Is it time for bed yet? That was my first thought as I woke up this morning. I glanced at the clock and it was proudly displaying 6:30 AM. That’s way too far away from the sun going down and me climbing back into bed. I yawned, tried to stretch and yawned some more but only seconds passed. Now the clock says it’s 6:31 AM. At least it’s one minute closer. Maybe I can just lie here for another 720 minutes. Continue reading
I woke up this morning yet again to the reality of multiple sclerosis. Sometimes it feels like I’m stuck in the movie Groundhog Day with Bill Murray. Do you remember that movie? Every morning the alarm clock would go off and the same day would begin…over and over and over.
I don’t know when it started for me, but day after day my life became a blend of naps, computer screens, brain fog moments and doctor appointments. Trying something new just didn’t seem to fit into the mix of things.
From the outside everything in my world looked fine. I had a roof over my head, food in my pantry, an internet connection to get online with and friends both near and far, but what couldn’t be seen were the limitations I began having because of MS and the stresses that came with those limitations.
I failed at everything I tried to do. I had a hard time clipping my own fingernails, couldn’t drive safely even to the corner store, ran into walls that weren’t even in my way, tripped on air, forgot appointments and dropped everything I got my hands on. Talk about depressing…ugh! No matter how hard I tried, I couldn’t find the stop button for the out of control spinning chaos that surrounded me.
If someone approached me with even the thought of getting out and doing something new, at that time in my life I had become so defeated that I couldn’t hear what they were saying and would lash out at them for even suggesting such a thing. All I could see were the things I couldn’t do. Those were not some of my proudest moments, but great friends help you get through the rough patches in life, and thankfully I have great friends.
I call them my Push Coaches. They pushed me to see past my limitations and helped me to see that there is always more than one way to doing something. I discovered that the only real limitations I had were the ones I created for myself and realized that trying new things actually made me happier in life.
As weird as it may sound, stepping out from my daily routine brought excitement to my day and became a welcomed change of pace to the day-in and day-out rut I had gotten myself into.
Sure, my legs may not work well anymore, my hands may fumble with everything I get a hold of, and vertigo may keep me from seeing straight, but those things should never stop me from trying something new. I was determined to try something new at least once a day.
At first I did simple things like taking a different route to the grocery store or wearing crazy colored socks. Those simple changes to my day surprisingly made me smile more. After a short period of time I found myself seeking out other things to try like community art classes and volunteering at the local hospital. I began looking forward to the changes in my day.
It takes a lot of courage to get out there and do something new. If I could be your Push Coach today, I would encourage you to step out from your daily routine and try something new. Change your hair color, try a new tea flavor, join a book of the month club, enroll in cooking classes…just get out there and try something new.
Don’t let MS keep you from having new and exciting adventures in life. Besides, you just might surprise yourself and find a hidden talent you didn’t even know existed.
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.
We recently shared an article with our MS community about living life in an MS ‘Bubble’. So many of our community members expressed feeling similarly to the author, Ashley, and feeling like they retreat to a mental hideaway when stress and depression of MS becomes too much to handle. Their responses were amazing, and we wanted to share some of them!
Preferring the “Bubble” to the Outside World
“The bubble is challenging sometimes, but it’s also safe. There are just some days where challenging myself isn’t worth the risk of falling, dropping things, etc. Trust me to know my limitations. I’m not lazy. I haven’t given up”
“Thank you for giving the perfect title to the place where most of us escape to from time to time as needed. People may not understand why we retreat to our “bubbles” but they are a safe place for us no explanation needed”
“I also live a lot of my time in a bubble…I sit with my back to everything, and play 1 level of 1 game for hours on my laptop. I tell my husband and son that I need to zone out for awhile and thankfully, they understand”
“I mentally prepare. No appointments, tell hubby having a recharge day, not doing anything. Sit, drink tea, watch lots of TV and/or read”
“Being trapped so much is why I’m on social media so much…I miss getting out, but I also really appreciate these online acquaintanceships”
Hiding in Your Bubble Instead of Engaging with Others
“This is just me. I definitely shut myself away in a bubble—90% of it was my illness, 10% was that I just found it hard to be around people. It’s hard to listen to everyone’s great lives when your own is crumbling around you”
“This is so true. I’m supposed to be meeting friends for lunch tomorrow, but my fatigue levels are terrible just now. I don’t want to cancel and I don’t want to let people down, but I also don’t want to fall asleep. It would just be easier to stay at home in my protective bubble”
“Sometimes people can be so cruel it makes me want to run home and stay there. I’m very comfortable by myself now”
Enjoying the Ability to Avoid Responsibilities and Daily Tasks
“Really! It can be challenging just thinking about moving or turning over in bed!”
“This is so right! People just don’t get how hard it is to do the simplest things. Like shower, get dressed, and go out. The first to get done. Maybe pj’s go back on and stay home is more like it”
“Thank you for saying it! Get so sick of people saying that going out will be ‘good for me’. NO it won’t! It will exhaust me and make me feel ill for days, sometimes weeks!”
“Hermits unite! Lol! People with NO energy don’t wanna move…let alone GO somewhere…”
“It’s just easier to stay at home than to get dressed which tires me out more than I can say”
“It’s just easier…I don’t even want to go on vacation”
Not everyone reported feeling safe and comfortable in their bubble, however. Some of our community members said they even try to fight the bubble as much as possible, and stay engaged and active. Let us know how you view or use your personal MS bubble, and how it affects your daily battle!