Ok i've just done something that i hate myslelf for and it is getting all too common for me recently....
My step kids have just gone after their usual 'every other weekend stay' and i set about my usual routine of having a massive clean (why do small people make such big messes??). I put Aretha RESPECT on loud and set to with my flash... while is dancing around my lounge, singing at the top of my voice R>E>S>P>E>C>T and wipeing the coffee table (thinking i am actually really enjoying myself), my mind suddenley said " Be careful dancing Ella what if you fall or break a bone due to your disfigured feet" and immediately i turned off the music, quickly finished cleaning and continued to remind myself of all the reasons at the moment why i shouldn't have fun.
I was just about to go and have a rest (which i will still do anyway as kids can be knackering when i thought bol***ks i'm going to ask my friends if they ever do this same sort of thing to themselves. Do you ever stop yourself having fun or a nice time because you get anxious that you might hurt yourselves, or does any of your minds create needless anxieties when you have something nice planned? E.G. you're planning to go out for dinner with a girl friend or hubby etc and you've been fine all day but just as you're about to go get ready you convince yourself that you're too painful or you're planning a chilled out day at home alone and you start thinking about all that could go wrong??
Then there is the whole.. I have tummy ache so i convince myself that it is something terrible and it will end up with me being really ill/A&E/surgery... My therapist thinks that is because a few aches turned out to be Arthritis and did get worse so i presume that will happen with everything...???
I annoy myself i mean it's not as if we don't have enough to REALLY worry about and then my mind has to go and create more. It's as if i don't think i deserve to do nice things.
Ok so now you all think i am mad i will stop
Ella xx
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Ella32
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Hi Ella, I suppose we have all felt like that at some time or other,but I still dance around the room if there is some good music on the radio etc. I am exhausted after a couple of minutes and the dog thinks its hilarious! I still go out with friends even if I feel rough as I think we do have to make the effort otherwise we would be staring at 4 walls all the time and going quietly mad.
Everyone gets aches and pains from time to time - it is not necessarily anything to worry about. I get terrible stomach ache but usually when there have been onions in a dish as I can't cope with onions - they do make me really ill. I get pains in my chest and wonder if the Angina is starting up again then I realise it is indigestion from the donut I scoffed down with my coffee!
I met someone today who put it all into perspective. She came to our Rembrance Day service in her wheelchair. She has had RA for many years and her feet, and hands are crippled up with it. She cannot walk as her feet are so bad and she cannot use her hands very well,. But she was so cheerful and happy and chatted to everyone whether she knew them or not. I know she is in terrible pain most of the time although she has just had her drugs "upped" and is feeling better today.
It made me realise how "lucky" I am that although I have acute RA it came on so much later with me that my hands and feet are unlikely to suffer such awful disfigurement.
So enjoy each day as it comes. If you have a bad day, say to yourself, this will pass and I will feel better tomorrow. Have a dance, enjoy your meal out, do something equally silly. My friend and I went and tried on those very high stilleto shoes in the shop recently. Neither of us could walk in them and when we tried to stand up we fell about laughing. But we enjoyed ourselves and went off to the pub and had a glass of champagne each (My big pick me up).
My sentiments exactly LL, i can't dance now only swinging my feet to and fro. I went out last night knowing i would be rough today,we can't win whatever we do,but we can buck the disease by having a good sing song,so turn aretha on and be loud and proud.
Personally I worry about tomorrow ... tomorrow. Some say you should plan for tomorrow, this is true for some things but not in this case.
When I started to read your blog about kids gone for the day, music blasting out and having a boogie I had a smile on my face ... then it went downhill!
Was the bit where your mind started to take control ... when infact you should have continued to boogie oogie (thinking i am actually really enjoying myself) was your words...
I have different music for different moods, I have no music for different pains I just dont play any, but when not in pain ... i blast it out, depending on the mood ... so the moral of the story is grab it whilst you can
Pete i agree with you on that one,i've got lots of music,but at the moment i can't put it on.I also have problems reading,it takes too much concentraction for me and i used to love reading even if its romance books,but something as trivial as that i can't read it.
For sure, and just a thought ... just replace "grab" with ..
Play it whilst you can
Read it whilst you can
Infact, whatever tickles your fancy ... whilst you can ....
HI Ella
Don't be too hard on yourself. I do the opposite, thinking that if i don't do it, i am being lazy/letting people down... so i keep going until i can't move and am so crabbit and tired and sore and pissed off with the world.
Perhaps you and i are spending far too much time in our heads thinking about stupid things and we should take the advice of the others and live in the moment doing what we can and not overdoing it.
