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What I Mean When I Say I Don’t Feel Well

What I Mean When I Say I Don’t Feel Well

Every so often everyone has one of those days where they just don’t feel well. The start of a cold? The flu? Just working too hard on too little sleep? We all know what that feels like but when someone with Multiple Sclerosis (MS) says that they are not feeling well? There is a pretty good chance that they mean something completely different, and more often than not, people just don’t get it. They don’t get how me not feeling well with MS is not the same as what they (probably) think “not feeling well” means. On one hand? Yes, people with MS still get sick and the exhaustion of life still gets us too, but even just those mundane ailments can knock us down for the count as they tend to hit us with a little more force, causing a simple cold to be a little more exciting than we would like. On the other hand? “I don’t feel well” could have absolutely nothing to do with the things you might associate with “someone not feeling well” because there are obviously things that an autoimmune disease of the central nervous system can cause a person to feel that someone who is otherwise healthy may never experience in their life. So let me tell you what I mean when I say, “I don’t feel well”.

Always getting sick

First, I’ll tell you a bit about my own experience with simply “getting sick”. Throughout my childhood, I can remember getting sick every year at the same times, as though I were on some sort of annual schedule. It was so routine; everyone else in school has a cold? I get a cold. Flu season? That was the worst. It always hit me hard and always during the holidays, so a lot of my childhood memories of “the most wonderful time of the year” have to do with me lying in bed with the chills next to a bucket for “just in case I can’t make it to the bathroom in time and for some reason don’t want my stomach contents all over the floor”. As I grew a little older, that all calmed down a bit, but then in high school I got mono really bad, and that was just a terrible experience. And then after that? I almost never got sick. Now that was around the time that I was diagnosed with MS so maybe that is when my immune system “woke up” and went into overdrive, indiscriminately destroying everything in its path, be it friend or foe.

A crack in the armor

But after MS came into my life, I actually started to feel like I could walk around a hospital without a mask during some sort of outbreak of a deadly virus and I would walk out just fine because I never seemed to get sick anymore. As stupid as it may seem, I felt somewhat untouchable when it came to getting sick. Maybe that had a little to do with my age and me trying to look on the bright side of my new life, but that illusion soon ended because, well, after a while I eventually did catch a bug. A simple cold now felt like my worst flu growing up; it was like MS, though usually a powerful “armor” against viral infection, had exposed some sort of Achilles heel in my immune system that when touched by some kind of virus would completely bring me down. On top of that, when this would happen? My MS would flare up adding sometimes painful neurological symptoms to a little cold that MS was already making a thousand times worse. Now, since then I have greatly suppressed my immune system with different disease modifying therapies, so I now have to be really careful not to get sick because when I do it literally hits me harder as I don’t have as strong an immune system as I once did. So when I say “I am not feeling well” because of a cold or something? I am not just being a baby about it because with my now weakened immune system, it does not take much to suck all the strength out of me, drain what little energy I have, and totally knock me down, causing my body to be almost totally “useless” for however long it takes to get better regarding both my cold or flu and my flare of MS symptoms.

Some days are worse than others

But a lot of the time when I say “I am not feeling well,” I just mean it’s a bad day for my MS. For me, maybe it was just the stress from yesterday, a lack of sleep, or the heat of the day that is causing me to not feel well. A lot of the time that means I am extremely fatigued (more so than usual), dizzy, unable to see clearly, in pain, or too weak to want to do anything but lie down. But we all have our various triggers, and we all have a different assortment of symptoms that tend to haunt us on those especially bad days, so this is the point I want to make clear because it is what I have personally found to come up over and over again. Yes, I am always tired; I battle fatigue (for example) every single day, but like all other symptoms, some days are worse than others. Simply put, it’s no different than pain. Maybe you just got a paper cut? Or maybe you broke your arm? Both “hurt” but one hurts objectively worse. So when I say, “I don’t feel well” and then you say, “you never feel well”? You are not understanding that there are varying levels of severity of the symptoms that I live with, and despite me looking like nothing is wrong, these symptoms? Though they were not too bad yesterday, might just be killing me today.

