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Has MS Made You a Hermit?

Has MS Made You a Hermit?

Lately I’ve noticed I couldn’t care less and less to get out of my own space and socialize, and it takes something special to motivate me to gather with friends or family either in person or even on line.  It’s not that I don’t still like (most of) them – it’s just I find I have no desire to go. This partially has to do with energy levels as well as my own attitude toward solitude.

Needing help can be exhausting

Maybe it’s because I’ve grown tired of the looks on the faces of others when they insist on helping me when I can do whatever task it is at hand.  Yes, their offers are well intentioned, but like a child I want to scream ‘I can do it myself!’ whether it is insistence to carry my plate of food from the buffet line to the table or simply pick up something I’ve dropped on the floor.  Sure MS makes many of those actions slower and tougher for me to do, but it’s still good for me to do it for myself.  I know these people mean well, but nonetheless it stirs my mood, and by avoiding these situations altogether, I feel better or at least less confrontational about my accumulating disabilities.

Social media can take a lot out of you

I certainly understand why any of us might want to hunker down and not interact with others, particularly out on social media these days. I find myself avoiding Facebook unless necessary because so many people believe there is no longer a need for civility or facts.  I like to think I understand and have respect for facts and then assume others feel the same but this past year or so has been troubling to realize facts mean nothing.  This applies to politics and cures for MS – both are fraught with lies, half-truths and worse.  The same goes for civility and kindness – I can usually ignore the comments from strangers who want to read my writings and then hide behind the anonymity of the internet to tell me I am an idiot, but the harsh social commentary that has come from people who I always thought of as compassionate and caring, is jarring and make me want to retreat further. MS is enough of a monster to live with – I don’t need to allow more beastly actions into my space.

Socializing can be overwhelming

We’ve lost friends and family this past year, some to death and some to other reasons, and the circle where we felt comfortable to just be ourselves has grown much smaller. I want to gather and enjoy playing cards or having dinner together without considering what conversation might arise next, or if it’s ok that we have to leave early because my energy reserves are gone.  As you may already know,  I am not one to bite my tongue and rather than risk uncivil words of my own, it’s become easier to exchange fewer words through  creating fewer opportunities. Being with a large group doesn’t help either, because the sounds and activity are difficult if not plain disorienting and wear me down sooner.  We are likely to arrive late and leave early, which makes us less than desirable guests.

MS is exhausting

Then there is my ongoing desire to just rest.  Are you tired?  I know I am.  All of this has worn me down and toss in a good helping of MS fatigue and it adds up to me just always feeling beat up or beaten down. Just getting through the everyday chores has become, well…. a chore. It has been a long time since I’ve felt energized and powering through, which has been my usual style of getting by, is becoming much more demanding.  Deciding when to power up and when to shut down is not such an equal choice these days. It is much easier to power up my computer, spend time with writing and research, than make the effort to power through with personal interactions and daily activities.

So the next time you ask what I’ve been up to and you get my reply of ‘not much,’ you’ll have some insight into why that is really the truth.  Focusing on being a hermit consumes lots of my time and attention these days.

Wishing you well,

Laura

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

  • kunukia
    2 years ago

    Luckily, I am as introverted as a person can be (100% on such scales as Meyers-Briggs), so isolation is wonderful. Occasional family visits, grocery shopping, and waving to the mailman is plenty of interaction for me. That and my dogs.
    I suffer way more from having to do doctor visits, etc, when I don’t want to go anywhere. The hardest thing for me is no longer being able to go hiking/camping, or live in a very isolated area.

  • kathyga
    2 years ago

    @kunukia, I feel the exact same way, it’s nice to hear someone who can relate, and I am happy with my life the way it is too.

  • momiey10
    2 years ago

    It is horrible!! People tell you that you need to get out. It doesn’t matter what I say or try to explain how I feel, they just say “you need to get out”! I don’t want to get out , I don’t want to be around people. It is depressing. I feel like I am just done.

  • Terryjo
    2 years ago

    With very few exceptions, this article fits me to a T. My MS has left me feeling isolated because unless you “have it ” you cannot fully understand what it means to live with MS. My family loves me and tries to help, but I see the look on their faces when I have to tell them, again, that I am having a bad day or experiencing pain or that I am fatigued. Having always been a self-reliant and independent person who could fix or who would try to fix anything that was broken, becoming so dependent on those around me is excruciatingly painful. I also suffer from depression which requires continual self policing to avoid those things that can lead to melancholy. I read as many of the comments to your articles that my eyes would allow and felt a kinship with the many whose lives seem to mirror my own. I am looking forward to reading more of your articles. Thank you so much for sharing.

  • DJ1096
    2 years ago

    I have gone through about 99% of the things in this post and am to the point of being to tiered and weak to restrain my to the point comments, (which I used to try and restrain with tack before). Now I could give a flying fig what others my think!

