LIFE AND FAMILY ,AND THOSE IMMORTAL WORDS .ARE YOU OK ,OR DON'T DO THAT LEAVE IT .

SeaVixon

My friends say I am a very positive person to know ,and they all ways say they can not understand why I smile and joke around as much as I do ,I all ways say to them I will not give into my disabilities ,and by that, I mean I won't moan about my pain, when we go out, or sit down for a meal together ,or if they want to go out to the park, or want to go to a garden centre some where .To me people want to enjoy their day ,they don't want to hear about my problems ,or how much Arthritis affects my life, so I say nothing. But what gets me is I'm expected to do this in sever pain , if I do say some thing, then people say I'm grumpy ,or they get irritated with me because I'm ruining their day out ,so I back of from talking, for fear of up setting them , or they then starting asking are you OK, or whats up repeatedly (yet they know whats up, your in pain ) eventually I snap ,and ask them to stop asking if I'm, OK, the conversation then becomes difficult, and the atmosphere changes .

What I think I'm trying to say here is ,am I different to others on this platform ,as I right to remain positive and happy in order to please them even when I fail , especial when it's my partner of kids who keep asking me if I'm OK .

They seem at times to forget I'm a disabled person, who is in permanent pain and finds walking exsteamly painfull, and yes, I do have a scooter and a wheel chair which I can use to go out ,but they both to jolt my spine ,which leaves me in chronic pain for days after , I can no longer walk far on my crutches, as both my elbows and shoulders are arthritic due to constant use over 15years of walking on them, but how should I ,as a disabled person respond to those who do not understand what arthritis can do to a person .

Yes I want a life,but I can't do what other people want me to-do ,is that wrong ,am I at fault? should I try harder to please others, or should I just shut down and hide .I'm must admit this problem is getting me very agitated AT THE MOMENT and VERY down, as I can't find my way through this conundrum ,so all suggestions on  how to handle this, would be welcome.

Thanks sea vixon

Trish9556

Hi

That is so awful of people saying you are ruining their day if you dare to mention that you're in pain. How dare they after you are doing everything to hide what you're going through.

You shouldn't have to hide your pain. People should understand how you feel. My arthritis is by a long long way no where near as severe as yours. I am so happy that the recent advertisements show how we feel, every single day and have recently started saying to people, "when you see/hear those adverts think of me because that is precisely how I feel". It makes them think and realise.

I am a fiercely independent person with young grandchildren and I hate being told don't do this, don't do that, leave that alone and will say I can do it if I can't I will ask for help. To ask for help is against my very nature and I never, when I was waiting for sub-acromial decompressions in both shoulders, never ask for help so I think now, they are beginning to realise how bad mum is, they are still very protective though.

If you want to do something and feel you can do it, then go ahead and enjoy it. If you get invites out and are in a bad place don't go for the hell of it, simply tell them you're having a bad day, people need to know in order that they can understand and if you cant do something you used to do and people think you still can then tell them that much as you would like to, you can't do that anymore. Good friends will understand and if they don't, they're not the friends you need.

Please don't let this get you down, you are not alone and someone will always answer your scream for help when you feel as if you're banging your head against a brick wall and no-one understands of cares. We understand.

Stay safe, love n hugs Trish. xx

Mike1

I hate being asked how I am, luckily I live alone with only my cat for company and she doesn't bother.

frogmorton

Hi @SeaVixon

I have always believed that

"How are you?" is a greeting a polite greeting and not an actual enquiry into my health so always reply with "Fine thanks how are you?"

Sadly there are very few people who are genuinely interested about my health😕 Especially not cats as Mike1 says😁

As for 'pretending' you are ok when you are really struggling I'm not sure I would always do that. Sometimes if you feel you can't go out and do something you ought to put yourself first and say you aren't up to it today. BUT add please invite me next time I enjoy seeing you/chatting with you/whatever it is. Maybe point out the Versus Arthritis adverts when they come on TV???

Sometimes though a person needs to look at their friends as see what they are getting out of a friendship 🤔 family though we can't chose can we? When they've been out you can ask them if they had a nice time. I am assuming that at the moment they are after you to come out on walks with them with this lockdown.

Keep that smile on your face though I can tell you are an upbeat person in general.

Take care and moan to us lot we understand and will not judge ((()))

Toni x

SilverSpots

If I am socialising, I try to say at the start if I am having a bad day. It sets the expectations if I am a bit quite, or less likely to join in - or even if I want to go home early.

My husband is the most likely to say "you are moody today" and it was that that helped me understand that unless I am clear about how I am thinking, I can't expect everyone to just KNOW what is up.

Sometimes, as you say, I can do the happy face - it is easier some days than others.

SeaVixon

Hi

Thanks for the tips ,and please don't think I was moaning about my family and friends ,I wasn't ,what I was trying to-do was get some feed back from this board ,regarding this behaviour ,and if it's normal, how do others get over the problem .I love my family to death, and my friends, but, as I said, they can be over protective ,especially when your daughter is an O/T and watches every move you make .

I don't want to hurt any of them, but I find the constant how are you ,or ,are you in pain very annoying some times, and some times I snap, especially at the wife ,who constantly asks me those questions ,no matter how many times I answer her ,and my family say it's because she worries about me especially when I'm quite .

I suppose I will just have to learn to live with it, just as I have over the last 30 years, mind you would of thought by now both of us would have learnt how to cope by now..

Thanks for the feed back, it's been interesting .

Regards

Sea- King

wazz42

Hi

You aren't moaning - never think that - you are just trying to make sense of something that defies it. Some things I've done - When someone asks me how I am - if they are my loved ones or close friends - Do you really want to know? Then base your reply on that. That's not the time for a brave face, they do want to know. They can't do anything about it, if it could be done it would have but you would like their help and support on bad days.

I and my oh were not doing well, he was telling me to stop peeling the spuds or whatever, but at that time I was determined those spuds weren't going to win and anyway he's not my boss ... you can imagine. We managed to talk and I said I didn't want to be told what to do, oh didn't want me wasting my energy on spuds. So a compromise - oh can tell me ONCE that he would rather peel spuds, if I refused that was fine it was my choice. I had a fuss about vaccing, I couldn't manhandle the vac and he felt vaccing should only be done when he felt it, so oh agreed to do the vaccing once a week on Thursday if Thursday came and it wasn't done I could remind him ONCE and he would do it that day. This worked for us and it had many trade offs into other areas. My oh recognises how I am by my face, words getting jumbled or such like and and will take appropriate action - offering a cuppa, how can I help, that kind of thing.

And all from peeling spuds!

We now have a little light vac that I can use! But oh still does everywhere on a Thursday

xx