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

  • Sue
    2 years ago

    You got that right.
    I was a teacher working with germy overcrowded classes for 30 years. Without a diagnosis of m s, I used to just work, sick or not. No big deal.
    Since diagnosis, a fever of101 puts me into the hospital..
    Now a good day is mild neuralgia and mild spasms. I can’t walk or transfer at all. Well meaning friends ask if I feel better? Duh? Better is gone in progressive ms. Not worse is as good as it gets..

  • Matt Allen G author
    2 years ago

    Yeah sometimes it bugs me when people ask if I feel better (and I don’t even have progressive MS) but then when they don’t it bugs me… I think it’s nice just to know that they care enough to wonder “what should I say?”

  • Estelle
    2 years ago

    I have lived with MS for many years and am now 83 years of age. I live with sleepless nights, pain in my leg, which I have had from the onset, and mostly memory problems. It is one insidious disease and one never knows what tomorrow will bring.

  • Matt Allen G author
    2 years ago

    man… that has been one of the most difficult parts of living with MS, the unpredictable nature of the disease

  • messeeone
    2 years ago

    Nicely written. In fact, I’m sharing this one on FB to help friends and family understand. And what about those of us with bad cases of mono in our teens? I really believe it kicked something off in my immune system, like Matt said. There must be studies on this I’m not aware of.

  • mbrhapsody
    2 years ago

    Thank you for this well-written piece. I also had a bad case of mono as a teen and wondered about this There was an article written recently about MS and mono, here https://www.webmd.com/multiple-sclerosis/news/20170831/more-evidence-links-the-mono-virus-to-ms-risk#1 but doesnt discuss severity of mono, only the relationship.

    When I’m having a bad MS day, I’ll accuse my husband of forgetting to pay the gravity bill. He seems to understand.

  • Matt Allen G author
    2 years ago

    I know people have always looked into mono as a contributing factor in MS. Look up “Epstein-Barr virus” and MS. I can’t help but think there is something to it, maybe not the cause, but a relationship. But what do I know

  • Senator
    2 years ago

    I have days, luckily few in numbers, that I just feel tired and do not feel like doing anything but stay home, read or watch TV and rest. Luckily my wife understands because she is a nurse and is really involved in MS education of what entails my different physical problems. I was diagnosed with PPMS at age of 58, and went from an active person, to quickly relegated to a wheelchair for long distances. Now am in power chair full time and it just kind of had the feeling of smooth progression that I did not even had time to think about it. Strange thing about getting MS, is that I very rarely got sick. I had an aversion to doctors and had seen one probably 4 times till MS. Still have an aversion with doctors until they prove to me that they listen to me and my problems. My Primary Care Doc tells me I know my body better than anyone. My Neuro listens to me and answers questions about MS without telling me `Are you looking for some pie in the sky cure`? No just answer if it`s a viable option. As Neuro`s go, I am on my 4th, and am very satisfied. He understands when I ask a question about treatments for MS I am trying to educate myself and tell me if it`s good bet or not. He told me about Ocrevus for PPMS & RRMS before it was approved by FDA. I am now waiting to get approved to get it. If your Neuro is not an MS specialist, find one and change. You will be happy you did. Good luck to all !

  • SweetSunshine
    2 years ago

    Hi
    I’m Starting Jan 4-2018 and I’m praying for the Best. I hope your on your way to your first treatment.

  • Matt Allen G author
    2 years ago

    I have no idea how many neurologists and “MS specialists” I had to go through before I found my current who is awesome. He does not even label himself as an MS specialist but knows more about this disease than anyone I have ever met. – I also never got sick around the time I was diagnosed and afterward. I think the immune system in MS is just on overkill mode so nothing stands a chance. That’s what I told myself at least. I have an MRI today and depending on what it shows I might consider Ocrevus. I already did Lemtrada and am on Zinbryta so I feel like I don’t have many options for “aggressive” treatment left.

