Im wondering how others deal with saying “no” when you can’t do things because of how you feel. I myself don’t want to be “complaining” but often feel I need to be explaining myself, which makes me feel as tho I am complaining and it feels so negative!! That day or two after meds are low days for me generally with fatigue and nausea and I tend to slow down and socially I find people don’t always get it. I’m fairly active the rest of the week as my symptoms are thankfully well controlled:) unless ofcourse i have a flare, so I think that for me at least, my friends and family tend to forget that I do still struggle. Keeping a positive state of mind for me is crucial to my sense of well being any advice? I know from all that I have been reading here that I have finally found people who get it. You are all so amazing overcoming all that you do everyday. I feel so blessed that my drugs do work well for me when I read some of your stories. Im new here so i hope im posting this correctly!!
Hi there and Welcome,
One of the members added some content called ‘The Spoon Theory’ on another post. It is a lovely way to explain how it is to have illness I’ve shown it to my friends who also suffer illness and we’ve all cried cos its so helpful
I’ll find the discussion and put it at the top of the pile as it were
Hi, Jody! Welcome to the group, I’m glad you’re here, but sorry you’d had to join. The spoon theory is lovely, and a really nice way of explaining what we all go through.
I want to correct you, though. We’re not any more amazing than you are: we struggle, and we do the best we can with what we have. Just like you do. This disease is a challenge, and the companionship here makes us all stronger! Glad you’ve joined us.
Take care
Seenie
Hi there, The Spoon Theory is a link posted in a discussion by Lena Diaz. I think its called something like ‘I’m feeling alone with no help’ or something close to that
Hi!
For me, it was hard to get used to saying no, because I never had before. (not because of other people’s reactions). I’m a giver/pleaser, plus I love a social life, so I was always saying yes to activities, volunteering, etc. Is it the same for you?
So in the end, I just had to practice until it’s become comfortable. My favorites are, “sorry, I can’t that day,” or “I’m fresher in the mornings (or xyz days), can we reschedule?,” or “my health is different every day - is it ok if I let you know at the last minute?”, or “I can’t take any new responsibilities at this time, can you check with me again at the new year?”
It still feels weird. But I remind myself that many people say No all the time without feeling guilty. Lucky them!
The spoon theory is great too, to remind myself to stay balanced
The Spoon Theory is a must read! It is an incredibly simplistic way to explain life as we know it. It explains to others much better than I ever could. Awesome!
Setting boundaries is HUGE for people with PsA. For me, I try not to schedule anything for 36 hours after getting an infusion, as I know I'll have a "remicade hangover." I also know my limitations, and try to schedule get-togethers with friends for earlier in the day, as I'm basically useless after 5pm. If I have something scheduled for later in the day, I do my best to arrange my day so that I can rest before going out.
I've said no to many, many things over the past couple years - most of them volunteer activities. I do, however, make inquiries as to alternatives I might be able to do whenever I need to say no. For example: no, I can't go to a Mom's Night Out on Friday night (we have homeschool co-op all day and I'll be FRIED), but would anyone like to get together for brunch on Saturday? Or, No, I can't spend the day at our table at the fair, but I do have a box of books I can donate if you'd like to do a book give-away at the fair to help attract people to the booth.
I always had trouble saying no, but in the last few years, since the arthritis hit, I had to learn. I have kiddos that range in age from 7 to 16, and honestly, they take up most of my time. I try to get together with friends occasionally, but it's very tiring to do what other people do, socially. It is difficult for people to understand, as you don't always look as sick as you feel. You just have to take care of yourself first, and then your family, and then others. If you don't take care of yourself, you'll have nothing left for anyone or anything else. It's all about priorities, and if someone gets upset about that, that's just the way it has to be. You don't want to push yourself so far, trying to be all things to all people, that you actually start looking as bad as you feel ;-)
I always had trouble saying no, but in the last few years, since the arthritis hit, I had to learn. I have kiddos that range in age from 7 to 16, and honestly, they take up most of my time. I try to get together with friends occasionally, but it's very tiring to do what other people do, socially. It is difficult for people to understand, as you don't always look as sick as you feel. You just have to take care of yourself first, and then your family, and then others. If you don't take care of yourself, you'll have nothing left for anyone or anything else. It's all about priorities, and if someone gets upset about that, that's just the way it has to be. You don't want to push yourself so far, trying to be all things to all people, that you actually start looking as bad as you feel ;-)
Thank you for all of your thoughts and words of wisdom:) Its true, I do push too far sometimes because I want to take care of people especially those I love. I do need to practice the "NO" and realize that being healthy is going to allow me to be the best me. I will try! Tonite I let my son go to hockey with another family which I NEVER do! but it was a game that would put me to bed after midnight and I work early soooo....I let go and it was ok. He certainly was fine with it and understands that...its me who does it to me :P No room for guilty Mom syndrome with PsA!
Jody - congrats re the hockey game! My kids have gained so much independence, resilience, and pride since I became sick and unable to do (or overdo) as much as before. My son’s social skills and friendships bloomed because of all the carpools and playdates he “had” to do. It is one of the really good side effects of being sick - one of the good answers to “why did this happen to me!!!”. (yet of course the mommy guilt persists…darn it)
