Paying the MS Tax: The day after being active

Paying the MS Tax: The day after being active

It’s time for me to talk about a pretty common occurrence in my life, those times when I have to “pay the MS Tax”. That’s what I call it anyway. I’m referring to that period of time after I’ve tried to act normal, when I’ve put on my best smile (real or not), bit the bullet, and went out and actually did some sort of activity like most people do. That time when I feel like I’m paying for acting like everyone else. For me, the day after an activity is typically filled with fatigue, pain, and even confusion that necessitates me doing next to nothing. While my experiences certainly don’t reflect everyone with MS (or other chronic illnesses for that matter), I know there are many that do deal with this phenomenon.

Having to have a recovery day (or even days) has become such a necessity to me, that my wife and I have to plan for it. As you can probably surmise, if there are two things happening back to back, that means picking and choosing one over the other. Most times that’ll be whatever comes first because I will always tell myself “oh I can do it all”. I tell myself that and then the day after the first event, reality comes crashing down, I’m stuck in bed or on the couch and looking terrible because once again I’ve had to cancel at the last minute.

Even though logically I know I am going to need down time, I still tend to get this attitude that I can do everything. My wife knows better and will try to talk some sense into me but at the same time, I imagine it’s pretty hard to do that. MS and other chronic illnesses can be such roller coasters. You get lots of crappy lows but when you do feel good, it’s so rare that you want to take on the world and do everything possible. That leads to overdoing it which leads to an even longer recovery time. The process then keeps repeating itself.

So what happens when it’s time for me to pay the MS Tax? As I’ve mentioned, it’s a lot of laying down, either in bed or on the couch. For me, it’s primarily that because my legs will be weak, any attempt at standing and walking is tough. Just making it to the bathroom becomes an adventure! I would happily try to sleep the day away because I am overwhelmingly fatigued. The simplest of tasks, even trying to change the channel on the TV with a remote feels like I’m trying to swim through quicksand. So sleep should be a no brainer here, except that sleep becomes difficult too. That’s because, like many others with MS, I suffer from some extreme pain. For me, a lot of my pain gets focused in my legs and arms. It’s often a searing, burning sensation that feels like my body is on fire from the inside out. This kind of pain makes trying to relax and sleep quite difficult, no matter how tired or fatigued you are.

While I’m home paying the MS Tax, it’s easy to feel that I’m missing out on life. The advent of social media makes that even worse because I can see the fun times being had by all. I’m at the point in my long tenure with multiple sclerosis that I realize that this is a part of my life. I make the best of the times when I am out and try not to feel like I am missing out on others. I try to look at it as though I’m not missing out, I’m just preparing for the next time. The problem I do have is feeling bad for my wife that I can’t always be there with her. As hard as it is for her, we’ve come to an agreement that I still want her to get out there and do all that she can no matter what my condition. In a way, I feel like she is out there representing me while my body is at home recovering. At times I do feel the tug of loneliness, but I do feel some solace that at least one of us is getting out there. I’d feel ten times worse knowing that my illness prevented her from enjoying life.

Like regular taxes, paying the MS Tax is now an unpleasant but unavoidable part of my life. Acknowledging it and having the right attitude about it is so very important to avoid getting depressed about it. As I said, I like to think of it as just getting ready for the next time.  Do any of you feel like you pay this MS Tax? How do you deal with it? Sound off in the comments and let’s get a discussion going.

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 (109)
  • 1slo0dp
    1 year ago

    I could really relate to this, in fact, I have been experiencing a few down days after a couple of days of intense activity. Thank you for expressing it so well. I find it very difficult to explain to people, mostly because it is very hard to relate to unless you experience it. Lately one family member has just quit inviting me to events and that has been hard to deal with.

  • Sandy Richardson
    1 year ago

    Thank you for once again an article that completely explains my life. Sandy

  • saddison
    2 years ago

    This so closely mirrors my life, that I could have written this article. Thank you for expressing what so many of us experience. I have Secondary Progressive MS, and wanted to mention one other aspect of “paying the MS tax.” Sometimes a “perfect storm” occurs, and we have events that require our presence for several days in a row. Examples in my life include multiple family Christmas activities (I ended up hospitalized after the first day of those Christmas activities.), wedding events for your own child, and multiple doctor’s appointments, some of which require travel. I recently relapsed and was treated for two UTI’s. Shortly after that, I had four days worth of activities that required my attendance. One problem not often discussed is how to handle neurogenic bowel and bladder problems on those days. I am accustomed to withholding food and drink on days like this, but when you need to do this for multiple days, it is problematic. I am unable to take my normal meds for bowel issues on these days, and that creates a real problem. I also have Stage 3 Chronic Kidney Disease and have had acute renal failure requiring hospitalization twice, so withholding water is not good for me either. Just wondering if anyone else has these issues or any suggestions.

  • Devin Garlit moderator author
    2 years ago

    I do not have those additional issue, but perhaps another reader does?

    A perfect storm of events is certainly something that happens to me too. I dread the holidays because of it. Few people can truly understand just how hard it is attend numerous events that are close together.

