Paying The MS Tax Part 2: Fear Of Payment

Paying The MS Tax Part 2: Fear Of Payment

A while back, I wrote a piece on what I call the “MS Tax”, that rough period of time after being active where we are paying for doing something. It seemed to really strike a chord with folks, as many with MS end up suffering after partaking in activities that most people deem completely normal. It could be the day after or even a couple days after, but I know if I’m especially active, I will eventually suffer some increased pain, fatigue, spasms, and brain fog because of it. That leads me to the aspect of this tax that I want to discuss today: the mixed emotions I get about even going out in the first place, knowing I will pay for it. It can be pretty easy to psych yourself out of being active.

MS charges a premium

The MS Tax can be pretty expensive. I recently gutted through two evenings back to back of hanging out with friends, and it was awesome. However, when it came to the third day in a row of friends wanting to meet up, my body said no. I could barely get out of bed, and once I did, I couldn’t leave the couch. Even going to the bathroom ended up in a fall, extreme burning pain in my legs, fatigue that felt like my body was encased in cement, and spasms in my right arm that made it hard to even hold a glass to drink with. I imagine the people that saw me the previous two nights, when I was out laughing and even standing a little, would have a hard time believing this without seeing it. That’s how completely different and debilitating this punishment for being active can be. I ended up spending two and a half days like this, days that were rough and led to me accomplishing pretty much nothing except existing.

Having second thoughts before going out

With such an extreme punishment for having a little fun, it’s pretty easy to be a little gun shy about doing something the next time an invitation comes along. It’s hard not to remember the pain and misery that we experienced after the previous time. I admit, it crosses my mind when I am making plans. I try not to plan anything back to back and I try to consider other things that impact my MS, like temperature, crowd size, and even the familiarity with a location. No matter how well I plan though, I know I will still have to pay for it, and that makes me want to forget doing anything altogether. There is already a lot of logistics and planning that goes on in my head, and for what? Half the time I end up having to cancel plans before they even happen anyway. So that I can eventually be lying in pain a day or two after? Seems ridiculous doesn’t it?

The fear that I won’t be able to push myself

So why would I even leave the house? Why keep pushing myself? Why not just sequester myself and live as a hermit (as I feel like I do most of the time already)? Because it’s important to live your life. It’s important to attempt to see and meet up with friends and family. Getting out of the house and making social connections is important. It’s extremely difficult at times, and we may end up paying for it, but it’s important. Finding and having fun any way that you can is important (and you don’t need to feel bad about having fun). That certainly doesn’t mean you have to always leave your house, but it does mean that you shouldn’t let fear of the pain and repercussions stop you. I’ll be honest, I always have that slight fear of when I won’t be able to do what I want to do, the fear that I won’t be able to push myself. To me, the biggest fear is not being able to pay that MS Tax, not being able to force myself to go out and interact with people.

It’s all worth it

That fear of the future is a big motivator for me. Like many, when I had my first symptoms, I woke up that way. That first day, I woke up and fell flat on my face. That’s stuck with me. That drives me. Not knowing what this disease will bring tomorrow can be scary. I choose to use that fear to push myself and most importantly, to remember that it’s all worth it while I’m in bed paying the MS Tax. What about you? Do you avoid activities because you’re worried about the consequences? Hit up the comments if you do or don’t. Remember, I look at everything I write simply as the beginning of a conversation, so let’s hear from you!

Devin

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 (55)
  • DeniseC
    1 year ago

    As an MS’er I agree but, unless I have day of fatigue I will go out and about while I can. Memories are good for the soul. We are not alone. A good friend of mine has osteoarthritis. Unfortunately she pays a similar kind of tax. She can be in bed for days after being “active” cause she is in so much pain.

  • Devin Garlit moderator author
    1 year ago

    Thank you DeniseC! I tend to just do as much as I can as well, even though I pay for it. Makes all those memories mean even more to me!

  • Pam
    1 year ago

    I still work full-time in a busy, stressful environment and trying to explain to friends and family that I typically have to spend my weekends resting and getting chores done and that’s why I can’t go out, or just don’t even feel like talking on the phone seems hard for them to understand. I love the MS Tax expression and will use it to explain why I have to spend 2 days recovering from 5 days of work.

