Skip to Accessibility Tools Skip to Content Skip to Footer
But I Want To…

But I Want To…

Poll


I’m not sure about everyone else, but I seem to use the title of this article fairly often, or something similar to it. What am I talking about? I’m talking about being invited to do things with other people… I don’t think it’s truly understood that I do WANT to go do things I’m invited to, but there are times that I just CAN’T.

Now, I’m not talking about the ‘can’t go’ due to complicated schedule, etc. I’m talking about I physically CANNOT GO… How do I know this? Because I’ve pushed myself to go do things with others, when I know I should have just stayed in bed.

Here is an example: I was invited to a concert… floor seats, like 7th row… right smack dab in the middle of it all, for Lynyrd Skynyrd, mind you… So of course it’s going to be loud. I worked all day, came home, got ready, went to dinner, then it was time for the concert…. Usually when I get home from work, I’m exhausted as it is… so can you imagine going out afterwards, and having to work the next day as well… This is what I want people to understand when I say I CANNOT GO. I’m at a very LOUD concert, alternating between standing up and sitting down… You can’t hear the person next to you because it’s so loud… I’m having fun – don’t get me wrong on that.

Now for the embarrassing part. with the loud music, all the people, etc., What happened to me? I didn’t fall; my legs didn’t give out, even though it felt like they were going to… I KEPT FALLING ASLEEP! No I didn’t just have a typo or autocorrect moment… I seriously kept falling asleep. I kept getting these odd looks from people when they would notice, but I played it off like I just ‘had my eyes closed’ or something like that, because I mean seriously, who falls asleep in the middle of a concert? Well apparently, I do.

So what am I getting at with this rant? I wish people would understand that I do want to go do things, but I have to take in to account my ‘limits’ as I like to refer to them. For me, I’m more active in the Fall/Winter… and I’m a complete ‘Homebody’ during the summer.

I wish that others would understand that I’m not trying to back out of plans at the last minute, I’m not trying to get of things I don’t want to do… that’s not it at all. My own body is punishing me when I do ‘too much.’ I don’t need to be ‘punished’ from others on top of it.

It’s like, if I had plans to do something, and I had to back out of them, I don’t get invited anymore… and that just stinks… because I really wanted to go do this certain thing, but I just couldn’t. So instead of making my self suffer, and being a ‘Debbie downer’ the whole time, I do what’s best in the situation, and cancel, even if it’s last minute.

So to those people that think that their friends with MS just cancel at the last minute because we don’t want to go, or have other plans… this is just a reminder that we have limitations we have to keep in mind, and we’re doing what we feel is best in the situation. But please remember this: just because I cancel plans, decline invitations, etc., doesn’t meant that I don’t want to be there. I’m not making up excuses or cancelling just because… it’s none of those. I seem to be on repeat at times when I have to say, “I’m sorry I can’t make it after all, but I REALLY wanted to!” That’s not me declining politely, that is me really speaking from the heart.

I’m not trying to bring a pity party, or anything like that, whatsoever… It’s just really hard to deal with. Because once you cancel/decline a certain amount of times, it seems you stop getting invited anywhere… at least that’s how it appears to me.

I can tell you that the only people that really truly understand are the ones who physically see what I go through on a daily basis, or they have MS, or something similar.

Now, I can’t speak for everyone else… but for me, I’m looking for understanding. I’m not looking for sympathy, pity, etc. I want people to fully understand, not just say, “I get it.” Does that make sense? I mean I already feel horrible most likely, then I feel even worse for cancelling, so can we not stack any more negativity onto the stack?

Just because I’ve done it before, doesn’t mean I can do it at that certain time that I’m asked either. There are SO many things that come into play, and it’s not always just dependent on the weather… It depends on my fatigue level, pain level, cognitive function, temperature, weakness and vision… the list can go and on.

I’m on Tysabri now, but before when I was on an injection or pill, there were side effects… so I had to work around those as well.

