Why Is MS Fatigue So Hard To Believe?
Why is MS fatigue so hard to believe?
Fatigue might not be the first F-word that comes to mind when you think about multiple sclerosis (hint: rhymes with suck), but it’s probably the second, and it’s definitely in the top 5 (falling, faking, fear, forgetting; take your pick). MS fatigue is a powerfully debilitating symptom that not only destroys your energy, but has the added magic of making your existing symptoms worse.
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| Fuck MS |
I’ve barely written about MS fatigue, because frankly, it’s difficult to articulate and if you’ve never experienced it, near impossible to understand. Chronic illness or otherwise, everyone feels tired every damn day, and everyone feels frustrated and invalidated in the un-winnable game of Who Is The Most Tired.
But why do I need to prove to you that my tired is the literal worst anyway? That MS fatigue isn’t just tired, it’s crushing, soul-sucking exhaustion that feels like failure at life.
Well, for one thing, I’m bailing on our plans at the last possible minute.
Again.
And I don’t want you to be pissed at me, or worse, stop making plans with me in the first place. MS fatigue is wrecking my week, maybe even my fortnight. And perhaps more than your forgiveness, I need my own. We live in a world where we’re constantly expected to show up no matter what ails us; where most people wear the “I’m so busy” badge like a complaint and a brag all at the same time. Fatigue is the invisible symptom that makes those of us that have it doubt ourselves the most.
But I can’t prove it, can I? There’s no standard test for MS fatigue, and there’s no objective way to measure it, so when I say I’m bagged (cause, really, except for the French, who ever says I’m fatigued?), it’s my word against your idea that maybe I’m just not trying hard enough.
This next-level tired that’s been plaguing me lately, came to a head yesterday. Convinced I’d feel better after working out the muscle tension I’d made worse when my legs had violently spasmed that morning, and happy to have an hour to just lie down, I rallied to get myself to my massage appointment at the clinic that happens to be around the corner from my apartment. Normally I’d walk, but this week I’ve been more effed than usual, so I Uber’d. I specifically Uber’d, because I knew from experience that a traditional cab driver, who doesn’t live or die by passenger ratings, would have been pissed to basically take me across the street, and I was way too emotional to deal with any surly, ableist bullshit.
I asked my student therapist for a modified treatment knowing I wouldn’t have the energy to flip myself over on the narrow table at the half-way point. In fact, I had trouble just getting on that table, and had somehow arranged myself on my back so that my right foot was tucked up under my left knee. When I realized I needed help undoing this contortion, I felt so tragic and pathetic, that I almost cried. Fortunately, I was able to pull myself together, knowing that even a discount student-massage is neither the time nor the place for a proper meltdown.
A scant hour later, as my treatment was ending, I was glad I’d left the house and made what felt like an enormous effort toward self-care. The knots had been worked out, and I was ready to drink my lemon water. Namaste. But when I went to sit up, I couldn’t. Flat on my back and mostly naked, I realized I couldn’t move either of my legs. As I was slammed back to the reality of the moment, I almost cried again. Almost.
A scant hour later, as my treatment was ending, I was glad I’d left the house and made what felt like an enormous effort toward self-care. The knots had been worked out, and I was ready to drink my lemon water. Namaste. But when I went to sit up, I couldn’t. Flat on my back and mostly naked, I realized I couldn’t move either of my legs. As I was slammed back to the reality of the moment, I almost cried again. Almost.
I called the therapist back and asked him to bend my knees for me, thinking that would give me enough traction to push myself up. It wasn’t. With much difficulty, my inexperienced practitioner found himself having to lift my upper body to get me into a sitting position. He seemed at least as uncomfortable as I felt, and barely survived under my dead weight.
If you’re thinking this is the part of the story where I actually cried, you would be wrong.
I pointed out his scrawny arms and told him he needed to hit the weight room. I for real said this, and feel kind of shitty about it now. Kind of. In my defence, he huffed and puffed like he was lifting a bloated walrus instead of a delicate fucking goddess; and let’s face it, MS fatigue makes me fangry (like hangry but impervious to snacks), and I cannot be held responsible for my emotions while in this state.
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| I feel an attitude approaching. |
Rapidly accelerating MS fatigue is my number one cause of mood swings. Fanger, is the emotional impact that strikes when the smallest task feels monumental. It’s the frustration and rage at my own failing body, that gets unfairly re-directed at whomever and whatever happens to be in my way, or in the room. Ask The Banker, and he will discreetly blink twice to confirm this. Go home, PMS, you’re not needed here.
After my massage, I Uber’ed home and somehow managed to take the dog out before falling asleep sitting up, and then waking, only to cancel plans with my new friend Andrea. I rescheduled our theatre tickets for two nights later, because I’ll definitely be feeling better by then, right?
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My 7-year-old son begged me to attend a Mothers and Sons breakfast event at his school next month, and I'm agonizing over whether I'll be able to make it to the event using my walker. Last time I used my cane and fell in the hallway; luckily hubs was there to pick me up. These seemingly simple everyday tasks can become mountains for those of us who have this fantastic disease. (Can you hear the sarcasm dripping?)
