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When You Can Survive But Not Thrive

For many people that live with a chronic illness like Multiple Sclerosis, everyday life can be like a never-ending limbo. A purgatory where they are caught between not being disabled enough to be on disability but also not well enough to do anything more than try to simply survive. They feel like the walking dead, zombies that are going through the motions They’re able to maintain their existence but lack the ability to do much more than that. Symptoms like pain, fatigue, and cognitive dysfunction are worsened by the everyday activities needed for survival, leading to very few opportunities to actually thrive.

Challenges in daily life

Even without a chronic illness getting in the way, life can be challenging. Maintaining a job, paying bills, buying groceries, planning and creating meals, etc. Living isn’t easy for many people. When you add in an illness like MS, it becomes increasingly more difficult. Even simply working for eight-plus hours a day can become an enormous struggle. I’ve mentioned the idea of the “MS Tax”, where we pay for any activity we partake in, that can lead to a never-ending cycle of working and not much else. Fatigue, in particular, is a massive issue for people with MS. We like to say that a good way of explaining it is to think that someone with MS takes five times the amount of energy to do something than it would if they didn’t have the disease. So they may get through a full workday, but they have little left in the tank to do anything else. Fatigue then affects other symptoms, suddenly we have more pain, we are less steady on our feet, and our brains seemingly turn to mush due to brain fog.

More to life than just work

There are many people with MS who get by in life. They’re still able to go to work, they may even look great doing it, they may even still excel in it. However, that becomes all they do. They manage to get through work each day, only to have their bodies begin to malfunction afterward. They are lucky if they can manage all of the other basic tasks of life, let alone anything else. Simply surviving becomes a massive challenge with little to no hope for anything more. Forget dating, hobbies, or any sort of worthwhile/pleasurable activity, it simply isn’t possible. It’s no wonder that depression rates are so incredibly high for those with MS. It’s not hard to see how people can suddenly start to question their existence.

Stuck in limbo: not sick enough

I feel like I talk to so many people that are stuck in this limbo state. They put up a tremendous fight to keep working and to not be considered “disabled”. There are also many that shouldn’t be working, have had their doctors tell them so, but they’ve been turned away by the disability process. Judged as sick, but not sick enough to receive help. Others actually receive help, but not near enough. All of these folks are left in a constant struggle, every single day, to survive. I’ve absolutely been there. I fought hard to maintain my job until my body simply wouldn’t allow it. During that time, I was a shell of a man and lived in this zombie state, where I would manage to work but little else. I’d come home, only to lay on the couch until I was able to find some food, then I’d eat, and often be right back in bed to begin the process again the next morning.

MS zombies

Aside from not having much of a life, living in limbo like that can even further affect your future. Eventually, when all you can do is barely work, you begin to exercise less, you eat worse, you have less social contact, you take as many shortcuts through life as you can. Those shortcuts inevitably have consequences to your health, making you that much more susceptible to disease progression. Aside from that, quality of life goes out the window when you live like this, you struggle to exist and begin to wonder why. It’s not a pleasant life. Many people are living like this though, as “MS Zombies”, shambling through their lives.

What friends and loved ones can do to help

I don’t have a lot of solutions to this, but I know it needs to be recognized. Even those who have MS and aren’t in wheelchairs or using other mobility aids can still have a stressful life. As always, just because they “look good”, doesn’t mean they are. If you want to help someone like this, particularly if you are a friend or loved one, help them by taking on some of those everyday tasks. Picking up some items from a grocery store for them, make them a meal, help with laundry, help with any sort of simple and everyday task can be a massive help. Also, try to bring some joy into their lives, any way you can, because it can become hard to find that when you are just surviving and not thriving.

Thanks so much for reading and always feel free to share, the more we share things like this and educate people, the better chance we have at helping each other!

Devin

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Comments

  • Lupe
    4 months ago

    My life exactly! Driving to and from work, using my left foot to brake because of Foot Drop, and working 8+ hours a day is all I can do. After resting a while once home, I do exercises, eat a meal that I am blessed to have prepared by my boyfriend, and then, sleep even while trying to watch a bit of tv just to do it all over again the next day. It’s a rough life for someone who was used to go, go, going all the time and do, do, doing so much. Once again, you hit the nail on the head. Your writings show your experience with this horrifying disease. Thanks for sharing.

  • Devin Garlit moderator author
    4 months ago

    Thank you @Lupe, hang in there, I understand all too well!

  • ElseN
    5 months ago

    This article TOTALLY and perfectly describes life, I mean, “survival” with MS. So much so, it brought me to tears.
    Within a year of being diagnosed and figuring out what it was going to require to continue working as a relatively new attorney — essentially working 8-10 hours a day & hiring some part-time help to keep the household running (I pretty much collapsed on my couch until 9 p.m. or so — too late to start preparing dinner or doing much else besides getting ready for bed), my wealthy family back east couldn’t even assist me until I found the help I needed. They allowed me to physically & financially crash & burn. I lost the job. Suffered ever-cycling exacerbations due to the stress of being without income and the stress of impending homelessness. Ended up in an ambulance with non-stop nystagmus & vomiting, and a blood pressure reading that had become barely detectable. Sometimes I wish I had died right then and there. Yes, there are those of us with MS whose families are their worst nightmare. I was informed my younger sister (now an heiress due to our parents’ wealth) said at the time that “I should have known better” than to go to law school after having recovered from Chronic Fatigue Syndrome six years earlier. Apparently in her mind, family resources had been wasted on tuition. I wanted to work!! I just needed some help to settle into a plan to make that happen. Instead, they pulled the plug on me. I had graduated cum laude, had law review, and a few academic awards under my belt, but all they saw was a financial liability to the family’s wealth. I was devastated. Still am.
    Someone once said, “Unfulfilled potential is one of life’s greatest burdens.”
    I can’t think of a worse one, other than MS itself.