I know that a lot of people that I’m close to will even vouch for the fact that I do well if I have people over at my house, or if I go to a good friends house, because I know that I can rest if needed. However, it all depends still, but at least I know I can relax if need be. So that’s always reassuring.

I just wish that I didn’t have so much guilt over the subject. I mean, if I can’t do something when invited to something, it’s not just me that doesn’t go most of the time, it’s my husband and kids as well. I feel like I’m holding them back from things, and I wish it wasn’t like that.

So, no… I don’t use MS as an excuse to get out of plans. Why would I want to deal with the entire blow back of it? I think we all know that I’m a very outgoing/blunt person, so if I simply don’t want to do something, I’m not going to be shy in saying so, however I will be polite about it.

xoxo

Ashley Ringstaff

Follow me on Facebook | Follow me on Twitter | Follow me on Pinterest

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • J Bel
    3 years ago

    Wow, I am in tears reading this. My dad’s birthday was the 29th. No plans had been made and I thought I would just drop by when I could with his present and to spend some time. Maybe not on his actual birthday, but when I could. Well, I got the call that my family was going out to eat about an hour before they were going. I was in bed when I got the call and having a particularly bad day. I would have to shower quickly and make it to the other side of town in an hour. Most people could probably pull this off. However, just showering for me takes all my energy, due to rise in temperature. I wanted desperately to go, I just couldn’t. I told them I wasn’t feeling up to it and I’m sure they had a little talk about how I never show up for anything. I’ve told them before I need plenty of notice, but sometimes I still can’t go. It broke my heart and I cried until I had a migraine. It really is so isolating sometimes when people don’t understand what you’re going through. Thanks for this article! I don’t feel so alone.

  • Nancy Lee
    3 years ago

    The toughest times are when your own family doesn’t care enough to learn what MS really means. My mother was totally unwilling to accept my diagnosis and the resulting limitations. Fortunately I have a few friends and family members that do understand when I crash and burn.

  • esme2288
    3 years ago

    I have been stuck at home for about ten years now, and it hurts. 1999-2002 I followed Bruce Springsteen around the country with a bunch of middle aged internet friends. I’d never had so much for, or felt so much like a part of a community. Springsteen, after a career of releasing albums every few years, started popping them out one after another after another. I don’t remember the last show I went to, but I remember that I needed somebody to go with me, just in case I couldn’t drive myself home. And Bruce plays long shows – nobody sits for 3+ hours – and I just couldn’t do it. I was exhausted long before he got to the really good songs he did for encores. And even if I could have survived the whole show, I still couldn’t be in “the pit” (no seat section by the stage) with my friends, because I couldn’t stand for that long, or hold my ground against other fans pushing from behind. I also couldn’t wander around the various cities, meet at hours-long “pre-show” parties, dance at all, or hang around waiting for Bruce to leave in his SUV…

    Not that I cared about seeing Bruce drive his car for the 40th time, dancing to Rosalita again, or drinking $5 diet soda while everybody else was getting drunk before the show. The more shows I didn’t go to, the less relevant my contributions to the online community became, the less relevant I became. So I fell out of the community.

    Springsteen is still touring and old friends are still talking about it on-line, looking for tickets, sharing tickets, arranging meet-ups. And I try not to feel sorry for myself, because I can’t be part of it ever again.

  • potter
    3 years ago

    Every year I am becoming more of a homebody in the summer. The two grocery stores close to me are offering a shopping service and then they put them in your car. I am thinking about trying it next summer or this winter if it is really icy. The idea of some outing make me cringe. My sister from CA is coming to town. My other sister wants us to meet her in a parking lot to take a photo. The parking lot is 100 miles from my house and it still in the 90’s here. People just don’t understand. Potter

  • skcullers
    3 years ago

    Total truth

  • kristensimas
    3 years ago

    You nailed it girl!!!!!! I am getting better at saying no depending on the setup/situation. The weather right now dictates everything. Great article!

    Kristen

  • Poll