I Monday Need Tuesday A Wednesday Break Thursday From Friday Myself

saturation point. n. 1. Chemistry The point at which a substance will receive no more of another substance in solution. 2. The point at which no more can be absorbed or assimilated.

This is what MS does to me. It makes me reach my saturation point way sooner than I once did. The point at which fatigue evolves into pain because no matter how many hours I sleep they’re still not enough. The point at which I can’t stand hearing my friends talk because everything they say seems trivial and shallow compared to what’s going on in my mind. The point at which just the thought of typing a few words here drains me.

But maybe if I keep it simple I’ll manage. Short sentences. I can do this.

Holy week was only a four day work week. But on Thursday I woke up so tired I could hardly get up. Dragged myself out of bed while thinking how I was going to pull that off the following week, five days. Not surprisingly, the following week was hard. And this past week. Usually Mondays and Tuesdays are fine, Wednesdays I start feeling really tired, try to go to bed even earlier (I’m currently sleeping 9 hours), doesn’t work, by the end of Thursday my entire body is screaming in pain and Fridays are just torture.

It does feel like torture.

And I’ve grown so weary of it all. Of being chronically ill. All these doctor appointments. I went to my gynecologist to show him my ultrasound results. He was very pleased there were no signs of endo. But then he told me my last cytology was a long time ago and we needed to do another one. I told him I wasn’t psychologically prepared for that. He just thought I was being funny. So my insides got scraped and sent to the lab. It’s not really a big deal. But this past month, with the spinal tap, the blood work, the ultrasound, and now the cytology, I just want to tell everyone to take their hands off my body. Stop all your poking and prodding and nosing around. It’s funny how I went from having a really difficult relationship with my body to considering it a sacred place. Do no harm. It’s imperfect, it malfunctions, but it’s the only one I’ve got.

By this time I really need a break from myself. I start reading fiction again because reading about reality literally makes me sick. I stay away from WordPress and Twitter because if I don’t write about what’s going on maybe I can pretend I’m just living a normal life. I pretend. Monday, Tuesday. Wednes…day…thurs – I know how this is going to end. Fatigue brings me back. Fatigue weighs me down. Fatigue is like a wave slamming me down on the ocean floor. A massive rush of water not letting me breathe. I stay there. My voice sounds distorted from the bottom. So I try to listen to yours. But as much as I understand your struggles as you probably understand mine, we each have very different circumstances and are on very different paths. So I remain utterly disconnected.

I try to connect with my friends again. Of course I feel guilty about finding their conversations trivial and shallow. I feel guilty because I’m being unfair. It’s me who’s not okay. Envy and jealousy creep up because I wish I could be carefree like that. Feeling envious and jealous makes it all even worse. God, I need a break from myself.

I force myself to go to the dinner my class mates arranged to celebrate the end of our college year. It’s probably the last time I’m going to see most of them. I look around. Some are older than me, work late hours, have children, yet they look so fresh and full of energy. I wonder how they do it. I wonder what it would be like to be one of them.

I learn that my final grade was the second best. That obviously fills me with joy, but it also makes me nervous. I fear this is going to tempt me into pushing myself even further regardless of my health. The optic neuritis seems to have been a long time ago. I got used to living with a shadow in my right eye. One gets used to everything. And sometimes it’s for the worst.

My upstairs neighbors are fighting when I get home. They’ve been doing that a lot lately. I can’t stand to listen to people fighting. I spent so many years hearing my mother and sister yelling at each other day after day to the point of almost physically assaulting each other, and what for? People fight like they have so much time in the world it’s okay to waste it like this. But who knows how much time.

I put on my ear plugs, an old trick from those days, and shut the outside world. If only there wasn’t a whole inner world ready to make itself heard. I know I do this to myself. I burn myself out just by thinking about all there is to do. I give myself tasks. Spring cleaning. An idea I had for World MS Day next month, never mind if I don’t have the skills to put it together the way I envision it. All the books I want to read, fiction and non fiction. The movies I want to catch up on and the pictures I want to take as soon as the weather gets better. There’s also that exhibition I’ve been meaning to go to, oh and that festival. I try to keep myself busy but I wear myself down just by planning it. What am I afraid of? Time. I’m afraid there will never be enough time. I consume myself just like time consumes everything else.

I used to tell a friend of mine to get more sleep. He goes to bed really late and thus looks tired all the time. But he says he stays up late because he can’t stand the thought of coming home from work like the day has nothing more to offer. I get him. Needing 9 hours of sleep, there’s really not much time left for me to do other things besides work. Weekends are spent resting and doing house chores. That not only depresses me but it also sends my mind spiraling down craving a different life. If only I wouldn’t pay such a high price for cutting down on sleep one or two hours here and there.

On Monday I will see my neurologist. It scares me that the hospital called me before I called them. “Doctor wants to see you about your test results. Can you stop by on Monday?” They’re usually so busy and careless about their patients that it can’t be a good sign when they call us. If the doctor thinks I should try a new MS drug, I will go through the whole process of changing meds again, side effects, close monitoring and all. So I guess I won’t be able to get away from myself any time soon. No forgetting, no pretending I’m not sick.

Just wish me luck.

8 thoughts on “I Monday Need Tuesday A Wednesday Break Thursday From Friday Myself

  1. You have so much insight and courage as displayed here.
    Sometimes escaping into fantasy is the mind’s best defense, and way to stay sane. I relate to a lot of what you describe, but like you said, still there is always a disconnect. I don’t know what it is about illness that makes us feel so much more isolated, but it really does… I really appreciated that you wrote this. Hugs.

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  2. Hey, fatigue is common among MSers. Have you tried taking Vitamin B12? This is a natural energy booster. What works best is if you buy the sub-lingual type which you place under your tongue, it absorbs into your body much much quicker. Good luck!!

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  3. This is brilliantly described. So familiar! I envy the energetic people too, it’s only 4 months since I haven’t been healthy and I can still remember the feeling. X

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  4. I’m often like your friend who stays up too late, relaxing or exploring whatever interests me, but I would be better off with more sleep, because sometimes I get drowsy at work in the afternoon. I didn’t realize you worked. Work can be tiring for people who don’t have MS, so I can sort of imagine, with the help of what you’ve written, what a challenge it would be to work and have MS. I appreciate you sharing this. Do take time to enjoy fiction, and whatever you need to do to take care of yourself. Wishing you good luck!

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    1. I’d probably be like you and my friend if it didn’t take such a toll. Yes, work has been a struggle, not only because of the debilitating fatigue but also because MS has been giving me vision problems and most of my work consists of reading. I’m going to have to come up with a solution as soon as my situation is more stabilized and I find the mental energy to make big decisions. Thank you so much for reading.

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