Perfectly put. The invisibility of an ailment is almost the worst part of having the ailment. Convincing someone of having something that spends its days eating away at your soul and possibility of happiness, is the proverbial salt in the wound.
Thankfully you have a kick ass warrior spirit that gets you through days like that.
https://youtu.be/NQ8zfRJfUuc
First of all, they should ask you the day before so you don't have to stress about it for a month. Second, breakfast should start at noon.
Good luck Christa. I hope the walker keeps you on your feet.
Thanks for reading April.
Should I request this as my massage music for next time? Thanks Joe 🙂
I love your writings!
Ardra I'm so sorry this happened to you. Unannounced humiliation should also be on the list of MS symptoms 'cause it's definitely part of the game. Amazing spirit through it all for sure.
The picture caption of "fuck MS" reminds me of an event I attended called Muck MS. It was a mudder of sorts. A huge ex-US marine had designed it and took it in his head to chivvy me through the course. He didn't know I had MS. The first thing I had to do was jump into a ditch filled with waist-deep muddy water and try to climb out. At that point, I decided I didn't want to play by his rules. He made me do twenty push-ups instead. When I came to the section where I had to step through car tyres while carrying a car tyre over my head, I asked if I could have a bicycle tyre to carry. I did another twenty push-ups. The last bit was where he expected me to crawl on my elbows and knees through muddy water. I didn't see the point of it all. The ALS ice-bucket challenge was supposed to give you the experience of being frozen in your body. Was the Muck MS supposed to bestow the experience of humiliation on people who were doing it to raise money for the MS Foundation?
The MS Foundation seems to have discontinued the Muck MS fundraisers.
I’m in complete awe that you made it through that, AND did push ups?! I steer clear of any MS fundraiser that involves any type of movement- they all seem extreme even the MS “walk”. Oxymoron . Running (lol) that whole narration through my MS brain was exhausting!
Your spirit never ceases to amaze me. Hats off luv! Man you are one strong woman! And those who are your friends will always understand if you reschedule! As always, love your reads!!!! LH
Tiny tiny exercise seems to help me be less fatigued. But the weather has to be right for me to exercise, nothing above 70. Other I just melt from fatigue.
Thanks Barbara. I'm definitely feeling better this week. I never fully believe it will get any better when I'm right in it, but somehow it always does.
Was this dude the personification of MS? If he later came to your house and put your hand in a cup of water while you were sleeping, then he nailed it.
Thanks Lisa. The true measure of any good friendship is the ability to let each other blow off plans without getting pissy about it.
You ARE a Goddess! Lowen @ livingpositivelywithdisability.com
This is my favourite comment ever.
Agreed! Ardra, you have no piece of MS writing that isn’t exceptional, but this one hit the nail on the head so profoundly! I saved this one for future use, and shared it with a friend and a group of friends.
You are, literally, the best writer I’ve ever read. Thanks for being here for SO many of us. You validate our inability without shaming us into trying harder. I think that’s what most of us need… permission to be frangy You know I love ya girlfriend, my love to the Banker as well.
Wow, thanks Robin. I’m blushing. It goes both ways. Being understood by you guys, helps me process my own disease. Thanks so much for reading!
THIS!!!!
Fatigue is the worst life ability destroyer. Stay with it Ardra. We have no option but to keep fighting. And we all look forward to your blogs. Have a better day tomorrow.
Thanks Bill. This was a repost from last year, so I am happy to tell you that I am feeling better today. And better still, I had a massage yesterday and tho I couldn't flip over on the table I WAS able to get myself into a seated position. One year later that feels like a massive accomplishment.
My MS fatigue came as a side effect to the Gilenya medicine. Once I got off that I didn't actually want to go to bed as soon as I got home from work. Is your fatigue always there or possibly a side effect of a medicine?
My neurologist recently suggested I get off gilenya because it makes me prone to an infection I had finally gotten rid of. She never mentioned the fatigue that has been the main symptom of my MS. I’m glad you said this was a symptom of gilenya. Thank you. I’ll check it out.
I’ve liked just taking a pill instead of shots. I’ve had MS for 40 years. I’m glad I gave myself the interferon shots (started in 2000) for many years. I believe it limited the damage to my brain.
Maybe I’m ready to go off DMTs at age 67. But the Doctor wants me to transition by taking a medication, a couple times, that destroys my amune system. That’s scary. So I’m still on gilenya for a couple months. I just delayed the decision.
The very beginning of this really resonated with me. I detest having to explain why I can’t go at the last minute and disappoint my grandchildren again! My daughter just really does NOT understand and makes me feel guilty, dropping out on her at the last minute! Not only do I have the lovely MS, but I have another invisible disease, Major Depressive Disorder, which I’ve had longer than my MS. I’m 56, single, and just can’t pop up and drive myself to a very busy, overwhelming activity, with tons of people and very limited parking! It would have been nice if my daughter had offered to pick me up so I would have been less likely to disappoint my granddaughters, but I guess that’s too much to ask and I’m really just tired of asking for help! Sigh. Rant over. Just wanted to let you know how much this resonated with me! Thanks!