  • Terryjo
    2 years ago

    Between MS and getting old, I have less and less patience for “stupid.” It is becoming more and more of a challenge to witness the time wasted on useless drama and frivolous worries. What is even more frustrating, is realizing what is really important in life but not being able to share that with anyone because they won’t listen to you; it is automatically assumed that if your body is disabled so is your mind.

  • SigWoman
    2 years ago

    I have recently been contemplating my “forced” MS solitude. I used to be an incredibly social person but I, too, find myself alone most of the time and quite comfortable with it. A couple of days ago thought occurred to me that if I had been born in a different time and/or location, isolation for long stretches of time would be the norm. For instance, I sometimes feel like I should have been born in the 1800s USA. I have an affinity for the early pioneers of this country and their associated trek west. Homesteaders would settle sometimes great distances from their nearest neighbors. In times of winter or extreme weather a friendly visit would be a huge undertaking. One might even call it an event. With my current state of isolation, I am kind of living my dream of being a pioneer with the blessing of modern conveniences such as HVC, refrigeration, satellite TV, internet, and indoor plumblng and cooking. Not a bad life, in my opinion.

  • Meagan Heidelberg moderator
    2 years ago

    Hi SigWoman,
    Thank you so much for sharing your point of view with your “forced” MS solitude. We truly appreciate you doing so. It sounds like it’s not a bad thing when put this way!
    Best – Meagan, MultipleSclerosis.net Team Member

  • Dona
    2 years ago

    I am totally understanding what you are saying. The last two years have been nothing but one thing after another and I am just so exhausted. People say oh you must be depressed. NO I am not. I am pissed off and aggravated to a point of exhaustion. I am frustrated that I have to have others do things for me at times and I sort of a Debbie downers because I can’t do the things I use to love to do anymore and once I get use to the Idea of something else I lost then here rolls around something else to add to the list of things that are today’s new normal. Trying to get others to understand without them trying to play Doctor and fix me…or give me the dreaded pity face… it’s just all way to much a lot of the times. Solitude has become my sanctuary. To just be me and not fell like I have to explain myself for my bodies malfunctions or my crazy mood and sensory overload. It’s great to hear someone else say what I have been feeling.

  • Meagan Heidelberg moderator
    2 years ago

    Hi Dona,
    Thank you for commenting! We are so glad that you’re a part of our community! It can certainly be exhausting trying to educate when people don’t understand what you’re trying to explain. We are glad that your solitude has become your sanctuary! Thank you for sharing with us.
    Warmly, Meagan, MultipleSclerosis.net Team Member

  • Deborah
    3 years ago

    I guess I’m the lone extrovert here! I’ve always been a people person, a career woman and all-around party girl. I’m now 66-years-old and have recently left my home state of Florida and moved to Denver to escape the tropical heat. I didn’t know a soul here in Denver but moved into an apartment with a nice social scene. We have women of all ages that are always ready to see a movie, have lunch, play Bunco or hang out in the pool. I made an effort to become part of the group by volunteering to handle the social communications and instantly made friends. What I love is that every day, I have a choice to rest or play. My goal is to have balance in my life and play whenever I can and rest when I have to. Fun and being connected to other people (including my husband) is the highest priority in my life. I also have a personal trainer once a week who comes to my gym. Some days, I can do very little exercise but I always meet with her and I always feel better afterwards. My husband is an introvert and I understand how people drain his energy so I just let him be and do my own thing. I get energy and life from others so even if I’m limping around, I need to be part of that energy to survive – and thrive!

  • SigWoman
    2 years ago

    You are a breath of fresh air! I love your integrity. Stay true to yourself. You are inspiring!

  • Laura Kolaczkowski author
    3 years ago

    I love to read how you have taken charge, Deborah. it sounds like you have this hermit thing beat! Thanks for the upbeat message and sharing your approach. -Laura

  • Ramona
    3 years ago

    I want, and I need to get out…and meet and do things with other people.

    BUT… MS.. does not make that possiable.. Yes , sure, there are times. (very few) in which I feel great.. What is the answer? I can not just go out in public,, they will not understand if i become symptomatic. I have no husband..nor children . What to do ?

  • Michelle
    2 years ago

    I feel the same way. Where I live, I have no family, and while I have several acquaintances, I don’t have any strong friends that I feel comfortable enough to just call out of the blue. what I do have is my 14/15 year old border collie. I don’t know if you have any pets or can have one- but it might help. Like me, he also doesn’t have tons of energy so it works out pretty well. I take him everywhere he can go legally. If there is an activity I want to go to, but it’s no dogs allowed, I don’t go as he isn’t a legal service dog. He makes a huge difference for me. If we attempt a small hike, he has a harness and pack set to help carry things and we go prepared for the issues I might face. When fatigue or anything hits me, he’s there. He understands and stays by my side. He’s a comforter and a motivator.