  • freedom
    2 years ago

    Great artical. I was very active yesterday. Today is bed day for sure. What bums me out is that when I reflect on what I did….well it seems like it was just normal everyday activities. Showering…running errands…seeing family…wish it could be from running or jumping or dancing…! I try to remain positive and grateful that I can do what I can do…

    Thank you for being real and sharing the hard truth about this disease.
    I feel like I don’t have to pretend when I read your articles.

    Dx 7 years ago.

  • 1slo0dp
    1 year ago

    I am just like you. It is galling. I am trying to learn how to cope with this and remain positive. I view normal activities as small victories and I like to keep track of those.

  • DonnaFA moderator
    2 years ago

    Hi Freedom! We’re glad you’re here, and that you enjoyed the article. Please know that we’re always here to share support and just to listen, or keep you company on the days like this. -All Best, Donna (MultipleSclerosis.net team)

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for reading and your kind words. I always try to be real and not sugar coat anything. Mostly because that’s what I want to read. I want to read something and realize, oh, this person gets it, I want to feel like they’ve really experienced. To me, it’s always been more important to read something and feel like they understand, like I’m not alone. There are enough other folks out there with more positive spins. Thank you again!

  • LisaAnn
    2 years ago

    First, I want to thank you for this article. I sat reading it nodding saying “YES” throughout! At this point in my life I do feel that when I do have that day I feel great I will do as much as I can and enjoy it, the taxes I pay are worth that good day! I have never learned how to “pace myself” like my family tries to tell me. I have lived with MS for 18yrs as well as Fybro and RA. I have learned to enjoy the good days and make the most of them and yes, I will pay some high taxes but this is the life I was given, I have chosen to not let my diseases take it all from me. If I only get one good day a month I am going to make the most of it. Thanks again it helps to know it isn’t just me. I am also thankful to the others that have written here. This is my first time openly talking with others with MS,and it’s comforting.

  • Devin Garlit moderator author
    2 years ago

    Thank you LisaAnn! Our “taxes” are steep but often worth it in the end. Like you, I’ve never really been good at pacing myself!

  • RossB
    2 years ago

    Hi Devin,

    Thank you for an amazing article. As I sat reading it over breakfast, I thought “when did I write this article?”. My beautiful, supportive wife, Kristine, agreed that it sounds exactly what I go through on a regular basis.
    I am still new enough to the world of MS (diagnosed 2/25/2011) that I thought until fairly recently that I was just being selfish in my “paying the MS tax”. So, seeing your article is reassuring, though of course it does not make me happy that anyone else endures this taxation, I at least don’t feel quite as alone or selfish.
    Well, time to go clean the garage, pay the bills, do the dishes, sweep the patio…uh, ok, pay the bills, then try to nap.

  • Devin Garlit moderator author
    2 years ago

    Thank you RossB! Always hate to see how other folks experience it as well but there is certainly some comfort in knowing that we aren’t alone! I’m also a firm believer that knowing and accepting that we are going to need this down time lets us better plan and make the most out of days. MS is really all about adapting! Thanks again!!!

  • deshane40
    2 years ago

    I also experience this. Pain is my most prevalent symptom as well. I have been diagnosed with MS for 6 yrs now and I still have moments that I feel bummed out when I have to cancel. Unlike your wife, my husband refuses to go out without me, so I end up feeling bad because I have ruined everyone’s time. On the rare occasion when he goes out without me, I am really happy. I feel as you do, that I would rather he enjoy life than be at home with me. Being the mom and wife though, and the life of the party

  • Devin Garlit moderator author
    2 years ago

    Thank you deshane40! It is not always easy to convince my wife to carry on without me. It’s a struggle but she finally understands that it can make me feel at easy. She still doesn’t do nearly as much as she might if I were more able bodied but she definitely understands the importance. I always tell her to go and represent me when I can’t be there. Hope your husband will read the article and it will help him understand! Thanks so much for sharing your thoughts!

  • Lori Kiker
    2 years ago

    Great job. I am on the sofa right now after a very avtive day yesterday.

    We know what will hsppen the next day. But its so worth it!

    Thank you for this article!

  • Devin Garlit moderator author
    2 years ago

    Thank you Lori! Appreciate you reading and commenting!

  • MSstranger
    2 years ago

    Devin, that is a very poignant article. I love the title of MS Tax, as I am a CPA who can no longer practice. I am happy to know others feel the same. I cannot get my husband to leave me though and go live. It makes me feel soooo guilty. I wish there was some kind of magic (or miracle) that we could all experience. See I would even tolerate all the muscle spasms, pain, headaches, slow cognition, stumbling if only I could keep going and not collapse.

    Thanks for sharing, keep it up!

  • Devin Garlit moderator author
    2 years ago

    Thank you very much MSstranger! I understand the guilt you feel. It can very much be a no win situation. It certainly can be feel good to have our loved ones not be held up by us. It can hurt if they do carry on without us too. But finding some balance is key, just not very easy. It’s not easy for our loved ones either but I like to think it everyone is open and honest with each other, some sort of compromise can happen. Communication is important in any relationship but doubly so in one where chronic illness is involved. Thanks again for reading and sharing your thoughts, it is always appreciated!

