Will I ever stop freaking out about MS progression?
I haven’t written much lately because I wasn’t sure I had anything nice to say and we all know the internet is no place for negativity. The thing is, I’m going through a bit of a thing. A crisis maybe, and a graduation of sorts, to a new level of disability. After 15 years it’s time for me to start using a walker on the regular. I guess this is MS progression. And somehow there’s still part of me that is utterly stunned by this. 15 with MS and though it feels like forever, this has been a relatively quick trip to Walkerton (even as I realize there are sadly, many who’ve reached this town even faster).
I’ve only just gotten used to using a cane and it’s time for a walker. Well, a rollator is what we’re supposed to call them now. And if the cane has taught me anything, it’s that there’s no going back. At least with MS, progression tends to be permanent. Mobility aids stick around until a new level of suck is reached and a more advanced assistive device is required. It’s that whole graduation thing but with less pomp and more circumstance. For there will be no keg party, no drunken make-outs and no prom dress at this grad. My only diploma is a bump in my EDSS score. Nobody wants to stay up all night celebrating this milestone. Although drinking until I barf does seem rather tempting right about now.
For several weeks as I waited for Rolly’s arrival (thanks ridiculously slow health care system for giving me ample time to emotionally process all this), I was able to see the bright side. I told myself a Rollator will afford me more freedom. Greater endurance. A cool basket to put stuff in.
No big deal.
But then a week ago, in the middle of all this healthy acceptance and well adjusted adjusting, something switched. I found myself assigning all kinds of meaning to this situation, leading me to freak out over a cheese plate and a pitcher of sangria on the balcony. The sudden change in my perception was so unexpected, I knew it had to be poisonous. But like the boozy fruit juice in front of me, I couldn’t stop myself from picking it up and taking a big sip of hysteria. Call it a walker or a rollator or whatever you want. Turns out needing this level of assistance just to get around is totally a BFD.
Like always, The Banker did his best to calm me down but I was having none of it. He countered each of my anxieties with hopeful reassurances and hunks of baguette smeared with brie. He told me for the thousandth time we are in this together and insisted his life is at least a million billion times better with any version of me in it. At least. He urged me to try the pâté. I remained unconvinced. He poured more sangria and that helped, but I can be very convincing, and finally I managed to make both of us cry. Somehow we finished our drinks and all the charcuterie and by morning I could breathe again. I’d purged all the grief from my system. I was ready to accept this breakup with independent walking and move on.
Or so I’d thought. We all know the first breakup never takes, and the next night I found myself staring at the ceiling at 3am thinking about what comes next. Trying to hold it together. Imagining the worst and not comprehending how I will possibly cope. Because the very, very worst part of all this is What comes next?
It’s always what comes next.
The next night I lay awake doing some random made-up math on how much time I think I have left. This was tiring because I’m not good at math, but not tiring enough to put me to sleep, so I got up to hang with the dog. Not surprisingly, she didn’t have any sage advice. She slept next to me, not judging, but occasionally waking to engage in some questionable self grooming. Ugh. I mean, clearly, she has her own problems.
Then after three sleepless nights I decided not to take any chances and chased a zopiclone with a generous glass of red wine. Trippers, this is not a substitute for medical advice, okay? This is a blog.
I slept better (sort of), but was still one more teary meltdown away from turning the corner. The one where I ugly cry and insist I’m not strong enough to deal with this. The one where I panic that I’m running out of time, and sob about the unfairness of it all, convinced my best days are behind me. The one where I conclude I am not okay. Because NONE OF THIS IS OKAY.
So. Much. Drama. Barf me to death. So I’m freaking out. Again. Sorry, everyone that loves me or has to be around me. I know this gets boring. But does anyone take this in stride? (No pun intended) It’s not spilled milk. The reality of MS is that not everything gets lost at diagnosis and grieved over all at once. It’s like getting a new disease over and over again.
I thought I was cool about this and then it arrived and I started to hyperventilate. The dog is in the picture to distract me from how fucked all of this is.
Though I’m still not really sleeping, I am starting to see my way out. Not because my body is stronger or my disease is slowing down. But because I can’t stay in this darkness for too long. And something I read last night seemed to click.
LOVE WHAT YOU HAVE
(thanks Andy, sorry for all the swearing)
We’ve all heard this before. Don’t hate what you don’t have. Love what you have. Somehow this is different from Be Grateful For What You Have, which sounds more like a bossy threat. Like, you’d better appreciate what you have before it gets snatched away – and isn’t that just the epitome of MS? Where any ability you have can be taken in a heartbeat? It can be challenging to be grateful for what seems like it’s only on loan when you know there’s a creepy repo man lurking around the corner just waiting to make his move.
