Living Without Arthritis.

elsa56

Ive had problems for 17 years now. It started with my back as I have dessicated disc in the lower and upper part. Landed up in a wheelchair for about 6 months. First few years were quite calm and then it got alot worse, I would have thought family members would understand me by now but not all of them do. The ones that dont get me have distance themselves from me because they think its all excuses. My daughter inlaw is a carer for someone who is blind and not a family member. She has only known her for about 3 years. That hurts me because I hardly ever see her. One thing I wont do is beg for help, maybe Im stupid but if someone really cares you shouldn't have to ask. My daughter is a god send, Ive missed her help while the children are on holidays.

Boomer13

That's so difficult elsa56. I agree you shouldn't have to ask for help.

I have family that are really understanding, but then one or two that are sceptics at heart (about everything) who seem to believe if they could just motivate me....I would get better. I try to tell myself it's their problem, not mine, like DD says. But, it's soo tedious to have to go through explaining/arguing that I can't attend a function, or go on a walk, fly to visit, etc because of XXXXX@$#* for the hundredth time when they should get it already!!!

I don't expect my family to help as they all have various commitments, problems of their own and my husband is here helping me most of the time. It would be nice though, if they could stop trying to 'do me some good' by arguing, and trying to drag me out to do things that are to much for me.

Just listening is one really nice thing thing that PLWA (People Living Without Arthritis) could do for those with arthritis and we shouldn't have to ask, or shout!

Anna, (ok I'm a champion ranter :oops: )

elsa56

I agree Boomer, I know my family all have their own commitments, but a call to ask how you are occasionaly makes you feel better.
Here I go moaning again!!!
Alot of my problem is that I get asked to babysit and as us OA sufferers know, you can't say what day you are going to feel well enough to do it.
Does that make me a bad person?

To them it looks like you don't want to look after you own grandchildren and that I'm not interested in them.
I just wish that people who LWA would read about how it affects us..
Moan over
Hope you are having a good day
Love
Elsa xxx

dreamdaisy

People who don't have arthritis won't be in the slightest bit interested in our lives because we are not interesting. My thoughts on your situation, elsa56, are running along the lines of if you don't ask for help (even occasionally) then people won't volunteer it because you are presenting as someone who can cope and who can get on - this could also be why they appear to get 'the hump' if you say you can't babysit because they are possibly interpreting 'cannot' as 'will not'.

I ask help from people all the time, I'm a shocker in supermarkets and check-out queues and I have even been known to request other drinkers in pubs to fetch a beer for me (I give them the money, obviously ). I make use of all available help whenever I can get it because that preserves my limited energies for when there is none (eg when I'm at home). I also help out others - the ice grippers or cuffs on my sticks make for wonderful 'getters' for stuff on high shelves that the shorties can't reach. What goes around comes around, yes? DD

Boomer13

Hi elsa56;

No, I don't think this makes you a bad person just realistic about what you can handle. I find it very difficult to be around people when I'm very painful, I think it's just natural behavior to want to hide.

I love my 2 nephews dearly but it's really exhausting having them here and I feel I have to be up to entertain/watch them. My brother thinks this is 'good' for me, but it takes me several days to recover and I have come to dread being asked to have them for this reason. It makes me feel so bad; what kind of auntie doesn't want to spend time with her nephews?

Anyway, recently I decided to just have them over, let them see me at my worst and stay in bed rather than get up to entertain them. I found this intensely embarrassing (I'm a very private person). My nephews adapted very well and were so sweet bringing me things and playing in my room. At least I wasn't so exhausted. My brother just can't seem to get it, though (or doesn't want to)!!

DD I really agree with you about asking for help, I just find it very difficult to ask my family, for various reasons. Strangers I have no problem! I love being helpful in small ways around in the grocery store, for example. My husband is lovely about high-shelf items as he is 6'4"!!!

xxAnna

dreamdaisy

I don't have any family around me, they are all safely lurking between 130 - 400 miles away, on reading threads here I reckon I maybe lucky with that. I used to hate asking strangers but it didn't take me long to realise that I was only hurting myself.

I think family don't 'get it' because they know there is nothing they can do to 'fix' us; I know that my husband goes through phases of feeling helpless, usually when things worsen with me, and that is tough for him. Men like to mend and repair but I'm beyond that. We all deal with things in our different ways. DD

stickywicket

I've always found most people understanding about my limitations though the odd one always has to have things spelled out. My sons were born long after my diagnosis so they grew up knowing about the limitations of arthritis. They don't ask the impossible of me but are very ingenious at creating ways in which I can join in to the full. I think that often what is necessary is a calm, factual explanation of how things are, maybe backed up with an AC leaflet or two. As/when they forget, a gentle reminder might be useful.