  • Brydie777
    2 years ago

    Hi Devin! Story of my life right here!!! Literally… Thanks so much for sharing your story! It’s nice to know I’m not alone. Something that really helps me on those “tax” days, is applying heat. Sounds weird, but I fight fire with fire. And my husband will massage the really painful areas and that helps more than anything! Peppermint essential oil has helped, too! Anyway… Take care of yourself! Hugs!

  • Devin Garlit moderator author
    2 years ago

    Thanks Brydie777! Heat tends to make me a bit worse but I do get my wife to massage my legs (which are an especially bad area for me) and that does seem to help a ton! Thanks for reading and sharing your thoughts, it’s very appreciated!

  • Brendan
    2 years ago

    You hit the nail on the head, Devin! Paying the MS Tax, I might use that one if you don’t mind. I have a low EDSS and have had HSCT to halt the progression of my MS, but still tend to overdue it often and that’s when I pay the damn MS tax. Thank you for sharing, very well written article and I think there’s a lot of us out there that can relate. I am currently paying the MS tax right now!! Now I don’t feel so ‘alone’ as my long time girlfriend is out hiking a peak in Glacier National Park, here in Montana.

  • Devin Garlit moderator author
    2 years ago

    Thanks Brendan! Sorry for the delayed response, I was paying a pretty high MS Tax for a few days there! You are definitely not alone! My lady is off at an event right now and I’m missing it because I just need the rest time. It’s hard not to get upset by that, at least for me. I definitely try to make the most of everything I do get to do though, and absolutely appreciate it more! Thanks for reading and taking the time to comment!

  • MSMomOf5Boys
    2 years ago

    Thank you for writing this. You described exactly what I go through when attempting to go out or even activities around the house.

  • Devin Garlit moderator author
    2 years ago

    Thank you for reading and sharing your thoughts here!

  • Angel@Angeloncall
    2 years ago

    I supposedly don’t have MS but I have Fibromyalgia and Neuropathy and it’s like you just told my story. Is that possible? I hope it’s ok I’m here.

  • Devin Garlit moderator author
    2 years ago

    Absolutely! There are a lot of common symptoms between all of those! Many of the articles we have may be written by someone with MS but are every bit applicable to other chronic illnesses!

  • Angel@Angeloncall
    2 years ago

    The way you expressed your story is exactly how I feel too! God bless.

  • Jade1956
    2 years ago

    I had just left a fairly exhausting PT session at the hospital and was going down in the elevator when three hospital employees started talking about being so glad its Friday and how tired they were and how the weekend was going to be a blast! I didn’t even realize I’d spoken until the quiet man at the back of the elevator, who’d just been slouching until then, stood up straight, hands in his suit pants pockets and nodded. I was thinking how tired they’re not. They don’t know the relentlessness of fatigue and the horror of considering sleeping the rest of my life away. And I would love to be able to go back to work and feel useful again. I heard myself saying, “I would gladly trade lives with any of you. I used to work and feel useful. Now I sleep and put on braces and get through every day, one day at a time. But please, trade with me. I won’t celebrate Friday. I’ll celebrate Monday when I can feel useful again.” Two weeks later I learned that the quiet man at the back of the elevator was the hospital administrator who listened to his employees venting in front of a patient and fired all three of them. I don’t often spout. I think the day caught me unawares, because later that same day, in the grocery store, when my assistant grabbed the cart I was leaning on and moved it out of the way of other people and I said quietly, “Do you know what? Someday it will seem fair that other people can get out of my way instead of my always being in their way.” The MS Tax is my enemy and Provigil sort of helps me stay awake. Interaction with others helps, but I can fall asleep talking, too.

  • Devin Garlit moderator author
    2 years ago

    Thank you for sharing. Most people will never really comprehend the fatigue we go through. That beyond tired, heavy, stuck in quicksand, weight that we feel. I do think about it every time I hear someone complain about being tired.

    I hear you about Provigil, it helps keep me awake, which is good, but it fall far short of providing energy!

  • Sandra
    2 years ago

    Oh,yeah! I’ve paid the MS tax for years. I’ll think I can cook, do laundry and errands for shopping the same day, then find out the next day, I’m too tired to do anything especially making decisions to run my household. Just lately this summer I’ve had a new air conditioner and furnace installed, and just the decision making for which type and even remembering the name of the many installers I called was overwhelming. That said, the cognitive decline is more when I’ve overexerted my mind as well as my body.

  • Angel@Angeloncall
    2 years ago

    I feel for you! I experience the same thing. Even today I did alot of things and even took a nap but, I am suffering now for it and have most the afternoon.

  • Devin Garlit moderator author
    2 years ago

    Sandra, I think you make an excellent point that even being too active with thought can sometimes be enough activity to necessitate a rest day. It definitely doesn’t have to be solely a physical day that will exhaust us! Thank you for contributing that!

