Feeling MS’y: Trapped In A Bad Multiple Sclerosis Day
| Get me the hell out of here. |
I feel MS’y; which is to say, I feel lousy, useless, beat. Like I’ve been mother-fucking voodooed. Of course, I have multiple sclerosis and it affects many parts of my life every damn day; but, that doesn’t mean I feel MS’y every day. Feeling MS’y is when you just can’t. It’s the worst of the worst of what fatigue can do to you, and it just shuts you down. Feeling MS’y is what stops you in your already slow, drunk-walking tracks.
I knew this was gonna be a rough day when I woke up at 4:13 am to pee. Not because I don’t always wake up at 4:13 to pee (and at 1:35 for that matter). No. I knew it was gonna be a rough day when, even after lying down for 5 straight hours, I twisted out of bed at 4:13 to find my legs weak, stiff, and straight-up refusing to point in the same direction at the same time.
I knew this was gonna be a rough day when I woke up at 4:13 am to pee. Not because I don’t always wake up at 4:13 to pee (and at 1:35 for that matter). No. I knew it was gonna be a rough day when, even after lying down for 5 straight hours, I twisted out of bed at 4:13 to find my legs weak, stiff, and straight-up refusing to point in the same direction at the same time.
I sighed knowing this was bad news; 4:13 is normally when my stems are their strongest; chilled out from doing nothing all night, with enough pre-bedtime Baclofen still in my system to keep them from seizing up.
Seizing legs is 8:00 am’s problem.
At 4:13 I can usually make it to the bathroom sans Blanche (my classy new walking stick). But not last night.
I lurched my way to the ensuite, like the graceful goddess I am, and realized it wasn’t just my legs that were uncooperative. My whole body was feeling the kind of tired, that is way beyond tired. I was suffering full on MS fatigue. That underwhelming bullshit word that is all we have to sum up what it feels like to have been visited by a pack of Dementors. Surely the Germans must have a better term than “fatigue” for this soul-sucking vibe; but since I’m too wiped to even google what that word might be, I’ll just stick to what I’ve been using for years, and that is to simply say
I feel MS’y.
Now I’m trying to go about my day, fighting with myself back and forth about the decision to go or not to go to my 2:30 massage appointment. On the one hand, I only need to rally for a few steps to and from the car. Then again, there’s the physical energy it will take to haul myself onto that skinny massage table, or the emotional energy it will take to have the therapist haul my weak heavy legs up for me. And let’s not forget the effort it takes to get undressed and dressed again, and all of this suddenly feels impossible. Sounds pathetic, I know, but putting on pants has become a once-a-day on a good day deal.
The struggle is real.
Figuring out how best to look after myself when it affects others is always overwhelming, and I can’t even hear myself think right now because I’m breathing through my right ear, which is another thing that creeps up when I’m exhausted, and please tell me someone else with MS experiences this annoying af phenomenon, because my docs just shrug their shoulders like I’m making it up. Obviously if they don’t understand it, it must not be real.
So it’s an MS’y day. Which means listen to my body, but not my emotions.
My body says stop, but my emotions say freak the fuck out, you’re never getting better.
My body says stop, but my emotions say freak the fuck out, you’re never getting better.
My body says clear your sched, but my emotions say you’re gonna let everyone down and if you cancel your massage they’re for sure gonna kick you out of the clinic.
My body says have a nap, but my emotions say have a cocktail, it’ll take the edge off, it’s summer, and you deserve it.
My body says good point, but who’s gonna make that cocktail? The Banker’s not home for another three hours and you’re too messed-up to walk to the kitchen.
My body says good point, but who’s gonna make that cocktail? The Banker’s not home for another three hours and you’re too messed-up to walk to the kitchen.
You’ve won this round, Body.
