A Fantastic Explanation of Multiple Sclerosis

Recently, while scouring the World Wide Web, I came across this website, and it is fantastic (per my title).

Not only is their website great, but so is their Facebook page.

So please check them out, share, and become more informed.

Enjoy the following...

(Copied and pasted from… https://multiplesclerosis.net/living-with-ms/know-ms/) 

You Know You Have MS When

You are probably all too familiar with the typical symptoms associated with having MS, like spasticity, cognitive impairment, fatigue, and difficulty with mobility, among many others. However, there’s so much more to having MS than what one would find in a textbook. We wanted to know more about your everyday life with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” We heard from over 150 of you, and here’s what you had to say!

Your difficulty with mobility takes its toll

·         You walk like your 76 year-old mother and you’re only 41

·         When you trip a lot, and have double vision

·         Your legs go out from under you and your brain doesn’t know it

·         When you’re standing still on a level floor and just tip over

·         You keep tripping up over nothing and you continually drop things

·         When you can’t speak correctly and have to hold onto walls because your balance is off

·         When no one realizes how hard you’re trying to just keep up but everyone just keeps leaving you behind

·         You fall over when standing still, or stop mid sentence because you’ve lost your train of thought

·         You trip on air when you’re walking on empty ground

·         When you feel good enough to walk the dog and your legs feel like they are encased in cement after just going around the block

·         When you can’t play with your kids or take a walk with your husband; when at 42 your kids are taking care of you

·         Your hands are asleep and they don’t wake up, of course your feet too, hence tripping and dropping

·         When I kept falling, tripping, and my legs hurt

·         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!

·         You get to work and wonder if you can lift your legs to get up the four stairs to get into the building

·         You trip over something earlier in the day because of ‘drop foot’ on the left leg and before bedtime you look at your scraped toes and say “what the heck happened to my toes

·         Your legs are numb and you can’t walk very well

·         You can’t stand without assistance

When everybody knows your name

·         When you know the MRI tech by his first name, and he remembers which arm you prefer to use for the contrast dye

·         When the MRI guy knows you by name

You appear to have had too much to drink

·         When you look drunk walking BUT have not had any or been near any alcohol!

·         You walk like a drunk even though you don’t drink

·         When you can’t pass a field sobriety test sober

·         When u walk like you’re drunk

·         You walk like you’re drunk and haven’t had the pleasure of drinking

The weather takes a huge toll on your body

·         Sunlight/heat/humidity in the summertime drive you indoors like a vampire, when previously it was your favorite season of the year

·         Hot weather kicks your b-u-t t

·         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 & everything goes numb and blurry

·         When you can’t do any outdoor activities due the heat

·         When 69 degrees is too hot for you and you sleep with fans blowing on high at you with multiple ice packs

·         When summer heat hits the triple digits and you can barely breathe

You feel like you’re losing your mind

·         What was the question?

·         You are in the middle of a conversation and you forget what you were supposed to be talking about or you can’t remember the word you wanted to say!

·         You lose your train of thought mid-sentence

·         When you walk into a room and forgot why you went in there? Or going out to eat and your brain is literally blank when you’re supposed to choose

·         You have the hardest times trying to say what you want to say because your words come out making no sense

·         When your words get jumbled up at the end of a sentence

·         Umm…what was the question?

·         When I struggle to speak and can’t form and remember words

·         You describe your symptoms and your neurologist looks at you as if you were speaking Greek

·         When you forget everything

·         You get confused when there is too much going on around you; you can’t even place an order at a fast foot place

·         When you can’t remember anything and can’t get your words together

·         You can’t remember anything

·         You forgot you had MS

People assume that you are fine

·         When everyone thinks you are normal and they say let’s go, get with it

·         Your friends & family think you’re fine (you look the same) and are just being anti-social

·         When I have all these problems mentioned but I “don’t look sick!”

·         When you hear “but you look so good”

·         Everyone thinks you LOOK ok so you should be fine.

·         You get angry hearing” gee, you can be feeling anything bad…you look too good”

·         When you want to hit the next person to say “But you look so good!

·         You feel awful and can’t think straight but look awesome

Fatigue overwhelms you

·         When you never, ever feel like you’re well rested or have gotten enough sleep

·         You’re so exhausted (and you just slept most of the night) and you get worn out just getting up to wash your hair

·         When you wake after 8 hours of sleep (if it’s a good night without insomnia) and feel like someone used your body to run a marathon, got mugged on the way back and returned it for you to get out of bed with

·         When my daughters tell me all I do is sleep and that I’m sick all the time

·         You get a full night of sleep and wake up tired

·         When everyone says, ” You look tired. What’d you do last night” and you reply “Nothing. I’m always tired

·         You’re too tired to get up but you just end up lying around in bed with anxieties about what you should be doing

·         You wake up with a little bit of energy, bounce upstairs & fix breakfast. Ah, there went the energy. Exhausted by this simple task, you must lay down again to rest

·         Your battery depletes after 45 minutes of walking and you become a complete physical mess on your feet