  • Laura Kolaczkowski author
    3 years ago

    Ramona, without knowing your location or the rest of your situation, it’s hard to have concrete ideas but here are a few suggestions –
    -find the schedule at your local library for their book club or other talks. Every library has special events which are free

    -contact the MS society or other organizations about being trained to do peer connections. There are lots of people who just want to talk to someone else with MS

    -call the local United Way office and ask about volunteer needs in your area. They usually keep a database. It may be something simple like helping an organization stuff envelopes but it is usually with other people.

    I hope one of these ideas might help you get to thinking of ways you can get out more. – Laura

  • susannepaseur
    3 years ago

    Thank you for writing this because it verbalizes what I’ve been feeling. My husband sees it as well… he sent it to one of my best friends who always took my pulling away personally. She gets it now.

  • Laura Kolaczkowski author
    3 years ago

    Susanne, I hope this helps with your friends and they remember the point next time you have to say ‘no’ to an offer. Thanks for taking the time to write. -Laura

  • Ramona
    3 years ago

    yes, that is exactly my stance.. When MS acts up.. I go NoWhere. which is often.
    now .. people do not ask me anywhere. they can not understand.

  • Annie1
    3 years ago

    One P.S. on last minute plans that I read about in one comment-I have found that last minute plans are actually the best for me and for us. Our friends are very aware of our situation and people are so busy that it works for them too. If I don’t have too much time to think about the what ifs and I am currently feeling ok (like a 5-6 pain), I go for it.

  • Annie1
    3 years ago

    Laura, I so relate to all you have said here. Thank you. I used to be the life of the party and a stage actor to boot. Now my acting skills comes in handy at my husband’s work functions and dinners with colleagues that I feel compelled to attend inspite of my pain and exhaustion because he is a key person in his company and his industry. I can’t stand dissappointing him as he doesn’t ask for much. Other than that, I used to walk the dog every day-no longer-I don’t have the energy to run into anyone or deal with our 8 year old energetic Border Collie. I used to do the meal planning, grocery shopping, and cooking-no longer-I am nauseous most of the time and don’t have the energy most to talk to or even be seen by strangers. I used to volunteer at our church and schools-no longer-I can’t stand disappointing people if I can’t show up! Like you, when I do get out I’m able to “fake it until I make it” and use my acting skills, appearing as vivacious as ever, which of course can be and is mostly fun and makes my husband happy, but I will pay later and he realizes this-helping me to sleep in and bringing me my breakfast. I am the oldest of 6 siblings and our mom died suddenly at 51, 22 years ago so we’ve had many holiday dinners here for years-not so much anymore but if we do-it’s Costco ready made salads and appetizers ;). I’m ok with it all as you say, Laura…I think I may have been a closet introvert my whole life and am now getting to nourish that part of me, go inside myself with meditation and make my home comfortable for myself (with my partner’s help much of time) and my loved ones. Thanks again Laura, Namaste

  • KateKelly
    1 year ago

    I too was a closet introvert. I am enjoying the new me, who stays home and is comfortable in my own little world. It’s hard to explain to people who have always experienced the outgoing happy busy person I used to be. She’s gone and will not be making a return engagement! Yippee!

  • Laura Kolaczkowski author
    3 years ago

    I wouldn’t say I was ever the life of the party, but I did use to enjoy good parties!! I was one of five girls and grew up in a three-generation home with them, my parents and a grandparent in the house. It was packed and we were always active. There were tons of cousins and aunts and uncles and family events all the time. I’m sharing this because you may have touched on part of the reason why I am peaceful with much of this – I can be by myself and I usually like my own company and thoughts. thanks! Laura

  • Jennine
    3 years ago

    This article was true to heart for me. I use to be extremely involved in my community and family. I pretty much have shut out all that I use to partake in. I get tired of people asking how I am. I get overwhelmed so easily. talking on the phone, internet, and having company. I miss all I have given up. Finding a happy medium to not totally distance myself takes so much energy.

  • Lifeisnotfair
    12 months ago

    Jennine; I know that this post was 2 years ago, but I was going through these comments and I couldn’t resist replying to yours! I a probably your carbon copy, because I feel exactly like you do! I have stopped calling friends and family, stopped using social media and I keep to myself in my bedroom, where I can control my environment with my air conditioner on and all of my medications at my side, that I take religiously at every 2, 4, 6 and 12 hours, each and every day. I only venture out for a much-needed doctor’s appointment and to pick up more meds at my local pharmacy, LOL! It’s really sad what you become with this horrible disease…. I wish that there were a cure for MS and even if there were one, I’m not sure if it’s too late for those of us who are already Progressive. I hope that for our sakes, we all will find some type of relief or improvement in our lifetime!

