Yesterday morning after having a great nights sleep. I intended to make a start on deep cleaning my kitchen. I knew i wouldn't be able to do the whole lot in one go and i also knew i would need to pace as well. So i was very good and to be honest for me i was brilliant and i felt the old Sylvia was back and i also knew it probally wouldn't last and i enjoyed it while i could. I managed to clean half of the work tops and four cabinet fronts and thre drawers. I even stopped as i knew i could carry on and i knew the result would be agony today. Well of course i knew it wouldn't last,i have had about three hours sleep and my back is playing up this morning. I do feel bright enough,but my back is not good,we woill se how the day goes on. I hope all of you get the old you out sometimes.xxxxxx
Had a fantastic day yesterday........................... - NRAS
Had a fantastic day yesterday..............................
Morning 🙂 Well done 👏! We all need to take heed of your suggestion and 'get our old-selves out sometimes' ; what a great way of putting it 😇
With everything going on in our lives, it's too easy to get swamped by it all; we are still human after all! My husband will say at times "you're not the same girl I married." He doesn't mean it in a demeaning way; he says it's like I've 'had the stuffing knocked' out of me 🤔How true that is! The meds and the disease do/does change the way one behaves, but as you say: we mustn't forget who we are x
Hi Sylvi, your post is very welcome for me this morning. I had my first "unaided" night's sleep in I can't remember how long and woke pain practically free. Ironically much as it's amazing i also feel really low. I think it might be because I t reminds me of how life - and I -can be and the hope is somehow cruel. Or is that just me being miserable?
I know it only to well I decided to clean my house top to bottom yesterday resulting in being kept awake all night in agony with my shoulders and hands why do we do it. I hope you get a good sleep tonight xx
All that you did yesterday would have wiped me out completely darling.xxxx
I think I am still fighting this disease I am currently laid up in bed paying big time I am just not sure how I should be dealing with it, I just keep thinking I am 45 and shouldn't feel like this most of the time xx
Hi Sharonbernt
I too was diagnosed relatively young at 41,so fought it for a good 18 months before I finally gave in and took redundancy from a full time job that also involved 3 1/2 hrs travelling each day - both the nurse and consultant said that's why it hit me so hard when I did stop working..... because I'd fought so long beforehand,it had literally left me in a wheelchair for the best part of a year until my meds all came together at last - take my advice pls,and don't try and overdo things just because you think you shouldn't be like this so young,I did the same and ended up paying a huge price for it - I just couldn't get my head around how I could go from being a 6/7 day a week gym bunny with a full time job in London to not being able to get out of bed,or even sleep through the night!! Things will,and do get better,sometimes it takes a little longer to get the right meds for you,but it will happen eventually,and slowly you'll start to rebuild your life...ok,so maybe your goals would have changed by then (it took me forever to get my head around the fact I could no longer commit to the industry I'd been working in since leaving school at 15) but there is light at the end of the tunnel,just don't kill yourself trying to get there too quickly. Sorry if it sounds patronising,as that really isn't my intention,but just to give a little warning of how not accepting our conditions can cause further damage - I'm 43 now,and finally starting to get my life back on track,like I said,I have different goals than before,but at least I can finally see a day(god forbid,sometimes even a week) where I'm almost pain free and almost back to doing things I used to do.... I'm still aiming to get back in the gym,and I had hope given to me the other week when a lady in here had been running marathons for the past 9 years.... even though she'd had RA for 18 years (sorry,can't remember her name) but it was good to hear there is a very good chance of the old me appearing at some point,just need to finish dealing with this battle first 😊
Take care of yourself x
Thank you it is nice to hear of people that have felt the same way I guess I am just not excepting this disease I will definitely be taking your advise and will pace myself take care
Hi Sharonbernt