  • Devin Garlit moderator author
    1 year ago

    Thank you pavery! I find using the expression a little helpful when trying to explain to family and friends. Makes it a bit more relate-able! Thanks for reading and commenting, very much appreciated!

  • TracyShudo
    1 year ago

    First YES THANK YOU DEVIN YOU WRITE VERY WELL AND PUT FEELINGS INTO WORDS THAT MOST OF US WOULD NOT BE ABLE TO DO AS WELL! Thank you Kristina for what you said as well. I have meet so many others with MS over my 23 years after being diagnosed and I feel like most of us are type A people. That’s means to me we are the doers, we all ways have something to do or to get done for someone else. Learning to say no to others and say stop to myself has been one of the hardest parts of my MS. Put a young women I have know for over 20 years said to me just last week, Aunti Tracy put how you are feeling from a 0 to 10, 0 being full of energy and feeling great, when you get to start feeling like its a 4 STOP. Because then the next 2 days you might not have to stay in bed for 2 days? But like most of us on a good day we start doing things until we cant even walk or stay awake and the we pay the price. Devin’s Tax .Now I don’t like to pay tax so I am trying to listen to my body more closely, so the tax I pay after is less than if I over do it. Thanks all. Tracy Vancouver BC

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Tracy!

  • Kristina
    1 year ago

    Devin,
    You hit the nail on the head for me again. You managed to simply explain how some people with MS respond to activity. I am constantly amazed that there is someone else out there that really understands, not just sympathizes. Thank you for writing and finding the right words. I am both appreciative my MS isn’t worse, and would love to feel better. Your term of calling it an MS tax I think is brilliant. Not everyone pays the same. Some even manage to pay very little. Thank you for putting it into words for me so I can try to better communicate with others what is my reality. I worry too about the determination to keep pushing. Lately, I have been questioning the saying about doing the same thing and expecting a different result… Of course, this is from the perspective of needing to find my bootstraps again. I have noticed that my rebound time has been increasing. I am used to focusing on achieving or accomplishing something. I think that was a useful trait before MS. Maybe this next round, I will instead try to focus just on being content, instead of beating myself up emotionally when I spend the day in bed, again. I could look at the joy of hearing my dogs snore contentedly. I am thankful I have a life where my old dog can ask me for his medicine to keep him comfortable, day or night. That is a luxury I wouldn’t have. Your articles makes me feel like there is someone else who not only understands, but is good a communicating the personal/emotional side, and all without coming across as whining or full of self pity. No small feat! Kudos and thank you for all the effort you put into these articles! I don’t feel so isolated with my version of “MS” because of your writing. You seem to keep helping me. Thank you. Kristi

  • Devin Garlit moderator author
    1 year ago

    Thank you so much Kristi! It can be incredibly hard to find people that truly understand and not just sympathize. As they say, you don’t “get” MS until you get MS. That’s what drew me to multiplesclerosis.net in the first place, I found it was a place where other people who really understood where at. I hate hearing that others go through what I go through, but it’s an amazing feeling to realize someone understands!

  • mjsms
    1 year ago

    M.S. tax is just what I NEEDED to read today. I am paying for having fun with friends 2 days in a row. This morning I did not wake up until my church service was starting.
    It does comfort me that God & my husband understand. Friends? You don’t get M.S. until you get M.S.

  • stimpy
    1 year ago

    i tried to go upstairs last night for a cheesy snack but ended up on the floor. my husband had to complete my trip. i felt so tired, and triply tired today. i like calling it tax- definitely feeling taxed today.

  • DonnaFA moderator
    1 year ago

    Hi Stimpy, I’m sorry you’re feeling depleted today, and I’m glad you’re okay. I hope that you can recharge today, and that tomorrow is a better day. It sounds like you have an awesome caregiver. It’s a dreary day here, a great day for cuddles – they are extremely restorative for our emotional selves. I’m sending all good wishes for a gentle day and restful evening. -Warmly, Donna (MultipleSclerosis.net team)

  • stimpy
    1 year ago

    Thank you, donna i am lucky in someways. Got a bathchair and saving. Up forstair climbérs now.