  • azcharli3161
    2 years ago

    Isn’t it a horrible feeling that I’m jealous of healthy people that can do something so simple such as vacuuming, grocery shopping, walking to the mail box or even going out for a nice meal without feeling like they’re going to need to rest for hours and even days?
    The guilt I feel is so overwhelming. I feel so sorry for my wonderful, understanding, supportive family. I thank God every day for them.
    I am one of the lucky people with MS that has 100% support.
    I must say that I am a lucky MS-er. I honestly think I wouldn’t make it with this horrible disease without them.
    As I was saying, I am very jealous of people that can go to work and have the pleasure of cooking and cleaning and just doing anything they want and not pay taxes for it!
    Thank you very much for writing this article.
    I have a file for all of these amazing articles and I print them out and take them with me to doctors appointments and also show my friends and family.
    I think that is why I have so much support.
    Knowledge is king.
    Thanks again. 🙂

  • Devin Garlit moderator author
    2 years ago

    Hi, thanks so much for reading and sharing your thoughts! So glad to hear you have some amazing support, I do too, but not everyone is as lucky as we are! Jealousy and guilt are some common feelings but they are natural. I get jealous of others as well, but who wouldn’t? I talk about my struggle with jealousy here, if you are interested: https://multiplesclerosis.net/living-with-ms/jealousy/

    I love hearing that you print and share some of these articles, I’ve always felt that’s one of the best ways to really raise awareness! Thank you again!

  • Coolcow
    2 years ago

    You put into words exactly how I feel. I could never explain how exhausted I get after the smallest amount of moving around. I go a look like: you could do it if you try. I’ve sent your post to close friends. Some ssid they had not understood what I’m experiencing. Thank you so much for your post.

  • Devin Garlit moderator author
    2 years ago

    Thank you so much. I hope you sharing it will help others better understand what life is like for you!

  • Kritty
    2 years ago

    Hi Devin, funny my kids keep telling me to start my own blog. I like to write especially if it comes from my own experiences even easier if it’s from my heart. I’ve thought about it a lot lately. Decided not until I’m retired though, working full time is exhausting enough. I have so many ideas of different projects I want to work on after I retire. My biggest project plan is to create an album with all my videos and pictures of my kids and family so they will have it forever. I always wished I had my history in an album to pass along to my kids. Some days o actually do feel OK and my cognitive issues aren’t so bad. But the pain in my legs and feet are there 24/7. I was up again at 2 am again this morning. Seems to be the norm these days. Wish I had a magic wand and could make it go away in one “Poof”. LOL

  • Devin Garlit moderator author
    2 years ago

    I wish I had that magic wand too! Sounds like you’ve got some great plans. Working on those things will help with cognitive issues and I’m sure help with stress as well. Thank you for sharing!

  • Kritty
    2 years ago

    Thanks Devin for sharing your pain and Donna welcoming me. Yes I think we all feel alone until we reach out to others. I was diagnosed in 2007 and only in the last year have I become comfortable enough to talk to others and share on sites like this. Only people who deal with pain, fatigue, memory issues, etc understand it and can benefit from listening and sharing with each other. Those who do not suffer with these problems can only “imagine” what its like, they don’t really know what we go through on a daily basis. I know we are all unique in the different symptoms each of have although we do have similar symptoms. Some more than others. I had only fatigue and dizziness to begin with. In 2013 I started having all these different kinds of pain only to find out from my MRI the MS is in my spine and that is the probable cause of the burning and stinging in my feet and legs.

  • Devin Garlit moderator author
    2 years ago

    Thank you again Kritty! As they say, you don’t “get it until you get it” and that is what makes this site so special. Many of the articles are written by those with first hand knowledge of the disease. Not just what is happening but what you are feeling. Thanks so much for contributing and being part of this discussion!

  • Kritty
    2 years ago

    I read this and after I finished reading I was like dang….. This is “My Life”!!!

  • Julie
    2 years ago

    That’s what I thought too. Only I just say I’m “paying for it” the next day. I didn’t realize it was a tax!

  • DonnaFA moderator
    2 years ago

    Hi Kritty! We’re glad you’re here and glad we can help you feel less alone. We’re always here to listen, lend support or share information. Thanks for being part of the community! -All Best, Donna (MultipleSclerosis.net team)

  • Devin Garlit moderator author
    2 years ago

    Hate to hear you suffer from this too but also glad I’m not alone! Thanks for reading!

  • tfs
    2 years ago

    I had a very “taxing day” I took a very very long walk in the noon sun over a week ago and I am just getting over it. (There were car troubles involved, but I won’t digress.) I was proud I did walk the many kms and took breaks along the way. The good news is I was dog sitting for a friend, and a week in a quieter environment really helped me regain perspective. I had a good routine of doing reading/contemplative time in morning with short S L O W walks with the dog in the nightfall. Naps, pleasure reading, and eating chocolate have given me some new perspective. Now I am glad to be at home again, and I hope to incorporate the good energy with overdoing it. We cannot allow ourselves to feel guilty over the disease of MS. I think we are all doing our best. Some days are really difficult. One Day at a Time is my new motto.

