Wedding guest

2 Years earlier we had a wedding of another of our friends and the difference with my physical and mental condition between these two weddings is enormous. Man, man, I was in a bad shape two years ago. Back then I also had a great and fun day but at that time I was using a wheelchair and was having a lot of physical problems and emotions I could hardly control. The diagnosis and everything was so new and fresh to me back then. Acceptance was not on the table at all and I must confess, I never published the blog I wrote about that day. People would really be shocked by what challenges someone with MS would face on such a day when the person is having a bad period with flares. But nevertheless, even then, the wedding was wonderful and I am so grateful to have been present.

This wedding everything was much more ‘normal’. Man that’s nice! In the meantime I have become quite the ‘experienced MS expert’ and I know much better now how to plan my (lack of) energy so that I can have a nice day. It’s almost project management how everything is neatly planned the days in advance. Around the kids’ school schedules I plan to look for a dress, craft the wedding gift, fix my nails, choose my shoes, etc. On the day itself I make sure the kids have left the house in the morning so that I can fix my make-up, take a rest and continue with my hair an hour later. Why I need a rest? Because the nagging pain in my arms and hands become too bad so I cannot get myself ready all at once. Before I leave, I have nicely arranged my shoes. I have neat sporty shoes with my ankle-foot ortheses, flat shoes and my high heels. The high heels are out of the shoebox for the first time in 3,5 years. They make me so happy… and yes, I had to try if I can walk them again. In the living room I could wear them for 10 minutes top, but that was it. Unfortunately, those shoes need to stay home.
It has been 3 weeks since my last Tysabri infusion so the benefits are wearing off again. My feet and legs are tingling all the time and at the moment on one foot I don’t feel 3 toes at all. It also just feels like I’m wearing socks that are too large and all uncomfortably stuffed up in my shoes. In reality I’m bare feet. So with the flat shoes and the sporty ones packed up I leave the house. In a couple of hours I probably start limping and my feet will start dragging. Good to have my ortheses packed with me. But hey, on the bright side, The wheelchair is dismissed and will stay at home. 🙂

The wedding is gorgeous. Although I was convinced beforehand that I would be able to stay until the end (since the wedding started in the afternoon) 2 hours before the end I had to get someone to pick me up to get me to bed. And no, even though it was such a short time frame until the end, I was not going to make it. No, I did not get a breakdown or increasing complaints or whatever, but in general, I was just exhausted. Come to think about it that we mainly sat all day during the ceremony, dinner and on the side of the dance floor. When I got tired, I did change my shoes. Who cares if it does or doesn’t look fashionably under a fancy dress. Even the bride is wearing flipflops on the dance floor. 😉 It’s the comfort and pleasure that counts. Only problem is that I can no longer have fun at this moment. Mentally, I’m just too exhausted. Tired of all impressions, cozy chatting, the buzz of guests, lights, sound and music. A healthy person has no idea how energy consuming all those impressions are. For a minute I have asked myself if I could have prevented this by using my wheelchair, but no. I have mainly sat and sitting upright is an activity where especially the muscles of the upper body are overused. I just sit there among the guests, but I start to notice that I actually can no longer afford to listen, to be enthusiastic and that even answering and having conversations takes too much effort of me. I need to rest. Now. And actually I just want to go to bed.

Now I look back the day after, I had such a great day and (apart from the fact that most guests are aware of my illness) actually it is not visible on the outside that something is wrong with me. Only when you know about it. You could say that I can squeeze my hands how well I recovered from all of my flares and that I can live quite normal with some adjustments, arrangements and plans, right? No, I won’t complain, because I know there are worse things in the world. But still, I’m not okay with the fact that I cannot function normally anymore and take part with the rest of the world. I love weddings and parties, mainly because you get the chance to meet up with people you haven’t seen in a while and keep updated on what’s going on in their lives. Personally, it bothers me a lot that by the time the party is getting started I can no longer be part of the party and the joy of the music. But I also think about who I would have loved to have a chat with and that I am actually sneaking out of the party early. Articulating and finding the right words becomes difficult. Actually, I have saved my last energy to say goodbye to the bride and groom. Nobody sees this kind of things on the outside, but for me, it’s all real.

I am trying to accept that I have a different life now than the people around me and that everything is much slower now. But that my pace is slower does not mean that this also applies to my environment. I can therefore well imagine the incomprehension. At the moment I’m doing okay and I don’t have bad flares due to my medication. But at the same time I notice that my quality of life is decreasing bit by bit. And what will I do with that knowledge? I mean, my physical functions get worse. But when and how much worse? And what can and am I able to do about it in an attempt to put a stop to this? Or do I prefer to stick my head in the sand for a while now because that is the easiest way to go, just because I’m ‘fine’ now.

Just some thoughts of a MS warrior… this was a day with MS.