Pain - its Real!

woodbon

Hi,
Its funny how often I often, on a good day, think I could go back to work for at least a few hours a week and I'd be fine. Then reality chatches up with you. I have OA in a lot of places.

Last week I stayed with my neice, who is disabled, as her husband has, unfortunitly, just been diagnosed with cancer and he needed to have a lot of pre op tests, so stayed in hospital. I had arranged for a carer to come in and do the manual bits of the care, which I can't do and also to allow her to keep her dignity. Although I'm a care assistant and could do it.

It was a real struggle for me, my hands became swollen and my knees also. I got so tired, I went to bed as soon as possible and didn't read (which is unlike me). Now I'm home, I have taken things fairly easy, apart from starting a programme in the gym. I am, of course, very worried but the medics are wonderful.

Its answered a lot of my questions about going back to work, and I now feel happy they wont let me be a carer any more. Although I will miss it terribly. But to everyone who thinks they have a low pain threshhold or are imagining things because you are lucky to have some good days, I'd just like to say YOU'RE NOT WELL and pain is an ILLNESS.

Blimmy, I've gone on a bit :oops: Sorry, Love Sue

eckstardeluxe

Oh Sue I hear you, I hate when you have a good day, you feel so good and rush round trying to catch up on all the chores and then the next day you're like the walking dead. It amazes me how tired I am at work after only a couple of hours, I hit the Tramadol and end up out my face!

elnafinn

Aw Sue, you are a sweetie. You are absolutely right. We are not imagining our pain and thank goodness most of us do get some "good" days.

I bet you were a very popular carer. Carers certainly do vary but I know you were a good one and you will be missed by those that you used to visit and the agency you worked for as they know a good, reliable person when they get one.

It is good that you are taking it easier now and I hope the gym programme suits and you enjoy going.

Luv
Elna x

mouseymousey

Hello Sue - you are so right - on a good day you can almost (almost) think oh its ok; then it strikes back?? My best wishes..Moragx

jenzie06

Thanks Sue, I'm trying to decide whether to give up work and have been off work since christmas. By not working I feel a lot better and have fewer bad days but when I feel better I then feel guilty for not being in work. I'm only 26 and I've had RA for 11yrs and don't want to feel like I've failed. Its a toughie but I think quality of life is extremely important and when I can be alive in the evenings rather than in a puddle on the floor when my OH comes homes its worth it.
Jen
(especially good when its sunny and you can sit in the garden and eat an ice lolly!)

colinone

Hi Sue, first if all i hope your sister and hubby are OK. I have RA and PA and your post has made me smile. I know just what your saying, last monday for some reason i felt quite good after being in a flair since late october. I took to the garden where i had done no work for three years although i must say the wife takes good care of it. Sue i felt great I felt like my old self as i done all sorts of jops in the garden and garage. Come tea i could not hold onto my knife and fork i kept dropping them, i could not get up from the table after sitting for half an hour and have spent most of the week in bed. I keep telling myself it was worth it but i'm not to shure now. i have been back out for round two but not done as much and am suffering for it. Its still graet to have a good day though and perhaps i should have known better than to overdo it but it is something we all do. Take care and keep your chin up
Colin

denpen

Hi Sue
My sister was a care assistant up until recently when she too was diagnosed with OA in the hips and need a replacement (same as myself and our brother) she was recently finished on medical grounds.
Anyway she used to make me laugh when she was at work because she would say that the clients who were about 80 ish years off age could walk with their zimmers faster than her down the corridor (she would be hanging on to the wall trying to walk and they would be off in front of her. I told her that was the time she should go of sick when the clients are faster than you. Its funny isnt it you try and try to carry on as normal but in the end you have to give up when the people you are supposed to be caring for are in better condition than you are. I think we all do the same thing carry on as long as possible trying to prove "we can do it"
Hope your family are all ok.
Denise.x

woodbon

Hi Thank you all for the relies, its just some of the posts made me feel sad to think that so many of us have to convince people we have a big problem with the pain. Last week, someone said to me that I looked too 'sprightly' to have arthritis . I had to smile as I was trying hard to stand without limping on the bad leg :shock: But at one time that would have hurt me a lot. I can could tell a few stories about life as a carer which would have everyone in stiches, and I miss that, but I hope to do some volutory work, I met someone I used to work with a couple of weeks ago, and she left for health reasons, similar to mine and now is a volunteer, and suggested some things I could do. Lifes funny really, one door shut and then another opens a chink..... Love to all. Sue

eckstardeluxe

woodbon wrote:

Hi Thank you all for the relies, its just some of the posts made me feel sad to think that so many of us have to convince people we have a big problem with the pain. Last week, someone said to me that I looked too 'sprightly' to have arthritis . I had to smile as I was trying hard to stand without limping on the bad leg :shock: But at one time that would have hurt me a lot. I can could tell a few stories about life as a carer which would have everyone in stiches, and I miss that, but I hope to do some volutory work, I met someone I used to work with a couple of weeks ago, and she left for health reasons, similar to mine and now is a volunteer, and suggested some things I could do. Lifes funny really, one door shut and then another opens a chink..... Love to all. Sue

I also hate the "you're too young to have arthritis" ones too, l think of all these poor little kiddies with it and think Igot off lightly.

frogmorton

Hi Sue
Yes I know what you mean. You feel as though as it's not always visible - not everyone undersatnds and as though you are a wimp!
Why is it even doctors don't understand.
They all need to experience it for a while....
Other people are also sometimes impatient with ill-health aren't they? They don't really mean it when they ask "how are you?" You have to say "fine, how are you?"
I will stop moanning too :roll:
Anyway here's to as pain-free as posible a day for ALL of us!!!
Toni x

ninakang

Some people can be very blunt can't they? I can't believe someone would actually say "You're too young to have arthritis"!!! How very dare they!