  • Devin Garlit moderator author
    2 years ago

    One day at a time is a great motto. It really fits with our disease. Sounds like you’ve got a great routine going! Thanks so much for reading and sharing some of your life with us!

  • tfs
    2 years ago

    correction…. Incorporate Good Energy with NOT overdoing it. LOL It took me a week+ when I overdid it! Easy Does it is the way.

  • Chickadee
    2 years ago

    Paying the MS tax, that is a very appropriate and funny description. I, like many of us MS suffers, have been suffering with increased symptoms because of heat this last month. I have to make changes in my normal routines of the day, to work around the heat. If I don’t, I will not be able to accomplish anything and possible cause myself harm. My family and I, live on a small farm. I take care of the animals as much as I can. Everyone helps. The animals are my motivation to get out of bed every day. They don’t care how I look, walk, talk, move, or how fast or slow I am. Anyway, just recently I over extended myself in the heat and must have been too long outside. My family came to check on me and found me frustrated because I couldn’t make the water hydrant work. Nothing wrong with it. I was just over heated, tired, and getting brain fog from being outside too long and trying to do too much! I spent the next day half in bed and on the couch in the air conditioning trying to recover. The worst part was having to listen to my mother say “I knew you would be sick….” God Bless her. 😉

  • Devin Garlit moderator author
    2 years ago

    Thank you! It’s very easy for us to overdo it, particularly in this smoldering hot summer we are in! Animal really are an amazing motivation for folks like us. I don’t have the wide range that you probably do, but I do have a small dog that get’s me up and moving on days when I probably wouldn’t, so I completely understand.

    Here’s a thing I did on my pup: https://multiplesclerosis.net/living-with-ms/penny-my-biggest-supporter-in-my-fight/

    Thanks again for sharing a glimpse into your life and thanks for reading!

  • Julie
    2 years ago

    I know this all too well. Although, I call it “washout syndrome”. I never know the day that burst of energy will fall upon me, nor can I ever plan it. I can make appointments and there will be no get up and go in me the day after the burst and I just may end up cancelling a very important matter. The day after, I’m totally washed out. I can be like that for days or even weeks. It’s highly depressing to say the least. I know all to well where you are coming from. #MissMyOldMe

  • Devin Garlit moderator author
    2 years ago

    The unpredictability of our disease can be maddening! I very much understand how depressing it can be. I miss the “old me” at times too. I do try to focus on making the most of those good days though. I think folks like us can learn an appreciation for the good days that many people can never fully get. Thanks so much for reading and sharing your thoughts!

  • clsuhre
    2 years ago

    Shoot, even a long car ride requires recovery time. When we travel, we cut a 12-hour drive into two 6-hour days. I know it drives Hubs nuts, because he can drive forever with just a few bathroom breaks. But if we don’t stop at a hotel with a pool so I can loosen up, the next day or two I am totally out of ability.

  • Devin Garlit moderator author
    2 years ago

    Happy to hear that Allison!

  • Devin Garlit moderator author
    2 years ago

    You illustrate a good point that it doesn’t have to be going out and being super active to necessitate paying the tax! Traveling is super exhausting, I talk about a lot of my issues with it here: https://multiplesclerosis.net/living-with-ms/my-trouble-with-travel/
    Thank you for reading and sharing your thoughts!

  • Sue
    2 years ago

    Thank you.
    The tax gets progresses day by day. I do get out of bed and get dressed EVERYDAY! Even when I’m in the hospital or rehab, I dress and put on eye make up. It is just getting so difficult . Sometimes my husband has to pull up my pants or hook my bra. I may not leave the apartment, but I could. I often fall asleep for two hours in the afternoon. Why.?
    It really sucks that I’m taxed but so is my husband. He has to cook, shop, set the table and cut my meat. He has to wash, sort my clothes put them away and choose them for me.
    Ml S is progressively expensive and time consuming
    MlS Sucks my energy little by little. I’ve tried therapy and Prozac . Chocolate works better?

  • Devin Garlit moderator author
    2 years ago

    I admire you for getting ready every day, that is certainly more than I can say I do every day. Life with this disease is draining, not just to us, but to our significant others as well. Thank you for reading and sharing, I’m sure you will be an inspiration to many of us!

  • d1y2uj
    2 years ago

    I am feeling that way for the last 2 days. Your name for those days is perfect! I did push to hard this time so also have spasms in my legs I haven’t had in over a yr. It is good to know other people have the same thing happening. Hope you recover soon

  • Devin Garlit moderator author
    2 years ago

    Thank you! Hope your time “paying the tax” is short! Remember, you are definitely not alone!

  • Leta Reiter
    2 years ago

    As I am relaxing on my bed after a thirteen day marathon, your message was exactly what I needed to read. I have been down on myself for feeling rotten and not understanding what is going on. Now I remember. Thank you for reminding me.

  • Devin Garlit moderator author
    2 years ago

    It’s hard not to feel bad! But this down time is a pretty natural thing, seeing the response to this post, it seems like it’s very, very common! Thanks for reading!

  • 1jnv7nu
    2 years ago

    So glad to finally have a name for it! I thought I was just being lazy after a big day out or weekend visiting family. You described it perfectly. Thank you.

