From MIA to TMI: I’m Back Spilling MS tea (and everything else for that matter)
Back To Reality
September’s here, and welcome to Pumpkin Spice and Get-Your-Shit-Together season. First stop, physio. I never feel better than after I’ve seen Emran, my osteopath, except for last week when Emran told me I have tennis elbow.
“Cool,” I said, “something sporty.”
“Not cool,” Emran said. “Your arms are weaker every time I see you. If you don’t do something about it, you’re going to be in trouble.” He then gestured to my rollator and reminded me that without functioning arms I won’t be able to walk. Rude.
I’ve been ghosting the gym for longer than I care to admit and I’m mad at myself for letting it get to this point. MS means I don’t get to do everything I want. Ever. With a limited number of Available Hours, I’m constantly making choices about where to spend my energy and what deserves my attention. Saying no to one thing means saying yes to something else and if I only have energy to work or work-out, I’m choosing work every time.
I’ve been rationalizing my neglect, because I’ve been on a wait-list for intensive physiotherapy, and figured I could get back on track once my spot in rehab opens up; but, I’ve been on that wait-list for over a year now, and as much as I feel like the healthcare system sucks, I kinda feel like I suck too. I can’t fix healthcare, but I can start lifting one pound weights and going for walks again.
Move over January, September is the real new year.
If you’re a regular reader of Tripping On Air, no you’re not because I haven’t posted anything in months—I owe this blog some love and attention. After 8 years and more than 120 personal essays you’d be forgiven for thinking I might have nothing left to say about life with MS or anything else for that matter. I personally get concerned when someone I’m invested in disappears from the online MS community. I worry about their well-being, knowing it’s harder to share MS stories that aren’t some version of ‘look at me, riding roller coasters, eating ice cream, living my best life with MS’.
I miss OG MS blogger Marc Stecker’s Wheelchair Kamikaze most of all, but Marlo Donato is also missing from my MS orbit. I’ve read a number of MS memoirs over the years and Awkward Bitch stands out in my memory as the one that resonated the most. After an extensive but futile search of my home library I ended up re-ordering Donato’s book. I want to read it again to see if it still feels true and helpful now that my MS is more progressive. More than that I want to know how Marlo is doing. Awkward Bitch was published in 2009 and I’d rather be reading the sequel. While nobody owes the world their whole MS story, MS is a lifelong slog and there aren’t enough stories showing us how to navigate more than the first few chapters.
better to re-order the book than risk my life getting on that ladder to find it
I’m not as active on this blog lately because I’m actually working on my own book (Douglas & McIntyre) and have to save some hot goss for my editor. Plus, writing a book is hella hard work, even if it’s precisely the kind of work I’d rather do than work out.
I’m not breaking up with blogging, but you can always keep up with me between posts on Season 2 of the Tripping On Air podcast which returns October 13th. I’m bringing back my friend Alex Hajjar with his dulcet tones and saucy perspective to co-host, and we are ready to throw back a couple of cocktails, connect with you, and dig into all things MS.
ICYMI some of our most popular season one podcast episodes include: The Worst Symptom of MS, Dating With Progressive MS, and The Top 10 Myths About MS. I highly recommend our conversation about parenting with Sitting Pretty author Rebekkah Taussig and you won’t want to miss this year’s Holiday Gift Guide, which has some pretty sick giveaways. You can subscribe to the Youtube channel here. Thank you! Your support means a lot.
And finally, if you still need some Vitamin Ardra, creep the blog and those 120+ posts for intel on cognition, sexual dysfunction, mobility aids, microaggressions, and more. You can always find me on social media, and I will be speaking at an in-person event in October, here in Toronto; so, watch my feed for deets on how to attend if you happen to be in the 6ix.
Any other September resolutionists out there? How are you getting your shit together this fall?
Stay cool, Trippers. Summer’s almost over.
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🤣 I was sidetracked looking at those beautiful bookshelves and that awesome ladder. My mind was going on about how the hell you make it up and down that ladder and then I noticed the image description under the photo and I nearly lost it! It feels so good to have an out loud laugh. Thank you for being you – I can hardly wait for the book and will definitely catch your next season’s podcast!
Thanks for reading, Sue! Glad I could make you laugh!
First time reading you blog!
Not sure where I got the link but I found you!
Gonna check back posts. And your podcasts.
Thanks
Welcome! Thanks for checking it out!
