Shout Out To Everyone Who Didn’t Go Outside Today.
Shout out to everyone who didn’t go outside today. Or yesterday. Or tomorrow.
While I’m at home asking ChatGPT to clarify whether I’m a hermit or a recluse, The Banker lives a whole life outside of our apartment just to come home and find me flaked out on the couch where he left me. (TB: “Actually, you were still in bed when I left.” Rude.)
I left the apartment exactly once this week. My sole outing ended with a 350 metre walk that Google Maps estimated would take me all of 5 minutes. A ridiculous underestimate. I can’t remember the last time I walked 350 consecutive metres, but 5 minutes is the approximate time it takes me just to put on socks.
I’d thought about getting an Uber, but a last minute text from my ego told me it would be embarrassing to take a ride-share such a short distance. Home was just around the corner and I should at least try to make it on foot.
A triumph or a tragedy–depending on the mood I’m in when you ask me–my journey took 50 minutes and included 3 breaks where I sat on my rollator as passers-by stopped to ask if I was okay.
Despite how wrecked I’d felt when I got home, I gave myself props. I’d gone out and faced the world. I’d been (kind of) productive. Uber might have been the smarter choice, but I spent zero time judging myself for doing things the difficult, inefficient way.
Two days later I had plans to venture beyond the walls of my apartment again. This time, for my weekly adaptive horseback riding class. I was exhausted. My MS’y bowel was causing me distress and pain. Sometimes listening to your gut means knowing you can’t trust your gut. For the second week in a row I ditched my date with Scooter and stayed home. It was the right decision but it didn’t feel that way.
Never mind that I have valid reasons for canceling. Canceling regularly leaves me feeling like a bit of a loser, a word that’s almost too ugly to type. I’m not in the habit of negative self-talk, but I never feel more sorry for myself, than when I’m ditching plans and trying to remember the last time I left the house.
Maybe loser is a slur that cuts precisely because of what’s true about the word. I don’t actually believe that having MS makes me a loser, but MS definitely involves some losing. Of abilities. Of experiences. Of sleep.
It occurs to me that the cycle of making plans, canceling, then feeling guilty and lowkey pathetic could easily be broken by not making plans in the first place. But that doesn’t sit right either. Wasn’t it Tennyson who said, “Tis better to have made plans and canceled, than to never have made plans at all”?
If feeling pathetic comes from not measuring up to expectations, the simple solution is to set more realistic expectations. Still. It feels like a lie to tell myself I’m adjusting my standards instead of lowering them. It might not be obvious to the casual observer, but MS is extraordinarily hard work. Even a lower bar can take considerable effort to reach.
Preemptively refusing to commit in case I might later disappoint someone has just as much potential to disappoint. On the other hand, making plans is optimistic. I just need to decide that showing up most of the time or even some of the time counts as success. If I can give myself points for my intentions, for not completely checking out, and grace for however many times I need to cancel last minute, maybe I won’t feel so bad.
This is the part of the post where I direct you to the projects I’ve been working on. The receipts that prove I’m still in, and of, this world. (Even if I didn’t need to leave my apartment to accomplish anything.) I hope you’ll check them out. As for me, I have big plans for the upcoming long weekend.
On the pod – ICYMI
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OMG this was so me this week, and truthfully, many weeks prior. Today I feel like all of the energy was zapped from my body. Oh, I went outside for about 45 minutes to play ball with the dogs. I sit in a chair and the 2 that play brought me their ball alternately. When I threw one of the balls and hit the edge of the gazebo, I knew I was done. Recliner, here I come! Better days are
coming. At least I keep telling myself that.
I am grateful for my dog every second of every day! Thanks for reading and for sharing your experience!
While I have “only” been diagnosed with Fibromyalgia, not MS, I relate to this 100%. I am 76 and alternately am conscious of having lived 20 years longer than my mum did, but not coping well with new restrictions and depression
I DO love reading your blogs and podcasts! They always give me a mental boost. Unfortunately, my MS is severe and I have extensive disabilities. I hate to read about your struggles but I thank you!
Thanks for this note Cecelia. It helps to know we’re not alone.
Is it allergies or just the long days? I have felt hermitty also lately. Good to see everyone supporting each other. I have been accomplishing more reading. Thursday Murder Club Mystery series has become a favorite fun light series. Highly reccomend it:)
Books and dogs make indoor days better. Also wine.
Amen to the wine
I love Thursday mystery clib books too. Hope everyone gets well needed rest and strength. Better days ahead.
I COMPLETELY understand! This has and is most definitely me some or most days lately. Two steps forward unfortunately sometimes results in three steps back, depending on the weather ummm MS weather. I’m sure you can relate.
I embrace my good days, like today for example, wanting to be ready for warmer weather shorts & skirts season I shaved my legs with a real razor, and not my electric (which is much safer for me with numb hands) AND miraculously & surprisingly only one little bandaid required. Yay! Mission accomplished! It only took me two hours with numb hands and a few breaks 😉 But I did it!
I do overdo things somedays knowing full well that I will be paying for it later snuggled in my comfy recliner watching Netflix between cat naps. Sometimes it may take a day or two to recoup. BUT, A girls gotta do what a girls only able to do when she knows her limits . Or she’ll be tripping on air 😉
Thanks Ardra! Love reading your posts! Always leaves me smiling and inspired.💕
As I sit here I am conscious of the razor scrape on my shin after I unsuccessfully tried to pull out a long hair!! You put a smile on my face! Haha
Love this, Janet. Thanks for connecting. And you’re right–MS definitely lives in its own climate.
