Living in My Bubble

Living in My Bubble

Okay, what in the heck do I mean by that title, “Living in my Bubble”? Well it’s exactly that. I have this bubble that I like to be in, where I stay to myself and I don’t. I know it seems like I’m “Positive Polly” all the time or something, but I’m not like that 24/7. I think that most of us diagnosed with MS all deal with some sort of depression; at least I know I do. When I’m feeling down, I escape to my ‘bubble’ where I feel like nothing and no one can harm me.

I keep to myself

I have people tell me that they haven’t seen or heard from me in a while and I say that I’ve been really busy, which isn’t a lie. But at times, I just keep to myself. I don’t want to leave my bubble or have anyone ‘pop’ it by telling me something that might upset me (not saying this to intentionally upset me) but still. Bottom line is, I may look fine, I may act okay, but I still have my limitations. I can’t do everything that I used to be able to do. When I have to acknowledge that it’s very upsetting. I can only explain it as; I emotionally cut myself off from people that I would normally interact with. It’s nothing against them, but it hurts to see that they can do all these things with their family and friend (especially during the summer) that I just can’t. Those close to me will continuously ask me, “What’s wrong?” and I reply that nothing is wrong, because there really isn’t anything specifically wrong, I’m just in my little protective bubble where I just can’t and/or don’t want to deal with people in a social manner.

I’m a home-body

I’ve been called a ‘home-body’ way too many times to count and it’s true. Do I want to be at home 24/7, no. But what people don’t understand is that sometimes it’s easier for me to stay at home. Then I just get even more upset when it’s questioned, because I don’t want to have to sit there and rehash everything out loud that’s going through my head.

Do I want to take my kids to an amusement park all day long, yes! Can I? Well, that’s all up in the air on how I’m feeling that day, how hot it is outside. Will I be able to cool off if needed, everything I discussed in my blog, “It All Depends”. I understand that going to the lake or river seems very simple, because I can get in the water and cool off. But what isn’t understood is that just being out in the sun/heat in general wears me out, even if I’m in cool water.

It might seem selfish of me to just want to stay at home in my bubble, but there are emotions that come up within us after being diagnosed with MS that are hard to handle. It’s really hard to pick yourself back up and continue on, or as they say, “roll with the punches”… but what if the punches never let up? I’m not saying that I’m going to be in my little ‘bubble’ indefinitely, but it’s what I do for myself to just deal with everything that’s going on in life. I have found it’s better if I just deal with things the way I have learned to, rather than being pushed to get through it all.

xoxo

Ashley Ringstaff

Poll

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (30)
  • north-star
    4 years ago

    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.

    Two weeks of hot weather are extremely likely to be more than I can handle. No longer having internal and reliable temperature regulation is very dangerous. So the bubble is cool, sometimes dark. If I nap at noon, maybe it’s so I can come to life after the sun goes down.

    It’s hard to get some family members to trust me that I haven’t suddenly given up doing things, I’m just regrouping. And when I can’t regroup anymore, and I need a new kind of assistive device, please deal with it by trusting me. I’m not nearly as upset as you are!

  • Ashley Ringstaff moderator author
    4 years ago

    Coming to life when the sun goes down sound VERY familiar to me…. I joke that I’m a ‘vampire’ and I can’t go out in the sun… My kids get a kick out of that one.

  • Lorraine
    5 years ago

    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.

  • Dianna lyn
    5 years ago

    I used to have to explain to my teenage daughters, “I can’t shop anymore, my legs are burning, and I must find a seat at the mall”. I used to tell my children, I can’t go on that amusement ride, go with your dad, “I will wait here on the bench, when you are done”.My children grew up since then, and had their own kids.My first grandson was born, that’s when, I was diagnosed with MS, the eye doctor cried, and I cried together that day…Then, I decided I was NOT going to scare my grandchildren and put them through this MS thing. So, I moved..moved clear to Hawaii to get better.I knew I didn’t have much time left, so I decided to grow my own vegs ..year round..and yes, have the garden of my dreams. SOUNDS SELFISH..BUT, here I am, still walking. I had to teach myself to talk and walk all over again..therapy. It’s all about therapy here in my bubble every single day. No, I don’t get fancy meds!..i get parsley, kale, spinach, lettuce and everything else homegrown. I do get to go visit my grandchildren but I do wish they would come to see me, soon. I have my dog cocoa whom I walk, and I have other animals who also keep me on my toes, here. Right now, I wouldn’t change a thing..