  • Laura Kolaczkowski author
    3 years ago

    If you miss all you have given up, maybe you can find small ways to get some of it back. What and how that might be is a mystery to me, so I can’t offer any concrete suggestions. thanks for commenting on my article. -Laura

  • Juleigh
    3 years ago

    Laura, I look forward to everyone of your post! I was just forced to give up my job b/c of this crummy disease! Your post about letting your job go was a true inspiration to me. I hate that my family can no longer depend on me like they once did. I’m no longer super mom, daughter, wife, aunt, sister, teacher, friend etc. This disease is so humbling! Between pain and exhaustion, how can anyone of us not be a hermit a lot of the time? When a simple shower has to be followed by a period of rest that the healthy world is perplexed by, no wonder we with chronic illnesses withdrawal!
    We will be giving up our family home in the next few months and moving into a home where I won’t have to do stairs. Not really fair to the rest of the fam but at least they won’t have to worry about finding me broken at the bottom of the stairs when they come home each day. The idea of moving overwhelms me and causes panic attracts. Who is doing all this work? I might be able to give an hour a day before pain and fatigue set in. I was just diagnosed about 3 years ago. Can’t believe how much it has progressed even with DMTs. I feel like my Tysabri buddies and MS support group friends are the only ones who totally understand why being a hermit looks so attractive!

  • Laura Kolaczkowski author
    3 years ago

    You are so kind to write again, Juleigh. I can so identify with your overwhelmed thoughts of moving – I am facing the same and after living here for almost 25 years there is a lot of purging and packing to do. Just the thought of it exhausts me. Perhaps we both just need to accept we do what we can, and ask for help for what we can’t handle.

    I’m thinking I will just pack what I want to take and then leave everything else behind and have someone box it up for Goodwill or they can have a giant garage sale. Heaven knows there will be lots left over. -laura

  • Jeffrey L.
    3 years ago

    This story described me to a tea. My only question is how did you get past this funk. I’m tired of people telling me if I don’t get out I will be in a wheelchair with in 6 months.

  • Laura Kolaczkowski author
    3 years ago

    Jeffrey, I’m not sure I get past this funk, but am continually learning ways to cope with it. Recognizing you need to get out is only the first part of the problem solving. I don’t know about the wheelchair for you without knowing your medical history (and i’m not a doctor!) but I do know my own physical condition declines the more I stay at home. Breaking the cycle is the challenge – if you come up with an answer I would love to hear it! – Laura, author

  • tonii harper
    3 years ago

    This story has described my MS exactly, In a way I can never think of how to convey or describe. Thank you for sharing how MS affects you.

  • Laura Kolaczkowski author
    3 years ago

    You are welcome, Toni. Thanks for telling me this is useful. -Laura, author

  • Matt Allen G
    3 years ago

    This makes me think of two things;
    1) When I attend events with family or friends I am reminded of a time where I tried free-running (before MS) with a friend. Sounded fun at first but 20 minutes in and I was dying. “I know you want to keep going but I just can’t keep up, I have to head on in”. I would love to stay till the end of a party (or w/e it is) but I just can’t, I have to go home, I am worn out and can’t “keep up”.
    2) Regarding help and independence. It’s annoying because OFTEN people want to help me when I DON’T want help and don’t want to help me when I DO want/need help and then because they remember me always asking for help (on those occasions) they get really annoyed with me when I say I can do something on my own that THEY want to do for me… UGH!

  • Laura Kolaczkowski author
    3 years ago

    Matt, The help dilemma is a big one because I do appreciate all the extra effort from others and sometimes even welcome it. -Laura, author

  • tfs
    3 years ago

    This experience with MS is a real eye opener. I have to say I understand and agree with much of what you say, Laura. Prior to Christmas, I had many things in place to help me sort issues out. Weekly therapy, connection with two major hospitals that included following physical symptoms of MS and the accompanying pyschological/life circumstances. MS Support group. Daily communication with a dear sister via text. All of it waned and discontinued with 2017. I found I am really struggling with pulling myself up again. I thought I need to just settle in and not “run around” trying to find solutions. I find I have let almost everything go: not doing therapy, not meditating, not connecting with others. Believe me, I am not criticizing myself but noticing the difference. I am re-engaging with life because I will be swallowed up otherwise.My tendency is to introversion. I belive MS is forcing me out of that. Interesting turn.

  • Laura Kolaczkowski author
    3 years ago

    I am thankful to read you are not criticizing yourself, but also taking stock of your situation and trying to change. good luck! – Laura, author

  • Loopyone
    3 years ago

    I have always been a bit of a hermit and still am and I’m ok with it. I have a wonderful supportive husband and a dog. I enjoy facebook and websites like MultipleSclerosis.net. I am overwhelmed by a lot of people talking and music or TV playing….hence I don’t wish to go to dances, etc. Thanks for your articles, Laura. You hit the issues right on the head.

