Mixed Emotions

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.

 

 

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25 thoughts on “Mixed Emotions

  1. Go see your doctor, dear. I was like that two years ago, and they gave me two years left. A different medication worked a miracle. I was emotional, had word problems, lassitude (it was to thick for fatigue.) Go see your doc, and enjoy the walk.

    Liked by 1 person

  2. I am actually glad you posted this,for several reasons,1 reminded me to get wheelchair & 2 i am so glad you finally voiced how you really are feeling! Its ok to not feel fine all the time! Last but not least…if anyone has a problem with it they can deal with me when i get there tomorrow! Lol! You WILL make the whole walk!if i have to crawl on my knees with you on my back!ha!ha! I can just see us! Bet we would make the news! Love you girl!

    Liked by 1 person

  3. You read my post today so you know I’m standing in pretty much the same sandbox as you. MS is a shitty disease not just the physical symptoms but the mental ones too. I feel for you. I’m wishing you a moment of relief an ease to the day and a rainbow in your sky. What you managed to raise is amazing be very proud of your accomplishments.

    Liked by 1 person

  4. MS is a disease that forces us to FIGHT! You have the strength and determination to live your life. You will never quit, you will never stop your fight. You raised much needed funds for MS research. This tells us that you will kick MS to the curb. You will walk proud!!!!

    Liked by 1 person

  5. It is difficult to focus on the positive when you feel so terrible but try. I suffered from a concussion last year and kept losing my words too. I know how frightening that is. It might be a side effect from medication. Sending you prayers for strength and recovery🙏

    Liked by 1 person

  6. I really commend you for managing to continue to blog, and live without feeling totally hopeless. I can only imagine the pain and mental torment you go through everyday, and I just want to say that I’m sending you loads of courage and strength, and am holding all fingers for your walk. Well done to you, you are a real warrior! I can take a leaf out of your book. Thank you. x

    Liked by 1 person

  7. “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 said these exact words almost a year ago. I do not have MS but have known people with it. The most insidious part I think, (as an outsider mind you) is one day you appear to be fine, the next you can’t move. Don’t feel guilt over not participating in the walk. Be as healthy as you can, concentrate on yourself for a while. It’s okay to be tired. Good luck.

    Liked by 1 person

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