  • potter
    1 year ago

    Oh yes paying the MS tax today. My husband has been tiling our porch, but he ran out of time and 8 more tile needed laid. It was our last warm day the weather was turning freezing cold and windy. So I decided to finish it, I had to run down and get a 25 lb bag of mortar. When I was mixing it the drill gave out and I had to mix by hand. Then I spent 2 hours crawling around on concrete cutting and laying tile. The whole job couldn’t have gone any worse. I did get it done but I hurt so much during the night I didn’t sleep well. Today I can barely stand up or walk I am in so much pain. Right now I am not sure if it was worth it but it must be I am always doing something like this. Potter

  • DonnaFA moderator
    1 year ago

    Hi potter! I absolutely understand your thought process, this is what I would have done as well! I’ll share the advice I have a hard time following myself – be gentle with yourself (don’t giggle :-p). I’m sending all good wishes that have a restful day, a gentle night, and a better tomorrow. -Warmly, Donna (MultipleSclerosis.net)

  • BeckyAnn
    1 year ago

    I always try to visit my mom who lives 4 hours away at least 2 times a year.
    I try to schedule the visits when the weather is cooler so heat doesn’t knock me down more than what I am already dealing with.
    The last visit was 2 weeks ago and I am still paying for it.
    I wish my kids and husband could understand that just cause I look OK doesn’t mean I am OK.
    I have always been the one who led the pack and everyone still expects me to GO Go Go -Do do do and I always feel guilty when I can’t.
    Life sucks with MS but there is a lot of people worse off than I am and I just keep telling myself the sun will rise tomorrow and what ever it is like I just gotta deal.
    I love your Blogs and you seem to always know what is in my mind that day.
    Thank you for being a straight shooter on things.

  • 2ah3lsq
    1 year ago

    I often weigh the importance of the activity to me to see if it’s worth the recovery from it. Like my son’s wedding was definateley worth it. I have chosen not to do some things such as friends showers and birthday parties and just sent gifts in order to be able to attend family events or have a date night with my husband. I have to prioritize alot. It always seems a bunch of events fall at the same time and I know I cannot do all of it so I have to decide which events are more important to me to attend and politely decline the others and that makes paying the “MS tax” a little easier to get thru for me. It’s never fun and it is not fair. I envy people who can just do normal things all the time. I try to look at it like I have this disease for a reason so that I can keep my priorities in check and not live life too fast and take the simple things which are most of the time the greatest things for granted.

  • Janice
    1 year ago

    I have to say that the worst tax for me is when my MS caused something worse to happen. I still don’t know or remember how it happened but I fell through my attic floor to my garage floor and broke my back, femur, some ribs and collar bone. It was horrible to spend 6 weeks in rehab to learn how to walk again and other simple things like sitting and standing. I don’t know if this made my MS worse or it is just a result of the fall but after two years I am not close to what I was before. I have fallen many times and I have to be very careful when I walk so I don’t fall-don’t look up, around, and don’t trip over the dog when I walk him. Fear is my biggest tax!

  • chalknpens
    1 year ago

    Well done, Devin. I pay a different tax than most with MS … my lesions are nearly all in my brain, with half a dozen more on my spinal cord. My impairments are cognitive. I’m disorganized, forgetful, fatigued … And I miss my husband, who passed away this past Christmas. He was my better half … we were friends for 50 years, and married for 46. His death was unexpected, and picking up where we had left off has been a challenge. It is very hard to try to be both me and my better half, all alone. After the funeral, I had a lot of company … daily company … meals brought in (he was the cook) and dinner invitations out. And life went on, without him, and without half of me … my better half … others’ lives went on, too, and visits decreased. I’ve mastered the grocery store and try to remember to eat three times in 24 hours … and I work at remembering to pay the bills and yes, pay the real estate taxes on the house, and the sales tax for our small shop … and I do attend gatherings with friends each week … sometimes I teach quilting, sometimes I join other quilters … but remembering when to see which people where and what to bring is always the challenge. Yesterday I went to teach quilting classes and had to return home three times to get items I’d forgotten to bring. Did I make a list? Yes. Did I know where the list was? No. Such is a typical day for me. My friends and family see me as a strong woman who carries on well. I try to live up to that. Maybe you could start a discussion on that … for someone who tried to keep her job (lteaching public school academics) while hiding her diagnosis … and pulling off the disguise of being well so well that the world has an expectation that I will continue to stay well and be strong…?