·         When you are tired or fatigued all the time

·         You can’t find the energy to take a shower

·         You are so fatigued you can hardly get out of the chair to take a shower, and you know when you finish you won’t have the energy left to go anywhere or do anything, even in the wheelchair

·         You’re tired and dizzy all the time

·         You are so tired that you cry and you do, and no amount of sleep helps

You seem to be in constant pain

·         Your body feels like you got into a fight with Mike Tyson, got run over by a semi, and were then kicked over to the side of the road. You can’t get up, even if you wanted to. You are in excruciating pain, everywhere, and it feels like you’re half dead

·         When you’re screaming from pain as what feels like loose electric wires whip out of control at the base of your spine

·         Limbs hurt for no reason

·         When you feel like you are being stabbed and you tingling feeling all over

·         Your vision is blurred but you never complain and you smile regardless

·         When your feet feel like they are on fire or frostbite

·         When you get those unexpected zaps of excruciating pain in your face, arm, leg, and you have stand there trying not to scream

·         When you’re screaming from pain as what feels like loose electric wires whip out of control at the base of your spine

·         When you feel continual electric shocks down one whole side of your body that are strong enough to make you gasp aloud. When your knee just buckles when you least expect it to

You feel like you are losing control of your body

·         When the top of you starts to walk and your legs don’t get the memo in time

·         Your head goes one way and your legs another

·         When you have to look at your hand and tell it to move

·         When you’re eating and your arm suddenly jerks and the food goes flying across the table

·         One of your limbs decides it’s just not going to function, right about when you need it to

·         When I pee my pants in the middle of a store

·         When you are in the market and the fireman are grocery shopping and they stop you because your face is drooping and you are confused and they think you have had a stroke

·         You do a great impression of Ray Charles and go blind

·         When you go from 0 to pee in two seconds flat! Where’s the restroom

·         When you wake up one morning and you’re paralyzed on one side of your whole body

You feel uncomfortably numb

·         Your legs r numb and your vision isn’t right

·         When you can’t feel your fingers but you feel like you’re walking on rocks

·         Numbing leg and a hug that does not stop hugging

·         You feel like you are sitting in a wet bathing suit because your b-u-t t is numb

·         When you are numb and tingly and have burning sensations all over

·         When you feel like you have warm pee running down your legs and go to feel and nope it just your nerves

·         Your legs feel like rubber

https://multiplesclerosis.net/living-with-ms/know-ms/

I Don’t Need a Damn Hug from Multiple Sclerosis

Look…

It is simple…

MS and I are not friends.

Yes...we hang out and do everything together, but that’s not by choice. The damn thing is stalking me, and if I could get away then I would. I don’t like MS and wish that it would stop liking me.

Of course I don’t blame it because I’m such a great person, and so why wouldn’t it want to be around me?

But enough with the hugs!!!!

They don’t feel good…at all.

So what is an MS Hug?

According to WebMD:

Multiple Sclerosis: MS Hug Pain

Like most symptoms of MS, the feeling is different for each person. You might have pain under your rib cage or anywhere between your neck and waistline. It can be dull and achy, sharp, or burning. It can last a few seconds to a few hours, and in rare cases, a few days.

Some people describe a slight tingling or tickling vibration, while others say it’s a crippling pressure below their ribs that can make it hurt to breathe. People often say it’s like wearing a girdle around the middle of your body. For that reason, you may also hear it called the “MS girdle” or “girdle-band” sensation.

What’s Really Going On?

In between each of your ribs are small muscles that hold your rib cage together and help it expand when you move, bend, or breathe. If these muscles have spasms, you feel painful, tightening pressure.

What Should You Do?

If you think you’re having an MS hug, talk to your neurologist or main doctor right away. The symptoms can seem like those of a heart attack, so it’s important to make sure that’s not the case and to rule out any other causes of the pressure.

(http://www.webmd.com/multiple-sclerosis/guide/ms-hug-how-ease-pain)

 Multiple Sclerosis: MS Hug Pain

Multiple Sclerosis: MS Hug Pain

The first time that I felt it…

It scared me…badly…

I didn’t know if I was having a heart attack or a panic attack. All I knew was that I wasn’t right in the least bit.

Now I know what it is, but it still scares me a lot.

What does it feel like?

For me…

My heart starts beating really fast, like it’s going to explode or pop out of my chest. My chest gets really tight. My breathing is weird. I panic. It doesn’t hurt all that much, but it is uncomfortable and very unpleasant.

It is what I assume a panic attack would feel like.

It goes away after a little bit, and there is nothing that I can do to stop it.

Also…

It doesn’t happen very often. Since 2006, I can only recall a handful of times that I was a recipient of a “hug”.

Luckily I am still of sound mind and I ask myself questions when it happens.

Do I have other symptoms that I believe that go along with having a heart attack? No.

Ok…

Is there something going on that would cause me to have a panic attack? No.

Or…

Is there something going on that would cause me to have a panic attack? Yes. Then why wasn’t I freaking out yesterday or even five minutes ago?

