people who help you but dont give the help you need!!!

earthspirit

i am in a general complain mood at moment cos i just cant get a break from pain. my joints have far less swelling but the drier the joints become the more they are crunching around being nipped and twisted.

i seem to be surrounded by people who are offering to help but they do what they think i need rather than what i ask for help with.

its making me feel really bad because when i perhaps repeat the help i need, its then me complaining and being ungrateful for the help i am being given.

i do not need hugs and stuff but sometimes it would be good if when people see me struggling to sit in a chair or get up, there was an arm of support but instead i am helped to do the opposite. like im strugggling to get out of chair cos i need to go to loo and i get put back in chair and told to rest. if i need help to get into the chair or to position my body correctly i am told to stop moving about.

what is it about those close to you, who watch your every move to help, cannot understand that showing gratitude during a spasm of pain is a difficult thing to do and if, during this event you yell out in pain its as though you are complaining about the help.

i suppose im struggling to come to terms with the fact that those around me are struggling to cope with this disease, even tho its action and how i am, has been explained to them.

seems like its ok to be ill but you have to lie still, be waited on hand and foot & just smile sweetly.

all the moving around i do for numerous reasons is to keep my body mobile and strengthen my weak muscles.

some of the time with this disease i really wish i lived on my own, working away when i could, at home, as my own boss, paying for the assistance i needed and growing stronger with this disease. these people who "care" are weakening me. (i do luckily work from home and have enough money to pay for the things i need done. i aint well off at all but my business and my DLA pay for what i need)

any others of you felt like this ever?

LignumVitae

I think sometimes people just want to help and in their desperation in not knowing how to help they try too hard. They try to think how they'd deal with it all but with no great understanding, their suggestions sometimes seem less than helpful. I guess the closer people are to you the more they want to help so the more concentrated that whole situation becomes. I don't know the answer, smile sweetly and write your frustrations out here maybe? I guess all that beats nobody giving a rats **** about you and how you are though.

Melrymax

I think people don't know to help in a helpful way lol. Eg when I was going through a bad patch with pain my mother was telling me to mobilise more (I spent alot of time in bed with my electric blanket) then I started to feel better steered doing more and hit a bad patch again and mymother then tells me to do less! Can't do right for doing wrong lol. The things that would be a big help is having someone tackle a small amount of the mountain of ironing, or give a hand with re organising something- but people like to just tell you what you can and can't do lol :roll:

dreamdaisy

I have found over the years that if I am clear, precise and polite about the help I need I get it. I tell those around me what I need, and why, and always say thank you even if things go a tad wrong in the execution of the assistance. As for my mother I now routinely ignore her 'helpful' advice and always tell her what she wants to hear -that way we're both happy. DD

earthspirit

i think that the very nature of arthur makes him a difficult cookie for anyone to handle.
if our disease were more specific others would understand easier.

its a hard battle dealing with the disease but for others who want to do things to help to make us better, its a thankless task.

ive got to a point where i am literally screaming at people )in my head) to leave me the hell alone and let me muddle away doing what i can do and modifying what i cant really do, sometimes having to refuse the help which is becoming more of a hindrance.

smile sweetly keep calm and carry on....alone lol

arthur doesnt turn your brain simple but people treating you as tho you are incapable of individual thought and action is claustophobic to the extreme.

dreamdaisy

Part of the troube may be your anthropomorphising this disease. Giving it a friendly, human and noble name does not convey the depths to which we can descend when dealing with it. People who don't have it can't fully understand what it's like. Our disease is specific - our bodies turn on themselves begguring up our joints. My husband found me rubbing my right knee last Thursday morning ands asked 'Is it hurting?' I thought about replying 'It ******* hurts all the ******* time along with the other ******* joints.' but didn't. I smiled and said 'Yes, quite a lot.' He replied 'Oh.' And toddled off. He knew he couldn't help, I know he can't help, nobody can. As for cookies, well, I eat those.

I was in the wine aisle of Sainsbriz yesterday and realised I couldn't reach a bottle I wanted as it was near the back of the lowest shelf. I could see it, but couldn't hook it out with my crutch. So I grabbed a passing fellow oenophile, I explained why I couldn't kneel so and she very sweetly knelt and dragged out what I required. We had a nice chat about wine so she then pulled out a few more for me. I've asked all sorts of people to do all sorts of things and so far not one person has refused. Conversely I reach stuff down from top shelves for short people (including the OH) read labels for the badly-sighted (including the OH) I do what I can to help others because I need help. I don't expect anyone to understand what a trial life can be - but when they get arthritis then they'll know. (DD wanders off doing her best horror film laugh.)

dreamdaisy

I've had some further thoughts.

