Hi all,
Just need to get this all out somewhere, I know there's nothing anybody can say or do but I need a place to rant on a bit. So, completely unable to do anything yesterday, not even eat. Not much better today but managed to get something down to accompany the drugs otherwise I know I'll be even worse.
So I've overdone it again this last week and I am so frustrated and angry with myself. I feel completely useless and fed up. I'm not even doing a quarter of what I used to and now it seems that's still too much, what am I supposed to do sit in a chair take up knitting (if I could) and wait for the inevitable?! Waking up at 5.30 every morning in agony and unable to move, everything hurts, I keep dropping stuff, tripping and stumbling all over the place, my garden is a mess, my business is going down the pan, the list goes on.
We're going up country tomorrow for my mother-in-law's 80th birthday celebration, she's much fitter and mobile than I am! I'm dreading it, the 3.5 hour journey, the 'how are you's', the running from one relative to another to fit them all in (both our families live in the same town) and generally putting a brave face on it all and being jolly.
So anybody got any good jokes?
Sara
x

Oh Sara, I so feel for you :( Sad days would be an understatement! I know where you are coming from, even after 23 years I still have periods like this, although not too often I have to say. I too have felt cruddy lately and it's so hard to get motivated when you just want to flop and do zilch.

I think first off your journey tomorrow. I can't travel for more than half hour an hour or so by car I just get too stiff and sore; I imagine it will be similar for you. Option 1, go by car but have very frequent (like 30/40 mins) stops of 15 minutes so you can get out and walk around. Make sure your seat is comfortable too! Alternatively, send OH in car and you get the train. I know it sounds daft and adds to the expensive but at least you can stretch your limbs so much more. Only snag is you may not be able to reserve seats at this late stage so you would be taking a chance. You can't do much about relly visiting, it's a needs must situation BUT once you've done it you can relax in the knowledge you won't have to do it again for a while! Job done (make it sound awful don't I?!)

"What am I supposed to do sit in a chair take up knitting?" Hmmm ... methinks ... yes! If it makes you sit and stop doing other stuff for a while!! Somehow I don't think that's going to work, is it? Make a list, which you can update daily, of all the 'jobs/tasks' that need doing, from gardening (break it down into more manageable bits like clean pots, weed small area, mow side lawn etc) to buying Uncle John's birthday card. Each day look at the list and decide what you feel is reasonable for that day depending how you feel (you can always do a few extra bits if you are okay), perhaps one big thing like the weekly shop (where you can pick up that birthday card!) and a couple of small things like remove the dust from the lounge window sill, write six Easter cards or whatever. Cross the stuff off the list as you go on and add things as necessary. Tell yourself you are only spending say from 10am -noon on tasks and stick to it. Although the list can look quite daunting at times it really gives you a boost to be able to cross things off. You are achieving something however small and you will hopefully see the positive side and learn to pace yourself.

Food ... get some things like packet soups with croutons, tubs of rice pudding, jelly, tinned fruit. Keep them for days when you really don't want to eat but know you must. So easy to boil a kettle and have a cup of soup (and a choccie biccie,but not together of course!)

Pain, I think you need to get the pain killers sorted because you shouldn't be suffering like this. Your GP should be able to organise this for you and there is so much available. You need some for day time use (non drowsy) and something that will work through the night. I often wake up early due to pain and have to stretch and mobilise the offending joints, not sure that is avoidable really as it probably means you have slept well up to that point but in so dong have become stiff.

Hope the journey and the visits go well and you are not in too much discomfort. Each hour spent is one hour less to do and then that's it for a while. Next week you deserve a rest

Lyn x

my O.T got me out of all that

by giving me a rotine and hand excises and showing me how to get in and out of bed chairs how to rest out .

showing me how to use pans to cook knifes etc making beds .

she is wonderfull and suffers her self with p.a and knows what i am talking about .

Try an O.T and also she gave me spints

Christine

Hi Sara.

Sorry to hear that you soo cheesed off. It is so frustrating when you set out to do bits
and pieces and then you suffer big time for doing sometimes the simpliest of tasks.
I had a bad day yesterday and cried a lot feeling very sorry for myself. Sun and warmth
today has brightened my day so feel better about the world today even though like you
STILL sufferring.

Lynn and Jean and others comments as always brilliant - so cannot add any more

Chin up

Rose

Hi Sara,

Sorry to hear you are suffering so much. I can well understand the frustration over suffering for doing "too much"". In the past it probably wouldn't have been too much at all!
Hope the weekend goes well for you and you cope with the journey. Have plenty of stops to stretch your legs and get a cuppa.

Love, Doreen xx

Hi Sara
Just to say I hope everything went ok yesterday and your not suffering too much now.. I know exactly how your feeling Im rubbish at the pacing yourself thing too, and constantly regretting doing things that I never even used to think about. I feel as though im able to do less and less and I hate it.
Anyway hope you had a good day and it wasnt too much of an ordeal, thinking of you Love Ceri xx

Quick update for anybody who's interested. So my GP is on a sabatical so had to see somebody else. He asked me what I was taking for the pain etc and replied 8 paracetamol pretty religiously and 150mg diclofenac a day but only when required. So he promptly refused to give me any further pain relief until I was taking all of these all the time.

I tried to have a bit of an argument about all my inflammation markers being down so perhaps the pain wasn't down to inflammation but more to do with the joint damage and not liking to take too much of the diclofenac because it makes me feel sick and shouldn't I really be reducing it anyway if the MTX is doing its job but hey I'm just the patient. According to him though you have to take themn for 7-10 days before they're really doing the job, seems a bit of a nonsense if you ask me, I've noticed vast reductions in swelling and inflammation after a couple of days.

So been taking the 150mg now for 5 days and boy do I feel sick, even the omeprazole, a packet of ginger biscuits with buckets of mint and chamomile tea won't do the trick, so I suppose I'll just have to go back. I think my GP is back now so I may get some more sense out of him. And after a hectic weekend, too many late nights and too much enjoying myself I resemble a pile of floppy, whining goo today. Still not learning!

Sara
x

Hi Sara,
If its any consolation I had a horrible flare from middle of Feb right through till a oouple of weeks ago (either that or the RA just got out of control again) and for 6 of those weeks took the 150mg of Diclofenac and the 8 paracetamol religously, the Diclofenac only makes me feel slightly sick but gives me awful diarhoea even with a good dose of omeprazole. I can't take co codamol, In the end the only thing that helped was a couple of steroid injections into the joint, plus upping the oral steroids to 15mg a day. So much for the full dose of Diclofenac, Like you I'm not convinced Diclofenac is the answer. Go back to the GP and shout again.
Hope you feel better soon.
Best wishes
Sheila

In answer to your question Eve, I can not take anti-inflammatories at all because I am allergic to them, and I don't think I have any more joint damage than if I had been taking them.
I think there are a few people on here who can't take the NSAIDs. As far as I know, they are for pain control, not to prevent joint damage.
Diclofenac is notorious for causing upset stomachs Sarah and you should ask your GP to prescribe a different NSAID if they are upsetting you. Hope you feel better soon.

Doreen xx