  • littleturtle
    1 year ago

    Chalknpens

    To begin with, you need to ease up on yourself. My heart is with you. I lost my better half and tried to be both of us, IT DOESN’T work. You have to find a new you. Carry him with you, in your heart but remember you need to be you. Your are not the same because everything has changed and you have changed with it.

    I lost my best friend, lover, father of my children and better half. It was very sudden and unexpected. It was the worst part of my life. It would have been easier if he were there to help me. What a stupid thing to think! But that is how I felt.

    I am sure I had MS when this happened but was not diagnosed. I always have had trouble with distractions, forgetfulness, and concentration. It has gotten worse and worse. With the fatigue, I get very upset with others and myself. I avoid going to some things because I may get there and then want to go home. I go get a few things at the store and am exhausted when I return home. I cannot keep up with the house or anything else.

    Knowing that others are like this helps. Thank you all for sharing. I do not know other people with MS and I think I need to get to a support group.

    Melody

  • stimpy
    1 year ago

    I am sorry to hear this/.

  • AnneWallace
    1 year ago

    Thank you for this essay. For me, nothing is worse than the “MS tax”. It’s the inability to plan, accept an invitation, letting people down, often letting myself down. It’s this part of the disease that is so isolating and guilt provoking. I now take extended release Ritalin daily. Prior to that, 3:00pm was the end of my day. Now, I can get through to a normal bedtime hour. But, on days where I overextend, the payment is HUGE. I really mourn my former self; high energy, productive, self employed for 30 years. The many physical consequences (pain, numbness, spasticity, brain fog) pale in comparison to paying for a day of working in my home or an eveniing with friends with the next day or two in bed.

  • Madonna
    1 year ago

    I was diagnosed with RRMS in 1989 at the age of 26.
    Muscle weakness, numbness, fatigue, dizziness, vertigo, falls, slurred speech, all due to MS have played a role in my life far-too-often. However, I think I’m fortunate.
    Multiple Sclerosis can be a cruel disease and many other people deal with harsher realities than me.
    I continue to pace myself so I can accomplish all that I want in my life
    (I’m very skilled at pacing)
    I control what I can, though, I’ve learned; I can have a healthy lifestyle, follow my neurologist of 28+ years recommendations, and MS can still rear its ugly head. It’s all good though- I do what I can and enjoy living life.

  • JennPenn
    1 year ago

    I am newly diagnosed and for a while, I figured I was just getting older and the fatigue associated with “normal” behavior was just me, as no one else had these reactions to “doing” things. I now am in the process of understanding what my limits are and what things make me feel fatigue – or worse. I recently visited my mom for the weekend and could hardly work at all the next week. Taking a shower and getting dressed was exactly as you described – like my body was encased in cement. This article really helped me to realize that this is from MS – not because I am a weak person. Thank you for being so honest and sharing your experiences with this blog.

  • Mark
    1 year ago

    I’ll pay the tax every time with little regret. I can’t/won’t let MS beat me. Have I changed the way and how much I do, without a doubt, do I think twice about doing things, certainly, have I had to cancel because I just couldn’t do it, we all have. But with that said if it’s within my power I will do it, MS be damned, I’ll pay the tax.
    Tomorrow is an unknown so I’ll try and do it today.
    Diagnosed 12 years ago.

  • Nikki C.
    1 year ago

    I fear of a lot of things MS has brought into my life. The biggest fears are letting my children down, not being able to do the things I need to as a mom for them. The next fear I have is resentment that my children will resent me for what this disease does to me and how it controls all the cards. My next fear would be hatred, that they will hate me because of all the things I try and promise to do or be there for and end up letting them down. Hating myself for not pushing it but knowing if I push to much I’m out for the count. But the worse fear of all would be ALONE, because I can’t be there for them, broke their heart to many times because I can’t control what’s happening to me. And I guess losing my children. They are older now and need lives of their own. They are in their teens. I don’t want them missing out of life because of me. However pushing them away is my best defence because that way I don’t let them down. I just hope they remember our good days and remember me, the “real” me, not the MS me.