  • Loopyone
    3 years ago

    I have always been a bit of a hermit and still am and I’m ok with it. I have a wonderful supportive husband and a dog. I enjoy facebook and websites like MultipleSclerosis.net. I am overwhelmed by a lot of people talking and music or TV playing….hence I don’t wish to go to dances, etc. Thanks for your articles, Laura. You hit the issues right on the head.

  • Laura Kolaczkowski author
    3 years ago

    Loopyone, you are welcome and thank you for sharing your own thoughts. We’re in this together, Laura, author

  • JustsayN
    3 years ago

    I’m more of a hermit now but I still want to go and like to be included. I just have to prepare to go. Have a plan for fun. Make arrangements for going and return. I like going to Womens Fellowship or going to church. Right now I like trying to exercise. Next week I’m going to visit a high school friend who now has MS. We’re going to have lunch at her house. If it feels good I’m gonna try. If I’m exhausted,but had fun, it’s OK. I still trying to live some kind of life. Just keep your abilities in mind and plan accordingly. The only time I get upset is when I need to be impromtu. I’m just not able to go on the spur-of-the-moment.

  • Laura Kolaczkowski author
    3 years ago

    MS or not, a lot of people don’t like spur-of-the-moment activities. Spontaneity isn’t for everyone and it sounds like you have made some peace with finding the right approach. -Laura, author.

  • Parker 1133
    3 years ago

    Thanks! Right On , the issue of avoidance is something i find myself doing all the time. As a former social person that is very difficult to deal with.

  • Laura Kolaczkowski author
    3 years ago

    IT’s really strange, isn’t it? I am still outgoing when I am out and going…. it’s just getting out doesn’t happen as much. -Laura, author

  • RobertRafferty
    3 years ago

    Well, I think I just found that perfect Christmas card!

    I only left my home 3 times in 2016,
    And I have just done my last family Christmas.

  • Laura Kolaczkowski author
    3 years ago

    oh my, three times out of the house in one year is barely enough to go the the doctors let alone get some fresh air or sunshine. Christmas card letter? Why wait – make it a Valentine Dayt message instead. I hope your family gets the message and understands how tough it can be. Laura, author

  • sophiekerr
    3 years ago

    Laura, I can’t believe that people make snide anonymous comments to you. Yours is the first column I read because it’s always good–informed and well-written. I was a writer myself at Johns Hopkins for 25 years so I can appreciate the work you put into your writing. I don’t go out much either. Do have two dogs to walk but otherwise I am sitting in the kitchen listening to NPR or watching PBS at night. My husband gets mad at me for the clutter I accumulate, but I just can’t seem to keep up with it. He makes me feel guilty. Does anyone else have this problem? Just don’t have the energy; I didn’t used to be this way but I’ve had MS for 20 years now.

  • KarenMc
    3 years ago

    Hi 1ox6leb
    I have profound physical AND mental fatigue. I have a “to do” list. On a good day I accomplish one activity in the morning. I spend a lot of time in my recliner watching TV and playing computer games, as well as looking at the clutter (very frustrating, as you know)
    Fortunately I have an understanding spouse BUT she is messy and always that way – but now I can’t clean up for both of us LOL

  • Laura Kolaczkowski author
    3 years ago

    You are so kind to compliment my writing but I’ve had some good attacks from strangers, usually when I advocate for flu vaccines or dare to say CCSVI is just a way to toss good money away. I’ve always wanted to live in someplace off the cover of House Beautiful but have never in my life wanted to put my time into that when there was a whole big world waiting for me. Now that I am not tackling that world, the house still isn’t a priority and a lot of it comes from the physical drain and my husband is also pretty slack about things. we make a good combo I guess because we can’t pick on the other! – Laura

  • tfs
    3 years ago

    further to reply at 10:31 a.m. just below. The article I am referencing is:
    The Torture That Is MS-Related Chronic Pain (Devin G. from this site)
    If you think your partner would be receptive to it, you could forward it to him. My husband said he appreciated it and helped him understand better. Good luck. It is really hurtful when our loved ones don’t get it.

  • tfs
    3 years ago

    My sent my husband a post written by Devin G. on this site about Pain. Our symptoms are so invisible, but the energy we have to expend for simple things are not easily understood. I present very well. I can still walk and drive. If I accomplish one thing a day that is a good day. I am really sorry your partner does not understand. I certainly do and you should not feel guilty. You walk two dogs! That is amazing Wonder Woman.

