9 days to go!!!!

Hi everyone!

I haven't been on for a while, I have read a few blogs, but haven't had the strength to put in words how I feel. I know we all have days where 'enough is enough' - but accepting the fact that I have RA has finally sunk in. I tried living in a bubble, doing and thinking and feeling how I thought I should now I have RA.

But I am RA, I live with it every second of everyday (as all of you do too). It painfully reminds me that I have changed and have to do things differently - and guess what - I am feeling happier about me, Oh I still cry, I get frustrated, I get angry - and then I realise that I am still breathing, I can still walk - very slowly and painfully at times; I can use my hands - in new ways that work for me and I have learnt that resting doesn't make me lazy, it makes me able to enjoy the evening with my family!

I have found the courage to go to night scholl where I am learning a new skill - Book keeping - Going back to school was scary and having set homework after 26 years made me giggle with glee!!

I enjoyed 6 weeks of summer being almost painfree, but since going back to work I am back to normal. I am in pain almost all day everyday and realise that I have to come first. I am not sure what my consultant will say - I have a lot to ask him - mainly 'why I am still in so much pain, why more joints are joining and why I am so totally exhausted?' The 24th October can't come quick enough!! Oh and I am finally getting a work place assessment done!!

And finally - I am still planning to do my walk on the 14th - in fact I am excited about it - so please pray for a dry day for me and I will let you know how I get on!

I know I say it everytime, but this network is my life line and I am so glad I joined!

Take care everyone, love Pen :)

10 Replies

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  • Pen i do hope you get your walk done in the dry as well. I have had ra for 9yrs now and it is only this year that i realised that i was actually ill as i have never given into it. It was a mind blowing thought that i am as good as i am going to be. So you are certainly not alone. We all have lots to give to others and this site is brilliant for that. I would be lost without this site as now i am a volunteer i feel useful again which after i got made redundant i felt that that was the end for me.

    Sylvi.xx

  • Thanks Sylvi,

    I have said to you before that you comments always make me smile, and cry sometimes - you give excellent advice and support - NRAS are very lucky to have you!!! as are we!!!!

    Hope you are ok-ish, take care

    Pen x

  • Hi Pen. I'm glad you are at least sounding so calm about having RA and are also planning to be assertive with your consultant soon. It is very hard to accept for all of us I think. And it doesn't help that the disease and drugs play mind games with us - giving us times of apparent remission (well me at any rate) so that just as we are resolved that we don't have it after all and it's all been a huge mistake or has gone away - woomph it comes back to roost with a vengeance! And I'm lucky - many people don't get the chance to be in denial because it's too destructive and ever present.

    I'm at huge mistake place again just now but I think I'd be happier if I just accepted it for once and for all - but I just can't while it keeps playing hide and seek! Tilda x

  • Thanks for replying!

    I am trying to be positive, its not easy and as much as I try, my little balck cloud pays me a visit now and then, and brings a whole load of pain with it!

    But a friend of mine had just been diagnosed with another chronic illness and we have spent a lot of time talking - she has helped me and she now understands what I have been going through - it's great to have someone close to talk to, cry with and build hope with!

    Take care x Pen

  • Hi Pen, good luck doing your walk!! I know you'll feel awesome mentally afterwards, you might need to sit down physically though heh :)

    Rach

  • Hi Rach!

    I am excited, but yes a bit aprehensive as to how I will feel - the good thing is that the walk has a gentle walk or a more challenging one - so I can see how I am the day and choose - I will send photos though! (plus there are many seats on route - so I might end up counting how many stops I take too!!!! LOL)

    Thanks!! Pen

  • Hi Pen, you sound as though your are in a much better place now and well done, i am very jealous lol!! Good luck on the walk and well done getting back to work, its a great achievement.

    Let us know how the walk goes and hope its a lovely dry day for you :)

    love Axx

  • Hi!

    I am in a good place - but I know I will have odd bad days too - but I will hopefully be strong enough to deal with them better.

    Work is work - 3 hours and 40 mins - no more and no less!

    They show me no compassion and I owe them nothing - it works for now!

    I certainly will blog about my walk, hope to put a pic or two on as well!

    Thanks x Pen

  • good luck Pen i will pray for dry weather for you! well done going back to night school i hope it all works out for you.

  • Thanks Treesha! :)

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