Constant Flare Ups and No Social Life.. Any tips?

RachH90
RachH90 Member Posts: 2
edited 12. Feb 2013, 18:47 in Young people's community
I was diagnosed with arthritis when I was 15 but in the last 8 months I have had constant flare ups in my right knee. I'm on methotrexate at the moment which doesnt seem to be helping and now I'm being refused steroid injections as I've had "too many."

Whilst I managed to finish my degree, pass my driving test and land myself a job whilst going through this has kept me going but I'm finding it incredibley difficult to maintain a social life. I get home from work and I just want to put my feet up and relax so I can rest it before work the next day.

I can't wear heels as my knee won't take it.. So going out is off the cards, but I find it embarassing hobbling out to even the cinema so I tend just to stay in on my own.

I'd really appreciate any tips people have for inflammation or just in general. I'm really stuck in a rut and my usual friends are finding it difficult to understand why I can go to work all day but not go to the pub on a weekend.

Comments

  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Would you consider hiring a wheelchair so your friends could wheel you to the pub or cinema? Then you could even wear heels!! :D

    You also really need to have an honest chat with your rheumy about how you are doing. We all need friends, and socialising is important.


    Could you have your friends round for an evening? Pizza and a DVD? If they see you making an effort, they may be prepared to meet you half way.

    You have done so well.
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
    Sorry you are having a rough time. Could you not wear flats to go out in? That is a good suggestion to invite your friends round. Have you heard of the Spoon Theory ( http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ ) and the Gorilla theory ( http://batsgirl.blogspot.co.uk/2008/04/gorilla-in-your-house.html ) ? These might help you explain to your friends how you feel. Or get them to read through some of the posts on here. Many of us are not able to wear heels any more or have to rest after work so we have the energy to go back the next day. Come back any time you need to chat or have a moan. We all do it from time to time.
  • victoryip
    victoryip Member Posts: 7
    edited 30. Nov -1, 00:00
    I feel your pain, I'm 16 and tbh, it's hard enough to maintain a decent social life without the arthritis! I've been house bound for the last few months when I flared pretty badly, and I know it feels kinda, embarrassing, waddling after your friends in public, but you don't need to do anything active to keep your friends, I've found just having a friend or two over once in a while is so much better than going out, I mean it's only logical, if you can't go to them, they should go to you, right?
  • iMystikz
    iMystikz Member Posts: 4
    edited 30. Nov -1, 00:00
    victoryip wrote:
    I feel your pain, I'm 16 and tbh, it's hard enough to maintain a decent social life without the arthritis! I've been house bound for the last few months when I flared pretty badly, and I know it feels kinda, embarrassing, waddling after your friends in public, but you don't need to do anything active to keep your friends, I've found just having a friend or two over once in a while is so much better than going out, I mean it's only logical, if you can't go to them, they should go to you, right?

    Right! :)
  • SJP93
    SJP93 Member Posts: 9
    edited 30. Nov -1, 00:00
    Im 19 and was diagnosed with osteoarthritis in my hip in October 2012. I suffered with CDH when I was younger and now this! I have been having constant flare ups just like yourself and am unable to do alot which means my social life is absolutely awful. I even find it difficult to sleep. I have been told to stay on anti inflammatory medication and pain reducing medication such as paracetamol, ibuprofen and codeine but nothing helps. I had a steroid injection in November which I was told would work within a week and have me walking properly but no! As well as this, I dont have a social life from work as I am unable to work due to the flare ups and the weight baring issue! It drags you down and can totally sympathise with you!

    The one thing I have learnt through this though due to the trouble I have had with the hospitals and consultants is that we have got to keep fighting for what is right for us and for our treatment otherwise because we are young they wont do anything! And their ridiculous excuse is that we would cost to much money!! Well we will with all the painkillers too! Keep your fight and dont give up till its solved and then we can get our social lives back and hopefully live with no flare ups :)
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
    Hiya,

    I understand your frustration, my lovely heels are buried in the bottom of my wardrobe trading places with comfy Doc Marten flats.

    I have kinda changed my interests really. My social life is a lot different now but the things I do I can do with a lot more ease than the stuff I used to do. When your struggling to do things you can't do it wastes energy that you could be using for another more fulfilling interest. Its real important to keep up your 'moral' and be positive. It's hard but try to think of something out of the box......... I took up bird watching!!! but each to their own lol

    When I go to a gig, I have to make sure I get seated tickets - something I never did before! But that way I can still do what my friends are doing. If I go to the pub or a club with my friends I have to get there early to get a seat - I changed my wardrobe too, as you say to 'keep warm'! Which is a pain as I have a lovely tattoo I like to show on my back which I can't now lol

    I did notice that my friends when I spoke to them liked to to other things too and were really great with wanting to still 'include' me in the get togethers.

    I hope everything works out well for you.

    Best wishes,

    Charleeh
  • OHPollard
    OHPollard Member Posts: 1
    edited 30. Nov -1, 00:00
    Hey everyone,

    Ok, so I am 18, was diagnosed with JA when I was 10. It changes your life massively, but you find ways of dealing with it as you get older. When I was 10 - 12 you don't really understand what you have, or how to fix it. You get very angry with yourself. I found that the most frustrating thing was not being able to play sport and be active. When all your friends go out and you can't face the embarrassment of an awkward limp and people making remarks, we've all been there. There was rarely a day in the last 8 years when I haven't noticed the pain in my hips and legs. I played every sport you could think of until I was diagnosed, but contact sports had to stop. I still managed cricket and tennis and golf, but cricket was too much last year and I had to stop. I'm on ibuprofen daily, etanercept weekly and methotrexate weekly both in injection form. It's hard to inject myself every week, but it has to be done.

    I found that exercise is the key.... Trust me. If you take anything from this post, it's this..... Don't remain inactive for long, it's an endless spiral. I spent MANY days unable to walk and home ridden, but it just got worse. Even if walking is tough and you are in so much pain, push through... Eventually it will ease. It is tough, there is no denying, but staying on your feet is the key, it doesn't have to be vigorous exercise. Unfortunately, the real world doesn't allow you to remain standing the whole day, especially when you get a job, but getting up as often as possible helps. I know you've heard it before but it's true. Last October in 2012 I went on a 30 day trek to Everest base camp in Nepal where we camped all day on hard mats and the conditions were terrible for inflammation. I didn't take medicine but the fix was that we walked all day, it flushes it out your system. My legs never felt better that trip. This solution allowed me to captain my cricket team for 3 years and now I'm at flight school in Oxford learning to become a pilot. Remember... No matter how terrible you feel, no matter how much pain you're in, pain is in the mind, push through, keep moving, and you can live your dream like anyone!

    I hope you all get through this and feel better, we're all learning with you :)

    Ollie
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
    Ollie!

    Thats brilliant that you did that... I want to climb Machu Picchu but my health puts me off.

    Truly inspirational!

    Best wishes

    Charleeh

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