This is Day 3 of this most recent MS slump, caused by who knows what. Did I over do it on the weekend? Yes. But only by old lady standards. Like, I went to the Farmer’s Market on Saturday. It’s not like I picked my own fruit, nor is Farmer’s Market a code name for a rave. On Sunday, I sat on my bum at a stadium for four hours while the Yankees kicked the home team’s ass. And I only drank water.
Even if these tiny attempts to live like a normal have a price to pay, it seems excessive that I should still be footing that bill three days later. And despite all this hard living and partying, I’ve been going to bed early, saying my prayers, and eating clean. It’s just that sometimes, MS doesn’t give a fuck. Or, I dunno, maybe Jesus doesn’t like how much I say the F-word.
So I give in, lay down, and ride it out. I’ve been here before. In the end, I bailed on my basically free massage and laid down quietly in my room for two hours while someone else cleaned my apartment.
I still haven’t learned to meditate, but I have learned a thing or two about tempering my hysteria when things feel dire. Just because I felt like this today, and yesterday, and the day before yesterday, doesn’t mean I will feel like this tomorrow. This is MS.
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You're my little engine that could. Hope you shake the fatigue soon.
This month has been M.S.y for me. It’s been more bad news after another. Your writing helped me to feel less alone with my own thoughts. You know the yelling you do in your head when your body isn’t cooperating. (Especially when your in public and draw stares from Normies). I took a call in public. Luckily on well carpeted floor, because my legs became numb and unstable.
People commented to me on the bus, because I took up a handicapped spot. The person assumed I was taking my disability.
I’m in my forties and I’m in a wheelchair mostly and a walker for really short distances. I feel so scared going out alone. I wish I could say it was the first and only time.
Your article helped to feel comforted about all the stressors and no more spoons. I can’t THANK YOU enough.
❤❤❤❤❤❤ oh man.. thank you needed to read this.
MS Fatigue = Feeling like your tissues are made of chainmail and your brain is made of, well, nothing. Depletion would be a better word, but it still wouldn't quite cover it. Some days, my yoga practice is entirely in bed, and on really bad days, I just imagine it. I do what I can and give no more fucks. People joke about not giving any fucks, but we have to live that for real, or we'll go batshit crazy!
I feel you girl. I got the same thing with my ear. Feels like I'm breathing through my ear. And you're right people don't believe this because it just sounds crazy. That's why I never say it. And I've never been much of a shopper but now I really can't try on clothes because just trying on clothes is exhausting. Now that just sounds ridiculous to a typical person such as my family and my friends. But it's true. I also have another auto immune disease called ankylosing spondylitis.(AS) this is a bone disease which fuses my joints together. The only thing I can really relate it to would be trying to get a old fashion Barbie doll to scratch her own back. Or to bend her own legs and put on her own pants. Impossible. So along with the thousand pound bags of concrete that seem to be attached to my legs I also can't turn my hip in the direction that I need to to put my pants on one leg at a time like everybody else. I love your blog. And I love the way you write. Thanks for putting it all out there and you take care. Karen
It was comforting in a strange way to read your voyage. It's almost as if I could have written it as I'm on the same damnable path.
It sure as hell is. ? sending good vibes. I’m right there with you.
The heat is making me feel enervated.
I usually fly South for two weeks during winter. Now I'm considering flying South, way South for the summer. Like Australia and New Zealand South.
This too shall pass with the coming of Autumn.
I'm actually loving the heat and the sun, making me the extreme exception in the MS world. The heat does fatigue me, but I am extremely sensitive to the cold. Even now, I'm sitting in the shade of my balcony, tucked under a wool blankie, like the old lady I was always meant to be.
Thanks Beth. Thinking of you too.
Thanks for posting. There is a strange comfort, for me too, knowing that someone else is dealing with this. Even if I wouldn't wish it on my worst enemy.
Karen, thank you so much for this note. The next time my legs refuse to bend (so, probs tomorrow morning), I'm gonna pretend I'm Barbie and somehow I think that will make me feel better.