At the end of the day…

I’m not going to die. I may feel like I am going to die, but I’m not. So I can live with it.

My personal thoughts…

If you ever meet MS out on the streets and it goes in for a hug…get a restraining order on that bitch and keep it away. 

The Truth Is That I Should Never Drive Again

Of course I can drive. I’m a better driver than two squirrels working the pedals while a beaver is steering, or if you want to keep the comparisons human, I drive better than a ten year old (unless they grew up on a farm because you learn to drive early).

I have my license…so I’m legal to drive.

I haven’t killed anybody (or even hit anybody) with my vehicle (or otherwise…I’m a nice guy).

In all honesty…

I believe that I drive better than any stupid ass moron out there. The people that should have their driver’s licenses cut up and flushed down the toilet. The people that are reckless and actually do harm to people and/or property.

But…

I still scare myself sometimes, and truly believe that I should never drive again just to be safe.

It’s not a copout, or anything like that. The main reason is that I’m slow to react, and that can be deadly.

Seriously…

I can’t even use the remote control on the DVR to fast forward through commercials because I end up going way too far into the show, which can be considered normal, except I can take it to the extreme and go past the commercials, into the show, through the next set of commercials, into the show, and then have to try and close my eyes to not ruin the show I’m watching while rewinding it.

I’m slow to react…

I’ve had seizures while driving in the past, which I have shared with you, but I have gotten lost also.

Again…

Anyone who knows me, knows that I get lost in a paper bag. That’s normal because I have no sense of direction.

I’m talking about the other night when I was coming home. It was on a Sunday evening, and even though I was on a main road, there wasn’t a lot of traffic. I drove past the hospital and made a mental observation of an ambulance trying to turn the wrong way or something.

Then I remember being lost and confused because the road I was planning to turn on was miles behind me. I was down by the college.

I got my mind straight and drove home.

I could have been spacing off, but it felt pretty instantaneous to me…one minute I was by the hospital and then by college, like they were next door to each other.

That scares me.

I’m happy to report that my city doesn’t have red light cameras. I don’t know if I ran a red light or not…just saying.

So what does the National Multiple Sclerosis Society have to say about driving with MS?

A lot actually…here is a little piece of what they have to say…

Ways in which MS symptoms may affect your driving ability and safety

Research has shown that a person’s driving performance may be negatively affected by symptoms associated with MS. For example, recent studies show that both cognitive changes and spasticity (muscle stiffness or spasms) affect driving performance, putting the person at an increased risk for an automobile crash. In addition, difficulties with information processing and visual-spatial skills are associated with decreased driving performance. In other words, MS can impact many functions necessary for safe driving. Changes in MS over time may result in difficulty operating a car. Your ability to drive safely may be affected if you experience any of the following:

• Difficulty getting into or out of a car
• Muscle weakness or stiffness/spasms/cramps or pain, particularly in the arms or right foot
• Loss of sensation in the feet or hands
• Impaired coordination
• Slowed reaction time
• Fatigue
• Seizures or loss of consciousness
• Blurred vision, blind spots, double vision, loss of color vision
• Cognitive problems such as short-term memory loss; disorientation while driving such as forgetting your destination, getting confused about where you are or missing exits; poor concentration; inability to multitask; and confusion about how to turn the car on or off
• Mood changes: depression and/or problems controlling anger

Even if your MS symptoms seem to be mild and manageable, other indications that your driving safety may already be compromised include automobile accidents or near misses, moving violations, and the unwillingness of others to be a passenger while you are driving.

Tips on remaining safe while driving

Since the symptoms of MS often are not only relapsing or remitting, but also can fluctuate from day to day and during a single day, your ability to drive may also fluctuate. The following tips may be helpful:

• Don’t drive when you are having a bad day
• Keep your trips short if fatigue is an issue; avoid driving when you know your fatigue is severe
• Avoid driving during periods of heavy traffic
• Avoid driving in bad weather
• Avoid distractions such as eating, arguing with passengers or using a cell phone. Talking on a cell phone or texting while driving have been shown to increase the risk of fatal accidents and are now illegal in many states.
• Avoid driving when you have another illness (e.g., flu), because MS symptoms are often worse when your body is under increased stress

Link to read more about driving with MS…

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Driving-with-Multiple-Sclerosis.pdf

I Haven’t Written For a Long Time, but I Don’t Have an Excuse

Did I get better?

Am I cured?

No…

Life has just been crazy (the good and the bad), and it seems like I always put my own personal stuff on the proverbial back burner.

I still have good days, okay days, bad days, and days that don’t fit into any category because my whole day isn’t effected.

Actually…

Good and bad is irrelevant, because life must move forward. I can’t (I guess that I could) just let the darkness of this disease overtake me because I have things to do and bills to pay.

The future is uncertain, so why not make the best of today…of what you have…because I guarantee you that billions of people have it worse than you in some aspects of their lives.

Life is an adventure, and with MS it really is.