  • Devin Garlit moderator author
    2 years ago

    Thank you! It’s definitely not laziness! I’m overwhelmed by seeing just how many other people have this as an issue!

  • Azjackie
    2 years ago

    I agree 110%. This disease is very cruel and isolating. If we are not “paying the MS tax” we are not involved in activities. Worst thing is as time goes by this tax becomes due more often.

    My #1 problem is walking. I stagger and try to keep from falling like a drunken sailor for a short distance. I miss walking and hiking. Activities my boyfriend enjoys.

    Feeling bad about being the dead weight for my boyfriend is easier because he works out of the state a lot. This way I can suffer through paying taxes alone without the guilt.

  • Devin Garlit moderator author
    2 years ago

    Walking is an issue I suffer from as well. While you may not be able to completely fix that, definitely talk to your neuro about seeing a physical therapist who specialize in MS, they have some great tips and can work on muscles that will help combat your deficient ones. They can also recommend aids like braces that can help. Some people also have luck with the drug Ampyra in helping with their walking difficulties. None of these may get you back to your ideal but they may be helpful! Thank you for sharing!

  • msisbs
    2 years ago

    YES!!! Exactly!!!
    I call it my hangover.
    Daylight comes to soon.
    I think I should get paid for getting out of bed because it is a job.
    I understand, it feels good to read that it’s not just me and I’m not lazy.

  • Devin Garlit moderator author
    2 years ago

    It definitely can feel like a hangover sometimes too! Thanks you for reading and commenting!

  • Miss Bell
    2 years ago

    I used to be able to survive on three hours of sleep and go to work the next day. I could go out 5-6 out of seven days and still keep up with demanding friends and family. Then it all stopped. I have had to make a rule now, I cannot leave the house more than 2 nights in a row. Period. If I do then I end up completely destroyed a third of the way into the 3rd evening (vertigo, slurred speech, vision loss, and tremors). And folks don’t seem to realize that leaving the house can be going shopping with people I enjoy, it’s still taxing. I work, I manage my part of the home, I pay my bills and I meet my responsibilities, and I am grateful that I can do that, but my out of the house time is precious like rare metal that is only found where meteors have fallen. I’m much more protective of what I commit myself to. Yes, its the hardest part, I think, on all parties; especially when you “look” just fine.

  • Devin Garlit moderator author
    2 years ago

    You make a very good point, the “going out” doesn’t have to be out partying with friends. More often than not, it’s something others would consider simple, like grocery shopping. You are right, time out of the house is very precious! Thanks so much for contributing here!

  • alyssapeters
    2 years ago

    Thank you so much for this article. Paying the MS tax has probably been the most difficult thing for me to accept. Since my diagnosis 4 1/2 years ago, I have had such a difficult time learning that I just cannot do what I used to be able to do, or what others around me are doing. The temperatures this summer have been unbearable, and I have been paying for it (either by being outside for more than 15 minutes in the heat, or by running my air conditioner constantly!). I can acknowledge that my recovery time from any activity is increasing as time goes on – it takes me a good 2 days to have any energy back again. Unfortunately, it has not been a particularly good year for me, and stress also affects me, so my body just shuts down. I feel like I am always in recovery mode, and can’t figure out how to make it to the other side of things. Any suggestions?

  • Miriam S
    2 years ago

    You sound like me. If someone does have any suggestions about how to not always be in recovery mode I’d sure like to know. I also have the problem of my body just shutting down. I had to quit work do to that happening when I was in the classroom. It sure makes life stink. Now I don’t shut down very often but I don’t do as much any more. When I do I pay the MS tax. It seems to be taking longer to get over when I do things and even little things like driving to pick someone up close by and take them home makes me be in bed till late afternoon the next day then exhausted.

  • Devin Garlit moderator author
    2 years ago

    Thank you for sharing! I think a lot of us are having a particularly rough time of it this summer. The heat makes everything worse. Unfortunately so does stress. I very important to minimize stress as much as possible. I know that is way easier said than done though!

    We’ve got some good discussion and tips around here regarding stress: https://multiplesclerosis.net/living-with-ms/7-ways-to-fight-stress-and-anxiety/

  • Joys-An
    2 years ago

    Oh my, I wish I had had a term like “Paying the MS Tax” years ago!! Being a lady of rather advanced age, I have been dealing with this a long time. I wish I could say it gets better with time, but it hasn’t. Age just gives you a little bit of an excuse. Ha! Thank you for sharing your thoughts. And for a new way of explaining the “day after syndrome”.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for reading and sharing!

  • JimmyG
    2 years ago

    Yep, I pay the tax as well.
    I try and realize my limitations before the tax takes over and I’m broke.

  • Devin Garlit moderator author
    2 years ago

    Learning and adapting to those limitations is the key! Thanks you for reading!

  • Lauren
    2 years ago

    I understand this all too well. I pay this tax through fatigue n utter exhaustion.

  • Connie
    2 years ago

    I feel the same way. Even a few hours in this heat, causes me fatigue, weakness and some pain. The next day usually very laid back.