Hi Ella, I know what you mean. I went out Friday night although I really didn't feel like it. I was sooooo tired after working all week and it was cold and pouring with rain. It was something I had agreed to many weeks ago and so I don't like letting people down so I went and I wore high heels. Today I have pain in my ankles and the ache is reaching right up to my hips but I am glad I went otherwise I would never do anything. I think sometimes you just need to grab a little fun wherever you can and sod the consequences!xxx
Hi Ella and everyone, I say do what makes you feel good and worry about it later if you need to...
The day may come when the choice is taken away and you can't dance around while cleaning or having a dance on a night out (the choice was taken away from me but I still try when I feel well enough).
So enjoy, have what little fun you can while you can and tell that voice.....
reading Ella's post has just reminded me of a concert I went to see recently.
The backdrop to it was a very touching and atmospheric collage of clips and pics of african landscapes and the occasional superimposed piece of writing... one of which said: "music is for healing all that you don't see" !!
I stand by it ! Enjoy your music, singing and dancing Ella
Fede XX
Yes seize the day Ella - you never know what's round the corner so it's not worth worrying too much about! TTx
"Carpe Deum" exactly. or "Just for Today...." I will dance or sing, Just for Me!
I have had alot of my life taken away, but I can't dwell on "what if" 'cuz that can't change anything. So as the others here, we do what we can, agree to go out with friends, take your meds first, then have a nice evening. Maybe have even a great evening. I find, while I am laughing and joking with friends, I am not feeling much pain. I know it will be back by the time I get back home, but for the moment, relax, enjoy.
There is a song, from a few years back, written to a daughter, with the line:..." and if you get the chance to dance, I hope you dance" Wonderful, inspiring song.
If you find yourself feeling alone for too long, or haven't done anything for fun, pick up the phone and invite a friend or two or three to meet for coffee, or lunch etc.They will thank you for it and will say "we should do this more often"
Hi Ella, i do the same as you all the time, i am in constant pain anyway, i dont go out with my husband anymore, never do anything with my children, JUST INCASE i get more ill than i already an,i dont want to end up in A and E again, everytime it happens i get admitted for 3/4 days being pumped full of Morphine that doesnt work, i am so tired of it all, i just want my life back, i am sure my kids and hubby dont want me around anymore as i am no fun and end up shouting at them all on a regular basis. Seen my consultant on Monday and hes is a pratt of the highest order, he said if the tablets are not working then stop taking them, he said its that simple, no alternatives to be had, MTX makes my mouth a mess, Sulfazalzine causes me to be anxious and down in the dumps and gives me the most disgusting taste in my mouth, i can hardly breath after walking a short distance,iput it down to weihht gain after stopping smoking, apparently not, , hydroxichloraquin is ok, to top it all i have been getting these really sharp pains above my belly button to the left side, GP said it medication upsetting my tummy, please note its around my belly button, i just dont know whrre to go from here, no blood tests either for over 5 mths, Consultant says i dont need them.
Happiness is not a lack of suffering. We can be in pain and be restricted a lot of the time, but still have lots of times where we are enjoying ourselves. It's about creating a life worth living and if you wait until everything is perfect before you give yourself permission to be happy you will wait forever.
I had a terrible bus journey on Friday, which meant my knees were dreadful on Saturday and I couldn't go out as planned, but I am determined that this weekend I am going out whatever my knees are like because I can't plan my life around my shoddy knees and the shoddy buses.
You do appear to have symptoms of anxiety. I get it when I think people are getting too close. I am worried they might knock me over or touch my knees when they are sore. It's not surprising that you get worried that any symptoms of illness could turn out to be something bad. Have you tried 'putting a timer on it' so if your stomach is bad say 'right if it's still bad in 24hrs I will go to the chemist, if it's bad in 48hrs I will make a GP appointment.'
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when i thought bol***ks i'm going to ask my friends if they ever do this same sort of thing to themselves. Do you ever stop yourself having fun or a nice time because you get anxious that you might hurt yourselves, or does any of your minds create needless anxieties when you have something nice planned? E.G. you're planning to go out for dinner with a girl friend or hubby etc and you've been fine all day but just as you're about to go get ready you convince yourself that you're too painful or you're planning a chilled out day at home alone and you start thinking about all that could go wrong?? 
Do you have periodontal disease too?
How do you live/cope with RA? 
Do you ever have trouble with childproof caps?
How poorly do you need to be to get PIP?
Don't feel crap all the time do you?