  • itasara
    3 years ago

    Thank you for this article. I feel exactly the same way about everything you wrote, and I pretty much feel the same way as all the commenters below. For me I don’t know if it’s really MS. I think that the process of becoming more of a hermit has been coming on with getting older (which I’m not particularly enjoying) and very much social media and the Internet takes up so much of my time and can’t seem to get away from it. I do enjoy reading stories and others opinions and I have to say this election season has been extremely aggravating and annoying to me and I’m glad it’s almost over but the issues will continue unfortunately. I get very annoyed also with all the anonymous phone calls that ring my house all day long and I have to spend time blocking these calls and they just don’t seem to go away no matter what I try. No one seems to care about the do not call list anymoreI grew up as an only child and I am quite used to being alone although Ihave been fairly but not terribly social over the years. Are used to drive quite satisfaction from our pets but they got older and passed on and I don’t want to add any more pets because I don’t want to take care of them anymore. I am married many yrs and we have a family of five adult children but we now have issues with some of them which is unfortunate. I don’t like being alone all the time. I am partly to blame that I am not much in contact with my friends add family because I don’t communicate with them much and I don’t like to speak on the phone either. I do text quite a bit with my family mostly and friends who are not on Facebook I don’t communicate with all that much either. I think maybe I am slightly depressed but I’ve never really felt I was terribly depressed or terribly sad person. I think I am situationally depressed at times esp bc I have children who have problems with depression and other mental health problems. I do have a very part –time singing job which I have to push myself to go to but it always happy after I go. I have to push myself to practice. Next month it was my idea to have a recital to benefit the MS Society and I’m grateful that my voice teacher has taken on this task and several of her student fingers and myself will be presenting
    program next month. All of a sudden I came down with a terrible cold which I have not had in many years and all of a sudden I don’t feel like doing anything for this concert but will probably push myself as I start to feel better. I can’t memorize music anymore which is disturbing to me so I have to use a music stand but a lot of older people who are older singers also end up doing the same so I’m not alone in that regard. I am fortunate to have a husband who loves me very much. Right now he’s off West to visit three of her children, but I’m not much for traveling anymore and it’s easier for me to stay home. Last time I would miss my husband to visit my son in Michigan I forgot my injector. Not the biggest deal because my husband could project it for me but it’s just another something I have to worry about when I’m packing and the thought of flying which I haven’t in many years is more perplexing for me.

  • Laura Kolaczkowski author
    3 years ago

    I easily figured out what you were saying- it sounds like you have thought about this before you read my article. Pushing yourself to get out the door and then not regretting it is a fun thought – I do appreciate being out once i am going! Getting old is tough enough and toss in health complications and it gets daunting at times. thanks for talking about your own experiences. laura, author

  • itasara
    3 years ago

    I didn’t get a chance to correct my mistakes before it suddenly got sent, so I hope you will all figure out what I was trying to say because I see no way to edit my remarks.

  • Toddlius
    3 years ago

    This pretty much described how I feel on a daily basis. Thank you. For me there is also the feeling of guilt, because I feel like I’m supposed to want to be “out there” socializing in person. It’s just so much easier doing it online, so I’m trying to become ok with it.

  • Sha1999
    3 years ago

    Thank you Laura.
    This is the first time I`ve responded to comments.
    You`ve described things so well and I felt the need to thank you.
    Hopefully you will understand how much help your post has been to me.
    Sha

  • Laura Kolaczkowski author
    3 years ago

    Sha, I am very touched by this. Especially that you would take the time to comment. I hope my words continue to help you in some small way. Laura, author

  • Pamayla darbyshire
    3 years ago

    I’m so glad to see that I’m not alone in my “hermit” status. It is much easier to be in a quiet place with my cat, than expend the physical as well as emotional energy to go out or even have folks in for entertaining. I’m usually resting on the bed by 1800 and going out in the evening for events just isn’t going to happen.

  • Laura Kolaczkowski author
    3 years ago

    Along in this feeling? Read all these comments and you’ll see it has lit up a lot of people to share their own hermit state. Thanks for sharing, Laura, author

  • Kelimac
    3 years ago

    Laura, as usual, you have read my mind and eloquently written about one of my greatest struggles.

    I have been questioning whether my recent hermit like tendencies are a symptom of the depression that is part of my everyday life with MS. Having thought long and hard on the subject, I can say I don’t believe it is. I know the difference between the weighted down sadness that can rear its ugly head and the desire to distance myself from the craziness of the world and the holidays.

    I’m learning that for my survival, I can’t handle the noise, chaos and stress of the political environment on top of the social demands of the holidays. To put it bluntly, I’m worn out and I need time away to regroup and recover! It’s just taking me a lot longer than normal.

    I haven’t given up on socializing – I’m just in a phase where I have to choose wisely. Sometimes that choice means disappointing those I love and care about. Very hard but necessary. I hope y’all have at least a few people close to you that can be supportive. At the very least, be gentle and supportive with yourself. The internal battle we fight with MS is exhausting.

    Take care and believe that rest is an important “medicine” that we have in our arsenal!