It does take a while to get your head around such a debilitating disease - infact,I just couldn't accept how I could do a gym class and be perfectly fine,but when I got to my boyfriends flat,I literally had to crawl the flight of stairs to his door on my hands and knees!! I was very lucky in the fact that I had Bupa medical cover from work,and as I was having such a hard time accepting what was happening to me,I ended up seeing a psychotherapist for a few sessions - it really did make all the difference in the way I saw myself and my 'new' life after that.... it helped me to concentrate on the things I could still do,rather than grieving for the things I couldn't,and it is a form of grief,because you're basically losing the life you had,and most of the plans that went with that life,and accepting a new future,and at the stage you're at,you're probably still all over the place with not having a clue about how you truly feel - it quite often changes on a daily,and sometimes even hourly basis. That's all completely normal,as I've learned from being on this forum - I used to have so many days where inside I was beating myself black and blue because I'd planned things for the day,but when waking up,realising that my plans weren't going to happen,I would almost kill myself to still try and get them done,then wonder why the next week or so would be absolute agony,and also a huge headf*ck too- it really does make you think like you're losing the plot,especially because to others,if you battle on,they just can't see anything wrong and just assume you're making a mountain out of a molehill!! You really do need to take time out to accept what's happening,and also that it's not your fault,there's nothing you could've done to prevent this from happening - that was the one thing that I couldn't figure out,as the only member of my extended family that had a really healthy lifestyle,and took care of themselves,yet I ended up in a wheelchair at 42!! That then leads to depression,like I said,it's something that plays with your mind so much that you really don't know which way is up most days,but it's the learning not to beat ourselves up,or not worrying about work,and the guilt that goes with it that really sends you into a tailspin - I eventually accepted that I had to retire almost twenty years earlier than planned,as even now that my disease is fairly under control,I still can't commit to wether I can get out of bed each day. I know that things will settle down eventually,as I'm still in the early stages of this journey(my meds only really started working mid Sep last year,then some lovely old man decided to rear end my stationery car on the 1st oct,which obv started a huge flare which I'm still trying to recover from. so since the start of 2014,I've probably only had a couple of months of my version of normality!!) but I've spoken with plenty of inspirational people on here,and I know that there is hope of some of the old me coming back at some point..... we're pretty lucky in that we have age on our side,which means even if it takes 5 years to get settled completely (a wild guess on timing there) we'll still be relatively young enough to do some of the things we had planned originally. Also,if you feel that you're getting bombarded with words or questions in your appointments that you don't fully understand,then refuse to leave until you have a good understanding of what's happening,and why - I found it helped me to know exactly which meds I'm taking,and the job it does.... some people are happy to just accept a prescription and walk out,but as the majority of these meds are toxic,I felt that I needed to completely understand them in order to understand how they would affect my body too,otherwise you're constantly confused afterwards,and taking meds for any number of unknown reasons.
Sorry if it looks like war and peace,but I'm just trying to help you get your head around things,and to advise the things that I found helpful to me. Regardless of anyone else/work,the main thing is to pace yourself,and to stop and recoup whenever you feel you need to - it really will make the difference between you spending a week in bed recovering or not!! 😊
Take things easy,and I wish you all the best on your road to stability
Nicki x
Thank you it's just hard not knowing how things will pan out I feel lazy most of the time still 💭 Think I should be full of energy and getting out with things I have the opportunity of work caring for my friends mum who is partially blind I am in turmoil as to whether this disease will stop me it is only three days a week for five hours per day and it will get me out I have put weight on due to not doing much and it is too easy to leave things until tomorrow I do feel like I need a kick up the butt but I worry that this disease will stop me and I will let my friend and her mum down I have been on many medications but my ra is not controlled at the moment thank you again for your advise I really appreciate it
Oh bless you.It must be Spring on its way. Cleaning frenzy yesterday means I feel weary today. Ho hum. Thank goodness Himself knows where we hide the Hoover.
Every once in a while I get a glimpse of that old me, usually after a good sleep. Tell your back to behave, and perhaps get some movement in today, too. Sometimes I think I hurt because my activity level is so sporadic. It's 3 am here, and I am possibly not as useful as I'd like to be, but I'll send you some Canadian hugs. From one variegated friend to another 
xxxxx
Good Girl! Treat yourself today to something special. Hugs.
PODIATRY APPOINTMENT YESTERDAY
