You Know You Have MS When…

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People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.

You just feel exhausted

  • After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
  • The simple task of washing your hair is exhausting
  • Your kids think that all you do is sleep and that you’re sick all the time
  • You are so tired that you cry, and no amount of sleep helps
  • Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
  • You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
  • You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
  • You are tired or fatigued all the time, and you can’t find the energy to take a shower
  • Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
  • Feeling well-rested is a thing of the past
  • You must have a plan B, C, D, etc.
  • You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
  • It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking

The weatherman is not your friend

  • Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
  • You’re the only one in the room saying, ‘Is it hot in here?’
  • When 70 degrees feels like you’re standing inside of an oven
  • When you can’t do any outdoor activities due to the heat
  • When summer heat hits the triple digits, and you can barely breathe
  • Your body is better at predicting the weather than the actual weather man

Getting around and maintaining control of your body is challenging

  • You can’t play with your kids or take a walk with your husband
  • You fall over when standing still
  • Your upper body starts to walk, and your legs don’t get the memo in time
  • You don’t even realize it when your legs go out from under you
  • You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
  • You just tip over when standing still on level ground
  • When you wake up one morning, and you’re paralyzed on one side of your whole body
  • You keep tripping up over nothing
  • You are always dropping things
  • You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
  • Your hands are asleep and they don’t wake up
  • You are eating dinner and your arm suddenly jerks and your food goes flying across the table
  • You walk like you’ve had a few cocktails, but you haven’t had a sip
  • You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
  • You have to stop mid sentence because you’ve lost your train of thought
  • You take the dog for a walk around the block,and your legs feel like they are encased in cement
  • You walk like you are dancing to Michael Jackson’s “Thriller”
  • When your knees are locked as though there’s a magnet holding them together
  • When you go from 0 to pee in two seconds flat
  • You have to hold on to walls because you lack balance
  • You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
  • You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
  • You can’t stand without assistance
  • Your head goes one way and your legs another
  • You have to look at your hand and tell it to move
  • When you can’t pass a field sobriety test while sober
  • Despite only being 41, you walk like your 76 year-old mother
  • You have to lean your elbows against the shower wall to wash your hair

 Your mind isn’t as sharp as it used to be

  • You lose your train of thought while mid-sentence
  • You walk into a room and forgot why you went in there in the first place
  • You have the hardest time trying to say what you want to say, and your words come out making no sense
  • You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
  • You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
  • What was the question?

Pain and numbness become a part of everyday life

  • Your feet feel like they are on fire or you have frostbite
  • You are numb and tingly and have burning sensations all over
  • You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
  • You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
  • You feel like you are being stabbed, and you have a tingling feeling all over your body
  • You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
  • You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
  • You “feel” noises that go straight to the bone with subsequent weird pain!
  • Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
  • You feel like you are sitting in a wet bathing suit because your butt is numb

People assume that you are fine

  • When everyone assumes you are normal and they say, ‘Let’s go – get with it’
  • Your friends and family think you are fine because you look the same, so they think you are just being anti-social
  • You get angry hearing, “Gee, you can’t be feeling bad … you look too good”

Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?

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Making Commitments When You Have Multiple Sclerosis

Before I got diagnosed with MS, I would make plans, mark off the ‘Attending’ box on RSVP’s that I received,and I could also just up and do something if there were plans made abruptly, without a second thought.

That’s not the case anymore; I can tell you that much. And I have a feeling I’m not alone on this…

Now, I’m not saying that since I got diagnosed with MS that I don’t want to attend certain events or go out with friends, etc. I still want to do those things; there are just different circumstances now.

I really hate cancelling plans that have been made or not attending something, (like a wedding) that I had replied I would be attending, but my MS isn’t on a “regular schedule.” I can’t tell people, “Well, on Monday, Thursday & Sunday my MS is not cooperative, so I can only do things on Friday & Saturday.” If only it were that easy, right?

So the reasons I don’t like making commitments to plans are because I don’t know how I’m going to be feeling on that day… or at that particular ‘part’ of the day. I know it seems as if I’m “blowing people off,” but that’s not the case. If I said I wanted to attend something, it means I really did. My MS is just not “allowing” me… Kind of like it’s grounding me, like my mom did to me when I was younger.

So now, when people invite me to do something that evening… or the upcoming weekend, I tell them… “I really want to! But I don’t want to make any promises, so let’s see how I’m feeling when the time comes.” For those people who are close to me, they understand my reasoning for saying this… others don’t, and I have to explain, which can be difficult with people who don’t have MS, or who do not have a lot of knowledge of the illness.

My main message on this blog… “Yes, I want to do things…. But sometimes my MS has other ideas that I can’t control!”

 

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