  • kiki33
    2 years ago

    It is frustrating that people don’t understand when I say I am tired/exhausted. They don’t realize the depth of fatigue. When I am not in a flare up – yes I can be tired – but it is nothing compared to those days I push myself out of bed and hope to make it through. It is so hard to push, push, push because I have no choice. 🙁

  • SweetSunshine
    2 years ago

    VLH
    I’m sure we all understand your frustration. MS is a Horrible Disease. One of the things that hurts so deeply, is when your hurting(I mean MS Hurting) and a family Member comments “ Yeah I Know I’m Hurting to” and Literally discount your actual pain like it’s a contest as to who hurts Worse. I hate to feel like I’ve taken the time to Truly edgucate Someone about MS and offered a Website such as this one. And they take one thing from reading all of the comments-
    “I read about MS The site you suggested and it was so depressing.
    All those people do is talk about “Their Pain” “Poor Me”
    Why don’t they think positive and make the Best Of it.
    Annnnnd that’s when I Know that they Know Nothing about MS or it’s daily struggles.
    So I have just given up on people Understanding.
    I push myself hard. I’m a tough Lady, but even Tough people reach a Limit.

  • Matt Allen G author
    2 years ago

    People don’t get that being fatigued is NOT the same as being tired. You are tired after a long night out or a hard day of work. You are fatigued for no reason and then you get tired ON TOP of that. After everything I have been through, fatigue is still the worst part of life with MS for me, especially because fatigue makes every single other symptom I have 100 times worse.

  • switzerld
    2 years ago

    This website has been a godsend to me. My husband was diagnosed with PPMS in December. He was 60 at the time. This has helped me to explain things to him about what is going on in his body. It has been very acute and rapidly progressive. We have been dealing with it for over three years but the doctors kept telling him he didn’t have MS because there were no lesions on his brain. Then he had bladder failure and was in the ER. Two days later, the same day they told us that he would need surgery for the stenosis and degenerative disc disease in his spine, his bowels failed due to having a severe bowel obstruction. He was still able to stand in December and get himself in and out of the bathroom with the help of the bars/railings we have installed throughout our home. During the hospitalization, my son-in-law who is an MD, stayed for three days straight and insisted that they do a full neurological work up on him. He told them that he had been “waiting 3 years for this day” — they did a spinal tap and all the other related tests, a stronger MRI with contrast dyes and found that my husband had lesions all throughout his spine which we had been previously told was arthritis. Now he is fully a quadriplegic and on hospice. Thank you all for sharing your stories and for the help I have been able to get from those that deal with this terrible disease on a daily basis. Sometimes even the “specialists” in MS are clueless because they don’t go through the daily grind of watching a loved one in such pain and feeling helpless to know how to bring them relief. I appreciate all the information that is provided in this forum.

  • Matt Allen G author
    2 years ago

    Wow, I am so sorry to hear about your experience, I can’t imagine how rough those three years were. Limbo. I hope your husband is being set up with a good treatment plan (medication, physical therapy, occupational therapy, etc)

  • miapetitti
    2 years ago

    So glad I read this piece today. I was two hours late to work due to my symptoms, and am currently struggling heavily to make it through the day. Feeling pretty down I decided to hop on here and peruse articles, and I’m very pleased to have read yours and related so heavily to it. Thank you for sharing!

  • Matt Allen G author
    2 years ago

    I am so glad you found this helpful. I didn’t want to say, “I am so glad you can relate” because yeah… I am sorry that you can! But, you know what I mean.

  • Meagan Heidelberg moderator
    2 years ago

    So glad that you found Matt’s article helpful, MiaPetitti! Thank you for reaching out to our website in the time of need. Thinking of you today, and hoping that you are surely feeling a little better!
    Best – Meagan, MultipleSclerosis.net Team Member

  • beth0406
    2 years ago

    I usually say I don’t feel right. Today is one of those days. I hurt and can barely walk. I’m dizzy and I am so tired. I know it’s stress and a lack of sleep.

  • Matt Allen G author
    2 years ago

    I just find that saying stuff like that often results in me getting frustrated because “people just don’t get it”. It’s not the same… as you know.