  • Mspbfh2
    5 years ago

    So now my bubble is firmly in place and I will deny any thing bad happened. Because if I admit it, I will definitely will cry; and I have cried enough recently (my dad died and my daughter miscarried her baby).

  • Mspbfh2
    5 years ago

    Thank you for writing this. Just today, I fell because I refused to acknowledge my limits. Stupid, I know but last week my sister told me I was “letting” others limit me (PT told me to use a cane or even a walker when leaving house) by using a cane and I don’t need a walker, she had been watching me for the week and decided I didn’t need either. I don’t have a walker, but my Dad had died and had a really nice one that I said I would take if no one wanted. I didn’t speak up when she sold a $150 walker for $5 because I was embarrassed to admit that I might really need it on trips to Disneyland or…I haven’t gone with the family the last few times because I don’t want to be the limiting factor on fun. So today I was working in the yard, was very over heated (dripping sweat!), tried to step up on a wall, fell and hurt my hip, knee, finger and pride. My pride hurts the worst…stupid, stupid, stupid. Now wondering if will be able to go to Disneyland tomorrow as planned and I want to cry.

  • Julie
    1 year ago

    I resisted using a cane for the longest time, I’m sure it was because of pride. Then I had to decide if I looked stranger walking with a cane or sprawled out on the floor. When I go shopping with my daughter I now have a scooter. Hated that at first too but why should I have to deny a day out with my daughter because of this stupid disease? In these ways, I can pop out of my bubble for a while. It also is a bonus to use the scooter when I’m just feeling worn out and know I won’t be able to walk a lot.
    I find there are things like this can help you get out of your bubble. They aren’t admitting weakness. They are just assisting us.

  • LAC1120
    5 years ago

    The first time I had to use a wheelchair (at Sea World) I cried. I now have my own motorized one. I have to use it when shopping (which I now hate) and times like amusement parks. Thank goodness I have it so I can do those things with friends and family.

  • Dianna lyn
    5 years ago

    The hardest thing I had ever done, was to resort to using a cane in a time of need.But, hey you should see the beautiful cane I bought..monkey no see, no hear, and no speak..even TSA wanted to keep it on my last trip…i know it’s hard, but sometimes we need a helping hand (the cane)

  • Saskia
    5 years ago

    All commentators sound like the family I want! Yes, 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 a while and thankfully they understand. I have SPMS, and have recently purchased an electric wheelchair, because I can’t walk more than 3 houses on the sidewalk and I have to sit – MUCH worse in the summer heat. This summer, we were asked to house sit a wonderful property on a lake, surrounded by Crown land, big hills, Cambrian Shield rocks. What could I do? – sit on the porch and watch others go for kayak or canoe rides, have a bonfire by the lake, take a walk in the woods, climb to the top of the rocks to have a panoramic view, all activities that I would love to experience with my dear husband. So, we declined. But thankfully, they instead invited us up for a few days visit with them… in that case I won’t MIND some down time while others explore. And I have begun to play with my new camera, taking shots of what I can see from my perch/balcony. I have been getting amazing sky shots! I also have a new bestie who has Fibro, so we both can see if the other ‘caves’ in energy. This has been such a relief to find a friend that really understands the sudden, crushing fatigue we experience, or the ‘brain-dead ‘ state we sometimes get into.

    Thank you for sharing, and helping us to have the courage/direction to also write some of our similar experience.

  • Becky
    5 years ago

    It’s so amazing to read your posts. It’s like you read my mind, they hit home more then anything else I have ever read. Makes me feel like I’m not so alone, someone gets it, gets me. Thank you.