  • Laura Kolaczkowski author
    3 years ago

    It does sometime feel like survival to me as well – picking which island to remain on is a tough choice at times. Being worn out and worn down takes it out of me too! I hope we both get a healthy dose of rest and emerge in the springtime. Laura, author

  • itasara
    3 years ago

    Thank you for putting this so well. I feel and agree with everything you said.

  • giraffe516
    3 years ago

    Very timely article. I find myself being a hermit a lot. My mobility is hampered and it takes me longer to get anywhere. Then there is the usual parking issues etc. I also have found that most of my “friends” no longer include me due to these issues. They don’t want their fun to be impeded. My boyfriend of 10 years just couldn’t deal with sick me so…my animals and I are together. People tell me to date…I am 53 but look much younger. The thought of explaining this to new men is exhausting in itself!

  • Laura Kolaczkowski author
    3 years ago

    The idea of boyfriends and partners is exhausting to me – I have been married for a long time and can’t ever imagine breaking in a new one! 🙂 take care of yourself and the pets, and thank you for sharing your thoughts. Laura, author

  • Nancy W
    3 years ago

    Your article is timely for me. I like to get out and have a small activity planned 3 days a week. Yoga, Qi Gong, Book discussion, Mah Jongg. But this week has been hard. I want to write because I know I shouldn’t be hard on myself for cancelling out and being relieved to do so.

    My husband is home recovering from surgery and I had bronchitis at Christmas time. Whenever I try to resume my normal schedule this week, I start coughing. I know I need to JUST REST. But that little voice inside my head says I should Go. I tend to forget that
    I have MS AND these other stressors.

    I identify with what you said about civility. I hate that I have to be careful what I say about our current political situation. It seems no one is willing to see the nuances of the situation, so intelligent discussion is out of the question. I find that exhausting.

  • Laura Kolaczkowski author
    3 years ago

    It’s ok to confess it feels good to say no and just stay home. Sometimes we need that more than we need the winds of Maj Jongg to blow on our rack favorably. I hope you and your husband start feeling better with the extra rest. -laura, author

  • Azjackie
    3 years ago

    You are all so right! It is an exhausting disease top it off with the added difficulty of socializing. I got out of socializing when MS forced me to retire.

    My family, boyfriend, and friends do not understand the hermit in me. They are all used to the “socialite” I was. MS has changed me forever.

    They say you need to get out of the house. I shop stores I can manage, I get a Starbucks once in a while, I get fast food and fuel. When I feel rotten, fall, or in pain I want to stay home.

    They won’t understand they want everything to be the old way. I am happy with hermit. MS has given me a different life.

  • skcullers
    3 years ago

    Not really a happy hermit but find hate to have to do things even doctor appointments. It boils down to not knowing how you are going to feel on any given moment or day. I struggle with the lightheadedness almost daily. Trying prescription antivert to see if that helps but living with this disease sure wears one down. Liken it to falling down the rabbit hole……

  • Laura Kolaczkowski author
    3 years ago

    I am so thankful I have not experienced that much with vertigo and balance symptoms. You get a free pass to stay down the rabbit long as you want until you improve. – Laura, author

  • J R
    3 years ago

    I wouldn’t actually call me a happy hermit. Trying to figure out if I may stumble, slip or fall and then all the scenarios possible to regain my mobility is absolutely exhausting. My husband is now retired and constantly helping me which is great ….but. I find myself getting frustrated with him, and myself, when he doesn’t understand what I consider absolutely essential helps(needs) and annoyances. I am hoping that spring will arrive early because there has been a lot of ice and snow this winter that really makes me want to stay inside. Here is to some sunshine and a little vitamin D.

  • Laura Kolaczkowski author
    3 years ago

    Sunshine, Vitamin D, nicer weather …I hold hope those will help me, too. My husband has learned to tune out my annoyed voice after all these years. -Laura, author

  • potter
    3 years ago

    I have always been a lone wolf and with the MS it has gotten worse. I try to make new friends but everyone my age is busy with grand children or traveling and some are still working. Neighbors are even to busy to visit, a Hi or wave over the fence is all they have time for. I am lucky to have my pottery studio I can lose myself and time when I am working. Potter

  • KateKelly
    1 year ago

    This is a late comment, but I am a weaver and my loom is my only friend some days. Our creativity helps us fill in the gaps in our social lives from MS.

  • Laura Kolaczkowski author
    3 years ago

    How fortunate that you have a mind consuming art form to do – tossing clay is an amazing form of therapy. So many people don’t even know their neighbors let alone wave over the fence. thanks for sharing. Laura, author

  • itasara
    3 years ago

    I very much feel the same, Potter, everyone is busy. Four of my five children do not live here anymore. Only one is married recently, and none of them have children. My friends what I have left of them, are busy in general with their own lives and their grandchildren. I am grateful for one of my friends who is quite a bit younger but pushes me to join her for majongg and other venues otherwise which I would not do on my own. Now that her own mom has moved to Florida she tends to go back-and-forth to visit her so it’s less time I will get to see her. I have not felt like entertainment for a very long time. I have since become very disorganized although recently I’ve been able to hire someone to help me try to straighten it up but there’s so much to go. It’s hard for me to have anybody over because I don’t really cook anymore although we have once in a while a friend over and my son or husband does some cookies or we go out or we buy premade food. Since my sense of taste and smell was lost several years ago which took over three years to come back sort of, I just don’t enjoy food the way I used to. And now I have this similar cold which I didn’t expect and I pray that I won’t lose what gains that they are I had made.