  • Seasis05
    1 year ago

    Wow! Does this resonate with me! I was always an active person but being diagnosed with MS 15 years ago has changed that for me. I know age is now a factor (I’m 62) but I have become increasingly “in-active” because of my fear of the MS tax. I will never forget going away for a birthday weekend with my sisters and having to totally cancel plans that were made months in advance because I had an episode of vertigo that was overpowering! I consider myself a “recluse” now and don’t accept many invites that I know will tax me. I just can’t afford to pay the price based on my obligations of work and family… I am not a happy camper but I’ve come to accept the reality of it

  • Devin Garlit moderator author
    1 year ago

    Thank you Seasis05! So sorry to hear that though, it really is about planning and adjusting, just being aware of the tax can be helpful, but we shouldn’t fear it. I’m a big believer in adapting and changing the way we do things, rather than not doing them. But I do get, it’s very, very hard. We can adapt though!

  • Polifax
    1 year ago

    I would have to say sometimes. Paying physically for a get together with friends would be worth it to me because the positive feelings of normality and companionship last longer than the physical tax afterwards. Usually I confess I pay the tax because I stupidly overdo it with chores… which only rewards me with looking at less dog fur from the bed or couch. Not worth it. Although to be kind to myself I do have a very fluffy shedding pup. What really freaks me out in terms of the high MS Tax premium is not so much tax from the physical activity but the Stress Tax. We all know stress is bad for MS, but I have yet found a way to live and avoid it. Whenever I am going through a particularly stressful time (finances, marriage, children issues whatever) I know I am going to really have to pay for it. It is more scary to me because with the physical tax I can kind of anticipate when it will come due (like the next day) with the stress tax its going to demand payment whenever it wants to.

  • Devin Garlit moderator author
    1 year ago

    Thank you Polifax and Shelly! Stress and even fear of stress is a massive issue for me as well: https://multiplesclerosis.net/living-with-ms/the-realities-of-stress-and-ms/

  • Shelley D.
    1 year ago

    Yes, that STRESS TAX, I believe, has been a big reason I have spent the last year-and-a-half in a wheelchair. I am trying to change my thoughts, since in this life there is no avoiding stress! It is a constant battle… Thanks to you & to Devin for bringing the “tax” issue to light, & helping me & others know we are not alone!

  • Sue
    1 year ago

    My husband pushes me to be social. It’s worth it, but it seems so much easier to make up an excuse. I also really have a hard time “ budgeting “ my exercise time . Swimming and physical therapy are supposedly so important. After a workout which seems fine, I may hav “overtaxed” myself. All of my energy is spent and I can’t sit straight. Other times I am taxed and accrue penalties in the form of spasms. My left side has only ..5% of usage available.. I overuse my right side and end up in uncontrollable spasms on the left. Funny, I don’t remember seeing this in the fine print

  • Devin Garlit moderator author
    1 year ago

    Thank you Sue and Shelley D.! Really appreciate you sharing your story!

  • Shelley D.
    1 year ago

    Hi Sue ~ I am sorry to hear of all you go through when trying to do something “good” for you, like exercising! I love the water & feel great while in it, but it is so easy to overtax ourselves that I often wonder if it’s worth it!?!? I have yet to find that fine line between not doing enough & doing too much! I do notice if I go eat afterwards that seems to help. It’s the workout of getting dressed after being in the pool that downright terrifies me! My core fatigues besides my legs and often I can’t sit up straight either. Thank you for sharing!

  • bprogers
    1 year ago

    I have the fear of the MS Tax. Last week I took a chance to do some things I wanted. Walked on a history tour, went to a movie but also worked odd hours. I paid for it with pain, insomnia and muscle spasms. I really wonder if it’s worth it. I am still paying the tax four days later.

  • Devin Garlit moderator author
    1 year ago

    Thank you bprogers! I’ve had my share of moments where I’ve wondered if it was worth it. Usually it is, but I do question myself at times. It can be hard to overcome that fear the next time, but it more often than not worth it!

