Good days, bad days

I have had the most amazing week- no sickness, proper sleep, so much energy and joint movement so much better than it has been for at least a year. Have felt on top of the world and everybody knew it- new man in my life? Lost weight and now size 8? Nope- none of those although that would be really nice, no, finally a drug that works for me.....by Thursday felt I had been given my life back, was full of plans for the summer, overdid things a little - I think any of us would if we were blessed with a little window in time where we felt as if RA was a distant memory. Yesterday was tired and just not on par, dozed most of the day in the sunshine and wakened this morning to that horrible sickness, stiff swollen joints and needing pain meds as soon as I could.

So upset for a while, cried and raged, niavly thought the RA had gone into remission, that what we all dream of had been offered for a week then taken away again.

Now a few hours later, calmer and more rational, I can step back and say, well it worked for a week, now we have to start working towards being good for two weeks and so next month when I take my biologics, it will work for longer.

Thinking about this forum, and everyone who I have met( virtually) many brave people, patient and strong, are struggling with this disease every day and I thank you for sharing together

Craftygirl suggested a badge, I think we all deserve medals.

So for today, another easy day, just taking things easy and hope the sunshine comes back.

Have a wonderful peaceful Sunday whatever you are all doing

Katie x

15 Replies

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  • And you too Katie...x

  • Katie, congratulations on getting a new man in your life. Optamistic blog, good days with bad days. Well done.xxx

  • laughing Sylvi- no I have not got a new man, that would have been wonderful nor have i reached size 8- meant it tongue in cheek.

    no man would even look at me right now nor entertain the fact that i can be quite cantankerous at the moment

    hope all is well with you today

    xxx

  • ha ha , well mine looks at me and i am fat and stroppy !!!!! xxlol

  • And I am certain if I and a partner he would be divorcing me cos I have become a very stroppy mare x

  • some good news Katie c..i WOULDNT MIND if my size 14 stuff sill fitted comfortably.. two stone of steroid weight to shift!!.. grumpy and worse I CAN be ,, blame the steroids..

  • Summer- I left size 14 two months ago!! Size eight is my dream and totally agree with you- steroids are to blame without a shadow of a doubt. Away to get myself a bowl of ice cream

    Xx

  • Yes very upset how hungry the steroids make me. I lost two stone last year just as my RA was kicking up a gear and now as I can't walk far let alone speedily the weight has all piled back on :-(

    Hope your drugs work for longer next time!

    As for a new man I couldn't bear to share my bed with anyone right now, nope not even Harrison Ford (and I never thought I'd be saying that I can tell you! Lol) I am grumpy, bitchy, fat and frumpy. Who is this old lady with the walking stick I see in reflected in shop windows? Where's the fun, rushing round, haven't got time to stop a minute, me gone? I'm 48 not 98!

    Rant over...pass me a doughnut ;-)

    JoJo xx

  • JoJo, we share the same rant- sharing my packet of jammy doughnuts

    Katie x

  • How we enjoy those special moments when we just have a little relief from the pain. To feel painfree is worth more than all the money in the world. I so hope you have more good days. Take care hon

    Irene.( craftygal) xx

  • Tank you Irene, for the moment the pain is still there it is the swelling that has dissipated and making movement so much easier and the fact that I feel so well- I so hope you can have some special moments too xxx

  • Have faith Katie, and it's such early days. Sorry to hear you've had a blip. Don't be discouraged as I am sure it will change again for the better next month's shot. I had very very good reactions two days after starting weekly Enbrel nearly a month ago. Then three really good weeks. Then this last week I am flaring, as my fingers were in a major flare and so were my knees before starting the drug (I was delayed by hospital admin for some weeks in starting Enbrel which didn't help) and that hasn't gone away yet. "Pace Yourself" was the advice one of the healthcare at home nurses gave me re early days whilst waiting for the med to work especially if there are very sore joints, when she came to train me for my injection. I will try even more, especially with my joints being troublesome. I have had four weekly Enbrel shots now so another eight before I see the rheumy to discuss if it is for me or change. I came on here last week and got a bit despondent and was feeling weepy that I had had a blip. Lovely Tilda kindly said getting upset wouldn't help and made me feel much better (thank you xx) and I totally agree and hope you can keep calm and rested and hope to hear Soon you are back on track. Hugs to you.

    Julie xx

  • Hugs back to you- I did take your words to heart this past few days, faith and pacing. Not sure if I was listening to the pacing part tonight when I walked three miles! It is something I have not done for the best part of a year- felt so good. And yes have had to take pain meds tonight and am so so tired, actually trying to work out if I can go to bed at 9 tonight x

  • Thank you! I did get a little carried away myself last week when I was good. Went to a Whitesnake gig!! Had to! Also an NRAS meeting. Two night out in three days probably a bit ambitious too! xx

  • You did better than me - two out of three nights- I simply need bed come 9 o'clock . White snake- went to see them in Ingleston near Edinburgh airport when I was so much younger, at least 30 years ago. They were in a marquee, the music I appreciated much better from the bar which was across the other side of the field! Memories.. Early night for both of us I suspect xx

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