  • Meagan Heidelberg moderator
    2 years ago

    Thinking of you, Beth0406. With any worsening symptoms, we do like to encourage our members to speak with their physician or health team. As you stated, you know it is from stress and a lack of sleep, we hope that you are able to work through and alleviate the stress you’re going though. With that, should come better sleep I hope.
    Thank you for commenting as well as being a part of our community!
    Meagan, MultipleSclerosis.net Team Member

  • 157j2gm
    2 years ago

    Wow! you captured my(and many others)lives. this is a “printer”. meaning stories that hit home, i print for my family to read. not to be a “debbie downer”(snl reference), but to help them better understand me.
    it works!! and they appreciate it.
    your post has made the list! a good thing. thank you for sharing a wonderfully written post. much love and gentle hugs to all the ms warriors.

  • Sylvia V
    2 years ago

    Printing the articles that i can relate to and may help others understand is a great idea.

  • Matt Allen G author
    2 years ago

    Well I hope this can help you help them understand! Especially understand that a trip to Disneyland probably won’t make you feel better because so much can go wrong (Debbie downer reference)

  • Meagan Heidelberg moderator
    2 years ago

    Awesome, 157j2gm! We are so glad that you print the articles you find most helpful for your family to understand what you’re going through. That really is fantastic! We appreciate your kind words as well as you being a part of our community!
    Best – Meagan, MultipleSclerosis.net Team Member

  • Laurie
    2 years ago

    Reading this was like reading my life story. It is very similar to how my MS came on.

  • Matt Allen G author
    2 years ago

    I think it is the story of so many of us with MS and other chronic illnesses, people just don’t get that it’s not the same.

  • Meagan Heidelberg moderator
    2 years ago

    Thank you for commenting, Laurie! We appreciate you sharing with us and our community!
    Meagan, MultipleSclerosis.net Team Member

  • Kathi
    2 years ago

    Thank you for sharing this article…when you were talking about being sick every year during the holidays I could have been reading my own story…every Christmas til I was 16 I was horribly sick….there was one year I wouldn’t even get out of bed to open my gifts….now as an adult I don’t get a common cold…i get deathly ill….like steam treatments…sleeping sitting up….and feeling like I am dying…..i can not describe the daily fatigue I live with….and how same days I am sooooo dizzy and shaky and feel like I am barely walking….and the blurry vision…oh my goodness…..the tingling and numbness in my feet and legs and hands is awful….i am sorry you understand me because that means you feel awful as well….but thank you for sharing because I don’t feel so alone or crazy when I read other people s stories…

  • Matt Allen G author
    2 years ago

    Yes, I am sorry you can so closely relate, all the way back to opening your gifts, same story :/

  • Meagan Heidelberg moderator
    2 years ago

    Hi Kathi!
    You’re never alone here! Thank you so much for sharing your journey with us. We appreciate you being a part of our community!
    Meagan, MultipleSclerosis.net Team Member

  • Nancy W
    2 years ago

    Today I did not feel well. Just a little fatigued but relieved that my cough is subsiding. I find when I feel this way, I just don’t have the energy to deal with people. I was awoken this morning by a phone call and I had to make a quick decision. Then my cleaning lady showed up beFore I had a chance to eat. I need to eat in peace, or I can have a swallowing issue. I was just tired of talking to her and I usually enjoy a good conversation.

    I cancelled my lunch plans but figured I could handle playing Mahjong at the community center. After 90 minutes, I just did not feel like staying. That is when I told my friends, “I am not feeling well” and I left.

    Thanks for defining what not feeling well means to you. I am sure it is a little different for all us MSErs. I was just thinks no that when I stopped working 10 years ago, I could do most things within reason. but this year has been hard with more days when I am not feeling well than I used to have.

  • Matt Allen G author
    2 years ago

    We all can relate to each other’s struggles but all of our struggles (specifically) are just a bit different. Like, if 10 people cook the same dish, each meal will probably taste a tad different based on how they prepared it. IDK if that was a good analogy haha… But yeah, I am the same way with people. Sometimes I just want to be left alone.