Love what you have feels different. If you love something you don’t just acknowledge it with a polite thank you. You have to take care of it. You have to be kind to it. You have to do something – it’s not passive. Love is a verb. Could I give my MS a hug instead of a side eye loaded with vitriol? Love is patient, love is kind…that’s from the Bible, bitches, so you know it’s good. If I can find love for what my legs can do for me today, can I be patient and kind to them?
As I struggled to get to sleep last night I started making a mental Love What I Have list. I tried really hard to not take anything for granted, to not make this a ‘love what I have left’ list. I thought about The Banker and the dog and the tremendous comfort their love for me creates; the big obvious haves that go to the top of my list. Someday I will certainly lose my pup. She’s 11 years old. Suddenly I realize that knowing this doesn’t make me love her less. I don’t spend the time I have with her consumed with anxiety about what life will be like without her. I will deal with that later. That is a pain and a loss for Future Me to deal with.
Encouraged, I kept going with this list. I wanted to identify more than the things outside of me. I wanted to find love for the things that are maybe not the same as they once were. I wanted to find love for the things MS is trying to steal from me.
I decide to love that I got dressed and into bed by myself. I decide I love that I am independent. I resist the urge to frame this as ‘still’ independent because it implies impermanence, it implies ‘for now’. I love that I am independent. Period. That used to mean Girl Power but now it means I can walk to the bathroom by myself. Make coffee. Put my socks on. It’s an effort but I somehow manage to feel this without bitterness. I am truly thankful I can walk at all. And as tempted as I am to dwell on how desperately I want to walk forever – thinking about it takes me away from what I have today and puts me in an unknown, scary, future place that seems dark and impossible. It’s so nauseatingly throw up in my mouth cliché but I don’t have the future, I only have today. Sometimes I think I’m selling myself a bunch of Pollyanna bullshit but the only thing more exhausting than convincing myself of some Pollyanna bullshit is spiralling into despair. It’s better to decide I in fact have enough green grass right now. It’s time to pick myself up off the floor.
I don’t want to fight with my legs. I don’t want to resent them or feel frustrated. I want to love them. I want to slather them in lavender scented l’Occitane and whisper Thank you. I know you’re trying. It’s not your fault. You deserve beautiful shoes and regular pedicures.
Remember what I said about the very, very worst part of this? That is Future Me’s problem.
Maybe this graduation does deserve a party. After all, we mark transitions with traditions. So. Who wants to have a glass of Pommery?
30 thoughts on “Will I Ever Stop Freaking Out About MS Progression?”
Yep, this step seems to be part of the journey for all of us. Thanks for writing about it. Smile Fierce !!!
Perhaps celebrate the graduation with a "Man, my body sucks!" party? Is no joke. I have monthly "Man, my body sucks!" get-togethers with 2, her health permitting sometimes even 3, girlfriends I met in my neuro treatment centre. (Strictly speaking they're called "Boah, ist mein Körper Scheiße" parties as I live in Germany) We usually drink (too much) wine or mead, watch crappy movies, complain about the movies, complain about our sucky bodies – we're aged 24 – 30, and are all already in wheelchairs courtesy of MS – and then we laugh, or cry, or both. Mostly laugh though. These evenings are very cathartic, and help us to cope with what you and I both know to be a potentially distressing disease. Making the best of things can be hard.
As you said. Loving what is, rather than what still is, makes a big difference. It's easier said than done, but I recommend trying not to overthink things. It's important to make room for and allow for feelings to be what they are. I don't mean to come across as patronising, so please call me out if I am. I'm just trying to say that it's OK to be sad, frightened, angry, and more. This whole damn illness turns feelings in to a wild roller-coaster ride. Sometimes I find it best to just throw my arms up and scream it all out. I hope you start feeling a little better soon. x
This is an amazing post. As has been stated – this illness is a wild roller-coaster ride. But I
applaud your bravery for posting, and putting into words what many of us simply think in some
confused way on a daily basis. So – I think I can speak for others with or without MS reading this blog ~~ that we'd like to send you the very love you're talking about! How's that?!
Feel better, Barbara (NY)
Every time I read one of your blogs it is an experience to be treasured, but this entry was particularly powerful. Thank you for divulging such a personal, harrowing experience in order that we could all share in the wisdom it contained. As if that isn't generous enough, you gave us laughter too. It seems the darker things get, the funnier you are able to get. That is remarkable and, of course, poignant. You are right, though: this whole situation deeply sucks, and I'd much rather we were all denied your wonderful writing because you didn't have MS at all. All I can say is you are indeed doing amazing things with the cards you have been dealt, you are one of a kind, and you are loved. Sending genuine love your way (seconding Barbara Bononno).
Thank you very much for your generosity in sharing this. You are doing powerful and generous things with the difficult hand you have been dealt. Sending genuine love your way.
Thank you for this great blog! I cannot imagine what it must be like to have MS, and deal with it all everyday, but I was diagnosed with Mitochondrial Disease and I have significant mobility issues. I just received my first power chair (I am still walking -mobile, but need the chair for long outings). You so well describe the emotional turmoil, especially the 'laying in bed awake while husband is snoring away' thing. Sometimes I find that finding a way to "quiet my brain" can be the hardest thing.
