Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.
That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…
Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.
I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?
So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.
So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.
My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”
I too can relate to this… In my situation though I find those closest to me are the ones who don’t understand and feel “blown-off” when I just can’t keep up with the plans. Those not so close just deal with it differently and don’t make it a big deal. This is truly one of my biggest struggles and “guilt trips.” I feel bad and gulity for days on end if I have to change plans or worse yet, cancel them because of my M.S. symptoms. I tend to push myself and risk my health in order to please others and avoid judgement from those I “can’t” disappoint.
I find myself making plans and letting the people with whom I have made plans, that I will call them the day before to confirm or cancel. I usually know the day before if it will work out or not. I also tell them that, due to the “if”, they should feel welcome to take up another offer for that day and can cancel with me. It seems to work, thus far.