View of MS to Others

View of MS to Others

We all know that MS is a complicated illness to live with… so how do we even begin to explain it to our family and friends???

There is a very popular article called “The Spoon Theory.”1 If you haven’t read it, I suggest you read it soon and share with those who you would like to explain MS to.

People also use other analogies when describing MS. Such as – A wire… something cuts through the outer coating of the wire, leaving the actual wire exposed… this is used as an example of what happens to the myelin when it is attached, and the actual wire, is your nerve being exposed (the wire coating being the myelin).

What I have come to understand by living with MS is that when people have a “general” idea of MS… they believe that you are only affected by MS when you’re in a flare. But that isn’t the case for most of us… Just because others have a general concept of what MS is… that doesn’t explain to them the symptoms that come along with the damage that has been done to our Central Nervous System.

Spasticity/Tremor & Fatigue seem to affect me the most. Along with Neuropathy (Nerve Pain). One thing I find VERY difficult to describe is the “MS Hug“. I guess the best I have come up with is getting squeezed in a big hug by the Hulk, or something in that general area.

So, for all of these symptoms that we suffer from due to the damage done by MS… those medications have side effects.

I don’t think everyone can grasp the concept of “I’m tired” … coming from someone with MS. I especially don’t feel that they can compare how they feel to how we’re feeling, like it is relatively close. I’m tired ALL the time. I take Fatigue medicine just to be awake during the day, but then you add on the side effects of say my Spasticity medicine, that causes drowsiness.

Another thing that is difficult for me to really have people understand, is that MS is different for every single person diagnosed. Kind of like a snowflake, we all have something in common… but none of us are identical with the things MS does to us and how it makes us feel.

I’ve had to explain to strangers WHY I’m using a Handicapped Parking Spot…. That conversation began when someone yelled at me, “How DARE you abuse your grandparents parking pass like that! You should be ashamed!” So, I’m getting out of the my car during this… once I’m fully out of my car, I have my cane by my side… this person decides to high tail it far away from me as fast as possible!

Needless to say, I think there is a misconception that makes some people believe MS means your in a wheelchair, or in some other way it “shows” that you are disabled in a way, or have an illness. Now I know that first being diagnosed, a lot of people first think “Am I going to end up in a wheel chair???” Well, obviously, no one can answer that question for you, because no one can predict the future or how your MS will treat you. When I was diagnosed at 22, a few months later I was in a wheel chair. I’m not anymore. I’ve had to use every assistive device you can think of, but it’s not all day every day like when I was in my flare, it just depends on how I’m feeling that day/time.

A lot of my friends will see me when I’m having a “Bad MS Day”… the day before I “appeared” perfectly fine. That’s another misconception. Just because I was fine last week, yesterday…heck even that morning, doesn’t mean I’m going to stay that way.

The people who have been around me enough, know that when I stopped talking about something mid sentence…it’s not because I am off day dreaming… I just forgot what I was going to say…or just can’t find the word I want to use, so I start stuttering… Sound familiar? I’m thankful that my close family and friends help me find the word I’m looking for, or just wait for me to figure out what I was trying to say. Sometimes an hour later I remember – and I just jump right back in to a conversation with what I meant to say in the first place.

The thing is, MS is soooo different for every single one of us. There isn’t someone who could be like a “spokesperson” for MS…because not ONE person can speak on behalf of what MS is like for ALL of us.

You will also learn, if you haven’t already, to frequently say “I’m fine” when someone asks how you’re doing – even when you’re not. It’s just easier than trying to explain it to someone, who probably was just asking you how you were feeling out of common courtesy.

I know I’m rambling right now, I’m just going to blame that on my MS… just sayin’.

Hope everyone enjoyed my blog/rant! Let me know how you describe MS to others and how you’re feeling! I’de love to hear how others handle this situation.

xoxo

Ashley Ringstaff

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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.
View References
1. The Spoon Theory. Available at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Comments

View Comments (7)
  • DianeD
    5 years ago

    Wonderful article Ashley. You described exactly how I feel. I particularly appreciated that you brought up how it feels to be asked ‘how are you?’. Sometimes I want to say ‘tired to near exhaustion, embarrassed that I have to wear incontinence products, mouth feels as dry as the Sahara (medication side effect), off balance, etc’, but instead I say ‘pretty good’ and smile.

    When you mentioned how things can change rapidly, one day feeling pretty good to next day not being able to get out of bed, I could relate.

