I Just wish i could have good days and bad days like those who don’t understand MS think we have
its better times and bad times in the same day everyday and you simply can’t predict how and why these changes happen?
stay safe Simon
I’m dealing with that right now with an uncle. He means well, but he knows nothing about MS and isn’t willing to learn. He keeps telling me that all I need is to get out and exercise. I try telling him that some days I have trouble just getting out of bed, but he assures me that everything will be fine once I “get used to moving more”. Yesterday, he argued with me when I told him I couldn’t drive my son the 84 km round-trip to his doctor. To his way of thinking, I’d be sitting down the whole time, so what’s the big deal?
1 Like
Perhaps they don’t want to except that you have MS they simply don’t understand they wish you could be ok
it is ironic but we have the condition and we are the ones who have to be understanding ?
hi
savev ypour precious energy for things yuo can address
when yuo think too much abiout the past of future them yuo miss out in living now.
plwease dont think i am vbeing glib ot not understanding what you mean cos i do!
16 years i have neeb living with ms. i reead years ago - dont let thosae in your heid that you wouldnt lwt in your house. simple but it soon sortds many things out for me!
take care of yuo!
el
Hi Noras mum, if they cant see or believe what’s staring them in the face, then they are not worth your precious breath.
Boudsx
exactly choc!
Boudsx
Ellie makes a great point, we need to manage / budget our precious limited energy to get the best for everyone. Our priorities will be significantly different from how they were prior to having MS. If I think back to how I thought before my MS, I would have zero understanding of its potential and variable impacts. It is up to us to help others to understand, whist not sounding whiney. I am assuming that it would be the same for me to try and understand just how someone with another significant illness is feeling at any time. The better we are at communicating with others the more understanding we will get.
Sorry I am waffling on.
Good luck
Mick
1 Like
Everyone has good and bad days. Good weeks and bad weeks. I have gone downhill rapidly in the last 8 wks. I am trying to stay positive and enjoy the couple of hours a day I feel good. Please try and enjoy the little things and see if you can get friends to come to yours, watch videos, go through mags, things that don’t require physical exertion. I try to delegate tasks to the services like https://translationreport.com/japanese-translation-services I hate doing. I got my sisters to come to mine today and it really lifted my spirits. Also try getting into a hobby, something you can do on the couch/computer (photography editing) or local libraries often have activities. P.s. Don’t be afraid to boss your friends around.
Hello
I don’t want to seem niggly, and like I’m having a go at you Olblackk, but your reply seems a bit patronising. Plus, directly refutes what this thread began with. ‘Everyone has good and bad days’? Simon’s initial statement was that he wishes he did have.
I honestly don’t have the time or energy to start a new hobby (let alone the interest). I spend far too long in the poxy bathroom tending to my stoma.
Some of us make the best of what we’ve got without the need to ‘try and stay positive’.
Whenever I am asked ‘do you have good and bad days?’ I used to answer, ‘no, it’s more like good or bad months’. Nowadays it’s more a case of ‘no, I don’t, it’s bad days and worse days.’ Not that I’m always quite that honest. I’ll say ‘not really, it’s mostly just pretty bad times’.
I find gin and tonic and/or nice wine helps immensely. Not that I can drink too much of either, I need to concentrate on what I’m doing to avoid falling out of my wheelchair.
Sue
Well said! When civilians who don’t know me well hear that I have MS and put their heads on one side and knowingly say, ‘Ah yes, good days and bad days’, it just pisses me off to a wholly irrational degree!
Alison
1 Like
I need to send Simon to my uncle! His daily phone calls are now down to 3 a week, but he still wants to know if I had a good day and what kind of physical activity I did. I can’t get him to understand that there really aren’t any good days, just some that are better than others. He’s still convinced that exercise will cure me, and it’s becoming a major drain on my emotional well-being.
I celebrate the things I can accomplish on any given day, and he’s just breaking down my confidence with his insistence that heat shouldn’t bother me and that I should be walking around my 3 acres every afternoon. I try to ignore him, because I know he means well, but my health is worsening and he’s starting to make me very depressed.
1 Like
That must grind you down. Is there any way you can say "I appreciate what you are trying to do, but currently it is not working, when you call can you tell me about how you are feeling? The state of the world or anything else that might stop reminding me about how I am feeling. " ?
When people offer me unwanted stuff / help / opinions I try to add “I appreciate the offer” to any NO statement. Sending you long distance virtual hugs.
M