  • Ashley Ringstaff moderator author
    4 years ago

    In a way… when I hear ‘thank you, I know i’m not alone’… I want to say your welcome… because it’s nice to know that we aren’t alone in the way we feel… but then again I just sit here and thing… I DON’T WANT ANYONE ELSE TO DEAL WITH WHAT I DO…. if that makes sense…

    hang in there
    xoxo

  • Grammy
    5 years ago

    I wish I could bottle your words and make them my own!
    I feel you’ve read my journal and my every thought!
    I suffer from PPMS and it progressed rapidly. I’m in a wheelchair and almost fully dependant on others help (especially my husbands).
    My thoughts are : My MS Bubble not only protects me but my family and loved ones. When I’m in my bubble (probably 5-6 days of the week) I’m sparing my family the work involved in caring for me.
    How fun is it to push me in a wheelchair in the summer as we visit the zoo, amusement parks, and even movies and out to dinner?? And in the winter (it snows a lot where we live) it’s sometimes impossible to go out as we 4×4 our way through the snow and sleet in my chair only to reach the destination sore & longing for home again!
    The worst part for me now is having a granddaughter and knowing she’ll never experience the “old me” the ” fun me” ! All she’ll ever know is Grammy in a wheelchair and Grammy who can’t go on rides at Disneyland. Or do all the things I DREAMED of doing with my daughter and granddaughter.
    Her other grandparents are healthy and active. Loaded with energy and able to someday chase after her and do even the simplest of things like play on the floor with her as she has tummy time and discovers crawling and walking. I can’t even be left alone to babysit without putting her life at risk should I loose my balance or any other of the numerous symptoms that I face daily. She’s 18 days old today and I’m sincerely trying to enjoy each thing I CAN do right now! I CAN feed her, hold her, sing to her and watch her little face perk up and eyes bulge open staring right through me as I sing songs I sang to her mommy many moons ago.
    I take every moment I get with her now and make the very best of it! Feeding her & changing her diapers have become my favourite past times! It’s something – for an instant – I know I CAN do right now. I let my granddaughter into the Bubble with her Grammy. And it’s the best feeling….but also maybe the worst … THIS WON’T LAST. This will pass quickly. She’ll grow. She’ll gain weight…and it’ll all fade to black! The realities of my MS will take hold ..and then I won’t be able to hold her without assistance, change her without supervision, and those are the thoughts that ARE REALITY. No matter what a good / well meaning friend may offer in words to comfort “You don’t know what the future holds”; ” You look good! Start having faith that you’ll walk again and beat MS” ..or my least favourite “tip of encouragement” (I mean with extreme sarcasm) “I had a friends cousins, uncles , aunt who had MS and they’re better now so maybe you will be too. Try not to be so negative”
    But the TRUTH is unchanging. I have Primary Progressive Multiple Sclerosis .. I won’t “get better”. And since “I” know this .. “I” know how valuable each moment is with my granddaughter. The snuggling, picking her tiny body up, feeding her, changing her …I take seriously and without “opinions” offering well meaning words but in reality to ME there words that cut to the very core. So taking my granddaughter into my MS Bubble right now is a safe place for both of us. Until the day she has to leave the Bubble & the harsh reality of MS hits like a ton of bricks … Again. Just like it’s a fresh diagnosis happening all over again.
    Someday my daughter will visit the zoo with my granddaughter in her stroller…but she can’t push us both. So “Living in My Bubble” story (as you can see) hits a home run for me. It closely resembles my thoughts, emotions and my realities.
    Thank you for writing it. I hope your words can help shed light for my family & friends.
    Sadly though..we aren’t alone all of us in our Bubbles. I wish I could be the only one so each of you could live full and limitless lives. But I can’t. So instead I say “Thank you” to each of you for sharing your lives with us. For showing us we aren’t alone in our suffering. In some small way it’s of comfort knowing it’s not all in our heads and no one else feels how we feel. It’s lonely in our struggles. But comforting knowing we can be there for each other in even the smallest of ways… ie. this blog!!
    Thank you for allowing me to enter your community & feel (even for a moment) – that my bubble got a “bit bigger for my MS online visitors”.

