Not a clue

debram

After many years of illness I'm "lucky" to have been pensioned off work (after a hard 2 yr battle)
I say "lucky" because thankfully I can worry less about bills as I have a small pension but would much rather be well and in work.
We've had many discussions about friends and family not understanding and some of the stupid things people say.
It's been a good day so I met some former colleagues for lunch. I haven't seen them for a while due to the varying nature of my PSA.
One girl said to me today - as I tried to cut my food up whilst wearing my pressure glove on my hands sweating profusely and my eyes down to my knees after 2 hrs sleep last night-
"well how are you enjoying retirement".
I would rather of been told "you look well" but "enjoying" retirement? No!

Perhaps I'm just being a miserable git or overly sensitive but it's hardly a "jolly"!!!

rant over
Debx
Like I said - not a clue!

barbara12

Hi Deb
So glad you have taken retirement, it will make things much easier for you , but like you say its a good job you have a pension...be it a small one..some people have a knack of putting there foot in :roll: has people keep telling me they mean well... :shock:

dreamdaisy

You are not being a miserable git or over-sensitive, far from it. I reckon the female who spoke that nonsense was younger plus healthy: she should be so lucky, yes? It's not her fault that she doesn't know what to say because no-one does. DD



P.S. Of course it's not a jolly - far from it. Those who live without challenge have no idea about our realities.

stickywicket

Deb – no-one has a clue. Just as we who have arthritis don't have a clue how anyone with Multiple Sclerosis, Muscular Dystrophy or Cystic Fibrosis, to name but three other diseases, cope on a daily basis. No-one has a clue about anyone else.

I sympathise and empathise. I've been in similar situations and they are very unpleasant, even more so when they're actually supposed to be pleasant occasions. However, I've grown hard and shameless over the arthritic years so, instead of just offering sympathy, I'm going to try to offer solutions.

You wrote 'It's been a good day so I met some former colleagues for lunch.' Then 'after 2 hrs sleep last night'. It can't possibly have been a good day after only two hours' sleep. You're kidding yourself. Two hours' sleep entitles you to being both 'a miserable git' and 'overly sensitive'. Just let others know in advance.

"well how are you enjoying retirement". It's a bog-standard question of any recent retiree. She's treating you as a 'normal person' not a special case. It has its merits. The overly solicitous are, I reckon, much, much worse :roll: It's also an opportunity to say “Actually, I only had two hours sleep last night. Retirement would be an awful lot more fun without arthritis but, hey, let's talk about something more interesting.”

'I tried to cut my food up whilst wearing my pressure glove on my hands sweating profusely.' You have several 'copable' options but that's not one of them. 1. Order something that doesn't need cutting. (I'm a veggie and hardly ever need a knife.) 2. Ask the kitchen staff (or the friends) to cut it for you. It doesn't have to be a big deal.

By trying to do 'normal things' 'normally' we make life much harder for ourselves. It's definitely best (if we wish to keep our friends) not to bang on about pain and misery all the time but, if we don't tell people the facts – matter-of-factly, without self-pity – how can they know?

I do hope you get a much better night's sleep tonight.

dreamdaisy

I've been thinking about your post, Debram. It is difficult accepting our limitations and learning how not to be so independent - when my hands are playing up I will order what I want and ask someone else to cut it up; why should I let arthritis deny me a little of what I fancy? The same kind of reasoning led to my getting a seated rollator - it meant that I could still go out and do things but rest as and when I needed. The next step will be a mobility scooter for exactly the same reason - I will be able to do more than I can with the rolly, still participate in things and get out-and-about.

Over the years I have learned to tailor my activities to what I can manage (I still get it wrong every now and again but for the most part I cope) but it hasn't been easy. Deep down I resent the state of my life and what it's become but it is what it is, it ain't going away and I refuse to let my arthritises win. I also recognise it as my problem, it's no-one's fault as such so I refuse to bang on about it (apart from on here ). If you are coming at this from a healthy background then that must make things a whole deal tougher. I've never been healthy so have no idea what I'm missing; looking back over my 55 years I think the first 37 were spent preparing for what I have now. DD

debram

Thanks for replies guys - some good sense info and advice there.
I have come from a "healthy background"- used to doing things 500 mph and independent. I do push myself but am also learning to "live with things", accept disability, cope as best I can and say "**** it" and rest when I need to. Especially after 2 hr sleep! I've actually not slept since Fri - zzzzzzzzz

I try not to feel sorry for myself or resent other people's remarks.
As you say we ourselves don't know exactly how other people are. I have a friend with MS tho so we've formed a "mutual moaning society" lol it does help us both.

I'm getting used to letting people down by not going to pre booked "events, meals, visits" as I have to "give in" or rather listen to my body screaming "no more today girl".
It's hard when mates say" but you look so well" (im convinced that many don't believe how ill I can be).
That said-I don't want sympathy or to be mollicoddled to be treated differently but just maybe an empathy or understanding that If I can't go today it's ok . That's how I've felt over the last 2 yr of diagnosis and the 6 or so yr struggling not knowing what was wrong.
I'm not crying off because I "can't be bothered". I need to look after me and put ME first.
I'm learning to "toughen up" thank god!
I'm learning to live in the "here and now"
I'm learning that you guys are there - I'm learning from your experiences.
I've never done so much "learning" in my 50s! Lol
Thank you so much for sharing with me xxx
Deb xx

stickywicket

I think you're right when you say it's hard coming from a healthy background. It's a steep learning curve. I've always believed in telling real friends the truth whatever it is (Sorry, can't come. I'm rubbish today. I can do (a) but not (b). Can I have a lift? etc) Everyone else? I think I stopped doing the 'casual social' thing very early on. The pleasure always had to outweigh the pain for me.

I'm sure there will be many who don't believe how ill you are. Most people assume a bit of pain and stiffness. Maybe some deformity. They'd be amazed at the fatigue and the actual nausea that comes from deep pain. Again, I tell the truth to the real friends who want it. Most people don't really want it and why should they? They have troubles of their own.

I do hope that, despite everything, you feel it was worth it yesterday. If so, that's good. If not, don't bother next time