Hi to all hope all can find some pain free peace I've... - NRAS

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Hi to all hope all can find some pain free peace I've not been on for a while.

saffron07 profile image
18 Replies

I'm doing ok had to work really hard for balance and am still dealing with symptoms but have started walking lots with a stick to aid my support, started swimming to.

Not in remission, mornings are still bloody hard and the pain and swelling can be intense at times. But I am managing it and know more about my personal limitations.

Had my drugs review and asked Rhuemy what the thought about me wanting to come off mtx injectable and hydroxy. We had a frank discussion and she told me that the drugs will help RA which is an incurable often progressive disease from attacking my heart, liver, lungs etc.

My choice to continue was fairly conclusive based on this. They are not seeing me for another year!! But I can call them if in need to.

I'm carrying on at work on reduced hours and have multiple small adaption at work and home which help. I am lucky that I am in a better position than most the thing I really struggle with is fatigue but I have never been one to give up neither should you xx

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saffron07
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18 Replies
watson3 profile image
watson3

Sounds like a really positive approach to this disease. I've just retired yesterday. I have struggled do much over the last 18months. No respite from drug induced illnesses. So decided on the positive approach, to concentrate on my health, swimming and writing more poetry. With the aim to get fitter, loose weight. If possible find publisher for my collection of poems.

Good luck..... I like your positive approach.

carole

saffron07 profile image
saffron07 in reply towatson3

Thank you for kind positive words, It just helps to have this acceptance and approach x

Hi, you sound like you are doing well and trying so hard!!! It all comes down to managing this disease ourselves really (with help of good rheumy team and proper drugs) because RA as you say is with us for all of our lives!! I was lucky having a very good employer while working, they also let me work reduced hours and made some adaptations for me, even getting my own personal disabled parking space, wonderful care!! But eventually i had to take early retirement because i knew the time was right and i could no longer juggle work with home life, i was so totally exhausted my poor husband felt he had lost his wife, so we decided it was time for me to finish, and my, did i miss the lovely work colleagues and the happy atmosphere. As you say mornings are a challenge much worse when you are working and it must be very difficult for you. You are very brave to keep going, i admire you !!! Take care, lynda xx

saffron07 profile image
saffron07 in reply to

Thank you your story has many parallels, I know in time work will stop until then I keep on x

miss profile image
miss

Lovely to read your positive post. Think being positive with this disease is half the battle,xxx

saffron07 profile image
saffron07 in reply tomiss

Thank you your so right I really am trying very hard

watson3 profile image
watson3 in reply tomiss

I agree. It is hard always to be positive. But it bring with it so much hope.

Luthien66 profile image
Luthien66

I think your positive attitude will be an inspiration for many of us here. Like you I still work although at the mo I have some relief now with my new meds.

Thanks so much for your post. Xx

saffron07 profile image
saffron07 in reply toLuthien66

Thank you for your reply I really believe in what I'm saying and intend not to let this disease rule my life:-)

sylvi profile image
sylvi

You know what your doing and where your going and i applaud you for that. I hope you continue to be so positive. xxxx

saffron07 profile image
saffron07 in reply tosylvi

I have odd days now but that's normal in life on the whole I feel that I can not that I can't just realise my limits xx

allanah profile image
allanah

I too trying cope with my Ra by fighting it and try very hard to keep going. I particularly don't want to give up things I love to do , although mountain climbing is just a mon starter lol, but I drive up any hills I can instead!

I did take early retirement last year on the advice of everyone, I was working, sleeping, working and have been happier since I stopped although we all cried when I left!

So thanks for the lovely positive blog and keep going ! Xxxx

saffron07 profile image
saffron07 in reply toallanah

Work will carry on its one thing that does keep me going but the reduced hours really help. There may come a point when it goes as managing the fatigue is the one and my children need lots of energy. Xxx

allanah profile image
allanah in reply tosaffron07

Absolutely and I would have loved to have kept going but unfortunately it was my feet that let me down the most. Must be hard too with young kids, mine are grown up and help me!

saffron07 profile image
saffron07 in reply toallanah

I know it's hard but I need the money too so keep going and apply a can do attitude.thsts doesn't mean I don't feel down or tired at times but I just pull it all back and deal with it. The woe is me made me feel worse.xx

allanah profile image
allanah in reply tosaffron07

Absolutely and it's great to hear you keeping as upbeat and positive as you are! You keep going from strength to strength! Xx

Good to hear some positive thinking, I too joined the ranks of non-working last year. I was finding it incredibly hard to do my work and the strain of applying for my job each year was just too much, so I went under the last round of moves under Local Government. Since then I have not looked back and have a much better quality of life, as I will be reaching sixty soon I think I made the right decision for me.

Long may you continue to work and I take my hat off to you with working and looking after your children with this disease, keep up with your positive mood. Continue to rest when you can. xxx

saffron07 profile image
saffron07 in reply to

Thank you while I can I will I do try to get lots of rest in, drink lots if water and make myself walk every day.

Some days are difficult but it's about finding ways and managing. If I'm to tired I won't be pushed that's it, I'm a realist and know its nit going away go lets see how much I can do x

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