Here’s an autobiography you might want to check out: “Pleasure and Pain: My life” by Chrissy Amphlett – and my best tip for building strength and flexibility when you have MS is get on a pilates reformer with a one-on-one instructor. Forget about the group classes in a studio – it’s changed my life and my body. Turns out I have abs and internal thigh muscles. Who knew?
thanks for the tips!
Oh man! So glad you are back! I was so grumpy when I couldn’t find any updates. Yes I miss the same other bloggers too. I’m so glad you are going to have more podcasts too. Bring on the topics! How about clothing favs for MRI machines? I could share some of mine as I just had 6😃! Stay brave out there😎
MRI’s are a great excuse to justify splurging on cozy loungewear. I also like to bring my own earplugs (when I remember), because the hospital-issue ones don’t quite cut it.
Thanks for your blog and fresh post. Good to see you back. “It’s all good!”
Awkward Bitch was the first book I read after being diagnosed..that was 2014, by the way. I LOVED that book…and I wholeheartedly recommend it…and I don’t think you have to be a newcomer to the MS world…any book, article, blog, podcast, YouTube video, website…you get it…that makes me feel “normal”, understood, and cheers me up a bit is well worth my time…and that includes you, Ardra. Take as much “time off” as you need. I’m sure I speak for many…we’ll be waiting for you when you come back.
Wonderful to see your new post + exciting news about your book! As always you speak what I feel. I too miss Marc’s insightfulness, as well as a few others that have helped me feel less alone on this journey. Marc was kind enough to take the time respond to me to keep me going. I am grateful for souls like Marc, you, and other MS bloggers. 🧡
YES! A book in the works! I will read it, promote it, and I know I will love it because I love anything you write. And as far as getting strong goes … I gotta admit I have been procrastinating with the best of them (the best of them being you), and using every excuse to avoid lifting one pound weights each day and doing the physio exercises given to me when I got discharged from the hospital, 3 hospitalization’s ago.
So yeah, let’s make September the new January. My muscle wasting is bad, and only getting worse. So thanks for owning up to your own BS, so I can own up to mine.
As always I love you, and everything you write. Thanks for this 🙂
Kim
Thanks Kim,
It’s not easy. I figure putting it in writing, publicly might make me more accountable. Plus I’ve been reading Dr. Gretchen’s new book and she makes some pretty compelling arguments.
I miss you.
Thinking of you, Joe.
Ardra,
You are the funniest, most adorable, a bit irreverent MSer I know, or I think I know you because you’re transparent in your refreshing and delightful writing. I’ve had MS for 65 years. Different generations-same MS, that’s different too! My book “Multiple Sclerosis Success Guide:12 Tips to Energize Your MS Life” will be published in November 2023. Coming blog: “Judigail Jabbers: Laughter, Life, Love.”
Wow, what a fantastic accomplishment. I will keep an eye out for your book. Thanks for reaching out and for your kind words.
Welcome back! You were sorely missed!
I’m glad I found you and will delve into the blog and podcasts. Looking forward to the book. I’m working up to starting with a specific Neuro yoga group which I hope is good for strength and flexibility.
Hello Ardra. Wheelchair Kamikaze and Awkward Bitch are 2 of the best things in my ms journey. You are another. Swank and OMS are pretty cool too. Would love to be in Toronto when you speak but sounds a bit ambitious. Might go to Vancouver in 2025 with some buds for a huge sober party. I know, probably not your thing no cocktails and all, but you never know. That too is a bit ambitious, but I trust my buds. Dad died about 2 yrs. ago and I moved in with Mom. My ms continues to progress in the wrong direction ever so slowly and I am not one to make resolutions but for you, my dear Adra, I will resolve to continue putting one foot in front of the other to see what comes next in this adventure of life. Thank you for letting me trip with you.
Love, Johan
Thanks for reaching out and for sharing your story. I hope to meet many Trippers across the country once the book is published.
Sober hangs sound pretty good these days. More and more I feel like having MS means I’m already one (or three) drinks ahead. #ImNotDrunkIHaveMS
Loved the update. 3x at Shock wave therapy & my tennis elbow was gone. Here’s to 🏋🏼♀️ JK
Using my lil’ dumb bells. I’m going back to work in the classroom in a new wheelchair.I’m getting worse but not quitting
Keep moving! xo
Glad you’re back! I love to read about a cool MSer. Can’t wait for your book. C (Australia)
Ardra, you have inspired me in many ways throughout my MS existence. I can’t wait to read your book! Which leads me to tooting my own horn a bit. Please take a gander at my second book about living with multiple sclerosis. Hope you get back on track soon.
https://www.amazon.com/Letters-MonSter-Continue-Multiple-Sclerosis/dp/B0BZFG5182
Yes! Lisa! Big congrats! And thanks for the reminder When will this be available on Kindle? I find it so hard to read whole books on my laptop.
