New start

Well it may have taken a mere 8 months but I think I am slowly approaching the long sought after place called 'acceptance'.

Having done everything from cry..swear..alienate.reject..scream..despair..and even laugh I realise that thinking about RA from dawn till dusk..and hating it..was slowly destroying me ..more than the blasted disease.

MY NAME IS JANE AND I HAVE R.A lol There..and I now have to move on with life with RA .

My stick is now a constant companion as are my wrist splints. My kitchen is littered with handy gadgets which provoke questioning looks (what do you do with that then?) My disabled badge is beginning to look a little worn and I even manage to say no when asked if I could organise the local fete/pick up so and so's kid/make a cake/entertain thirteen on friday night etc.If anything..RA has enabled me to be just a little bit selfish. I can now reasonably say..I am absolutely pooped..I have to rest.

Return to work is the next goal..slightly different role I expect but achievable I reckon. I can still have purpose in this altered life and I aim to make the most of it!

24 Replies

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  • RA Pride !!!!!! ( well pehaps not exactly,but kind of, if you know what I mean.....

    Making friends with who we are in the here and now has got to be a positve move forward........ I am really pleased for you- been going through the same identity change myself.........

    My Name is Fiona and I also have RA !

    xxxx

  • yes it is about stopping the self loathing!! I am beginning to accept that this is just me..wonky fingers and toes are just a part of it. lol

  • Positivity - good to hear ! RA does change your life and does make you scream, swear, laugh and cry (and feel sorry for yourself) and all the rest.

    Best of luck with your goal of returning to work and remain positive we are all with you !

    Judi (RA sufferer of 18 years)

  • Thank you Judi..I did feel very sorry for myself and on occasion still do ( we are allowed!) but I know that I was going through a grieving process and this is all part of it xx I do hope to get back to work but I also feel more accepting of the fact that I may not.

  • 8 months? It's taken me 3 years! I have, since joining HU, made lots of changes and have had the courage and support to ask for help, to say no, to 'give in' and to fight for what's right, all without feeling so blooming guilty. Thanks to RA I have a reason to take time out, to sleep in late, to enjoy the little things, to leave the chores! My standards have not dropped, my tolerance has just increased. I still struggle to thank the RA for things it has made me do rather than what it has taken away but it's always hard to give up habits of a life time ;) I'm happy to hear that you are moving forward and wish you lots of luck with your return to work. Keep us all posted xx

  • Thank you!! Guilt was a huge part of my anger and despair..still feel it but as my hubby says..we didn't ask for this disease and he loves me despite the RA. I too have gained support from this site and hope others do too, Take care x

  • Great news on your positivity and forward thinking. I wish you well with your return to work and hope you are able to find something suitable. Being in control of your life, your body and the disease goes a long way to life improvement. Yes you have RA, we all do, some of us have a future of ongoing surgery due to joint damage. However, RA should not be a focus in life. We can still live a full life, some of us with necessary adjustments, even with RA in tow ... it's just tagging along for the ride, keep it in check and don't let it take over! Still going strong after 23 years :) My name is Lyn (and RA isn't worth a mention!)

    All the best,

    Lyn x

  • Exactly Lyn,That's when I realised RA was taking over.....every thought was RA but now I am beginning to put it away for parts of the day . Sometimes difficult when I am still at the hospital every week and meds are still not sorted but I will get there!!

  • I've had RA for about ten years, and like my mum before me, I still wake up thinking I'll just run round the block, or climb a ladder or something. I think there is some acceptance, and this website/ blogs etc is very helpful because you do feel part of a community, there are people who are like you (+ -) severity of symptoms, knowledge of the disease. But I do think that its uneven, like RA itself. Perhaps the challenge is to manage it through our everyday lives?