  • Devin Garlit moderator author
    2 years ago

    The heat has been awful for so many of us. While staying in the AC is most helpful, I also recommend investigating some cooling products, particularly a cooling vest, they are extremely helpful!

  • JimmyG
    2 years ago

    I live in S. Florida and heat can be brutal. Just going outside to get the mail can be a task. It’s very frustrating but I deal with it

  • DonnaFA moderator
    2 years ago

    Hi, JimmyG! Have you checked out our many articles on how to beat the heat? It will sure be tough in your neck of the woods, but maybe some of the ideas can bring you a little relief.

    Thanks for being part of the community! -All Best, Donna (MultipleSclerosis.net team)

  • Katfish
    2 years ago

    You literally just described my life and feelings! I sincerely want my husband to continue doing things he enjoys.I join in when I can, but I’m finding over time, the loneliness is becoming greater and a bit more depressing. I’m curious to know what others do on their days of paying MS tax (which I agree is brilliant description). I think feeling completely useless while laying around recovering is my biggest struggle.

  • DonnaFA moderator
    2 years ago

    Hi, Katfish, I’m sorry to hear that you’re struggling. Please know that you’re not alone. Devin talks about some of the things you;ve mentioned in his article The Loneliness of MS and again in But I Don’t Deserve To…. And Kim talks about boredom in Bored Silly: Thoughts on Coping with Disability Retirement.

    We’re glad you’re here and we’re always here to share information, support or just to listen. Be gentle with yourself. -All Best, Donna (MultipleSclerosis.com team)

  • Devin Garlit moderator author
    2 years ago

    Thank you for reading and commenting. Dealing with loneliness is very tough. But remember that you aren’t alone, there are many people like us!

    I’ve touched on this awful loneliness before: https://multiplesclerosis.net/living-with-ms/the-loneliness-of-ms/

  • Loopyone
    2 years ago

    So true. The tax is especially high in the heat of summer. Two days out equals two days inside in the ac on the couch.

  • Devin Garlit moderator author
    2 years ago

    This has been one of the roughest summers in a long time! It’s really limited a lot of us suffering from this disease. Luckily fall is right around the corner, in the mean time, like you guys, I’ve been really appreciating my AC! Thanks so much for reading and commenting!

  • Lauren
    2 years ago

    Yes ac jaw become my best friend. I do hate staying I’m the house though. Summer heat has become my worst enemy. Im a busy body and I sometimes have to force myself to go outside and be normal even though I’m not.

  • DonnaFA moderator
    2 years ago

    Hi, Lauren! We have several articles that may help you to overcome the effects of heat.

    Thanks for sharing your thoughts and experiences, and for being part of our community! -All Best, Donna (MultipleSclerosis.net team)

  • EllaFA
    2 years ago

    I have my MS Tax payment scheduled like this 1 day of normalcy to a day and half of rest depending on how I Carpe Diem that day of normalcy. In my head Im am saying to myself “Your Gonna Pay”, I just say I will deal with it when it comes. I know tough talk, Right? Oh Boy do I pay. Pain comes in indescribable way. When I’m awake I go from walking around my house without a cane (I furniture surf as my OTPT calls it) to using my walker to get around.I sleep, sleep and sleep between meals and taking my meds. My sweet husband is so supportive, he knows what I go through, because his mother had MS. I’ve only been on this rollercoaster for a short time.But, I have learned I have to pay the MS piper,that if I want at least 1 good day.

  • Devin Garlit moderator author
    2 years ago

    Thank you for reading and sharing! I tend to do the same thing. When I’m feeling good, I’m sure I tend to over extend myself a bit. I pay for it, but sometimes it almost feels worth it. One things for sure, I’ve learned to appreciate and make the most of those good times!

    I love that phrase “furniture surf”, that’s me in my house too!

  • printguy
    2 years ago

    I know exactly what you are saying. I still cut my lawn every week. It takes me two days to do it now (used to be done in a couple of hours). When I finish the part I am able to do, I am usually worthless the balance of the day. I tend to force myself to do things I used to take for granted. I know I have missed several things this summer due to the day after syndrome…

  • Devin Garlit moderator author
    2 years ago

    I’m impressed that you can still cut the lawn, especially with the summer we’ve been having! Hope you consider a cooling device of some sort to help out! Thank you for sharing!

  • PurpleEye
    2 years ago

    Thank you for writing this post. “Paying the MS Tax” is the perfect wording for what some of us experience. (I agree with AllisonJo that you should copyright that slogan.)

    I also place way too much on my “To Do List” and expect that I’ll get everything done. But, I know better…
    Fortunately, my husband is extremely supportive and reminds me that it will take a few days to recover. And, that’s okay. “Paying the MS Tax” is frustrating. Finding a support system is important, whether it’s friends, family or folks online that help you through 🙂

    ‘Adapting’ is my motto. Thank you for bringing this up for discussion.

    All the best!

  • Devin Garlit moderator author
    2 years ago

    Thank you reading and sharing! Adapting is most certainly the key to this disease!

