“Sufferers of depression have ‘episodes’ the same way those who suffer from multiple sclerosis do. It comes, wipes the floor with you, and then somehow returns you to the world. But it comes back.” ~ Michael Redhill
If you want to make sense of living with MS, don’t look at me. Nothing I attempt seems to work. I’m constantly spending my days falling in the deep end while trying not to drown. I like to believe that everything is all right. But in my heart, I know its not. And that reality is starting to surface more and more.
The other day, my hands stopped working. I just couldn’t move either one. No matter how much I tried I got no results. Nothing. They were dead. I’m afraid to admit this but that wasn’t the first time my hands didn’t respond to me. It’s a nutty pattern of sporadic instants of not working then working again. And it has occurred more than once this year.
The first time it happened, I told my doctor about the incident. At the outset, he didn’t say anything. We just quietly sat in his office. His silence was so loud. After clearly thinking about what to say, he gave me an answer to why it might have happened but didn’t give me a solution to stop it from taking place again. Ultimately, he recommended an MRI and physical therapy.
Since that doctor’s visit, I continue to have problems with my hands. And luckily, after a short period of time, I would always regain control.
But this instance was different. I had no movement for minutes. Where as before, it was seconds. I sat on my couch and stared at my fingers as I tried to mentally reposition them. But nothing happened. I just sat there looking down at my hands resting on my lap in curled up fists while an episode of Ellen played on the TV in the background. I was waiting for everything to go back to normal. But after about a minute, I became nervous. My hands stayed that way for so long, I thought they would never move again. For those few moments I was in the devil’s chamber. I could feel the panic crawling under my skin. I began to think of all the things I wouldn’t be able to do anymore. My mind started reaching for every horrific scenario available.
But then suddenly, my fingers began to wiggle. My mind cleared and a few seconds later I gained movement in my hands. The weird part was I didn’t react. No, I didn’t cry. I wasn’t happy and I wasn’t sad. I didn’t even tell my husband. I just sat on the couch and continued to watch TV.
I guess I’ve been living with MS for so long and have been through so much that nothing surprises me. I’m not going to say I wasn’t scared, because I was definitely petrified. But I will say, I was not surprised.
Nicole, you’re not the only person struggling with the unpredictability of MS. That’s not meant to minimalize what you’re going through. On the contrary, I’m just saying it to remind you that you’re not alone.
And I think you’re really brave to admit that it scares you.
I am so thankful for this site. Sometimes it feels very lonely. I just want someone to ask me “what actually is MS”…but the dont.
I’m sorry you’re experiencing this, Nicole. I can well imagine how frightening it is to lose the connection with your hands. My mom started losing the use of her hands when she was around 60, and within a few years had no use of them at all. She could still walk just fine, but needed help with everything. She lived with his handicap for 20 years, and it was a HARD life. I have no muscle function from the chest down, but that’s nothing compared to what would happen if I lose the use of my arms and hands.
Praying you and I both can at least maintain that one last piece of dignity.
My new saying is “of course this is happening.” Jan’s optic neuritis has left me with partial field vision loss in my L eye and my hands and arms are now more clumsy. I took a fall the other day out in my yard and my german shepherd came to my rescue and helped me up. Such a good pup!! But!! I was embarrassed, which is considering my level of disability, is quite irrational, but it really humiliated me. I told my daughter about it and she said that me feeling embarrassed was not proportional to reality lol. So, my sick chick humor says, of course i fell ( but between you and me, i was still humiliated). Wishing you well, Miss Nicole and thank you for being so honest with us.
Have you tried medical marijuana? I swear by the stuff.
Melissa,
I too swear by medical marijuana. It is amazing how all of a sudden I am able to walk without assistance, my mood is better and I am able to sleep. I still take my Tecfidera, but no other pharmaceuticals. Just too many side effects for me.
As to medical marijuana, what kind exactly do you use? I haven’t smoked it yet but I am certainly willing! What is the name and the type and how do you smoke it?-Do you roll it or do you put it in a pipe?… Thanks, Ann
It’s funny all the little things we take for granted. I remember years ago a poll on an MS web site asking which of the 5 senses we would least like to lose. The majority said sight, but I went with touch. Losing the intimate way we interact with the world scares me. I’ve had episodic localized numbness, and it sucked, but thankfully, there have only been a handful of moments where I have lost mobility of any part of my body. We take for granted so much of our ability until it is gone. Good luck, and enjoy what you can do while you can do it.
My heart goes out to you.
Your neuro (I presume) show the same thing that got my own MD to give up neurology. Neurologists diagnose, but they don’t treat. Nerves are… their own thing.
Lots of medical stuff relies upon TIME to do its work on stuff. “A tincture of time,” as a dentist once said to me. Not so much for us MSers… things change constantly and nobody has any idea what to do about it. Speaking of myself, ***I*** certainly have no idea what to do. Except to just be here. Or, as Ram Dass says, to be here now.
The only thing about MS that doesn’t surprise me is how often it surprises me….
I am so sorry that you are going through this. I too would be scared – I think anyone would be. Thank you for sharing this with us. I hope your doctor can figure out some relief to help with this.
I think the worst part of ms is the constant low-level fear, or worry, that this sort of thing can appear out of nowhere at any time. i often wonder when i get into bed at night if i’ll be able to get out in the morning.
So well said, Stephen. I live with an almost unconscious fear of “What will I lose next?”
Not at all pleasant – scary if I was in that situation. I get hand pain/aches and a tingling throb, but never that. (Except in my legs)
So glad that the movement came back.
Blessings and light to you.