    My DH and I planned a trip to South Korea, where our son and family are living due to a job assignment. This was ambitious, but I worked at going like my life depended on it. We got special tickets (1st class domestic and business class international; (I found a good deal, though tickets were unrefundable!). I packed, found easy care clothing, got all my ‘supplies’ together, etc.

    The day prior to the trip, after some fairly hilarious glitches, we went to the airport hotel and settled in for the night. So we thought. Our room had a refrigerator which made loud and regular thumping noises. It was very annoying to me, but DH doesn’t hear some things so he fell asleep rapidly while I tried to pretend it was quiet.

    I didn’t realize at the time that the sound came from the refrigerator, so I tiptoed around the room trying to figure out what the sound was. I traced it to the refrigerator, but didn’t have the ability to disconnect it. I finally had to give in and wake up DH. He pulled the fridge out and unplugged it….ah, silence.. back to bed. Now my foot began to itch maddeningly (nerve itch) and I got up and tried to walk it off. Started coughing & that brought on urinary symptoms. That is pretty much how the night went, so as morning came I was very exhausted. I lost my resolve then realizing that the impending 19 hour trip (with one connection) was not going to go well.

    If we made the 2 hr. hop to Chicago and the 3 hour layover, but I couldn’t go on, I would be stranded.

    So it hit me suddenly that this trip was not likely a good idea for me. My DH and I looked at each other, hugged and decided he would go on. We made a mad dash home; kissed and he left. I was in a real muddle, but it was a good decision.

    Sometimes we feel pressured into doing things, imagining we will overcome all obstacles, even MS. I think, well, maybe I could have kept going, but then I realize I do have limitations and I should respect myself and others by accepting them.

    No one who reads this, particularly if you don’t have MS, will ‘get it’. Sometimes pushing on is not the answer and we have to listen to our inner voice to know what is right.

    DH had a good trip, sent me lots of wonderful pictures and videos. Neighbors rallied round and offered ‘any help I might need’ while alone. I felt surrounded by caring people.

    Sometimes you just have to accept things.

    Diane

  • JillianKS
    5 years ago

    Hi Ashley

    I really enjoyed reading your blog and have shared it with others as a way of explaining how I feel most days.

    The unpredictable nature of whether it’s going to be a ‘good day’ or a ‘bad day’ is something that still frustrates me immensely. I’m only 18 months into my journey but I am realising more and more that just ‘going with the flow’ is a necessary coping technique!

    I wrote a book on MS called ‘TAKING CONTROL’ that was released in May this year and became an Amazon best seller. I interviewed 20 people who have been diagnosed with multiple sclerosis over the last 30 years and documented their stories.

    While you’re right that MS is different for everyone I do actually think there’s some amazing spokespeople out there who can advocate how people living with MS CAN and DO live an inspiring life and work out a way to get on with things. These are people who bring more awareness to the disease and in turn start educating the wider population on what we face every day. It’s less about talking about specific symptoms but more about showing our character and resilience in coping with a pretty ugly disease.

    I look forward to reading more from you!

    Jillian

  • ydress
    6 years ago

    Reading this made me send this to my husband. I know he struggles along with me since I’m always fatigued and stopped bring in an income 9 years ago when I was diagnosed. My son was 3 at the time and now just turned 12, at this age he is at that age this is not the easiest to deal with. I was such a strong person before I got sick and as strong as I try to be, this illness can get the best of me. The last year I have dealt with severe fatigue to the point all I did was sleep for months, it was the oddest thing. Then my doctors discovered I had 3 episodes in less than 6 months. It’s been 5 years since I have taken any drugs for my illness, now I’m on 300mg bupropion (wellbrutrin), 75mg Venlafaxine ( eflexsor), these drugs work for depression and fatigue, it took months to get the dosage right. Even though my depression went away, I was still severely fatigued, even my MS doctor was baffled why I slept all day. I was a very active person for 5 years up until June 2012. I took Bikram yoga classes daily and worked out at the gym 3 times a week, so I was not this type of person to lay around all day and get nothing done. I started 20mg D-amphetamine (Adderall) a few months ago and that has helped so much however I get my symptoms of numbness in both hands and tingles in my arm. Lately I find myself a bit out of balance, I’ve been very fortunate with this illness not to have walking or visions problems. I also find on this upper Adderall if I just stop my hands and legs treble ever so slightly. I find on this upper I tend to do too much and my body pays the price for it the next day. I’m also very fortunate I have an amazing husband that does everything for our son. It’s like my son is being raised by a single parent, that makes me sad and hard for him to understand. I feel even my husband forgets that I tend to rest so I have the energy to go to baseball games and school functions. It’s hard on me when my husband takes my son to school and I’m just waking up or still in bed and when they get home afterward at 3:30 I’m still laying in bed with my computer. What they don’t see is what I get done after they leave and by the time they get home I’m exhausted. That’s around the time if I have to do something in the evening I drink a large latte to stay awake however at that point my body starts to ache, so I take a Xanax (Valum) to relax me. I also need Xanax to go to sleep otherwise I have insomnia. So even though I am on all these drugs, I still get tired very easily and seem to be very sensitive toward anything not kind being said to me, form my 12 year old son and my husband that does everything and no longer has time for me. That makes me feel weak and useless however that’s just the way it is having MS is like an uninvited guest that comes and goes and sometimes stays to long with you.