  • I agree with you Cathie..my acceptance means that on good days I do what I can and on bad days I do less...it doesn't mean I am 'better' it just means I am learning to live with RA and manage it not just on a daily basis but sometimes on an hourly basis lol x

  • My name is Alex and I have RA. And I want whatever you are on. Ax

  • Alex you made me laugh! The truth is I still get very bad days but I suppose rather than fighting it I now just accept it and have a duvet day if I need it. I don't always get it right however and an active Saturday can leave me flaked out till Wednesday but I am less angry about that now. I suppose that is it..I am less angry. So consequently I am more calm. I also know that I am a nicer person to be around if I do that..angry resentful me was not a picnic in the park lol and even if my loved ones have to do more on the bad days they don't mind because I am able to let it ride a bit more. Take care and be good to yourself x

  • Hi Lulu

    I am Sheila had RA for 9 years and obviously wish I hadn't. Your philosophy and great positive attitude is wonderful. You're right, it actually does take over your life if you let it. Do you know, I think you are my new inspiration. From now on I am going to try and change the way I think about my RA. Thank you so much. You can now really enjoy your day knowing you have helped someone....me!

    Love Sheila x

  • Oh Sheila thank you for that response!! It HAS made my day..I really think it helps to be positive but I know very well how hard that is. The next time I cannot get out of bed it will be harder to be positive but there's a whole life to live..it really isn't a rehearsal and I don't want to look back and regret wasting what time I have x Have a great day xx

  • That's the nice thing about this site, Sheila and Lulu, there's a community of feeling about this. And it can be very isolating. Superficially we dont look that different, so people make assumptions.

  • Hi Lulu, having had RA 17 years have found it very difficult to deal with, just when I think I've accepted what I have and my life seems to get better I was getting knocked back again with yet another operation and a failed drug, making me feel a failure and back to square one. I just had total hatred for the disease that had destroyed my body and my life.

    I think now though with the help of others with RA (mainly talking to people on here) I don't feel so alone and I finely realised I can still have a life with RA, perhaps not the one I had hoped, but that's not important now. I have to make the most of what I can do rather than focusing on what I can't.

    I'm happy for you, your at a milestone in your life that's important for your future, because the way you feel and what you do as an effect on the rest of your life.

    Mandy xx

  • Thank you Mandy..you are right. I just know that my life isn't over at 43. It isn't what I hoped for or expected for me or my family but I can still have a good life. When I look back on my 20 year marriage it is a good one..not because every day was a breeze..but because we have had some terrible days but the good out ruled the bad and we are still strong..that's how I feel about my RA..rough days don't make my life bad as a whole because the overall impression of my life will hopefully be happy.

  • Hi Lulul. I have just been reading your blog and the replies. All brilliant and yes, inspiring too. Some of the comments made me laugh out loud.:-)

    I had my first OT appointment today and came away with a lovely pair of wrist and thumb splits (beige Lyn NOT blue! but never mind) and she was so helpful. And the drive home was so much easier with the splints.

    Accepting and take control ofthe RA and not the other way round..

    Take care Julie xx

  • Hi Lulu, Great blog, hard to accept this won't ever go away. I am just home from work, went for a short nap, and now feel a bit better. Hope you get some good meds soon, sounds like this hit you hard and fast as it did most people on this site. I work in a big company and I have had to ask for every little bit of help. I have given up trying to explain my RA - nobody but us understands how really crap it is! My poor wrist is aching this eve. I have to say, most of the time I am Ok (being positive) I still don't believe , I am ever going to be disabled. Maybe I hav'nt accepted this yet:(

  • I don't think any of us like to accept we are disabled. I like to think that my badge/stick/splints..whatever it maybe..ENABLE me to live life. I realise that I look different now but the people who love me don't give a monkey's fart so why should I?! I still get frustrated at people's ignorance and sometimes I just shake my head because I can't be bothered to explain..other days I am more patient and give the whole blurb. We can't let poorly educated ignorant and sometimes plain stupid people and their comments upset us because then the RA wins again. and we end up with another crappy day. Like I said I have very bad days like everyone else..I am not 'cured' I am approaching biologics even 8 months from diagnosis as my RA is aggressive and unstable but a bit of positivity has to help!! Look after yourself and love your splints!!!

  • Hi Gina

    maybe you will be ok and controlled on your meds so that it does not progress too aggressively. Hope so

    x

  • Ah don't mind me just having bad day! am usually v positive, sometimes it just hits you 'the PLOMs' poor little ole mes. xxx

  • You don't have anything to apologise for..we all get days like that.That's why this site is so good. Hope you are having a better day today xxx

  • moving towards reluctant acceptance.. can beat this thing and its tiring me out today is rest day

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