As for the ear thing, I freaking knew this was a thing. I don't bother complaining about it either because frankly, it's the least of my problems, but it's validating to know I'm not crazy. The voices in my ear are just MS whispering to me "I'm still here".
I get you with the shopping. I broke up with the mall a loooong time ago. Now I just order a tonne of stuff online and then get my husband to return whatever doesn't fit/work.
Cristina, I like your system. Thanks for writing.
Thanks for reading!
Thanks mom.
As the partner of someone with MS, I live with MS too. I generally feel that Ardra and I support each other through all parts of our life together and she has helped me in more ways than I even know (and to answer the question: "Yes, I know I’m the lucky one"). But when these MS’y days come up, I feel 100% useless and out of sorts and don’t know what to do or how to help. And help is all I want to do!
As someone who doesn’t typically ask for help himself, and instead just does stuff (I know, my “Honey-do” list is getting bigger), on MS’y days, nothing is too small to request. It isn’t a sign that you’re losing any independence, it is just that there’s a bad stretch of MS’y days and I am there to try to make them a little easier – to be the go-fer, to be the Sherpa, to be the shoulder, to be the "enter whatever needs doing here". I know I can’t take any of the MS away from you, and I don’t always know what to do, but I will shoulder the burden.
Now, do you want 1 olive or 2 in your dry gin martini?
143
The Banker
Way to sweet comment from the banker.
2 please. I'm hungry.
xa
OMG! I’m binge-reading this blog as I just discovered it yesterday (can’t express how grateful I am for it) and I about spit out my coffee when I read “breathing through my right ear”.
This is one of the harder-to-explain symptoms that I struggle with regularly, and I’m pretty pumped to have another way to describe that sensation. Doctors have a way of making you feel like you’re imagining things, and it’s comforting (to say the least) to know I’m not alone!
You’re awesome Ardra!
I’m relieved to know I’m not the only ear-breather. This disease can be such a mind-fuck.
Thanks for following. I love the idea that this is binge-worthy content!
xa
Ear breathing. I just went through two weeks of that. Have had it over the past five years, off and on. Never validated as an MS issue. Now, here I sit with a major case of poison oak on my entire face, including my eyelids. Have not been pulling weeds and MD put me on 11 days of Prednisone. Looks like super hugs and snuggles with my two lifelines ( dogs) has put me in this state. They said – “don’t hug on your dogs.” Oh, or course I can do that – NOT! Just hope the Prednisone doesn’t blow me up too much because I have to fit into an MRI machine on July 5th. Oh – and – Neuro has me taking Prednisone right before the MRI because I am allergic to the contrast dye. Now, I’m going to take a cool shower, slather on some calamine and fix myself a scotch on the rocks – AND HUG MY DOGS!!!!!!!!!!! Thanks for making me (us) feel justified.
You express so well how difficult and screwed up it is to have this disease. I’ve been living with it for 15 years and sometimes I’m still surprised. I’m surprised that I even have it. I’m surprised that I could be this tired. I’m surprised when I still do everything right it still takes me out. I like feeling like I’m not the only one and hearing someone put into words exactly what I feel. Makes me feel better. Thank you.
Thanks for reading, Sherry. I feel exactly the same way.
Thank you for helping all of us. If you haven’t learned to meditate, just take a few calm minutes to focus on your breathing. Slow in & out. It helps me to feel better even if just for a few minutes and I’ll take that. I also get the ear breathing thing too, mine doesn’t hang around very long. It’s not as unpleasant as some things, just odd. Don’t go away, you have a great gift with words. Thanks.
So sorry I feel your pain. I have rheumatoid arthritis. At the beginning I had days similar to this however with great doctors and new medications I am so much better. I push myself everyday to do something physical. I am so afraid of my joints “freezing up”.
To all suffering with MS I wish you hope for less pain.
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I just found this blog and all I can say is thank you. For taking the time. You have no idea the difference reading that post made. I feel ms’y a lot and I love the term! I get so tired of explaining or reminding or just saying…I have ms.