1. I'm disabled, not an invalid.

2. No way would I want to be living on my own. I could live on my own and manage stuff reasonably well but it's a boon to have someone around to make me a cuppa, to help with the cooking and washing up (he does the week-ends) and to take my mind off things - and also to give me things to do such as laundry.

3. None of us are alone with this as we have the forum where we can talk to those who understand what it is like and how tough things can be.

4. Life could be a damn sight worse than it is.

DD

barbara12

I have learned to ask for help, its coming slow but sure, but like you I did once get a lady push me back into a chair...when it had taken me all of 5mins to lift myself out of it.
Its so hard to deal with sometimes, so I do understand what you are saying...I nursed my mum and dad for a number of years, so I have learned not to be offish or bad tempered with people that try to help.
Hope you get some relief very soon..keep talking to us lot we will get you there :? x

stickywicket

I think the people we live with and mix with regularly do learn as they go along in exactly the same way as we do but from a different perspective. It's hard for them too. It's not just a matter of learning how to live with someone who has arthritis: it's learning to live with your wife/husband/child/friend/parent who has RA/OA/PsA/ReA/AS in hips/knees/hands/back/neck/feet etc etc. There's no one-size-fits-all solution. All we can do is say what helps and when it helps. (I am fiercely independent in the good times, which doesn't help those around me to deal with the bad times.) Some wonderful people will understand and want to learn. Others will want to either do everything for us or leave us to struggle as that's easier. My dearest friends will ask if they see me struggling and also ask how I'd like them to help but they will not impose or take the slightest bit of offence if I say I'd rather struggle.

dreamdaisy

Beautifully put, Sticky. Arthritis hits everyone who has anything to do with us - it's equally tough for them too. Oddly enough I'm having a better morning so far - I won't question why, I'll just enjoy it. DD

7worlds

Hey DD. Had to laugh at the bit with you reaching down things for short people. As i,m 4ft 11. i spend most of my time in the supermarket harassing people. Especially tall handsome rugby types

7Worlds

dreamdaisy

Me too - but for different reasons. :oops: DD

earthspirit

ive always liked helping people espec in supermarkets. with high heels i seem incredibly tall and i silently laughed to myself as i stretched for things that created horrendous pain in my arms and shoulders. well some little old ladies cant reach can they?

now that i can only wear flat shoes nobody asks me to do anything but sometimes you still see someone struggle and the instinct to help is still there.

random stranger CAN be incredibly hlepful and you can both leave the situation with a good feeling and a smile.

Petitesse

One thing that often makes me laugh is how people react when my crutches fall to the ground.
That happens quite often.
I often lean them on counters or shelves in the supermarket, without bothering to turn them upside down, to make them more stable.

It would be a natural assumption that people who use crutches need them to lean on. That if the crutches fall to the ground, this person might lose balance.

However, people always react in the same way. They never look at me or try to keep me from losing balance. They only look at the crutches on the ground, yelling 'Oh my God! and picking them up.

Sometimes I feel like joining them, looking at the crutches and yelling: 'Oh my God. Are they okay?' :shock:

stickywicket

Now that, to me, perfectly illustrates my earlier point that it’s not a matter of understanding ‘arthritis’ but of understanding the individual.

I’ve never used crutches but, if I saw someone ‘parking’ theirs, I’d assume that person was capable of standing without them and, if the crutches subsequently fell, I wouldn’t assume that the owner was going to fall too, only that they would probably be unable to pick them up for themselves.

dreamdaisy

That's a nice point Petitesse, mine regularly tumble over but I'm always the first to react to pick them up. When I'm in the 10 items only queue and get quizzical looks I explain that I can't trot round with two sticks and an increasingly heavy basket. Actually I can but I need the trolley for extra support - don't tell anyone. DD

ichabod6

Communication is a great self management tool.
Take time to tell those who care for you or wish to help
you as best you can what your problems are and give them
as much detail as possible of the help you would like to have.
If you dont tell them they wont know.

earthspirit

dd your replies are always so funny and straight to the point.
ive been in the baskets only queue with a trolley with about 6 things in it and the stupid people behing the checkout say "baskets only" and i say "i cant carry a basket" and they say "sorry we can only take baskets here" after glancing in my trolley and seeing only the 6 items. my reaction?

i grumpily snatch a basket and with great difficulty put my things in the basket and whilst still leaning heavily on the trolley i then unload the basket on to the conveyor belt.
not once, not one single time have they said sorry or anything. they are just happy that i have done the basket bit.

people seeing this comment to me about the absurdity.

one day i will complain but for now, i take more pleasure out of watching the idiots and their reactions.

all that said tho, most people are helpful and since i have been back in london i am amazed at how much help i have had in public places. kindness is such a lovely thing to experience from total strangers