“Fatigue makes fools of us all. It robs you of your skills and your judgment, and it blinds you to creative solutions.” ~ Harvey Mackay
It’s amazing how your life can change without your consent. I never gave anyone permission to give me MS. I’d be less angry if I had received some type of warning. If I had known I only had 25 years of MS free living, maybe I would have lived my life different. Perhaps I would have saved more money. But I guess everyone can say that.
What affects me the most about MS is the uncertainty of the whole thing. It’s weird how life can be going just fine, then turn for the worst. That terrifying instant when your smooth path changes into a bumpy road. For me, that moment was yesterday.
It was around six at night. That’s the time I usually get tired and fatigued everyday. That’s why this should not have been a big deal.
But it was.
During dinner I suddenly stopped being able to feed myself. I did not have the strength to pick up my spoon. My husband, who noticed I was having a problem, calmly came over to the table. He did his own check to see if I could lift the spoon with his support. When I failed that test, it was like all the oxygen was sucked out of the room. I just stared at the plate of food. Then he began to slowly feed me.
It’s bad enough I have to eat with a spoon because I have trouble using a fork, but wow, I don’t think I’m ready to have someone feed me all the time.
I managed to hold it together to finish eating and even watch TV afterwards. And, thank goodness, we didn’t talk about it because I may not have had the strength to hold back my tears if we had.
Not being able to feed myself has happened before but it was always short-lived. So I am assuming this time will also be temporary. The good thing is, I think I know what happened. For some reason, this particular day I had an extremely busy schedule. You would think energy conservation would be one of the things I am good at by now. But I’m not.
Sitting around and resting drives me crazy. I can’t bare the sound of silence. My thoughts tend to take me to bad places. So I fill that time with errands. And sometimes I over do it. So I need to reassess the task I do in a day so this won’t happen anymore.
We all know we are not supposed to let ourselves get that tired. But I guess even the best of us make mistakes.
Later that night, my mood was really in a bad spot. I sat in bed for a while, then eventually buried my face in the pillow and cried myself to sleep. But in the morning I felt energetic. I was able to brush my teeth and eat some cereal without any help.
Hooray for me!
I just hope I will be strong enough to feed myself for Thanksgiving.
Hi Nicolee,
I am just curiious how you handle it when people say ‘It could be worse?” My bosss nephew has cancer, and he is only 25, so I fully realize his situation sucks. And he is not where my question is coming from, it’s just an example.
Thanks,
Laurie
Just reading this now Nicole. I am so sorry that you had that set back. I am wondering now how Thanksgiving went and hoping that you post soon.
Hugs to you
Marie
Nicole, you didn’t say whether your plate is on the table when you try to feed yourself. It was about a year ago I finally figured out why my arms felt like dead weight when I tried to feed myself. I was reaching onto my plate, which was on the table. It required me to hold up the weight of my arms. Now I put a plastic cutting board across my lap, set my plate on it, and rest my arms on the wheelchair armrests. So much less strain on my arms. Just tried writing my holiday cards the same way, om a cutting board on my lap. It’s so much easier to control the pen.
Have a wonderful Thanksgiving.
Blessings to you Nicole… I understand totally what you are experiencing. My husband has been feeding me for a few years now. I just have to accept that that’s the way it is and be thankful that he is willing to do this. I remember the first time I sat in a drivable grocery basket at the grocery store and I feel so embarrassed. What if my friends saw me like that!?!? Truth be told, they didn’t really notice as hugely as I supposed! In general, I Believe that most people are more concerned about the shoes they have on or the outfit they’re wearing or how much they weigh! Acceptance is the hardest thing about this whole MS journey. Love you friend!
That question of “what if this is permanent? ” is one that comes up for me often. We can only hope that the more times things to be temporary, the more trust we will have in our bodies abilities to bounce back.
Wishing you a wonderful Thanksgiving. I am thankful for you and your post and always being so honest about the sometimes ugly truths.
Just when I think I’ve got the balancing thing down, MS lets me know that I don’t. Frustrating and scary. But so glad you woke up energized a new and ready to go!
Hand/fingr control issues have been plaguing me, too. I’ve been doing a lot of “hold it using just my fingers” self-feeding, when the spoon/fork control wanders off.
I spend a great deal of time doing mantra. If you’re just gonna sit/lie/whatever there, saying a mantra on the unity of God or strength and love, smooths things over. The “Shema” of the Jewish faith (“Hear, oh Israel: the Lord is God, the Lord is One”) is a good place to start, if you don’t have a favorite of your own. (Jewishness not required to say the Shema.)
Your current state well, yes indeed sucks. Yet it will show you something that you need to see. What is it? Who can say? But when you see it… you’ll know.
Blessings!
Robert, the Shema has been my mantra for years now. I find it very grounding.
The people have voted… this is a good mantra. It has been going around for millennia. It works. Wonderfully!
I really feel for you, Nicole. Although I get moments where feeding becomes hard, my problems are more lower-body related.
A few years ago, I learnt to cope with my over-active brain by focusing it on writing. Yes, there are still bad days when I get over-whelmed, but I have a schedule that is less tiring. Of course, what works for me, won’t work for someone else.
Blessings and positive thoughts in your struggle against the MonSter.
Have a wonderful Thanksgiving Nicole — make time to rest so you have energy to enjoy the holiday, eat as much as you want, and continue your journey. Thank you for sharing your experience with us. Sending you love and light.
You will be, Nicole! I really appreciate your writing as I have been working to welcome MS into my reality for the past few years. You are strong, honest and real. Three important traits on this bumpy road we travel. Happy Thanksgiving.