RSS

Tag Archives: fatigue

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. 😉

 
3 Comments

Posted by on April 12, 2016 in Life with MS

 

Tags: , , , , ,

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.

 
Leave a comment

Posted by on March 15, 2016 in Life with MS

 

Tags: , , , , , , ,

It’s the little things

The Piano Guys concert was awesome! Steve, the cellist, is a god!
The venue that we were at I have to say was nothing spectacular. I really wish that we could have been closer to the stage. Their expressions while playing are the best. And there is just something about being able to successfully play a cello like a drum that is fascinating to me.
I knew that the music was going to be fantastic. They played my favorite songs while I sat there in awe. What I wasn’t expecting was how great their showmanship was. They are funny! And so comfortable on stage. I’m really hoping to get to see them again. Maybe I’ll use it as an excuse to finally get out to Utah, their home state. Also home to some of the most breath taking landscapes on the planet.

In other news; This whole having the infusion in 5 1/2 weeks thing is BS. 4 weeks seems to be key. Maybe even 4 weeks and a couple of days. But an extra 10 days is no good. I have been so totally drained. And of course when I’m tired, I’m cranky. Unreasonably so. Armed with this knowledge I am trying to just let things roll off my back. People pissing me off may just be my brain saying “take a nap!”. So I won’t discuss all of the things that are pissing me off right now. I’m going to just sit back, listen to my newly acquired Piano Guys CD, and wait for Tyler to get out of school. 🙂

 
 

Tags: , , ,

Good Day

You know that song? The one with the line “You don’t know you’re high until you’ve been low”? Well, truer words have never been spoken. And since I feel “low” most of the time, the “high” is incredible for me! Today I have been dancing and singing around my house cleaning up a storm. Literally. An awesome storm rolled through. There is nothing like a good thunderstorm when you are feeling good to just make your day.

I am ridiculously excited about having the eye surgery. I still need to do more research. After my appointment this week though I have a little bit of knowledge:

  1. They sew the new cornea onto your eye. That sounds super scary.
  2. My Doc refuses to put me to sleep for the procedure. Oh and yeah I begged. Warned him that I may screw it up if I am coherent. He was confident that I would do fine. But again… SUPER scary. All they do is give you local anesthetics and a mild sedative. AAAHHH!!!! Ok, don’t think about it. The end result is too important!

I also realized another benefit. I could wear make-up. I know that that sounds strange, but try putting eye make-up on without looking. This is how I have to do my left eye. It never turns out good. So I just don’t do it. But when I have it professionally done for events I look HOT! So….. I’m excited about that. 🙂

At my last appointment the doc said that the virus isn’t gone yet. (I knew that) So he has me coming back in another 2 weeks. We are all hopeful that it will be gone by then. If it is then he is going to put me on a pill to make sure that it stays away for the next 6 months. Then we are hopeful for an August September surgery!!!!! It will be my birthday present. 🙂

Now I need to read up about recovery and what not.

Oh and other super good news? The surgery could/should totally cut the virus out of my eye! I may never have to deal with this again! *Insert me jumping up and down*

I decided that since we call MS the “MonSter” I’m going to refer to the virus in my eye as the Beast. That might make future blogs a little bit easier.

 

Tags: ,

Exercise

Oh no! I hope I didn’t loose you by saying that awful word. Sometimes it sounds worse than cursing.

I’m not sure why we make that word feel so heavy. Like it is attached to everything that we hate to do.

So I am going to say that I just moved more. Significantly more.

But I am not going to chew your ear off about the awesome activities that I have been doing. : )
Instead I thought that I would share the benefits of it.

I stopped taking my Celexa! Yeah! I know that you are supposed to ween yourself off and what not. In my defense though it started as an accident. I left my meds at mom’s. 4 days later I’m back at my mom’s meds in hand. Then I stop.

“Why am I taking this?”

I know why I used to take it. But I feel great. The only reason that I started taking it was because my Neuro said that it would help with the fatigue so I would have more energy. Well last year proved that that wasn’t true. Then I kept taking it because I know first hand that when you stop cold turkey you turn into a royal bitch. Well I did. Then I started having anxiety. So I was actually asked if I would like to up my dose of Celexa. I said No. Emphatically No!

Then last week I really started moving a lot more. It was definitely forced on me. Right now I am on kind of a stay-cation.
(I actually hate that term. There is no such thing as a vacation where you don’t change your surroundings. You are all fooling yourselves. But I did change my surroundings. I’m at my parent’s house. So maybe I can consider it a real vacation?)

