I hate whinging about this stupid disease because i know it wont do any good, but it makes me feel a bit better so here goes anyway! I just feel like i dont know where im supposed to be going anymore, i used to have a life now ive to work everything around this. Went out for the day yesterday, woke up thinking i shouldnt really but then thought what the hell....im suffering now!! My meds clearly arent working as im almost as bad as i was before i first saw consultant 18 months ago. I had an appointment to see them at the end of april but they cancelled last minute and pushed it back so its now in a fortnight.
Im not helping myself by thinking about all the things i used to do but my family (apart from good old mum) like to remind me by constantly saying 'well you used to be able to do it so whats changed?' I have to laugh because if i didnt i think id be spending the rest of my stiff painful years at her majestys pleasure......
I long to be working but have no idea what im capable of anymore (my consultant seems to think i can get back to hairdressing??) and i long to be the always on the go person i used to be but i know thats not possible now. I just wish there was a fariy godmother with a magic wand somewhere, and yes if i find her i'll send her on to you!
Anyway on a brighter note the weather is lovely, the sun is out the birds are singing so i might just take myself off for a walk.......well maybe just a cup of tea in the garden......
Sending best wishes to you all!!
Max xx
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Max i haven't worked for 2 1/2 yrs now and i still don't know if i will ever be able to work again. its depressing isn't it. I'm going into hospital on thursday to have my knee redone and i can't think further than that at the moment. I don't know whether i will ever walk without a stick again. I have been through what your describing about work and if you will ever do any again. The main thing to concentrate on at the moment is recovery from the op and if your not happy with it go and see your gp or nurse,they will soon tell you if it needs attention.
I never expected when i married my husband that he would be the one looking after me,as he's 12yrs older than me. It is still very hard for me and i still get very frustrated i can tell you. The having to have breaks between gardening is the one that gets me the most,its a lovely day outside and i have to keep coming in to sit down and rest.
So max, your not alone in this. Take care sylvi.xx
Max, All of us here have been where you are now. It is a terribley confusing time of life, when You just don't know what lies ahead, if anything.
But, try to live one day at a time, and slowly things will come together and you will find your new routine, daily life can be fulfilling too.
The major piece of advise for this, is to pace yourself. As Sylvia was saying, do your chores as usual, but take a break after about a half hour or so, as you tolerate, sit down, do something sedentary, like pay bills, write a note to someone, call somebody and chat for awhile, pare potatoes for dinner, or pare apples for a pie, whatever, you get the idea. Then go back to the more active chore you were doing, then take another break, etc. Honestly, by the end of the day, you will have accomplished just as much, but without the pain and agony of having worn yourself out by doing things constantly.
Personally, I keep a book, or my Kindle, nearby, out on the patio, so it is there when I need to take a break from gardening chores. As it happens, then I have to make myself take a break from reading, so I can get the chore done!
That happened yesterday, as I was planting bulbs in a couple big pots for the patio, and I really did want to get them watered in before I went into the house for the evening. I got it done, had been reading James Patterson's book "Tick Tock" on the Kindle, so I took a shower, got in bed with James Patterson (yeah, haha) and read until the 11:00 news came on.
I declared it a very fine day! Good luck, keep us posted. Loretxx
Im actually quite lucky as im temporarily living with the parents so dont really have to do much in the way of housework etc but i make myself do it or i wont know whats hit me when i get my own! I did cut the grass the other week and dad didnt believe me when i said id done it, i dont think he can get his head round the fact i am capable some days and not others as he keeps asking if i'll be able to do something tomorrow! I think its just that when you're younger you always try and plan your life but it disorientates you when it throws you a curveball.....Im normally a 'cross that bridge when i come to it' person but just recently been worrying what im actually meant to be doing.
Sylvie i hope your op goes ok and it works for you, im dreading the day i may need one but if it works for you it will be worth having it done and think of it this way, if you're having a general anesthetic then at least you'll get a few hours undisturbed sleep! And Loret i have the same trouble, i do something then think i'll just read a chapter...which becomes two....but i do find having a book handy is the best way to make me sit and rest or i feel guilty about just sitting. My gran is the best at actually telling me to sit, she has the horses so when im at hers she shouts me in from the yard to tell me to take a break! At least if i get lost in a book im not clock watching, a day with James Patterson sounds like a very fine day indeed!!
It is good to know that others are just as confused as i am, but at least if you're already at rock bottom the only way is up!
Thankyou
Max xx
Hi Max, I appreciate where you're coming from because I feel just the same right now. I was only diagnosed a little over a week ago so I'm currently coming to terms with this new way of living. I worked as an administrator with DWP before I got RA but have no job now and wonder who will take me on with this disease? It's the uncertainty that drives me nuts. I'm too young at 43 to be retiring and although I try to do as much as possible in the home I feel I've lost my identity as paid work gave me not only an income but a whole social scene. Anyway just want to say you're not alone in wondering what to do next. For now I'm concentrating on improving my health and fitness and hopefully soon I'll feel strong enough to look for work. If you do find that fairy Godmother please send her this way when you've finished with her. All the best
Paula x
It is the most confusing of diseases I agree. One day marching the next day bedridden and the mind wandering about in all directions. If we find it hard to adjust to it must be even harder for parents, spouses, sibblings and children to come to terms with as they don't even have the pain to let them know it's real. TTx
Paula thats exactly it, the whole having to re-discover yourself again when you were quite happy with who you were before! I cant even claim any kind of sickness benefit, apparently im not ill enough, so im actually having to look for work which is hard when you dont know what you can do. And tilda you're right you do forget about the others that have to live with RA but dont feel it, if its hard for us to understand then i suppose how can they?
I think we all have days where we need to whinge. This is a relentless not-so-merry go round and we can't get off it. And sometimes we just need to let ourselves be low and miserable, and not be all stiff upper lipped about it. And then maybe tomorrow we can start again at being cheerful. I used to feel awful when I was grumping around, dragging everyone else down too. Now I just take my iPad to a corner off by myself for a bit. But hopefully it will get better for you. And you will rebuild a life - maybe a bit different, but it will still have good things in it. Could you use your skills in another way that doesn't mean standing up and leaning over people's heads all day? Maybe dog haircuts where you can sit down? Or working with wigs? You'll find something, so won't be lost forever. Pollyx
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If its not one thing it's another!
Feeling pretty low!!
Feeling a bit desperate
Why should i carry on.