Thanks for making me smaller 🙂 and hang in there and I will too. Mary
Thanks for reading and I’m so glad this helped! Fingers crossed that today is less of an MS’y day!
I meant smile not smaller
Thank you. I’m fairly new to the MS-life (sounds like an MTV reality show….*sigh*). I am feeling weird and wobbly today despite feeling awesome the last week. So awesome that I literally had a moment of denial. Joke’s on me! Anyway, I came her hoping to find a blog post to answer the never-ending and prevailing thought in my head, “Is this an MS thing or……” . Alas, I find this post. So, thanks (NO THANKS!?!) for answering that prevailing question and confirming what my denial-minded brain knew was the answer.
I read your story and it really touched me had me in tears I am battling with multiple sclerosis as well and It’s affecting me mentally physically and emotionally The key to all this is having God in your life and keep praying for healing strength it helped me a lot through all my struggles the Lord has been with me through my fights I will keep you in my prayers God bless stay strong ???❤️
Hi Elizabeth~I agree totally w what you expressed about having God in your life. Someone to lean on anywhere, anytime.
It helps me feel there’s a reason for this madness, be it the people I’ve crossed paths with I wouldn’t have met otherwise bc I’m helping them learn thru my trials or I’m learning a lesson too. It helps me recognize when I’m ‘under attack’ & how to handle it. Plus the ppl like you I’d not have a chance to chat with otherwise. God bless you thru every trial & may they be few. I’ll pray for you anytime you need!
Good human. <3
Thank you , thank you . I have been so down dealing with the 1:13 and 4:35 -and whenever. With the pain and pirate walking it’s a daily gamble if I make it . The FATIGUE!!!!
You have helped so much with the feeling of alone -or when others don’t understand the MSy days .
Bless you .
Noreen
You all help ME feel less alone. Thanks so much for reaching out.
See you at 1.13!
A.
Firstly..I love “Tripping On Air” bc I can so identify with doing so!! Standing still & suddenly tripping over my own feet. It’s bizarre to say the least.
Secondly::Coming out of a full blown bout of FATIGUE-I also identify with the lameness of that word & said as much to my sister, also an MSer. I haven’t been able to think of one better but no body can ‘get it’ like someone who lives every day-every second-with MS. I have since 1991.
I Hate my insurance company who’s fucked me out of the only drug that helped me get thru a day-only bc it’s extended release! Give me a bloody break! Oh ok-so now they took away my DMT-I don’t like the price any better than they do. After getting ‘special dispensation’ I will get it the rest of the year, but first I have to talk the peeps who provide a grant for me to get the drug to give me more money before the grant expires May 15! So, the drug I’m now ‘allowed’ to get-I can’t! Then I have to start again to look for aid! I’m on the edge of giving it up altogether. I’m frequently asked if I think it’s working/helping. How the hell do I know? I’ve never had optic neuritis & gone blind in one eye since the first time which gave me my initial dx-so does it work? I have to wonder considering some of the things my body have done to me over the years. Like when I had vertigo & if I attempted to remove myself from a chair etc, my head became a magnet to the floor. Literally. A freak show! So, I’m about over it. I’m home ALL the time minus going to appts. I am overjoyed I have a husband who takes care of me in all ways, so supportive but doesn’t treat me like a brainless idiot.
I’m bitching away, but much more full of gratitude than anything else~For others who do get the trials, the victories, the support, shares & stories of the oddities that make me feel less alone; for real men; for a place to spill the overload. For Ardra! Thanks girl, for the insight & incentive for me to finally be able to spill!!
Thanks for reading, Gwen. Rant on, sister. We do what we need to survive. I’m glad you find some support in this space.
xa
MS is a bitch. No sugar coating this darn disease. Lately I have had increased spasticity in my legs. Real challenge when u gave to hi the the bathroom and legs won’t bend. Tried Baclofen, but messes with check onmkj bc