Well my mom is like the energizer bunny. Never stops moving. And while she understands if I am too tired to do something she will definitely push me to try.

Since right now I am sitting at the hospital waiting to be hooked up last week was not what I would have considered a great week to start moving more. But move more I did.

It started begrudgingly. But after my first act of moving (kayaking to be specific) I felt amazing. I got to my mom’s on Monday morning dragged the kids to swimming lessons ( where they did great by the way) and I felt like crap. I of course did not share this news. Then my mom informed we that we were taking the little ones kayaking. I was not thrilled. Be she seemed so adamant about going and so excited to take the little ones, who have never been, that I couldn’t talk her out of it.

Well I have to tell you that when I got back (we had a blast by the way. My little bear is awesome!) I felt great! I felt like I had energy and I was in a good mood. Like a complete 180 from that morning.

I took that experience and repeated it every day. Not the kayaking, but other things. And had the same result every time. It’s like the new super drug! Who new! And it is unfailing. So far it has worked every time!

So this is my advice;
If you feel like crap, for whatever reason, go do something. I don’t mean in your house. Go out. Take a walk, go to the park. Anything. Just get moving. All though I do think that a big part of it is being outside. Not positive about that, but an exercise (not that word again!) tape at home just doesn’t sound the same.

 

Tags: , , ,

Not ready for round 2 yet.

I refuse to admit that I have been doing too much!
I love being busy. Every day that I don’t have something to do is like torture.
That being said, the brain is starting to revolt. It’s just the normal fatigue/dizziness/left arm and leg weakness. But I think that I have to take today off. So as much as I miss my friend John and love his fireworks and the party that he throws every year I am sitting this one out. : (
Last night was wonderful! My husband ran the fireworks display in my town. He did a very good job. The town hasn’t had fireworks in many years. So being able to bring it back was a lot of fun and I think that everyone really enjoyed it.
Tomorrow is yet another party at the in-laws. I have every intention of drinking wine and floating in the pool all day! I can’t see how my brain could have a problem with that.
I hope everyone is keeping cool out there and enjoying there weekend!

Oh and can’t forget the big Wimbledon Men’s Final tomorrow. I don’t know who I want to win more! I love Djokovic more definitely, but Murray is a Brit. He so deserves to win at The All England Club that half of me wants to see it happen. The other half of me wants to see Djokovic bury everyone he plays. So I guess it will be a good match either way. Everyone keep your TVs tuned to ESPN2!

 
Leave a comment

Posted by on July 6, 2013 in Life with MS

 

Tags: , , , , , ,

New Normal

It seems strange to have to cope with something like this. But coping is what I’m trying to do.

When I was diagnosed 3 years ago, 4 years ago? I can’t remember. I thought fine, I’m going to have to live with these flare ups. I won’t know when they are going to happen or what they are going to be. I also don’t know how long it will last or if it will ever get better. Or how bad it is.

But you know what? I was ok with that. I would just keep living my life and when a flare up came I would deal with it. I wouldn’t psych myself out and worry about what could happen. I was just going to live in the here and now and be happy that I am flare-up free.

Then my biggest concern, and what I thought was going to be the only thing that changed my day to day life, was the shots. I was certainly not pleased with having to give myself a shot every day for the rest of my life.

Even that though, I said, ok this isn’t too bad. I can still go about the rest of my day like normal. I kept attributing my bouts of fatigue to the new holes. It seemed that that was really the only way that I could even tell that I had them.

Then once I switched to Tysabri I didn’t have to deal with the shots anymore. I was (and possibly still am) JC Virus free. So I didn’t have to deal with possible impending doom. Then I started to attribute the fatigue to my meds running out. Which probably isn’t all wrong.

But now I need to come to grips with my new reality. I need to stop thinking, ah, this is nothing! I’m fine. Because this is actually something. I have a degenerative disease that is eating away at my nerve endings and there is no cure.

I’m not trying to sound like I am down on myself right now. I am not. The Celexa is still keeping me quit happy.
But I am now coming to the reality that yes indeed my life has changed.

My every day life.

All of the support groups and what not say “I have MS, MS does not have me.”

That is not true for me right now.
It is time for me to tell those holes who’s boss. Maybe I’ll take some lessons from my husband. He seems to be able to get everyone to do whatever he wants. I want to be able to do that with my brain!

“Damn it brain! I will give you a nap but then I get the rest if the day!”

It’s clearly a work in progress.

 
2 Comments

Posted by on May 15, 2013 in Life with MS

 

Tags: , , ,