  • Dorry
    5 months ago

    ElsN I am saddened by reading your story and also Devins. I cried. Stirred up so much emotion in me. I walk with 2 canes and not able to walk much. But if I was near you I would crawl into your kitchen and help you. I would do anything for you. Been a carer all my life and what I was born to do.
    I can’t understand families. We are living in a very self centred selfish world now where it is difficult to see compassion. It is out there. Caring people. But many don’t have this in their families. I weep with you and all those going through such difficulties. I feel so helpless not being able to be supportive. I live in the U.K. I guess you are in America. Otherwise I would give you telephone support. Your sister is probably jealous because you made something out of your life even if you can’t practice. See if you can work from home at times. Maintain your self worth and don’t let anyone strip this from you by careless talk. I walked out on my family. Had enough. Ended the war. They are desperate to have me and my sister back in their lives. Not sure I want to. Careless talk divides families as is a lack of caring and sometimes all you can do is to find another family of friends who will give you what you need emotionally. Take care and know that I care about you. Best wishes

  • Devin Garlit moderator author
    5 months ago

    Thank you @ElseN, I think there are many that would concur that family can cause more harm than good (it can be a touchy topic for me too). I need to write about my own feeling regarding unfilled potential, because it’s something that plagues me constantly, so I very much understand that. Remember though, things may not have gone as planned, but that doesn’t mean they can’t still be great and worthwhile, I know that may seem impossible at times, but I do believe it’s true.

  • nancytngirl
    5 months ago

    I couldn’t have said this better myself. I went thru every bit of this.

  • Devin Garlit moderator author
    5 months ago

    Thank you @nancytngirl!

  • Yoshitail9
    5 months ago

    Devin
    I feel like I dictated every word of this article (my thoughts) and you did the typing.

  • Devin Garlit moderator author
    5 months ago

    Thank you @Yoshitail9, I’m glad I can accurately describe your situation, but sorry that you are going through it.

  • KateKelly
    5 months ago

    This was my life. I was determined not to let the beast get me….my life boiled down to work and sleep. Nothing else. In the end I gave in. I was granted long term disability because I had a great medical team in rehab who advocated for me. I felt so guilty and afraid. I was afraid I would be alone and not be able to afford to live on the paltry amount I was given each month. I had been married 30 years by then and was afraid that as a 50 year old woman I could never again support myself if necessary. Even though my wonderful husband had no intention of leaving me I was still afraid. Needlessly as it turned out. That was 11 years ago. I am still here. My disease has stabilized a bit, I have SPMS and manage my disease better. I do a bit of volunteering. I am a better person now. More accepting of myself and others and no doubt a to better to be around.

  • Devin Garlit moderator author
    5 months ago

    Thank you @KateKelly, so glad to hear you are doing well! I find that being accepting of yourself and your situation is incredibly helpful!

  • KateKelly
    5 months ago

    This was my life. I was determined not to,let the beast get me….my life boiled down to work and sleep. Nothing else. In the end I gave in. I was granted long term disability because I had a great medical team in rehab who advocated for me. I felt so guilty and afraid. I was afraid I would be alone and not be able to afford to live on the paltry amount I was given each month. I had been married 30 years by then and was afraid that as a 50 year old woman I could never again support myself if necessary. Even though my wonderful husband had no intention of leaving me I was still afraid. Needlessly as it turned out. That was 11 years ago. I am still here. My disease has stabilized a bit, I have SPMS and manage my disease better. I do a bit of volunteering. I am a better person now. More accepting of myself and others and no doubt a to better to be around.

  • Deb
    5 months ago

    another great article, I wish my family would
    read this, it’s exactly how I feel. I have to work
    no other choice, but I am glad that I’m able to do it, but I’m exhausted by the end of the day.
    They just don’t get it. Don’t stop writing Devin your very good at it.

  • Devin Garlit moderator author
    5 months ago

    Thanks so much @Deb, I really hope you can send it to your family, even print and give it to them, explain how important it is. Getting even a shred of understanding from friends and family can be so incredibly helpful.

  • collena
    5 months ago

    Once again, you’ve hit the nail on the head. And that is no easy feat lol.

  • Devin Garlit moderator author
    5 months ago

    Thanks so much @collena!

  • Legsonstrike
    5 months ago

    I don’t know how you do it,but you always know how to say things exactly as we are feeling them!! Love your articles!!

  • Devin Garlit moderator author
    5 months ago

    Thanks so much @Legsonstrike, really appreciate you taking the time to say that!

  • Shelby Comito moderator
    5 months ago

    Devin really is like a word magician, isn’t he!? So glad this article was helpful for you @legsonstrike. Thank you for sharing! – Shelby, MultipleSclerosis.net Team Member

  • Ahollmann22
    5 months ago

    So true Devin. As I read this, I am taking a quick timeout. I just dropped off the kids to school, getting ready for my long workday.

    I live to work, and trying to find a balance is challenging.

    Keep up the great blogs !

  • Devin Garlit moderator author
    5 months ago

    Thanks so much @Ahollmann22!

  • markt
    5 months ago

    Devin,
    well again your totally right.i just can’t believe how everything you right is telling my story

    my life is only work I have nothing left for family or friends and yes it gets depressing
    I make it home from work eat something and then its to bed just to lay down as nothing is left in me
    I’m home awake or lets say not in bed about 1 hour a day
    I am a MS Zombie

  • Devin Garlit moderator author
    5 months ago

    Thanks so much @markt, appreciated!

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