Thanks for sharing!
Your monthly get togethers sound so very healing and supportive. How wonderful that you have found each other and my heart to all of you for having to deal with this at such young ages.
Bonus points for the German name of your group. Makes it sound fancy and official. Like, I bet you guys have really good snacks.
Thanks Barbara. I'm definitely feeling the love.
Thank you Emily. Writing this has been surprisingly cathartic. Love right back at you!
Thanks for your note Allie. It sounds like there's a lot we can relate to.
In terms of quieting the mind, people keep telling me to meditate and I know they're right but a glass of wine is just so much more satisfying.
Best wishes to you with your new wheels.
I look forward to your posts of MS chapters which we share, thank you. Please know I get it. Your post came at an opportune time as tomorrow I go to review wheelchairs. I went from my artsy canes to an ugly walker (btw yours is quite nice!) and now to a wheelchair which has so many moving parts, angles and color choices. It was easier for me to decorate and furnish my house than to make this final selection. With this manual wheelchair I will be able to continue trying to get those nice muscles in my shoulders…that is the upside. To help me move on with a smile I quote Ekhart Tolle "Realize deeply that the present moment is all you ever have. Make the Now the primary focus of your life." It's also ok to have a crying meltdown sometimes. I will keep you posted- rigid or folding? Karen (MA)
I vote rigid 😉
Thanks Karen. I think the other perk is having super soft feet.
Good luck with your purchase. It is staggering to me how many options there are. I'm personally trying to decide if it's cool to personalize the walker/rollator or if it's the opposite of cool. If anybody has any ideas, please post pics!
I say pimp that thing out! It is part of embracing it, making it something you are OK with. After all, its just an accessory. Sure, it sucks that we have to get around using these things (canes, walkers, wheelchairs) but that is only because we compare ourselves to what is "normal". If everyone needed one to get around, we would just accept it and move on. Call it Pollyanna if you like, but eventually crying about it gets old and we need to figure out how to pick ourselves up…
Hey Tripping! You are such an eloquent writer… You've taken a tough story and brought a lump into my throat but left me wanting to share that bottle with you; In celebration, not in sadness but in joy for the beauty you bring into peoples lives. I'm so glad The Banker brought this blog to my attention. I will be looking forward to future posts my lovely friend. Miss and love you very much. God Bless, LK.
Thanks Lucas. Miss and love you too. Working on getting a plan together to come and see YOU October 2017.
Agreed Jeff. I want to see pics of people's tricked out rides!
thanks for this! I've had MS for >20 years and its great to hear your thoughts and frustrations about your journey.
I've graduated from all you just said and am oon the what comes next stage…I have to have a power chair now…I can't walk nor stand up…and to top it all off..my husband was my biggest help…physically and mentally…and he passed away 6 months ago…so I feel like I am finished…period
Somehow your blogs always make me laugh and cry at the same time. They are so raw and honest I feel like I'm right there with you, feeling your pain and sharing your wine. I actually didn't know a walker and a rollator were the same thing. I'm at the stage where I feel like this about the possibility of a cane. I know it sounds cliche but it does help to hear how others go through this. Thanks for sharing.
Thanks for reading Adrian. I'm glad you found me!
I'm so sorry for the loss of your husband and for what you are facing. This disease can be so lonely. I hope you will reach out to friends and loved ones for support.
I lost my mind when I started using a cane. I wouldn't be photographed with it, I hated it. It seems so silly now. It's amazing what we can get used to.
Hang in there Traci and thanks for reading!
I've had so many times in the past couple weeks where I have spiraled down the path of freaking myself out. Glad I'm not the only one who does that! I'm getting a power chair apparently, so if you've got any ideas to make that look cool and less awkward, send them my way. I really don't want one, but Comic-Con season is coming up & I'm sure I'll appreciate it at that point (or so I'm told anyway).
The thing I've learned about freaking out, is that I always calm down eventually. There's a quote I love…"…everything will be okay as soon as you are okay with everything. And that's the only time everything will be okay." (Michael Singer)
Pimp that power chair and have a blast at Comic-Con!
I’m a newer follower and going through and reading the older blogs. I reread this one a lot! This spin on the disease is so important! The part about knowing that the pup will probably ‘graduate’ in 10 years doesn’t make you love him less, really resonates with me.
I appreciate your writing and your style. I always tell people that sarcasm is my native tongue, so, I totally get your humor!
I get that you don’t want it, but you’re a Beacon of Light for the totally unbalanced among us. Good writing makes you cry. I cried inside, I have to keep my act together today.
You’re very appreciated.
I always thought I’d still be popping out of the lake on one ski till I was 70. MS changed that and so much more. One day at a time. My mantra is “be kind to yourself”.