Just two days before WalkMS 2016. Beautiful Butterflies has raised $3567 so far. Great job team!
I owe a big thank you to Greg without him this wouldn’t be possible.
I’m a bit torn this time and didn’t expect to feel this way. Don’t get me wrong. I’m still excited and looking forward to it very much. I look forward to it every year. It gives me something to focus on. A goal to reach. It also helps in some way to be in a group of people who I know are brought together by a common thread. When you see everyone there together you realize you really are not alone. I’m touched and inspired by all the strength around me.
With that being said I have been going through a pretty tough time for over a month now. This is the worst relapse I’ve had in two years. The daily struggles that I already had are 10 times worse. I have added symptoms and worsening of already existing symptoms. My legs are weaker. So weak that standing more than 10 minutes is impossible. I’m dragging my leg more than normal. Washing my hair is just not going to happen. Try washing your hair with limp noodles :). It is bothering me more this time around. I actually ended up in tears while trying to wash my hair the other day. Cognitive issues are playing more of a role this relapse. This was a problem at times already but it has become increasingly difficult. For me this is probably the hardest part of living with MS. Not being able to walk and things like that are hard. Really hard but if I have my mind and can still express myself I feel a little less like I’m losing myself. I’m really having a hard time finding my words these days. The words are there. Right there! It’s like a cruel game. The wheel is spinning in my head with the words and I’m trying to make it stop on the one I want but I can’t. When I can’t get the word out I just stop or walk away. Never even finishing what it was I was going to say. The sad part about that is it’s usually not even noticed by the person I’m speaking to. That I ended the conversation without finishing my thought that is. I’ve also noticed that I have started saying words backwards. I didn’t think anyone noticed but my mom called me last week to check on me. My dad had told her I was slurring my words and he was having a hard time understanding me. So there it is. It’s not just something I know any more.
I know with the decrease in strength, fatigue, and vertigo I’m not going to be able to walk the whole walk this year. It’s not the end of the world! I know it’s not. I almost feel ashamed for feeling a little sorry for myself. I guess it’s just really sinking in how much things really have changed the last 2 years.
I’m tired. I’m tired of being tired. I’m tired of always being strong. I’m tired of putting on the face that everything is ok all the time. I’m just tired!
I feel better now. I just needed to get that off my chest.
It still can be and will be a great event. I just need to focus on the positives and there are many positives.