvi.xx

  • Hi Carolyn - thanks for telling us your story and welcome to you (as a new blogger at any rate!). You must have stamina to put up with pain for all that time before going to the doctor - hope the Methotrexate works for you soon.

    I've been on it for about 15 weeks now too. I've only just got back up to 15mgs though because the first time it sent my liver tests up so I had to move back to a lower dose. About to go to the GP for my test results so am really crossing anything I can that it will be fine this time and I can stay on 15mgs. I think it is working pretty well for me but I do combine it with as much exercise as I can face daily and so far I've not had too much pain for the past month. My only fear is that the RA finds a way to get round the 15mgs and I need to go up a dose or two or introduce another DMARD soon to prevent permanent damage being done.

    Keep posting and good luck with the MTX! TTx

  • Hi Carolyn, thanks for sharing your story with us. I've found the members of this site to be lovely and caring, it really helps to be able to talk to people who understand. Rheumatoid arthritis is so misunderstood by people who have no experience of it. I confess I thought arthritis was just achey old joints before I started showing symptoms of ra. I wish you well on your treatment and look forward to hearing how you get on x

  • Hello carolyn thanks for telling us your story it lovely to know about each other ( not just the RA part ). Tricia xxx

  • Hello Carolyn

    Welcome to this wonderful site,I havnt been coming here very long myself and I Find it a warm friendly place to visit.The people are so Brilliant,you dont feel alone,

    If you have a problem Share it !!!

    Good Luck Pat X

  • Thanks to you all for such lovely comments. As you all say it's a lovely feeling to share, and I'll keep in touch.

    Carolyn

  • I love the gardens of Hever Castle, so I can understand you must be sad to leave it behind. But they'll be lots of good things ahead too once you've got your RA under control. I've found that cutting down on work has really helped my health as I can look after myself better. 5 weeks is still early for the magic effects of MTX to appear, so really hope you feel better soon. Polly

  • Hi Carolyn,

    Nice to meet you but sorry it's because you are another RA sufferer.

    Although enjoyable I bet it was cold going round an old castle all day. I worked in porta cabins on construction sites and that was bad enough. (Penultimate site was the Channel Tunnel Rail Link at Gravesend).

    I've not worked for the past 4 years, the first 2 were because I was made redundant and couldn't find another job (not suprising as I was only 2 years off of retirement plus visible signs of RA) and the past 2 because of retirement.

    You dont say if you are enjoying your retirement? I do hope so.

    Hopefully your medication will get sorted soon especially as it's almost summer (we hope).

    All the best,

    Judi

  • It's funny to think that I actually might have seen or even have spoken to some of you if you have visited Hever Castle over the last 15 years that I worked there. Wierd or what?

    Many thanks again for your kind thoughts.

  • Hi Carolyn

    Welcome to the site.

    Hope you experience the benefits of mtx soon

    Take care

    Sci x

  • Hi Carolyn, welcome and thanks for sharing your experiences.

    Tiger x

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