I have fibromyalgia and Parkinson's so I believe the fatigue must be similar. I'm spending valuable time on the computer to avoid going to the Dollar Tree to buy a graduation card for a graduation party tonight. I've already fallen asleep while typing a few minutes ago. The graduation is at 6 p.m., a time when I am usually winding down. I should take a shower & wash my hair but it seems like too much work. I truly think I understand what you all are saying and I wish our families and friends would, also. God bless us all.
Thanks for reading and for commenting. My husband had the flu a couple of years ago and he was so exhausted and I think in that moment he was able to really empathize with how MS fatigue feels. But the human mind is quick to forget these kinds of experiences once they are over.
6 o'clock is a very tricky time for me too. I hope you made it to the party, and if you didn't that you gave yourself props for prioritizing your wellbeing.
I really believe that they have to come up with another word for it…a better description…a word that non sufferers can’t claim Fatigue and tired just aren’t cutting it anymore! God forbid you say you are tired or fatigued and EVERYONE says ME TOO!! And I want to scream NO YOU AREN’T….not even close. I don’t understand why it is a contest to see who is most tired…good god look at me…I use a walker and a cane…and each and every step I take is a freakin struggle….think about it…you are not even close to my TIRED ��
That's an interesting point. Medications can contribute to fatigue for sure. Another factor is how much our sleep (or lack thereof) can impact fatigue, or exposure to heat etc. There are many things that can enhance fatigue but it is, in and of itself, a documented symptom of MS.
I think we all just want to be heard and understood, but it's hard to 'get it' with MS, unless you actually get it.
So true…sorry for my little rant there….I was feeling especially exhausted and frustrated! So I have come up with a new word for MS fatigue, yet still keeping it in the F family….Fucktigue!! ❣️
My new favourite F-word. Thanks for posting!
I am going through a bad fatigue spell right now and your post really resonated with me. I cried the tears that you held in during your massage appointment! ?
I needed to let that frustration and sadness out and your words helped me do that.
Sometimes feeling like you are continually “coping” takes it’s toll. Time to take a deep breath, cover my puffy eyes with sunglassses (it’s overcast) and feel grateful I can take my dog for a walk. Thanks for sharing, it’s good to feel understood.
“like hangry but impervious to snacks” — I love you! Seriously, Ardra, you’ve explained our fatigue as well as anyone ever could. Your raw anecdotes do so much to help us all make sense of what’s going on with us. Thank you.
THAT IT!!
Ardra, it so helpful to label the feeling that I too feel.
I’ve been/am fangry and frustrated. For the longest time-prediagnosis-I just assumed it was my at-the-time stress inducing job or age. The simple things I use to be able to do and the energy that it takes to do them, just about drives me to the brink of my sanity. So much energy expended to accomplish so little.
Truly, I get that people without MS fatigue just do not “get it”. There are soooo many days I don’t want to “get” MS fatigue and there it is. I just try keepin on, keepin on!
Your posts are the best! So many MS symptoms are hard to explain, but I think fatigue is the most difficult. Tired doesn’t do it justice. Also, when most fatigued, I rest more, so I end up looking less spent – the invisible symptom becomes even less visible.
Frustrating.
Naps aren’t a luxury they are a necessity.
XO
OMG Ardra, I had the same thing happen at the spa last week, but fortunately the aesthetician is a friend of mine and ‘gets it’. That really didn’t dismiss the stupidity & frustration I felt, so I left a really nice review on their site, hoping that the owner and the public reading the reviews would gain some insight into the problems we MS’er experience ! I take every opportunity I can to try to educate about MS ! I’m in love with the term ‘fang-gree’ which with Long Covid has sadly been happening to me on a daily basis at the end of each day. It’s going to be my new ‘ go to ‘ word, so thank you so much.
You are so right, as there is no standard test that defines fatigue, which as a former OT I’ve been pondering so much lately, so I’ve defined it into a three point scale.
1 – FATIGUE which so called ‘ normal’ people experience when they are tired
2 – EMOTIONAL FATIIGUE which we MS’er experience when we have to “ bail on our plans on the last minute “ because our day has been just overwhelming, and
3 – PHYSICAL FATIGUE, when our muscles and our physical body just fail on us.
So I will say to people, I’m really sorry that you’re so tired and to the people who know me I will say I am either emotionally fatigued, or physically fatigued ! It helps my close network understand a little better what’s really going on with me?
Thanks for sharing. I would add Decision Fatigue to this list, and when I’m in it, please don’t ask me what I want for dinner or even what I want to watch on tv, just make the decision for me because I am too exhausted to even make simple choices. I guess Decision Fatigue could be considered a sub-category of cognitive fatigue.
Yay, us 😂 great addition Ardra. I think we’ve solved the problem that no Neurologist could do. Sometimes the patients really do know best.
So now we have an official standard test to define fatigue !
1) emotional fatigue
2) physical fatigue
3) decision fatigue
I am tasking you to write a new blog post in the way that only you can do 🤩Think how a post like that would help all the MS’ers explain what fatigue really feels like 🤣. Food for thought !!
I’m on it!
Thanks Ardra. I look forward to reading it. Those three scales could be rated from 0 to 10