Fatigue

fatigue

I get monthly treatments for my MS: apheresis (plasma transfer) every month, IV steroids most months, and Ocrevus twice a year.

Yesterday was the day I made my monthly visit to the apheresis clinic where I have the procedure done. I’ve thought of the whole plasma transfer thing as kind of a macabre, modern-day date with a vampire, the major exceptions being that it doesn’t involve my neck, and what is removed is replaced. For those of you who have followed this space for a while, you may remember me describing the process a long time ago. For those of you who haven’t, or may have forgotten and are curious, you can refresh your memory here.

The reason I bring this up is because one of the lovely symptoms MS can bring to the table is fatigue, and I’m not talking about the feeling tired and run down variety. No, the kind I am talking about is the bone crushing, soul-sucking, quasi-paralyzing kind.  I’ve read about how this can affect people through various articles and blog posts, but never experienced it for myself. Until yesterday, that is.

Now, it is not unusual for me to feel tired and a little run down after the procedure, particularly once I get home. In fact, this is something I feel all the time, but it is manageable. I might feel like I’m walking in molasses, or that my head feels like it is full of cotton, but it’s no worse than having a bad night’s sleep. But for some reason, yesterday was different.

It didn’t start out that way. I drove to the building site of our new home once my procedure was done to help K remove some of the slush that had settled onto the floors. The roof is up but the structure is not yet fully enclosed (more on that in a future post) and we have had a really strange winter so far (more on that too!) where most of the storms have involved a little snow, followed by sleet, then freezing rain and/or rain. Such was the case Wednesday night, but that was followed by sunny skies and fifty degree temps in the afternoon, and we wanted to remove what melted or plopped onto the floors before it re-froze.

K had done most of the work by the time I got there, but I started to push and scrape what I could find out of the structure when it hit.

The first sensation was a wave of fatigue so strong that I became a little nauseous, so I slowed the pace down. As we left the site ten minutes later, it felt like my feet were stuck to the floor, and I felt very woozy. The normal cotton in my head was replaced by thick sludge. I never said a word to K because she would not have wanted me to get into my car and drive home, but it was less than a five minute drive, and it never felt like I was going to pass out.

Once we arrived home, I struggled to get my muck-boots off, then proceeded to the rocker-recliner. Once settled, I leaned back, closed my eyes, sunk into the soft leather, and my body felt like it weighed 1,000 pounds.  It felt as if I was literally glued onto the chair. I wouldn’t lift or move my head, could barely move my arms or legs, not that I wanted to, and even moving my fingers felt like a overwhelming chore.

Although my eyes were closed, I couldn’t sleep. I heard everything going on around me, but it felt as if I was in more of a trance-like state: part of me was present but another part of me was in never-land. The experience was more weird than alarming. I stayed like that until it was time for dinner, when I peeled myself off the recliner, and trudged over to the kitchen table. I was suddenly ravenous once I saw the plate of pasta, shredded cheese and vegetables, inhaled it in less than five minutes, had seconds, and began feeling a little better.

Afterwards, I did a couple of chores, but the fatigue started setting in again. So I announced to the room that I was done for the evening, dragged my sorry ass up those fourteen stairs, took a shower, and shuffled into the bedroom. Once comfortable, I turned on the television, queued up something on the DVR, pulled out my vape stick with the MMJ, and took two long pulls off it instead of the normal one. Hey, I figured feeling supremely stoned would be a lot better than what I was currently feeling, and I was right. Consumed by what I was watching, I forgot all about the other stuff. A few hours later, I was ready for sleep, closed my eyes, and had a long, uninterrupted, dreamless sleep. The fog hasn’t completely lifted as I write this, but it’s a pin-prick compared to yesterday’s sledgehammer.

I don’t know if this was an anomaly or if it will become the norm. The one thing I did not do before the procedure was eat much. Other than coffee, I didn’t have any breakfast and had a can of soup for lunch, which I thought would be enough. I’m guessing that yesterday’s experience may become a once in a while thing, and we’d test that theory under normal circumstances next month. But March is one of the months where I get the Ocrevus in addition to the apheresis, which brings a completely different host of symptoms, so we’ll have to wait for the time after that to see if this almost-paralyzing fatigue occurs, assuming I remember what it felt like.

Today is a new day, one in which the steroids-induced hiccups have arrived and will plague me throughout the day and night, becoming worse and more frequent as the day gets longer. If I’m unlucky, they will make it hard to fall asleep or wake me up throughout the night. I hate those little bastards. But we do what we have to do to avoid a date with the dreaded wheelchair.

Besides, I can always double or triple up on the vape stick if it becomes intolerable. That always seems to settle things down.

 

 

 

Author: Steve Markesich

I am loving husband, a doting father, a Red Sox fanatic, an aspiring novelist and MS advocate. Feel free to check out my stevemarkesich.com web site.

19 thoughts on “Fatigue”

  1. So sorry to hear that, Steve.
    Sending positive vibes your way.

    Speaking of plasma and vampires, and knowing your sense of humor, did you by any chance watch Only Lovers Left Alive about vampires who love each other through centuries? NOOOO? Well, you have to. Now, I’m not into vampires, but this is Jim Jarmush, so it’s pure poetry…and fun (you seem like you need some laughter). There’s a little sth to lift your spirits.

    P.S. How are you feeling today? Hopefully, better.

    Liked by 2 people

    1. Much better! It is only a two day ordeal. Day one is fatigue, like I wrote about, but never this bad. Day two is hiccups, which I hate the most. But I did discover that the MMJ gets rids of them, so maybe next time I will take the day off from
      work and stay high all day long.

      Never heard of that show. Where can I find it?

      Liked by 3 people

  2. Wow. That would’ve been quite an experience, let’s hope it doesn’t happen again. Glad you didn’t pass out on the concrete floor, bad idea! I am a fainter, fatigued, throw up kind of gal myself. Fatigue is not just being tired. I like how you described it. Maybe if people knew what it was really like, they’d quit saying, ‘everyone gets tired!’ How you managed a shower is beyond me! Glad you hit that vape twice. 😊

    Liked by 3 people

  3. This is awful, Steve. I am so sorry you have to deal with this. The fatigue sounds like an otherworldly dose of terrible. I am so glad you have the MMJ! As ever, I am blown away by your ability to handle whatever comes your way, and do it with humor and strength. You are pretty damn awesome!

    Liked by 2 people

      1. I totally agree. People sometimes get freaked out when I make jokes about blindness, but if I didn’t, I would be in a constant funk. These are the hands we were dealt and in lots of ways, we do get to decide how we play.

        Liked by 4 people

  4. Remember when I was trying to explain what infusion day was like for me, your trance like state describes it perfectly. I am happy to report that the “after” of it has gotten better for me the last few times. I at least remember the day, I still have 0 energy though. Hopefully this was a one time thing, if not I hope it moves quickly, just be safe!

    Liked by 1 person

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