Well thanks for reporting.
I had just discovered your blog and read every one .
I was so worried that this stupid MS had silenced another fighting soul.
Should have known it wasn’t the case but just me always thinking the worst… that might be an MS thing too I don’t know. I’ll blame it on that. September is shaping up and showing signs to be the best month yet. I’ll get your book when you’re done. I like reading stuff I can relate to. Tell it like it is. Thanks again.
I did read Richard Cohens.
I read it too, and followed his blog for awhile, but Cohen has also fallen off my radar.
Que bien Ardra !!..Que alegría leerte de nuevo !! Te he echado de menos !!.. Encontre tu blog hace un par de años de forma accidental ..y me encanta!!!!❤️ como me siento reflejada en tus experiencias y la forma de verlas. Y no tan solo identificada..sino lo más importante ..es q me siento acompañada !!..Estoy más cerca de ti ..que de mi vecino..y eso que vivo en España.. Gracias !!
Muchas gracias por leer y por estas amables palabras 😘
Glad you’re back!! Love all your posts, blogs and podcasts. The things you talk about are exactly what I need to hear. Looking forward to your book.
Yay! Happy to see a new post! September has the Jewish new year (Rosh Hashanah), so your weight lifting resolution timing is perfect. I’m also beyond excited for your book!
I can absolutely relate! And I f-ing hate MS. But u are so right… we need to do what we can to keep moving and try get stronger. Trying to stay positive-blah-blah-blah… some days are easier than others to be positive. U have motivated me to get up off the couch and go do my FES bike. Thank u!
So great to see/hear you back.
Welcome back! I’ve missed seeing you in my feed. I too have to get back to exercising and gaining more muscle.
Honestly, my exercise lately has been getting my house back in order after having our master bathroom remodeled with a walk/roll-in shower. It is amazing how much one room being renovated can put the whole house in disarray. Dust, noise, subcontractors in and out…. It has been exhausting, but, happily, is finished.
Thank you for your update. I look forward to your podcast returning in October. And, now have two more books on my must read list.
Take good care and enjoy your strengthening arms and legs!
YOU ARE SO BRAVE, I LOVE YOUR TRIP.
DO WHAT YOU HAVE TO DO NOW.
I follow you since 2 years ago and you inspire me so much.
I living something like MS but isnt. After a big surgery from Cavernoma in tall cerebral, sorry i dont speak very well im from MEXICO. And after 5 years im still fight it. I have y own rollator by acre, for you and I want a rollz now for the trips. You inspire me to get ot from my house ad get fun and enjoy. I start to love my new life, everything is possible, in different ways.
I wish you the best ALWAYS. And enjoy the journey. I will follow you on Instagram.
GO ADRA!
Hola Marisol! Thank you for reaching out and for these kind words. 😘
We all missed you, I thought the same as the above comment welp that latter is going to be a mission.
Right now, it doesn’t feel like Fall (Autumn here in the UK). It’s still hot and I still need a fan blowing over me to sleep at night. There is so much to worry about – climate change, pollution, am I doing enough to reuse -recycle-reduce, politics in the UK (technically I’m on strike) and back home in Canada, politics in India (my country of origin), whether using my Canadian passport to enter India will mean my being arrested as a pawn in “hostage diplomacy”, etc. Then there are spells of dizziness (is it a symptom or just that I got out of bed too quickly), forgetfulness especially of words (is aphasia back or is it old age), new lesions on the latest MRI (my neurologist threatens me that she won’t be responsible if I don’t start taking DMTs), thinking of my riposte to her that I’m taking metformin which promotes the production of myelin. Too many thoughts. And I’m alone.
I’m new to following you. Not new to MS (8-ish years), but definitely progressing more in the last few. To try to keep as strong and mobile as possible, I work out with a personal trainer twice a week. We do our sessions virtually, then she comes to my home once a month to change up my program. It’s easier to schedule and less expensive than a physio. I have had a physio sit in on one of our sessions to determine/confirm that what we’re doing is appropriate. Just an idea for you.