  • imurhcklbry
    3 years ago

    It’s always so nice to hear you’re not alone! I, too, have become a happy hermit. I’m always tired. And I just don’t have the energy to interact with people much. I still look forward to the socializing I’ll do this summer with my biker friends, but for now, staying home and doing my own thing is perfect for me. Thank you for this article!

  • Tamara Q
    3 years ago

    Boy am I glad I got this article ! It’s perfectly written. This exactly where I am I find myself a very happy Hermit. I wonder if I should change ,is it a mental health issue? I find occasional calls and visits from my children and grandchildren. My aid that comes twice a week , my Humana nurse and my husband is all the contact I have with the world . I don’t know when it happened. It was gradual . I don’t call friends and they have stopped calling sometimes I think I’d like to talk to them but what would I say ? Thank you for the article it was very timely . No one ever writes about this.

  • Laura Kolaczkowski author
    3 years ago

    You are so welcome and I am glad you found this article, too. It sounds like you have found peace with your shrinking world. Laura, author

  • itasara
    3 years ago

    Again I degree so much with you Tamara. What you say is the same for me.

  • Jaspercat66
    3 years ago

    I am totally a hermit since my diagnosis, and in addition to the fatigue problems of going out, it does not help that I get extreme panic attacks due to the sensory overload I get when I try to drive a car. So I’ve basically given up driving on top of everything else.

    Over the holidays, I attended a large gathering given by a family member, and there were a few of my old friends there, including my oldest childhood friend. They’ve all stopped calling me and inviting me to things. When they saw me, they were obviously embarrassed and awkward. But I don’t blame them for not inviting me anymore because I had stopped going out anyway. It’s all just a sad situation all around.

  • Tamara Q
    3 years ago

    I understand I stick to my children and grandchildren ,my husband that’s it I m happy though

  • DrPatC
    3 years ago

    Well done again Laura, another topic tackled so eloquently. Sometimes finding peace in society these days can be so difficult. “Damned if we do and damned if we don’t” comes to mind. I do find myself acting more and more like a hermit these days, one of my issues is I find any group larger than 2 quickly becomes sensory overload and is both confusing and exhausting. I’m hoping that we still see you around here when you have the strength. Pat x

  • itasara
    3 years ago

    I even find shopping where there are so many choices overwhelming. I never used to feel that way. I loved the choices of seeing what was available and like many others these days, I do a lot of shopping online. It’s so much easier and I don’t have to get myself out to drive somewhere.

  • Laura Kolaczkowski author
    3 years ago

    DrPatC, I wonder if being aware of this makes it more acceptable as normal behavior or might it be interpreted as a mental health issue as well? I’m just thinking out loud here. Thanks for your comments, -Laura

  • Kim Dolce moderator
    3 years ago

    Laura, I totally feel you. You’ve perfectly expressed the frustrations that come out of that inner conflict between pressing on and sitting it out. I’m sure many people are feeling what you’ve expressed so well. I hope you find some pockets of calm within the maelstrom.

    Kim

  • itasara
    3 years ago

    I agree also to what Laura said that it happens to many people not only those with MS these days. I find that society is just not what it used to be. I suppose a lot of people who are older now and in the past have felt the same way. however, technology has really changed a lot of things. And the moral fabric of our society has certainly changed as well. How we think has changed in general and both my husband and I do not always feel like we belong in this world anymore and I’m not saying that in a depressive way it’s just how it is. When technology first came out computers phones etc. I loved it but it has become more and more intrusive and it certainly does not contribute to communication between people. I don’t have to be that way but I have become that way that’s making me somewhat of a hermit

  • itasara
    3 years ago

    I even find shopping where there are so many choices overwhelming. I never used to feel that way. I loved the choices of seeing what was available and like many others these days, I do a lot of shopping online. It’s so much easier and I don’t have to get myself out to drive somewhere.

  • Laura Kolaczkowski author
    3 years ago

    Thanks, Kim. I don’t think this even just applies to people with MS these days – it is so much more. -Laura

  • Channa1997
    3 years ago

    This how I absolutely feel every time there’s a gathering that I just don’t get invited anymore.

  • Laura Kolaczkowski author
    3 years ago

    Channa, and if you are like me it usually doesn’t matter. Thanks for commenting, Laura

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