  • AJoy
    4 years ago

    Grammy, don’t feel as though your physical limitations will limit the bond you will be able to have with your granddaughter! My Mom’s Mother, my “Nanny”, had Scleroderma (a chronic systemic autoimmune disease characterised by hardening of the skin, in the more severe form it also affects internal organs), and I can’t remember a time with her that she wasn’t greatly affected by that terrible disease. I remember her have great difficulty getting around, and her hands were deformed from the disease virtually turning her to “stone” (that’s what I remember feeling as a child). While we were never able to go out and do “fun things” together, she always provided unconditional Love, always encouraged me, and I never “missed out” on ANYthing with her. She was the grandparent that I had been closest to, during her lifetime, and I will always be most Grateful for the time that I had with her. The impact she had on my life will always be a part of me. The disease, and the limitations it may have put on her, had no effect on her Love! Today, the Zoos and amusement parks offer motorized scooters for visitors with disabilities to use. You can wheel yourself through the park, as your daughter pushes the baby. They never offered those for my Nanny, yet I don’t remember ever “missing” that. She often provided the funds for us to do things, even if she couldn’t join in, and I always knew that she was with us in spirit. Know that your granddaughter will feel the same about you, as long as you know that MS can never take away the Love that you have. <3

  • Lowdramamama
    5 years ago

    Forgot to mention my “bubble”. It seems that I have lost, probably 13 yrs. ago? – the part of me that was creative, motivated, organized, tidy & social. Of course I always look “great” and I am always doing “great”… but who on the world wants to REALLY hear my truth? I even get sick & tired of all my “excuses” for not attending events, not being able to go certain places (like Phoenix!); “re-scheduling” appts., and on and on and on.
    But my excuses are a simplified truth: I’m having an MS day. Those days can become weeks at a time of preferring to stay in my safe bubble. The days where just checking my email is overwhelming, watching potted flowers wilt due to lack of water, ignoring the dust DINOSAURS on my floors, not answering my phone or the front door, and just hanging out in my quiet space watching TV – something that DOES NOT require thinking or accountability. And I thank God every day for this gift of a man who married me 33 yrs. ago – in spite of myself!

  • Lowdramamama
    5 years ago

    Hi Grammy! I am MiMaw! Thank you so much for sharing such heartfelt words. I have SPMS – and 3 beautiful grandbabies: 33 mos., 20 mos., & 5 months -ALL of them from my 30 y.o. son & his beautiful wife. He’s in the Air Force and WAS stationed in Anchorage, AK for 4 years. For 6 months of the year it’s what Heaven must be like! Dallas summers get very HOT – so those “getaways” to Alaska in our 100+ degree days were MAGICAL! Imagine in ONE DAY leaving a temp of 102 degrees on a jet – & 7 hours later… arriving in the MOST DROP DEAD GORGEOUS PLACE EVER! – where the hottest part of the is 73 degrees! I swear it CURED my MS, at least in my thinking, for the days I was blessed to be there.

    Okay, this is the part where I KNOW GOD HAS A SENSE OF HUMOR!!! 2 1/2 years ago my son was transferred to…(drumroll)…PHOENIX, AZ!!! The 1st year he was there…it got up to 118 degrees in the middle of MAY!!! And let me just say, “AN OVEN IS DRY HEAT!!!!!!!!!!!” I had NO IDEA how cruel the extreme heat could be. Even being able to “cool off” didn’t take away how miserable my mind & body was. I have NO IDEA how or why anyone would “choose” to live there…except for the months of Nov. – Jan. It’s ugly, unless you love sand, rocks and cacti…a “yard” is ROCKS, AND SINCE THE WHOLE AREA IS IN A BASIN – IT’S BATHED IN POLLUTION!!! Sorry to be such a Debbie-Downer… Oh, and I’ll have to tell you about the “other grandmother”, my age (54), who has the body of a 30 year old, LOVES the sun & heat, and she & her husband do all the “fun” stuff I always thought I’d be doing with my grandchildren… And I’ve tried – but I honestly can’t find any faults she has!
    As far as your granddaughter is concerned, the biggest influence IN MY LIFE was my paternal grandmother – who could not walk – and was basically bed-ridden for the 10 years I knew her. And you know what? I NEVER EVEN THOUGHT ABOUT THE FACT THAT SHE WASN’T WALKING! I just remember HOW SHE LOVED ME – with funny stories, teaching me the Lord’s Prayer, letting me eat “in her bed”; letting me “style” her blue hair and sometimes paint/mess up her fingernails; having her proclaim ALL MY COLORING BOOK COMPLETIONS – absolute MASTERPIECES!!! I think she even tasted some of my mud pies! HER LOVE WAS PALPABLE…and she certainly couldn’t be up and active with me – but the unconditional love and grace she showered me with far outweighed going to Disneyland!

