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Recovery

Ahhhh the life of an MSer. 

I freaked my husband out recently. Tears and all. I feel bad about it. Sometimes I feel like I’m loosing it though. Like I literally have no grasp on reality anymore. Of course that’s not why I freaked out. My left foot has been getting worse. I now have to think about picking my foot up when I walk. Curbs and stairs hate me! I haven’t fallen. But every time I walk up or down stairs I picture myself falling and exactly how I would hit the ground and exactly who is around and how embarrassing that would be. But in my attempt to stay healthy and active I am still taking the stairs instead of elevators. This may just be part of my stubborn streak. If something/one tells me I can’t do something then that’s all I want to do. Even if it’s my own body. Even if it’s just stairs. 

I also am very thankful that I am right handed. My left hand no longer has the ability to hold things except in a grasping fist type fashion. Something like a pen or pencil would be out of the question. Coffee mugs by the handle are out of the question. The weakness in my left three fingers is constant now. 

This is why I freaked out. I am aware that MS is a degenerative disease. I thought that because I’m young the lesions that I already had would heal. Or at least not get worse. Now that I’m on Tysabri and my damn immune system can’t get into my brain or spine I thought great, I’ll be ok. I know I’m being naive. Isn’t this how we all want to think though? Now I wonder, is it going to get worse? 

My husbands advice is to get back to being more active. He’s not wrong. I kinda crashed after last month. I really pushed too much. The recovery took significantly longer than I thought that it would. 

Let’s think about that for a second. What was too much for me? I ran 2 book fairs at different schools back to back with a few overlapping days. During this time I also had meetings and events for Board of Ed. Now that’s not any more than a normal person with a job has to do on a regular basis. However it took me a month to recover from it. 

That is what I hate most about this. Take my leg and hand. Give me back the ability to have my crazy full life. I love my crazy full life! 

So back to it. The month is over. Back to running. I miss it. Maybe it will help. You know what they say about bodies in motion. 😉

 
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Posted by on April 12, 2016 in Life with MS

 

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Tysabri or Bust

  
I am attempting to live in my own little world right now. I am craving that hut in the woods.

Some how I managed to set the bar too high. Not somehow. I do what I want, and how I want to do it. That is what set the bar too high. I am blessed to be able to do this. I love everything that I do and I want to do it great. Normally I feel like such a slacker. There are so many more things that I want to be doing, so many more things that I want to be learning! Right now however, I just want everyone to expect nothing from me. Right now I am capable of nothing. 

My infusion had to get pushed back a week. Which I know explains everything. Thank goodness I am here now. A friend of mine posts at every infusion how unhappy she is at infusion time. I don’t understand this. I look forward to my infusion like a life raft. I am terrified of the day that they take me off of Tysabri. 

This thought is what filled my mind on the way here today. Sometimes I wonder if it would make a difference. Do I only notice things that are wrong with me because I’ve already been diagnosed? My whole life I have been the “suck it up and deal” kind of person. I am still that kind of mom. “Is it broken? Are you bleeding? No, than stop complaining.” So why is it that now I am so sensitive with myself? I can still walk, talk, breath, eat, see. I can do everything! Is that because of the Tysabri? Probably. Let’s not think about it, right? 

If I am honest I know that the dizziness and the fatigue are not normal. But is it something that would send me to the doctors if I wasn’t diagnosed? No. Not ever. I’m surprised it did 6 years ago. Of course back then the crap with my eyes and the fact that my face went numb would have sent me. When I think about what I am going through now though, there would be no doctors. 

I feel very, very fortunate with my life. That said, I crave some serious alone time. No responsibilities. No, don’t worry about it Janet will take care of it. For a little while I’d like to be in my hut in the woods. 

Don’t worry world I’ll be right as rain tomorrow. Tysabri is coursing through my veins as I type.

 
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Posted by on March 15, 2016 in Life with MS

 

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