  • maxie
    1 year ago

    Yes, this resonates with me. I am such an extrovert and need people around me so much, I never turn down an opportunity to be out and be doing something with friends/family. And yes, it is NOT easy. I refuse to give up so I push myself often. I generally recuperate quickly (like 30 minutes of sitting) but am always afraid that there will come a time when I can’t bounce back so fast. I know that will happen, but my mantra is: If I can, I will! Thanks everyone. I appreciate being here.

  • Devin Garlit moderator author
    1 year ago

    Thank you maxie! I love your attitude!

  • LuvMyDog
    1 year ago

    I was diagnosed with MS when I was 36. I am now 71. MS didn’t really hold me back all that much until about 2 years ago. I would tired, yes…but resting up for a day or so, exercising and eating well, got me back on track. Now, the fatigue has increased, pain has increased, cog fog, everything!!! It’s tough to get through a day without being furious, depressed or both. I just can’t do the things that need to be done on a daily basis anymore and it’s very frustrating. Anybody who is not having a lot of problems now and is fairly young, don’t take it for granted, this lousy disease will catch up with you when you get old(er).

  • Devin Garlit moderator author
    1 year ago

    Thanks so much LuvMyDog and Primrose68, all appreciate you comments. I’m 40 and I’ve been diagnosed for about 18 years. Not taking life, any part of life, for granted is something I could help people understand. Like most, I learned it the hard way. It does make me appreciate the little things now though, and I’m thankful for that.

  • Primrose68
    1 year ago

    Hi LuvMyDog!
    Your story sounds so close to mine. I am 68 , had MS for 36 years, and could do everything ( 2 -18 holes of Golf-walking-a day,etc.), but, then something started happening about two years ago, and, now -I am paying the TAX, for activity and stress everyday. I have to be so cognizant of everything I do. This week, I was getting my home ready for an appraisal this Friday, and, I worked almost non-stop for three days( I can be impulsive ! )-now, I can’t even get to my long overdo hair appt.!! I had doctors tell me that I didn’t have MS , as, I had NO symptoms at all ( it started with Optic neuritis) for all the 34 years !! UNTIL NOW !! I totally agree with you, that younger people should take advantage of feeling OK, as, age does come into play !! I am starting my first ever DMT on Halloween–Ocrevus-we’ll see ! My Neurologist wanted it to be a joint decision, as, I am still doing fairly well, and, he said I can always stop it ! I hope you have family and a support group–that is a God Send !! Take Care ! Primrose68

  • Deborah
    1 year ago

    If one more person tells me to pace myself, I’m going to scream. I refuse to give in to MS and yes, I do pay the tax but it’s worth every penny. I’m getting better at managing my resources and not spending time with people who are energy vampires. There are days when it would be easier to not take my morning walk with the Walking Club I started but being with friends and walking in nature restores my spirit. I do find if I push myself too hard, I get clumsy. It’s such a balance but hell, yeah, I’ll pay the tax every time!!!

  • Devin Garlit moderator author
    1 year ago

    Thank you Deborah, I can tell you, that phrase about pacing yourself is a rough one to hear. I prefer to think of it as just understanding the consequences. I understand if I do a certain thing, I’ll pay for it. I end up paying a lot because I try not to let that stop me too much. When I am paying for it though, it helps me to remember that I did it for good reason, that I enjoyed my time, that I lived. So for me, yes, the idea of a tax helps me plan a bit better, but for the most part, it helps me deal with the time when I’m paying for it. Helping me remember that it was worth it!

  • mamak1118
    1 year ago

    My MS is very invisible, in that it’s very mild, for which I’m extremely grateful. But when I push myself, I pay just like anybody else. Going on a short trip causes me to need to sleep for the next two days. Going for a walk with my kids on a too-hot day recently made me miss work the next day. So I find myself sitting. Alone. A lot. I mostly live alone, and support myself, so the idea of missing work or being stuck in bed scares the bejeebies out of me!! I’ve read the Spoon Theory, which basically tells you to allot your energy, but the adrenalin of actually doing something spurs me on to do more. It’s really a catch-22 for me.