  • dwg
    5 years ago

    The bubble is a beautiful, necessary place that our family & friends can’t conceive. I’m very grateful for you sharing. It gets so frustrating with the pain, fatigue, cognitive issues & simple speech is a task. The depression, is a dirty monster, I didn’t believe sadness could drop me like this. We bounce back, we have too. Was diagnosed 10 years ago or so but, had my first experience with ms was when I was in grade school. Now I’m 48 & feel ‘odd’ & beat up. My name is Dan & I still care, even in my bubble

  • dwg
    5 years ago

    Ashley, your wonderful & so needed for us folks

  • Ashley Ringstaff moderator author
    5 years ago

    Glad that you still have a good attitude even after fighting this MonSter for a while now.

    I’m glad you enjoyed my article. I enjoy my bubble, and when I’m in my bubble – I get very frustrated when it’s popped. lol

  • Tonia
    5 years ago

    I can completely relate to your comment. It’s very difficult feeling that you are not “present” in your life due to the limitations you now have as a result of MS. You look the same, but the reality is that you are not the same.
    I just try to keep a smile on my face, and stay as positive as I can.

  • Ashley Ringstaff moderator author
    5 years ago

    Glad you that keep positive! It’s a must when living with MS. Even though we all have our down times… It’s expected, I think.

    It’s refreshing when I have my mental break inside my bubble. I don’t have to think about certain things, worry about certain issues, etc.

    I feel like i’m ‘recharging’ in a certain way.
    xoxo

  • RichG
    5 years ago

    “It’s nothing against them, but it hurts to see that they can do all these things with their family and friend (especially during the summer) that I just can’t.”

    I am right with you here. It does hurt to see all those people doing things I used to do without a thought and now I can not. It really hurts.

  • Maris
    5 years ago

    Hi RichG (sounds like my bro),
    I don’t find it painful to see what other people CAN DO, rather what I CAN’T DO that upsets me, especially things I used to do, like dancing, running around for a whole day and still having energy for the evening hours to go out to eat/visit frinds and/or family, etc.

    Stay cool 😉

    Peace & Serenity,
    Maris

  • RichG
    5 years ago

    Yes, I agree Ashley. I watched a couple of girls run up to the front of a movie theatre all excited to meet some friends standing there.I thought, what was it like to take my legs for granted, to just get up and go? I can not even remember having that ability.Sad

  • Grammy
    5 years ago

    This is exactly how I feel. I think most of us do. You’re not alone. I ache to do the simplest of things.
    It’s amazing the things we all take/took for granted.

  • Ashley Ringstaff moderator author
    5 years ago

    Yeah. I try and keep a positive attitude… but sometimes it just gets to me. Then I seem to just people watch and think, I wonder if they even realize the freedom they have at the moment.

  • Ojibajo
    5 years ago

    Wow! It’s like you read my mind!

  • Ashley Ringstaff moderator author
    5 years ago

    I’m a total mind reader, you didn’t know? lol JUST KIDDING
    I just like to speak my mind – and it seems that when I do a lot of people can relate. My only hope is that my writing lets others know that they’re not alone in their feelings or thoughts.
    xoxo

  • synapticmisfire
    5 years ago

    Ashley – I feel exactly the same way. When I decline invitations from friends to go to the lake or the beach because I know these excursions will wipe me out (esp. in summer), I’m afraid they feel I’m pushing them away. They understand that my MS affects how much I can do, but I don’t want them to stop inviting me to outings because of MS. I also am somewhat of a homebody, and have learned to listen to my body to determine what I can and can’t do.

  • Ashley Ringstaff moderator author
    5 years ago

    Before I was diagnosed, I was the one making all the plans to go to the lake, etc. Now it’s like… wow, things have really changed.
    At times I feel like I’m holding my family back from doing fun things, so I’ve finally come to the conclusion to push them to go do things, even if I can’t.

    I don’t get as many phone calls, texts, invites… and I don’t have the same friends now that I did before I was diagnosed. But I’m glad for the change, because I feel like my new friends understand more and don’t feel like I’m just ignoring them or not wanting to hang out, but it’s that I physically CAN’T!

    xoxo

  • Poll