  • Meagan Heidelberg moderator
    2 years ago

    Hi Nancy W – we are so sorry to hear that you’ve had more days that you’ve not been feeling well this year. We do hope that you’re feeling better today! We appreciate you reading our article as well as sharing a little bit about your life with MS!
    Thinking of you –
    Meagan, MultipleSclerosis.net Team Member

  • jensequitur
    2 years ago

    I’ve noticed that three or four days after I come down with a bug, I have a mini-flare. I think it’s a normal MS-related immune response to getting sick. If I’m lucky enough to break a toe, it’s the same – three or four days, and I start getting the worst spasticity/spasm in my leg. So I live in constant fear of getting sick or of having an injury. And then there’s the monthly women’s cycle, which causes me to have a pseudo-flare twice a month. So it’s fair to say that I spend 50% of the month feeling like I’m about to come down with something, or I’m just getting over something. When I do feel well, I’m not well, I’m just able to stay awake and watch an entire movie! And then remember it afterwards.

  • Matt Allen G author
    2 years ago

    Yep, it’s like a simple cold sends the body’s immune system into overdrive! And something like breaking a toe? I always just assumed the following flare was the result of the body going through some kind of stress. So when other people experience these things it’s not the same because we get the MS cherry on top

  • Meagan Heidelberg moderator
    2 years ago

    Oh goodness, Jensequitur.
    As you can see, you’re certainly not alone here! We are so sorry that you live in this constant fear of getting sick or having an injury. Thank you for sharing as well as being a part of our community!
    Best – Meagan, MultipleSclerosis.net Team Member

  • Learner2010
    2 years ago

    Thanks for shedding light on this topic.
    I use the term “low batteries” with friends and family to describe a hard day. A low (or even “no”) battery day means fatigue, achiness, feels like gravity is twice as strong, wobbly, and just plain worn out. The only solution is resting in bed or on the couch.
    The key for me over time is to avoid catastrophizing the situation (e.g. thinking that this is the “new normal.”) and not being critical toward myself (e.g. “You’re being lazy. You’re just a wimp.”)
    Be aware and thankful for those days you can be productive (whatever that means), and don’t beat yourself up when you have to allow your body to heal.

  • Matt Allen G author
    2 years ago

    We all need to go with the flow. Rest when we need it and get stuff done when we can.

  • Meagan Heidelberg moderator
    2 years ago

    Hi Learner2010;
    That’s great advice – thank you so much for sharing. Here is an article that goes along with how you describe to your friends when you’re having a difficult day; https://multiplesclerosis.net/living-with-ms/ms-fatigue-tank-empty/.
    Best – Meagan, MultipleSclerosis.net Team Member

  • bunny
    2 years ago

    I say my tank is low and/or I’m running on fumes. I am on Tysabri which I refer to as my Go-Go juice-LOL I just love getting my tank full but when it’s running low YIKES!

    I totally agree with embracing the good weeks,days, hours or minutes.

    BTW….I am a couch potato.

  • pmdpeace
    2 years ago

    Matt,
    You’re wise beyond your years. Please keep using your voice through writing about MS. A fellow warrior & fan.

  • Matt Allen G author
    2 years ago

    I appreciate that and will always try to be that voice for people

  • bunny
    2 years ago

    MS warriors rock!!!!

  • PlumCrazyLorrie
    2 years ago

    So true!

  • scrawf3602
    2 years ago

    So much of what you have written is what I have also experienced. Like you I would become sick every year like clock work. I also had asthma and every year when it would start to get cold my asthma would act up and I would wheeze. When I started getting Tsyabri all of that stopped. I know my doctors thought I was crazy when I explained that once I started taking Tsyabri my asthma went away and that I did not seem to get sick any more. I ended up having to stop the Tsyabri because I had a reaction to the medication. I went into anaphylactic shock while in the infusion chair so that was the last of Tsyabri for me. I have found that I have allergic reaction to every MS med that I have tried. So for the time I have decided not to take anything right now and see how that goes for a while. I take one 10 MG tablet of Prednisone once every 7 days sometimes I can go up to 14 days without taking one. At one point I was curious why I had reaction to all of the MS drugs. I was curious what was in each of these drugs that caused my reaction, I am allergic to mushrooms, penicillin, etc so I thought it might be because many of those drugs use by products of things like moss and mold.

  • Matt Allen G author
    2 years ago

    I miss Tysabri, I never felt as good due to an MS medication. I wonder if your body just doesn’t like drugs that tinker with your immune system? I don’t know? I really have no knowledge on that but it’s the first common denominator that comes to mind. I imagine you doctors have SOME theory?

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