Great Description of what MS "feels like"

[cjldb]

This is a long post but I found this online and thought it was SOOOO very accurate for those of us who appear "well". The guy that wrote this has MS but is not in a wheelchair or on a walker and "looks good" as we all so often hear. He said people often wonder what MS feels like and he was speaking to a group of people who do not have MS. If you will take the time to read this I think it will be well worth the long post :)

I want to explain a little about what MS feels like. Words like "tired" or "confused" really are inadequate, so I thought I’d try a little exercise with you, if you wouldn’t mind indulging me.

First, please raise your hand if you’ve ever traveled internationally. [Most of them did.] Okay, good, that is helpful.
Please close your eyes. I want you to really try and come along with me on this trip.

You’ve been asked to take a business trip to a country you’ve never been to — let’s say somewhere in Asia [to make it really far]. It was a last minute request by your boss, so you really don’t feel prepared. Things were rushed and hectic, so you’re not sure if you packed the right stuff (you end up with a carry-on bag that is heavy and bulky), and you were late getting to the airport, so you worried the whole time that you stood in the long security lines that you would miss your flight.

You run to your gate in uncomfortable shoes and a heavy coat with your bags and are the last person to board. You are seated in a middle seat, and there is no room for your bag, so you stuff it under the seat in front of you, meaning you have no place to put your feet except on top of your bag. You are hot from running. (By the way, anyone who has seated themselves in business class, get up and move to the back of the plane for this flight.)
The captain comes on and welcomes the passengers aboard, informing them that flying time is 14 hours.

Fast forward ahead to the end of the flight. Your neighbor kept poking you with his elbow, then fell asleep leaning on you, so you couldn’t sleep. You couldn’t really eat, as your knees prevented your tray table from being level. The person in front of you had their seat reclined anyway, so it was pressing on your knees the whole time.
There is a little turbulence, but the plane finally lands. The person next to you drops their bags on your head trying to get them out of the overhead bin. People are taking their time getting in to the aisle, leaving you in an awkward position while you wait. You stuff your swollen feet in to your shoes and grab your bag, which seems to have gotten heavier.

You finally get off the plane. Nothing is in English (or any other language you may understand). It is 2:00 in the afternoon and everyone seems to know where they are going except you. You have not slept for 36 hours. The sun is streaming in, and everything is very bright and very loud.

So let’s have a look at how you feel at this moment:
•  You are so exhausted that you feel slightly nauseous and dizzy.
•  You’re confused: you don’t know exactly where you are or where you need to go. You know you will figure it out eventually, but right now, the lights are too bright and the sounds are too loud.
•  Your legs are stiff, and your feet are both tingly from falling asleep and painful from your shoes being too tight.
•  You need to urinate badly but don’t know where the bathrooms are.
•  You are too hot from the coat that you are wearing, because you don’t want to carry it too.
•  Your bag is heavy and awkward and you feel too weak to carry it. Then the strap breaks and you want to cry.

Okay, open your eyes. That moment is it. That is MS.

[sonia1874]

WOW...thanks for sharing.

[CanCanRun]

Very good description of it, indeed. =)

[maxthecat43]

Yep, it's pretty accurate.  

[SarahL2491]

yep, very good!  now to cut and paste that!  

[debgen]

I don't look or walk well, but I can totally relate to those feelings! Great description of MS!

[sllowe]

Awesome! And, that is the good days. Man, we are good. Walking around looking so well, but feeling like this..... ALOT.

Thank you so much for sharing this with us. Really is very spot on - add on an attack and I wonder what example can be given to capture the variety.

Nice to see you girl :)
-Shell

[atacker]

Thanks for sharing!! That is a wonderful example.

Follow up question to you that have been dealing with this for some time: I was diagnosed with dysautonomia (affecting multiple systems: medication/pacemaker placement to HELP somewhat) ten years ago after a severe case of mono. I have recently (last two years) had new symptoms and followed up with my neurologist who sent me for a lumbar puncture to "rule out" MS... to his surpise, the test showed positive for MS. The extra bad news is that I am unable to have an MRI due to the pacemaker. Any idea's of other test that can be done to confirm the diagnosis before starting the treatment?

Thanks for any help.

[zoefromsussex]

I saw that once before and I posted it on my facebook as I get so fed up with people being ignorant about MS and thought this would help ppl to understand. The reaction??? Still got the usual annoying comments along the lines of "oh I know such & such and she's got MS too but she's fine"...so irritating!

[Francyna]

Soooooo irritating, I hate when people minimize our disease. I stop telling folks. But you know people get very uncomfortable when their not informed about any disease that is incurable.  

I used to feel guilty when I was unable to get about like I usually did before my toxic affair consumed my life. But I learned to forgive myself.
When the MS beast shows up ( FATIGUE ) I surrender ; and rest myself, even if it means lying in my bed all day.

Thank you for expressing  how we feel. Only if they knew how long those feelings last.........