  • NorthwoodsGirl
    2 years ago

    This is a strange & frustrating thing for me but I will gladly suffer for some normalcy. It makes me feel kinda normal. Love that.

  • Lauren
    2 years ago

    I understand this . I’m a weird person and I accepted this long ago. I feel as if ms has taken everything away from. My ability to do my talents and hobbies. I’ve just learned to adapt. Thanks to the army to teaching me that essential tool .

  • DonnaFA moderator
    2 years ago

    Hi, NorthwoodsGirl. Thanks for sharing your thoughts with us. We’re glad that you’re here and we’re always here to walk with you through the frustrating times. -All Best, Donna (MultipleSclerosis.net team)

  • Matt Allen G
    2 years ago

    “Having to have a recovery day (or even days)” – for me “recovery time” is always longer than the time it takes to break myself. 1 day of acting “normal” probably means 1 week of recovery, ugh

  • Devin Garlit moderator author
    2 years ago

    Yea that’s how it’s been for me a lot recently. It’s no longer just a couple days but closer to a week. The hot weather has made that even worse!

  • AllisonJo
    2 years ago

    Devin – you need to put some kind of copyright on that title because “Paying the MS Tax” is brilliant. I can see it onT-shirts, mugs, and of course, nightgowns. It is that spot on….it explains perfectly just how we feel after a day of dipping out toes into normalacy.

    I pay my MS tax with hours of spasms. Though exhausted, I can’t lie down because the spasms are so strong that all I can do is try to stretch and walk them off, sometimes for hours. It’s a hefty price to pay for a good day. But here’s the thing…we know that we will Pay the MS Tax, but we get up and go when we can despite it and that makes me sort of proud of all of us.

    I love that you encourage your wife to get up and go and feel that she is representing you when you can’t be there. It’s easy to make our loved ones feel guilty for doing the things we can’t do and I admire that the two of you have worked this out in such a great way.

  • Devin Garlit moderator author
    2 years ago

    Thank you! It isn’t always easy for either of us but we have had in depth discussions about her getting out even when I can’t. Not gonna lie, I do feel jealous sometimes, but overall I know I’d feel worse if I held her back! Thanks so much for reading!

  • kpolive4
    2 years ago

    I am newly diagnosed and just back from a previously scheduled conference (a short plane ride away) that lasted four days. I am exhausted and frustrated with the increase in symptoms that I am experiencing. I had to leave a great party where all my friends/colleagues were dancing and having a blast because my hands and feet were tingling like crazy and I was dizzy. I am sad and grieving that I have this diagnosis. Thank you so much for this post, it is exactly what I needed to read.

  • Loopyone
    2 years ago

    Hate being dizzy and weak but that’s how the ball rolls with this condition 🙁

  • DonnaFA moderator
    2 years ago

    Hi, kpolive4, we’re glad to hear that this article spoke to you and helped you feel less alone. Grief is not uncommon, in fact, it’s completely natural, and you’re not alone in feeling it. There are many hands and many hearts here, and a great generosity of spirit. You may also enjoy the very beautiful Reflections in a Two-Way Mirror, and the hopeful The Alone feeling has shown his ugly face….

    We’re glad you’re here. We’re always here to help with information, or to provide support or just to listen. -All Best, Donna (MultipleSclerosis.net team)

  • Cristino1961
    2 years ago

    Excellent blog! I still think I can have a full schedule and I still keep falling on my face! Recovering from my weekend (last sat/sun)….awful back, neck pain all week and out of work today! So cancelled plans for Friday nite and prob my Sunday nite now after reading this. Still learning!

  • Devin Garlit moderator author
    2 years ago

    Thank you! It takes a while to learn how to adapt but once you do, and learn to budget in a little rest here and there, you’ll be able to take on the world in your own way! MS really is about adapting! Thanks so much for reading and sharing!

  • Aadams2002
    2 years ago

    This was is the very first story that came up (as this is my first time on this site, literally just signed up lol) …..anyways reading this just made me feel so releived inside, because I’ve been trying to explain this very thing for the past 2 YEARS! ….but I’m not able to express myself as well as you did here, I deal with the very same symptoms with my arms and legs …. Its almost a calmning feeling I have inside me to know I’m not alone …. So, thank you for your words

  • Devin Garlit moderator author
    2 years ago

    Welcome to the site! I hope you’ll check out some more posts! I started here the same way, it was like I finally found a place where people understand. I like to think that folks can share our words to help explain what it’s like for them to their friends and family. Help spread that awareness! As I wrote here: https://multiplesclerosis.net/living-with-ms/the-loneliness-of-ms/ This can be a lonely disease, but talk and reading about others who actually experience can really be helpful. Remember, you’re never alone!

  • debbieheim
    2 years ago

    I signed onto my multiplesclerosis.net account (after years away) after reading your July 28th post, Invisible Illness. It was as if you wrote it for me. Then I am greeted by this post, Paying the MS Tax. It is comforting to know there is at least one person who understands my life but I’m sad that so many silently live it.

  • Devin Garlit moderator author
    2 years ago

    Thank you! It is always comforting to hear that others understand what I am saying (though I wish they didn’t have too)!

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