Well said lady! On every level. From owning your feelings, to being blatantly honest about them and for doing the best you can. I’ll always stand behind you. Xox
You might want to stand beside me, or I will take us both down!
xa
Hi Ardra,
My pedometer app tells me that I walked 12669 steps today and 770 on Wednesday. I find that momentum makes a difference. When I start walking if there’s a slow walker in front of me, then I give up and catch a bus or streetcar or subway. Keep trying but also try to get some momentum.
See you soon.
Thank you, Ardra, for sharing this! This has been my week of cancellations: PT, yoga class, a writing conference…I WILL show up to facilitate a writing workshop today. I hope to not frighten the attendants with my appearance. Yesterday I suffered two falls, the last ending with me face planted on my ceramic tile kitchen floor.
Upon returning home today, I plan to imprison myself for as long as my MonSter will allow.
It’s a good thing that I love my house:)
Stay strong. Keep moving.
You make a good point about making your home as welcoming as possible. Best of luck for your workshop today – it certainly sounds like the kind of activity that feeds the soul even if it depletes the body. But please, no more falls!
I really really related to your post. I am recovering from an MS relapse and I just graduated from three weeks in bed to the sofa. I can’t remember the last time I was out of my home and a big deal for me. Is taking my bowl later and doing a loop around my house. I do hope to stop canceling my dentist appointment my OB appointment and I need to get strong enough to go get my MRI of the brain to see what the hell happened and why I’m Relapsing on Ocrevus. I’m officially a full-time hermit
Oh dear. I’ve also been ghosting the dentist.
That’s concerning that you’re relapsing on O. I hope you’re able to rally for an MRI and get some answers soon.
xa
Hi Ardra!
I have missed you terribly! I’m no longer on social media. A lot has happened since I last wrote you. My daughter and I are now on speaking terms. It breaks my heart seeing what she goes through with MS. For her, the new medication came too late to help stretch the time between exacerbations. They seem to help others stretch out the time between symptoms.
I love your emails and vids (hope these new ones are closed captioning for me to see). They help me to understand my daughter as she requests I don’t ask how she is feeling.
Where is that magic wand? You would think with all the advances were made in medical prescription drugs, therein would be a cure for MS. It’s maddening to think that the medical science has been so lax in the area of MS.
Please keep me on your mailing list. I love hearing from you.😘😘😘
Thanks for connecting, Shelby. I’m so pleased to hear you’re in touch with your daughter. I’m also sorry to hear she’s struggling. I recommend watching the podcast with Dr. Oh on smouldering MS. It could help explain her situation. The videos have the option for captions and you can always find the transcript on this website under the podcast in question.
I haven’t been as active on the blog because the pod keeps me busy and I’ve been working on a book.
Thanks again for following and for your warm thoughts.
A.
I’ve been out on my scooter once this week and taken my dog for a drive every day. Plus im going out each day over this long weekend so I can’t complain about MS nonmobility.
But come Tuesday it maybe the couch for the day.
Your ability to articulate the experience for so many folks with acuity and just the right amount of sarcasm and humour always gives me warm fuzzies. You make me feel seen. Every time. ♡
🖤
Thank you for this Ardra, I so relate to it all. Saturday was the first time I left the house in two weeks to go to a BBQ with friends… and even then it was touch and go whether I made it – I hadn’t really left enough time post shower to rest, the weather was a little too hot… but I did it!!! And speaking of hot you’ve reminded me I still need to catch your smouldering MS Podcast🔥
This blog could not have come at a better time. Summer is arriving here in East Tennessee- aka subtropical temperatures. While my (awesome) husband is beginning his summer hiatus from teaching, I try to smile hearing him recount about golfing, water skiing, etc. (I had a real self-pity day and thought where is Arda?!) Hubbie says that I’m always welcome, but we here all understand how these activities- IF it was even possible to participate- would actually place us in MS heat and humidity hell. So I bravely embarked on my own journey to my back deck just so I could watch the birds before it got too hot.
On a side note, Arda, as a lifelong equestrian until MS progression took over, I want to applaud you on your beautiful posture on precious Scooter. I just retired after 20+ years of working at a therapeutic equestrian center. I began as one taking care of the herd, including training them to be ready for their students with disabilities that far exceeded the symptoms that I ignored for too long and that my first neurological visit missed. Anyway, as my job was adapted from the physical chores to using my social work degree and writing skills, I have finally had to retire. An earlier blog that you had written remained with me for a long time. Forgive me if I misquote, but you said that if we only have a few hours of energy a day, then should we be spending it doing nothing but a job. It was taking so much energy just to dress and drive to work; I had almost nothing left. So here is to redefining my once hard-driven and badass physical life. I miss my horses so much, but I’m now venturing into my creative side in between trying to fill out the tedious SSDI application. Thank you so very much. You are changing lives. God bless you, Kimberly.
Hi Kimberly,
Thanks so much for reaching out and for these generous comments. The hour a week I spend with Scooter is the only time I have anything close to good posture.
Best of luck with your new creative initiatives! Finding purpose is critical to living well with this disease.
A.
I have used five different mobility aids during my journey with MS. I started with a cane, then proceeded to a walker, followed by a foldable mobility scooter (Luggie), next was a regular mobility scooter, and now I use a power wheelchair. As for getting out of the house, the folding mobility scooter and regular mobility scooter were the best phases. I was strong enough to transfer in the restroom and the scooter enabled me to cover more ground. I still get out in my wheelchair, but I can no longer transfer on my own so it’s a more limited excursion. It’s been a somewhat gradual transition, but sometimes I miss being able to get up and go out like I used to.