I think I periodically convince myself that I no longer have this wretched disease. I felt good and energetic this morning, so I did...well, everything. Now my hands are swollen and my knees are complaining and mostly I just feel like an idiot. *shakes head* No, I guess it's not that I'm stupid, so much as bloody-mindedly stubborn. I want to BE better, and sometimes I think I'm just not trying enough. The evening was topped off nicely by my mother-in-law telling me all the vitamins she takes and she's never in pain at all. It took all my willpower not to just say 'gosh it must be nice to be you'. Okay. Whinging over. Pain meds and early bed for me.
Bats
Written by
Azabat
To view profiles and participate in discussions please or .
I guess many of us have our share of "doing everything" on the odd days that we feel well enough - only to come crashing very soon.
What I find sort of incomprehensible (for lack of a witty term right now) is that those "everything" that makes me crash are not even all sexy nor glamorous, not exciting and not fun. Just some tasks that normal people do on autopilot, perhaps even drudgingly - vacuum the house, tidy up a bit, give the bathroom tiles a good scrub.
🙉
Yes, another "me too" here. Things are put onto a back burner when I don't have the energy or the grip strength, not forgotten about but filed under I'll Do That Later. I'm seriously thinking about getting someone to come in for a few of the heavier jobs (like bed changing and window cleaning) but I'm fortunate enough to have a bit of extra income so I can afford that. It's just that I've always considered it a luxury and it feels... wrong.
Hi Mo. It seems like my 'do it later file' is so much bigger than it used to be! Not that I've ever been a spectacular housekeeper, but less chaos means I function better. No glamour at all, but at least the tiles are clean!
Don't delay about getting someone in. I have a lady who comes in to make my bed as I can't put the pillowcases on because of the pains in my finger/knuckles. It's made the world of difference to me. Couldn't do without her now. She's worth every penny.
I love climbing into a lovely, clean smelling bed when she has been. Luxury!!
Bats darling i so feel for you darling. I was on my bed by six yesterday and when i had a bath i had to get hubby to help me out as i just didn't have the energy to get out on my own. My engine was empty and i just couldn't go on any more darling. I think if m-i-l said that to me i think i would tell her to find out about my diseases before she sprouts off like that. As long as your hubby supports you thats all that matters darling. Hugs from me darling.,xxxx
hugs back, Sylvi! Hubby is very supportive but erm...how to say it politely? A bit of a slob. The guys are slowly learning that I don't just want things clean, I NEED them clean. As for my m-i-l, I consider the source and leave be. It was just really tempting last night! xxx
I have had to let things go and bite my tongue a lot of the time. I know my hubby is doing the best he can,but he isn't a slob he is ex-army so they had to take care of things.xxx
Gosh, I know exactly how you feel. My nanna had this and, although being til to keep moving, she Sat in a chair, got big as a house, and had everyone wait on her whilst she whinged. I REFUSE to be like that. Conversely I go totally mad at being as active as possible and I also get caught out with fatigue and inflammation. I need to learn to moderate, but its not a word I usually use. 😉
Hi Sassy, I had to laugh, because your description of your nanna is exactly what I'm afraid I'll become! And moderate is not really a word I use well on myself. I'm terrific at applying it to anyone else!
I get this totally and, feel the same as you afterwards.
Like you say magician, doing everything means really doing what I was doing before I had this condition.
I also find that the majority of my friends don't understand and nor do the kids really so I often find myself saying yes to things and carrying on because I don't want to give in to the RA but it can put me back for days.
I'm hoping that one day I will learn but 3 years down the line and I haven't got there quite yet.
I hope you manage to rest and have that good day again soon.
I think we all do that Azabat. I'm afraid I do it far too often, I'm my own worst enemy - apart from this disease of course! Hope the pain eases soon. x
I am the same I work for myself cleaning and ironing services and when I'm
At home supposed to b resting I'm actually slogging away at the ironing board .... And last weekend I decided to start painting the fences etc in front and back garden so I started Friday evening and stopped Sunday evening and again Monday for a few hours in between the ironing orders .... Hence why I can no longer use my left hand and my carpal tunnel was so bad last night I was up wandering around as the pain and swelling was beyond belief .... Still bad so going to ask for the injection so I can carry on with the work I do ..... I try and fight this shitty disease daily and it's a struggle so I hope u r feeling better soon and chin up ... The weekend is nearly here ... Right off to be a scrubber lol lol
Good Lord, you make me tired just thinking about all that! I'm pretty sore and tired today, but I don't have much planned! Good luck with your day
Hi bat
In my early days I often wondered if it was all a mistake and I didn't have this disease, or I would wonder if you really still need meds. 22 years on i don't think like that any more. It takes a long time to learn about pacing years and years of trial and error. You are being normal and will learn from this eventually. Don't be hard on yourself just put it down to a learned lesson. I'm sure we all have to push ourselves a bit too far sometimes to have fun, get jobs done, feel alive, fit in. Our minds are in conflict with what our bodies can manage. The trick is to play the fun and make sure the next day is clear for the recovery ( or fun over as Allanah says).
