I’m so tired of being excluded from life because I might be sick or having a bad day or having a flare… I am so tired of people not including me because of the above - making the assumption that I can’t, that I don’t want to try. It makes me feel like I’ve been left swinging in the wind, how would they feel if they were never included in life events of family members? If I’m not invited I can’t try. I would rather be disappointed not being able to go, than the heart break of not being included, does anyone else have this issue?
Yes and I feel your pain. I try not to dwell on it and go on with life.
That's a real shame. For family stuff, I have the opposite issue. I'm invited, but am not always up to it. Have you tried talking to any family members about this? Even if it's a formal event, final counts aren't usually required until just a few days prior.
I do think there could be a hidden agenda for some, and now I think It’s time to speak up. It just amazes me that some people can be so thoughtless, that they wouldn’t realize how hurtful it could be. I try to look at it half full, and remember that the majority of people in my life are very thoughtful and supportive and that i am blessed with them. It’s seems that we have to spend the majority of our days searching for blessings especially during a flare, so when people act like butts we can look beyond it, because we have bigger fish to fry so to speak.
May I make a suggestion which you can take it or leave it. Have you tried inviting your friends to your place or arranging something that you feel you could do with them. Even if it is only for a cuppa and a chat. Make it special and get out the good china and bake some cup cakes even if you only use a packet mix, no one will notice. There are card games and board games or have a barbeque or a dinner party. You can pre prepare so much in advance so you can cope on the day. Show them, that there are ways in how you can be included. There is always the problem of educating others about PSA. Too much and they don't want to know. We can look so well, they don't always believe us unless they see us on our bad days. I find a little information at a time over time works best for me. I do hope I have helped in some small way. I wish you well
Thank you all for your ideas and suggestions. I’m going to try them. Yesterday I was all ready to jump on Bella’s idea but what a difference a night makes. I think I’ll rest for now. And work on it in a day or two.
I had that issue a lot more when I first started to have major issues. What really bugged me was everyone treating me like I was made of glass and would break if did ANYTHING. They wouldn't let me do anything for myself. Finally, I 'got my Irish up' about it and just started doing the things I wanted to anyway. They would look at me and say, "Are you ok to do that?" My response was usually something to the effect of, "No, but I'm going to do it anyway" (OK, I admit it might not have been quite that polite). Sometimes family or friends would start to change plans because they weren't sure I would be up to whatever they were going to do. I would then just tell them to go ahead and if I needed to stop I would. More often then not I just push through and plan on paying for it later. My best advice would be to level with them and let them know how you feel. The good ones will understand and appreciate your honesty and the bad ones will bugger off.
I have kind of the opposite problem. People say 'oh you have arthritis? Well, you can't tell!'. I think that it pokes out all over. During Sept-Mar I cannot commit myself to invitations for dinner, outings, etc - I give them a maybe, based on my arthritis - God knows if I'll be up to it, maybe all my bones will be swollen up, or I'll just be exhausted from battling the chronic pain .... I have given away tickets to plays and concerts that I wanted to see to friends.