A horrible and humbling outing

A horrible and humbling outing

My first social outing since March I was having dinner at my mom and stepdad’s house. It was the first time I was seeing my mom since a quick drive by in the beginning of April. It was the first time I was seeing my sister and brother-in-law since February. We were all getting together to celebrate my daughter’s 21st birthday which is on Wednesday. We were having dinner outside. She has a beautiful backyard but definitely has challenges for someone in a wheelchair. Yet we managed and got me to the table. That’s when the belly started.

I was fine all day, maybe a little gassey but fine. The second I get settled at the table, my body doesn’t cooperate. Now we had to get me inside. Again not without its challenges even with all the ramps. Unfortunately, my body never gives me much time and maneuvering into the house took more time than I had. First night, celebrating my daughter, even wearing brand new jeans and I had an accident. I didn’t make it in time. Talk about horrifying.

I was with my family and this is my disease but the one time I go out this is what had to happen. This time I wasn’t able to stay so positive and I broke down in tears. It was so unfair. MS is so unfair. It is a difficult disease and it takes away some of the most basic things that makes you feel normal and human. My mom was wiping my tush last night. At 48 life doesn’t get more demoralizing than that. I understand when a parent gets older and a kid has to do it because of dementia, that makes sense. At 48 with full mental capacity that is a tough one to take. You would think that was the worst part but it still wasn’t. My mom had to lend me bloomers and pants. I really say bloomers because that is what people my mom’s age wears. She is also somewhat bigger than me so the clothes were extremely big. A situation that would be quite humorous in a different circumstance.

I did my best to shake it off and enjoy the night for my family and especially my daughter. My family is very good with understanding and empathy and mostly not replaying the evenings events. We had a lovely night but I was drained. I was thrill to go home. I was more happy to be in my own clothes. However my night wasn’t over at being horrible. My shirt got caught on my wheelchair controls and I slammed into my mirror door.

At that point I just shook my head and went to bed. I was done for the night.

I tell these embarrassing and horrible stories for anyone else. Who might have a bad multiple sclerosis day. It is a tough disease and sometimes you just can’t smile your way through every moment. That’s ok, you aren’t alone. However, those bad days do pass and you do get through them. That’s the lesson to take away. You can smile again tomorrow.

4 thoughts on “A horrible and humbling outing

  1. Yes. It was rough, and I would have broken down in tears too. and yes, it would have been comic if it wasn’t so traumatic! But you did great- you pulled through, even in your new bloomers, we all did (sans bloomers) and we rallied for your beautiful little girl! That being said, next time we are coming to you! We all learned it’s best to keep you happy and safe and comfortable and we want best Jamie when we are together. You deserve that, and we all do! also danny suggests not replacing that mirror with glass! chose something more bendy one could bump into it at leisure. 🙂

  2. I’m so sorry that happened to you. I’ve been there. For me, the hardest part was actually last summer when I was hospitalized for a flare. They initially thought I’d had a stroke, but turned out it was a brand new shiny brain lesion making itself known. I’ve named it Dave (after my step-father, with whom I’ve had a terrible relationship since he joined the family. He threw me out of my Mom’s house when I was 19, unemployed and grieving the death of my father (who also had MS and who had been abusive, so I was horribly confused by the grief I felt. Long story. My Mom doesn’t know any of this bc it would kill her.) I name all my lesions after men who have hurt me. It’s funny to me. But I have a dark sense of humor.
    Anyway, I was in the hospital for this flare. I had lost function of the left side of my body and even though I’m right handed, I was having a lot of trouble coping with having to suddenly do absolutely everything one handed. And I’ve had some difficulty with bathroom tasks for awhile as the dexterity of my hands isn’t great. Thankfully there are aids available to help and I have them—at home. Since I was in the hospital and rehab for almost a month, within a few days, I had to ask the nurses there for help cleaning myself up and that was the most difficult thing I have ever had to do. I was 40 at the time and even though it was part of their job and I knew I wasn’t the first patient they had to help, bring completely lucid and having to ask some 23 year old girl-who was a stranger to me in every other way help me with something that was rather intimate was completely horrifying. I cried the entire time and every time thereafter that I had to ask for help. It was so completely humiliating. I’m still embarrassed just thinking about it. The other time was when I had an accident in the parking lot of the post office and had to drive home unclean with wet clothes. That was awful too.
    I have a friend who is a few months younger than me who also has MS and she just matter of fact my wears adult diapers everywhere all the time. I haven’t been able to embrace that yet. I keep thinking that it’s not a big enough problem for me yet but I’m humiliated and cry every time it happens, even when I’m at home. It’s one change that I can’t let myself accept, I guess.
    My point being that you aren’t alone. I’m so sorry your evening of celebration was marred by that. I hope that maybe later in the week you feel well enough for a little celebration with your daughter alone to maybe reclaim some of that joy that you missed out on last night. Reclaiming these things, when we can, seems like an important step (at least, it has been helpful to me.)
    I truly hope your week gets better and I wish your daughter a very happy birthday. 🎂

  3. I love that you named you lesions, it is something I would do but not with things I dislike. I’m sorry you have such terrible moments that didn’t help with your MS beginnings. I certainly can understand how that incident in a hospital would feel. Unfortunately this is far from my first incident and far from my first horrible and horrendous embarrassing moment with accidents of both kinds. It never gets less upsetting. It is the one MS symptom that still brings on the tears. It is the hardest symptom I deal with regardless of the steps I take to prevent.
    I know I’m not alone and that’s why I write about it for all of us and for people like you who comment back. It is comforting for anyone with a chronic disease to know we are together. Thank you so much for your story. 💕

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