    I will be starting the BG-12 when it comes avaliableyet, my body is in shock with all these medications. My struggle has lasted now a whole year and continuing.
    I feel alone most

  • ydress
    6 years ago

    of the time and wish I had an MS buddy to walk with in the Marina where I live, I stopped hanging out with a few close friends I have because I was getting embarrassed having to cancel the day of, when we have planed something in advance. I dislike even going to my son’s school because the mom’s there all ask how are you feeling, they know I have MS however when I start to tell them what I have been going through I realize they don’t really want to hear about my struggle. Quite frankly who really does other than each other with the illness.

    I find having a Handicap plate on my car and Placket, living in San Francisco is a silver lining. I only had someone ask me once as I was parking my car at a green meter and putting my placate up, as I got out of my car, I said that is none of your business. I don’t let people’s stupidity ever bother me. As a matter a fact I feel special having this privilege with my car. I really do not drive much, I live on a street where my you can walk to everything. I love the connivence of having everything near by, even my son’s school is a few blocks away. I really have nothing to complain about because I have my husbands help and a few good friends that really understand my illness is different every minute of every day.
    I agree it’s easier to say I’m fine however with my family I tell them so they understand why I’m in a mood and or need rest and quiet time.

    MS definitely makes you look at life differently and appreciate the little things most people take for granted. I stay positive, do what I can and deal with what comes my way the best I can. That’s all you can really do even if you did not have illness.
    Be well my MS friends and I pray all our struggle goes away forever!
    xox

  • Nick
    6 years ago

    I have learned that unless you have MS you can’t understand what it does and how it affects people. That is why I love these discussion groups.No matter how good this article was, or the spoon theory, if you don’t live with it you don’t understand. Even the people closest to me, that love me a great deal, forget the little part they know of what I deal with every day. I have learned to compensate and so the symptoms are not in their face and obvious. Even though my symptoms are a battle for me every day it is not something that shows so others don’t see it, and honestly I don’t think the want to.

  • Lisa
    6 years ago

    I enjoyed your story. I have been in those shoes many times. I resent the having to explain myself to others and to do very inadequate job of it for lack of terms. At least we can identify with each other. Some of us are very good at putting into words. If you don’t mind, I will share your story with friends. Thanks for the words. Lisa

  • Sonya
    6 years ago

    Dear Ashley,
    Thank-you for such a wonderful article.
    You could have easily been describing me, for the most part, & my day to day journey with MS.
    I suffer from spasticity, not often, but enough to make life interesting 😉 I also have balance issues, seems the more I walk, the more I feel as though I may need help. I too have endured the ugly looks when parking in a handicapped parking spot. Makes you realize just how judgemental people can be, & so happy I taught my children to never judge a book by its cover.
    I find myself often playing “search for the word”. That can be so frustrating, & at times humorous, when the word or phrase, finally does come to mind….maybe within the conversation, maybe not!
    My eyesight has been the scariest for me, have had optic neuritis twice, lost sight first in the right eye, sight returned, then the left, a few years later, sight returned, and things seem to be ok for now.
    My biggest challenge is the fatigue. I have been tired many times, but those two words have a complete different meaning to me, now that I have MS. It is a tired I can’t even begin to describe, & only someone else who has walked this path understands. I live in the south so the summer heat & humidity really do a number on me!
    I wish you the best as you continue to cope with the day to day MS life.
    Feel free to rant to me anytime 🙂
    Sonya

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