The Longest Day

One of the first posts I wrote when I started this blog almost 16 years ago touched upon the treatment options that were available for MS patients, and how the one I chose kicked my ass. 

I didn’t start off with the Apheresis treatments until I several years after the onset of my symptoms, but I did get Cytoxan infusions, which is a chemo drug, less than a year after I was diagnosed. For a period of about twelve years, I endured one lost weekend a month where I couldn’t plan or schedule anything because I couldn’t get out of bed. When when the opportunity arose to switch to a drug called Ocrevus, I jumped at it because I only had to get that infused every six months and welcomed the opportunity to reduce my trips to Zombieland from twelve times a year to two. 

I don’t remember how I felt after my first Ocrevus infusion, and every time I was scheduled for the next one, I couldn’t remember what to expect. Maybe that sounds odd, but when you are on a monthly routine you know the drill like the back of your hand. For instance, when I get the plasma transfer and steroids, I know I will want to sleep as soon as I get home, and day two will be hell because I will be racked with hiccups from the steroids all day long, and those take a toll.  Sometime time during day three, I’ll start feeling normal again. 

I’ve been on the Ocrevus for three years now, and every time a treatment is upcoming, I have the vague notion it won’t be bad as the Cytoxan, but never seem to remember what to expect. Well, yesterday was Ocrevus day, and I suspect I won’t forget what to expect the next time.

Fatigue was the main issue yesterday because that always happens with the plasma transfer. I took a nap when I got home because I was exhausted but stayed as up as late as I could afterwards, fearing I wouldn’t be able to fall asleep or would wake up at the crack of dawn. Silly me.

After getting up twice during the night to pee from all the fluids I was given, I opened my eyes sometime later feeling like my body was aflame with fever. I glanced at the clock thinking, and hoping, dawn was about to break and was chagrined to see it was only 3:30AM. 

So, it’s 3:30, I am hot as hell and my body feels like a limp dishrag. I want nothing more than to roll over and go back to sleep, but sleep doesn’t come. I am obsessing over how tired I feel and know that hoping sleep will soon come is a pipe dream. Everyone in the house is still asleep, so I toss and turn for about an hour before I give up and get out of bed, thinking that maybe if I am up and about for a bit it will tire me out and I’ll be able to go back to sleep. 

Part of the reason for posting this is because I have nothing else to do, and to document what to expect the next time: crushing fatigue, flu like symptoms without the fever, but alert and aware enough not to be able to stay in bed and sleep all day. By the time 7:00 AM had rolled around, I had already been up for over three hours, had read my morning papers on-line, played a few computer games, chatted with a friend, and sat in my rocking chair wondering what the hell I was going to do with the rest the day. I decided to crawl back into bed and was fortunately able to snooze on and off for a couple of hours. 

Sucks, doesn’t it? Yet I still consider myself fortunate because I don’t suffer from one symptom that plagues most people with MS: pain. I was reminded of that fact chatting on-line with that overseas friend while I was waiting for the sun to come up. I figured this person was awake because their local time was five hours ahead of mine. The last time we chatted I learned this individual was recently diagnosed with MS and was in the process of receiving Avonex injections. I had nothing else to do, and reached out to see how things were going only to discover a world of hurt: muscle pain, stabbing backache and a headache that felt like a railroad spike is being pounded into their temples and skull. By comparison, I have nothing to complain about.

The lesson here for anyone who is recently diagnosed and is mulling treatment options is that you may have to try different things before you find what is right for you. If something isn’t working or the treatment is worse than the disease, change it. And if your doctor doesn’t listen, change doctors. Reach out to others with MS and ask questions and join a Facebook or on-line group if you don’t know anyone (there are plenty). Research all the options on the internet. Try to take some control over your fate, even though it is very difficult to do if you are suffering.

As for me, it’s a little later in the morning and I still hot as hell and feel like I have the flu but don’t have a fever. I am tired and so lethargic that getting out of a chair feels like an achievement, but I can’t sleep. The day is still very young, but all I want is for it to be over. I hate being bored, see how many hours are left in the day, and am pondering what I can do to pass the time.

I suppose I can suck on my vape pen for a while because feeling stoned is better than feeling like this, but that wouldn’t be the smartest thing I’ve ever done. Hopefully there will be something good to watch on demand, Netflix, Prime Video, Hulu, or the some of the other channels I have forgotten about. Otherwise, I will be clock watching.

Tick, tick, tick.

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