Hi Kiki, hugs gratefully accepted I really still am in my early days; it won't be a year till November. I do question the diagnosis, and pick at it relentlessly. 'Yeah right,' I says to myself, 'prove it!'. So I do. I have an appointment today, but it's at my (very tidy) home. I want to do a zillion other things, but I don't think I can. Still, I don't believe I've been a normal anything before! *grin*
Oh, I know that one. If I'm working on a painting, I get very engrossed and can't/won't stop. 'Pacing' is an alienating concept to me. Rest well . Jo x
I think that once I get going momentum carries me along, and I see all the little things that have been niggling at me. Typing hurts today, so I'm thinking rest is probably a given! xx Mary
Hi bats I have just got Dragon software which once you master it I think will be a godsend I have cut typing down alot especially on emails'.You need a bit of patience to start but slowly coming together. X
Hi Bats I think we all do this at some point if we feel we can and I know we suffer but the feel good factor after is a great feeling. I had a spurt of cleaning the other day and cooked for my friends, well the one I have left who understands! as I am trying not to lose social contact. I had a great time and felt really proud which is ridiculous really. Did I suffer the next day and after oh yes but I think it was worth it xxx hope you feel better, keep up the fight ! Xx
Me too! I also have a very annoying mother who, when I'm not good, says helpful things like "well I was never like that at your age", and, when I am good, says helpful things like "well I wish I was, my knee's killing me". She really does take my breath away. Hope you're feeling better today x
That sounds like my mum in law. I have known her 23 years 22 of which I've had RD and she still won't accept I have it. She thinks we should suffer in silence. She once said to me I have no idea how painful her knee gets (OA).
People just don't "get it" unless you have RA! I no longer even mention being unwell to family and friends and when really unwell go to bed and not be available, I think we just have to look after ourselves cause no one else will. Wishing you well.
I'm now back in work but I have to work every other day as I don't think I could do a full week.
I'm still waiting to go to see the consultant. roll on the 23rd july then I may hopefully start to feel better instead of this constant flu feeling which work just laugh at.
Try and cut your day up into bit size pieces with plenty of rest in between. Easy said than done but it works.
9 years later and i still do it all but paying for it now 3 months on the sick because i think im wonder woman but im not dont we all wish we could click our fingers and it would be gone x
Totally agree with this! I think most of us are guilty of playing the "I refuse to be ill game" at times and consequentially having the harsh realisation that we do have to be a bit careful....don't you just love having to pace yourself....haha....another fave of mine is the "I don't want this anymore so I'll pretend I don't have it and it'll go away" game....that has the same results.....!!!! today i felt ok ish so stupidly sat cross legged (work with children) and had a round of "forget I need to be careful so try do normal things" and then couldn't get up and have since caused knee and hip issues to flare! Hence being awake at 4.30am! So please don't feel alone in this or be to hard on yourself thanks for sharing and take care x
I know exactly how you feel. No pains one day outta how many so you do as you've done, everything. And for what? More pain!!😖 enjoy the days you've got no pain, I've noticed they become fewer over the time, cos house work and mother in laws never go away. 😊
Yeah it's a difficult game to learn - pacing, can't seem to follow the rules.
If you're stupid - so am I - I think that we all do this at some point.
On Tuesday morning I felt almost "back to normal" and relatively pain free and did far too much because I could. 3 hours later I felt dreadful and could hardly move because of the pain in my legs. We never learn, do we? We must keep going or we'll seize up.
I'm a stubborn old bat .... And if I have a flare up I strap it up to a inch of its life and carry on cleaning / ironing whilst having a word with myself lol ...... Yeh it hurts and I struggle at night ....but this shit won't beat me ...I'm gonna kick its arse and take my body back .....steroids r my best friend .... Hope you guys can all stay positive and take care .... You can do it xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
It took all my willpower not to just say 'gosh it must be nice to be you'. Okay. Whinging over. Pain meds and early bed for me.
Why do only hands count - or is this just my hospital?
Is this a flare ?!
Trying to understand this disease
How long do I have to be like this
What do I do now
