What keeps me going: When I think back how I was 1... - NRAS


31,141 members37,682 posts

What keeps me going


When I think back how I was 12 months ago couldn’t walk exctrutiating pain couldn’t turn in bed to how I am today I can walk feel sick slight pain swollen joints I think well I am better than I was don’t think I will ever feel 100% so I just have to accept it and get on with life as best I can that was the hardest thing for me accepting I had this terrible disiese but now I have and it’s up up up keep chins up everyone xx

8 Replies

I agree completely. I was the same as you 20 months ago. Couldnt move. There were mutterings about some sort of locked in syndrome. Im now probably the best I can be according to rheumy. At least I can do things and adapt my life accordingly. I cant work, but I can do sooo many things. As you say keep chin up. Thanks. 😊🌞😊🌞

It will get easier,. Once you have the mindset that you can actually get to a better place it's a much easier journey.

Hope your journey is a fast one .

Accepting this is chronic is hard...but hopefully there's still some improvement to come for you. Keep positive!

A big pat on the shoulders for you. I truly believe that this is the only attitude to have on the road to remission. We live with this condition, but we are in control of our lives. Congratulations.

Hi Elswick. Just reading how you was 12 months ago and can relate as this is how I am now. Carnt walk and can only sleep on my back in bed as I cannot turn over in bed. Due to see Rheumy on 3rd October. I was wondering what drugs, if any, you are taking to get you walking again and can you advise what help you have had. Would give anything to get out of this horrible situation I am in at the moment xxx

Elswick in reply to pip12

Hi ya they started me on sulfrazine which I was on for 5 weeks and it did not suit me no appetite pain went but quality of life was zero .then they put me on methotrexate tablets I was fine then they put me on methotrexate injections every Friday I inject I take folic acid went back to work phases return been back 2 weeks this week hands started swollen up so I see rheumatoid nurse Friday I will see what she advises but you have to speak up if your not right ask questions and don’t give in I no I hate this diese as much as everyone on this site but their is loads people kids worse off than me so you will get their but it may take a while hope I helped you tc big hug 🤗

pip12 in reply to Elswick

Hi Elswick. Sorry for the delay in replying but been going through the mill the last couple of days with the pain. I will have a good talk with the Rheumy when I go in October. Cannot go on like this, can hardly move never mind walk. Thanks for encouragement, hope you are feeling better xx

Hi Elswick

How you find yourself now is how I felt after coming through the shocking onslaught of disabling polyarthritis.

When I was suffering that awful, swelling and scary crying in the night pain where my fingers felt like someone had smashed them with rolling pins and I couldn't shut my mouth for two months due the inflammation in my jaw and steroid induced Diabetes and non stop diarrhoea because of the trials of traditional DMARDS. I thought no human can go on like this, couldn't wash couldn't walk couldn't carry a plate all the time with friends and family questioning what was going on , not willing to accept something very frightening was happening......

But then time goes on and drugs kick in and you get a semblance of normality back.

Like you I look back to 12 months ago and 12 months before that, the difference is unimaginable .

Battle on and as Elswick says in their opening post chin up!


You may also like...