1 Year on and still smiling!

Tomorrow marks the 1st anniversary of my RA diagnosis, and to be honest I am still struggling.

Being 23 and living alone with a diagnosis of RA has not been easy. One year ago I could not walk, get washed and dressed, drive or even pick up a cup without dropping it.

A year on my hands are still swollen and day to day life is still a struggle. I am very lucky I have the most amazing family who come help me with housework and cutting the grass!! I am a mental health nurse and have been supported very well at work but I continue to get comments about looking well and if i cant do something I still get "the look".

I have lost friends as they can not understand my illness believing I do not go visit them because I dont want to when in actual fact it is because I am unable to walk up the 4 flights of stairs to get to their flat.

I take approx 18 tablets a day and inject Cimzia every 2 weeks. My disease activity score is still high and I was informed remission is unlikely if I am lucky I may be able to get down to Medium activity.

But even though day to day life is hard and at times I cry and become frustrated I know I am lucky, RA was caught early enough and even though it is not the most positive outlook I am feeling positive I will not let this beat me.

So my advice to anyone is keep going and keep smiling, this has made me appreciate the life I have got so please please do not waste it, you can do this.

Kelly

5 Replies

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  • Hi Kelly.

    Lovely blogg and written with such positivity. Being positive and strong as certainly helped me cope over the last 17yrs

    Even though your still struggling you manage to be up beat about life, and this will certainly help you over the coming years.

    I'm glad you have a supportive family it means a lot, friends that don't hang around aren't worth having. If they were real friends they would instantly know you were ill and want to help.

    Your so right, we only have one life so we shouldn't waste it.

    There are worse things that could happen to us!

    Take care

    mand xx

  • A very moving blog you are not alone, true friends stay and understand. as mand says the ones that dont are good friends.. its sad that cimza isnt helping. they might consider a change?..

    Welcome to the site my name is alison.. I wont be on line much.. im awaiting computer repair and having a few days away.

    I have Just started pain management/ pyscology sessions, have heard some good things about them.. was wondering of you could get a referral? assuming they do them at your hospital x

  • Great blog, it is very difficult living a real life with RA. I don't think they can say you will never reach a form of remission, especially one year since diagnosis.

    I am glad you remain upbeat for the most part. Don't mind those that don't understand they will have their own problems, they just hav'nt met illness or pain. I don't waste time these days worrying about others not understanding, many people do and they are the ones that count.

    My friend said to me today, she is going to cook me some RA friendly meals to freeze, for after my operation. She is studying nutrition, but it was such a kind thought.

    I think my positivity has helped me over the last 3 years. Mind you I have had moments where it has deserted me, sort of nowish....

    xxxx G.

  • I think i speak for everyone when i say we are all proud of your attitude to this disease,wish we could all be like you and long may you continue to be upbeat about your ra. At least you give us others hope. As to those who don't understand there's 2 words for them and 2nd one is off. They don't understand and god help them if they find themselves in situation as they will come running to you for help. I also picked up that you would show them the mercy they didn't show you. Its their loss not yours.

    Well done Kelly,

    Sylvia. xx

  • I think that here we can all share some of what you've experienced, yet at the same time we know that everyone's is different. It might help to say that my ra took many years to respond, and that I can do things now I couldnt do last year for instance. Maybe it'll start going backwards and I'll have to deal with that too. It's in constant flux isn't it.

    I've also had people failing to understand stairs etc - wrote a blogette about an allotment party with inlaws - that's hard, and losing friends like that is difficult to deal with. I've tried to take the initiative by suggesting places we can go which I can manage.

    I hope it helps to know you're not alone, and that things wont stay the same, there are new treatments developing all the time too.

    I'm rambling sorry!

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