And Jen, you haven't "failed" when you have a bad day. Like everyone's saying, we are ill and some things are out of our control.

Yesterday I was struggling to get a cup up to my mouth because my hand was hurting, but today the same hand feels fine!

I know it sounds ungrateful but when I'm struggling, I sometimes get impatient with everyone asking the same questions of "What's wrong? Do you need a hand". I sound like a right cow don't I? But I'm struggling with the fact that I can't do everything any more.

Nx

mrsdalloway

Hi Sue sorry to hear about your news. The other posts made me smile though, we are told don't dwell on the pain try and be positive and then when we do people assume all is well and nothing is wrong! hmmm. I have often thought about wearing a big sign around my neck. I struggle in college as the library is on the 3rd floor ( I can hear the collective groans! lol) and we have a lift. However, when having a bad day with my feet I hear the kids moaning about me going in it and they are not allowed. So what do you do stand there explaining everytime, hence the sign! Sorry Sue hijacked your post a little. x

ritwren

Sue how true it is that when one door shuts another one opens. I'm sorry to hear of the tough time you've been having and the difficulty coming to terms with not working. I know I'm the same and it's so reasuring to hear you and others describe exactly how I feel sometimes. I do hope today is a better day for you. Take care

mistywillow

ritwren wrote:

Sue how true it is that when one door shuts another one opens. I'm sorry to hear of the tough time you've been having and the difficulty coming to terms with not working. I know I'm the same and it's so reasuring to hear you and others describe exactly how I feel sometimes. I do hope today is a better day for you. Take care

Hi all
Just on the same note, i'm always telling people when they ask how i am and its a good day,' much better today thanks'. But then they expect Im cured!! Love Gillx

suzster

i have lost count of the number of people who have told me i'm to young for arthur, they follow it by a "oh you poor thing" or "but you look so cheerful" hmm, brave face gets put on alot, even my dr once tolds me that i should stop smiling sometimes or noone knows you feel bad! i see her at school most days and she say's i'm always smiling!! but i don't want to walk round with my chin dragging on the floor, it would get grazed for a start!!!

another point on the 'pain being real' a few yrs ago, before i had full on RA, i had to have a hip resurfacing op due to OA in my hip, after the op the pain continued and my surgeon and many other various dr's and specialists spent a long time trying to work out why, evenually i was sent to the pain management clinic. they were not to helpful and basically by the end of it they were trying to convince me that the pain was in my head! the surgeon didn't agree, but then a few yrs later the RA came along and hip pain seems better with the RA meds. i think it was the RA starting to sneak up on me, but my point is a pain specialist told me i was iimagining the pain as there was no evidence of any real pain! which to me is a cop out!

any way, sorry i digress!, i hope your niece and her husband are getting on ok?

woodbon

Thank you all for your answers and comments about my Neice and her husband. The social worker I spoke to on the phone visited them yesterday and will arrange for an overnight carer to stay in the house with my neice when her husband is in hospital as well as carers to come in to cook meals. Her husband is at home at the moment and will go into hospital as soon as he is a bit stronger , for a major operation to fit a stoma. He is in a lot of pain at the moment, and the painkillers don't help much. The hospital has given him lots of high protein drinks as he had lost 4 stones since Christmas. They hope to operate within the next 2 weeks, he has to go to see the 'stoma nurse' for a day to organize the poition for the stoma and be given instructions and help about the proceedure.

They are both very brave and seem to be managing at the moment. I just pray everything will go well for them. Her husband and myself are the closest reletives she has and her husband only has a very elderly father. I live 3 hours journey away, so can't keep popping in, but they have lots of good friends. Love Sue

frogmorton

Sue
I wish them all the best. They are lucky to have you around even if you are not close geographically.
Toni x

suzster

i'm glad social are helping them, it must be very hard for both of them.
it also must be a great having you, even if you aren't to close.
please let us know how they are doing. x

nickynysmon08

I have found, after a lot of trial and a lot of error, that on good days, one should still do less than one would normally, and allow the body to stay healed. that is do nothing to upset the joints.
this is very hard for me, but now, I will do half an hours work around the house, then maybe an hours painting, or simply sit in a chair. then get up do more work, the sit down again.
it takes great effort to do this, but so far it has worked. jobs still get done eventually, one has to prioritize them which is hard for me, but it is summer.

on bad and good days one still keeps to this routine. I find the good days so far are the majority.how easy it would be to do hard days gardening, --and reap the rewards later in bed, that is sore joints.