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!
I was diagnosed with parkinson,s abput 8 years ago ..I believe they missed the true mark… I currently take sinemet 25/100 ….helpsbut wears off very rapidly…. I have soo many obvious symptoms of MS…trying to get a doctor to listen ….
Any serious comments will be appreciated… HELP….Debbie
Hi Debbie, thank you for reaching out, I’m sorry to hear of your medical challenges and symptoms. If you have concerns that your symptoms could possibly be related to MS, the specialist to consult with would be a neurologist. There are neurologists who do specialize in MS, working specifically with patients for diagnosis and follow up for the disease. MS can be a challenging disease to diagnose because so many of its symptoms can look very similar to many other health issues, but hopefully by following up with a specialist they can help to clarify your symptoms and better explain their cause. If you feel like you’re not being heard you do have the right to seek out another medical professional’s opinion of your care. Please feel free to reach out to the MSAA Helpline for additional information or resources, phone (800) 532-7667, ext. 154. Take care and best of luck to you.
I have been battling MS for about 20 years now. I also have been battling Depression for as long as I can remember. I always felt as if I was never good enough and now that I have been afflicted with MS the depression has gotten even worse.The bubble you speak of is what I simply call isolation. I do not want anyone to see how much of a failure I have become. how little I can do. The burden that I have become on my husband. In June of this year I almost fixed everything but they life flighted me out of the lake area and back to the city where they made me breath and my heart beat again. I was so tired I wanted to stop being the burden to everyone. I use to be the go getter. I did everything for myself and everyone else. Not anymore and it sucks. There is nothing good about MS or the bubble we put ourselves in. If I could even find enough energy to go to the store, or I could get the floors to stop moving so I could walk straight. Cold effects me just as much as heat. Being in a large building with tall shelves sets me off. Getting upset causes the same thing. I have lesions that effect my vision but glasses won’t correct it. It gets worse as I get tired which is most of the time but they won’t let me go to sleep and stay there.