  • Devin Garlit moderator author
    1 year ago

    Thanks mamak1118! I completely understand. I tend to get excited and over do things a lot and pay for it much more than I should have if I had just thought more and been a little bit more careful! Setting aside the right amount of spoons isn’t an easy thing to remember!

  • OliviaJ
    1 year ago

    The MS tax makes total sense to me, Devin! I always enjoy your blog posts and thank you for the reference to arm spasms. My neuro talks about leg spasms (like he invented them) so I’ve always wondered if something else is going on with my right arm and shoulder. Now I see they too are part of the MS grab bag since at least one someone else gets them too. I made muffins this morning and the day is shot but for napping and reading. I have a social event Friday night with friends so figure Saturday won’t be good for much. Oh well, as long as Friday night is worth it — I’ll pay the friggin’ tax!
    Thanks,
    Olivia

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Olivia! Oh yea, arm spasms are most certainly an issue. I get them all the time! In my upper back as well! Glad to hear you are still getting out there!

  • CatDancer
    1 year ago

    Yes!! The fear has eased a little since Tysabri seemed to give me more space, yet it’s still there. But dude, I mos def pay. I’ve been learning who I choose to spend my time with, considering some people take more energy than others. How much time and energy I use for certain activities. I can get pissed if I can’t pull all the way through. Geez… even all the doctors appointments and daily chores and “have-tos” can beat me up. I agree with you that paying the price is sometimes worth it because we just never know.
    Thanks for your thoughts, Leigh

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Leigh! Paying the price can definitely be worth it, but you also address another important thing, and that’s planning. I do a lot more planning now, who I’m with, what I’m doing, the potential temperatures, you name. I’m not nearly as spontaneous as I once was, but taking more into consideration has helped me do more!

  • DonnaFA moderator
    1 year ago

    That’s a great call-out, Leigh! I guess I hadn’t ever really thought about it in a quantitative way, but there are definitely people in life that take more energy than others to deal with – and that’s in all areas of life – work-life, family-life, and social-life. Thanks for the reminder to be gentle with ourselves- it’s a great tool in self-care. -Warmly, Donna (MultipleSclerosis.net team)

  • MsWobbles
    1 year ago

    You nailed it! This post describes my experiences and I would like my family and friends to read it. When I’m invited out, depending on the many factors you’ve described, I practically wince. I spend so much time alone at home. I know some people think I’m just lazy. So frustrating. And when I do participate in activities I’ve learned to plan for those days to pay the taxman!

  • Devin Garlit moderator author
    1 year ago

    Thanks so much MsWobbles and Primrose68, I am happy to hear that you’ve considered sharing this. One of the biggest reasons I started writing was to give a way for others to explain to their family what life for us is like. I also did it to explain to my own family, because I felt it was easier to give them something to read, then to listen to me try to explain. Thanks so much!

  • Primrose68
    1 year ago

    Dear MsWobbles;
    I sent this to some family members by 1. Highlight the article then 2. Cut, then Copy-3, Then go to your E-mail and paste it in an E-mail !!

    Hope this helps !
    Loneliness is a terrible thing. As I read some of the above posts, it saddens me that so many people are feeling that way. We should all keep in Touch, and, chat when we feel alone !! I qualified as an MS Support Counselor several years ago, and, heard about that issue too often !

    Best !
    Primrose68

  • DonnaFA moderator
    1 year ago

    Hi MsWobbles, you can always print out any article on the site to share. We’re glad the article resonated with you. Thanks for being part of the community! -Warmly, Donna (MultipleSclerosis.net team)

  • qvh5op
    1 year ago

    I have had to cancel plans because of the MS. I have also powered through social events and paid the price.
    My son took me to NYC for a vacation I had dream of all my life. We had a wonderful time. The problem was that I pushed my self too hard and ended up on the sidewalk with a gash in my head. It could have been prevented if I had just opened my mouth and told my son that walking all over NYC was just not an option.
    If we know there is a tax I feel that we need to let those with us know what our taxi is and how to avoid it. If they want to spend time with us they will help us avoid the tax.

  • Devin Garlit moderator author
    1 year ago

    Thank you, I completely agree qvh5op! Letting everyone know, even if it’s by sharing this, can be important to helping our friends and family understand and plan accordingly!

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