Letter to Normal People..
Having Multiple Sclerosis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand Multiple Sclerosis and its effects. Of the people who think they know, many are misinformed. In the spirit of informing those who wish to understand... these are the things I would like you to understand about me before you judge me...
Please understand that just because I have Multiple Sclerosis doesn't mean I am not still a human being. Some days I spend in extreme exhaustion. At times, sleeping for fourteen hours is all that will alleviate my symptoms. I get so tired. These emotions are all very strong and powerful. If you talk to me, and I might not seem like much fun to be with, remember I am still me. I am just stuck inside this body. I still worry about work, home life, my family and friends.
Please understand that Multiple Sclerosis is unpredictable. One day I may be able to do anything, while the next I may have trouble getting out of bed. Please don't attack me when I'm having a bad day by saying, "But you did it before!!" Please understand that sometimes being able to stand for ten minutes doesn't necessarily mean I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday, doesn't mean I will be able to do the same today. This disease gets more confusing.
Multiple Sclerosis isn't all in my head, and it isn't contagious. Nobody ever died from Multiple Sclerosis though they might have wished they could on really bad days. I can't control how often I feel good or how often I feel terrible. Multiple Sclerosis is a condition with lots of different kinds of symptoms. There is no cure for Multiple Sclerosis, and it won't go away. If I am functioning normally, I am having a good day. I can have good days, weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flare ups and suddenly become more sensitive mentally and physically. Other times there may be no warning. I may just suddenly feel awful. I can't warn you when this is going to happen because there isn't any way for me to know. Sometimes this is a real downer, and I'm sorry. If I seem touchy at times, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you understand. I have been and am still going through a lot. Multiple Sclerosis is hard for you to understand unless you have had it. It wreaks havoc on the body and mind. It is exhausting and I am doing my best to cope with this, and I live my life to the best of my ability. I ask you to bear with me and accept me as I am. I know you cannot understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding.
Please understand the difference between "happy" and "healthy." When you have the flu, you probably feel miserable with it, but I have a condition that doesn't leave. I can't be miserable all the time. In fact, I work hard at not being miserable. Just because I sound good, doesn't mean I feel good. I make myself be happy. That's all. It doesn't mean that I'm not in pain or extremely tired. It doesn't mean I am getting better or any of those things. Please don't say, "Oh, you're sounding good!" or "Oh, you look good!" I am not sounding good, I am sounding happy. Because I feel bad at times, I am always pushing myself, and sometimes I push myself too hard. When I do this, I normally pay the price. Emotionally and physically I pay a big price for overdoing it, but sometimes I have to. I have no choice. My limitations, like my pain and my other symptoms are invisible, but they are there.
With Multiple Sclerosis, myelin, which is the covering that protects your nerves, deteriorates. Look at it as your nerves being an electrical wire, and wires have protective covering. If the covering is removed, the wire gets a short in it. This is the case with Multiple Sclerosis patients. Your nerves are a wire. The myelin can replace itself, but during the time it has deteriorated and the nerve is exposed, damage is done to the nerves in my body and this damage is not reversible. Thus, causing numbness, pain, tingling and other feelings.
If you want to suggest a cure to me, please don't. I appreciate the thought. It's not because I don't want to get well. If there were a cure, all people with Multiple Sclerosis would know about it. Telling me I need to exercise more or that I just need to lose weight may frustrate me to tears and it is not correct. I work with a doctor and he tells me what to do for my condition.
In so many ways I may depend on you...people who are not sick. I may need you to call and check on me. I might need you to help me do things every now and then. You are my link to "normalcy" of life since I will never be normal again until a cure is found. As much as it's possible, I need you to understand me.
People with Multiple Sclerosis have different kinds of pains and feelings that are hard to treat. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is jabbing and excruciating. Sometimes it is prickly or numb. At times it feels as though electrical shocks are going through the extremities of my body.
Another symptom I have is problems with memory and concentration. This one is very scary. I may tell you something, and thirty minutes later tell you the same thing. Please don't say, "You already told me that." I also might be trying to tell you something and use a wrong word instead of the word I should have used. This is very embarrassing and aggravating, but normal for people with Multiple Sclerosis. It is a very frightening symptom.
All these symptoms and the chemicals in my brain can get me depressed as you would imagine. I get angry, frustrated and I have mood swings. Sometimes it may seem I am being unreasonable, but I can't admit it. I know this is a very hard thing about being with me. Every time you put up with me when I am in one of my moods, I am secretly grateful. I can't always admit it at the time, but I am admitting it now.
I know I asked a lot from you, and I do thank you for listening. It really does mean a lot.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~When We Say We Can't do Something Because We don't Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below...
What living with MS feels like:
- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?
- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won't fall down.
- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
- Tingling: Stick your finger in an electrical socket - preferably wet.
- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya' breathing?
- Shots: Fill one of our spare needles with saline solution, saline won't hurt you, we would love something worse but don't want to end up in jail. Give yourself a shot everytime we do our shot.
- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one...Bzzzzzzzzzzzzzzzzzz
- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
-Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet....Get a very large tattoo in your most sensative area.
- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep - it's not the
same at all.
- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there
till tears appeared.
- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.
- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
- Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.
- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and
erase three things and ask why you bought those things.
- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you'll get it.
- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day when you wake up.
- Swallowing: Try swallowing the hottest chili pepper you can find.
- Heat Intolerance or Feeling Hot When it's Really Not: You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms
- welcome to our world.
After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.
The REAL Causes of MS
"Perhaps MS is caused by the monsters that hide under the bed, in the closet and behind the curtains of kids' bedrooms. Make sure you shoo the monsters away or your kids might get it!"
"I heard that people who can not touch their ears with their tongue are at a bigger risk of getting MS."
"I think MS is caused by the rays that come from electric garage door openers."
"I wondered if I got MS through eating obscene amounts of chocolate ice cream."
"I think my MS was caused by watching 'The Waltons' as a deeply confused teen and fancying Sue Ellen."
"I know that I have MS because my Mom used to spank me with a wooden spoon when I was a kid and damaged the nerves until they got inflamed!"
"I'm certain I can trace my MS back to the time my sister left a frog in my bed."
"I think MS is caused by dandruff. Dandruff is caused by bubonic plague. Plague was caused by bad art in the 13th century and dirt under one's fingernails..."
"I heard that MS can be caused by not having one's dreams interpreted in a timely manner."
"I thought it was because we didn't wash behind our ears when we were little like our mothers told us to... but then I thought that if that was the case, there would be millions more people with MS. How many kids do you know that didn't wash behind their ears? I know two in my household!!"
"In my case, I believe MS was caused by listening to Howard Stern under a blanket in bed at night via a small ipod pressed tight against my ear."
"I think I read somewhere that scientists have indicated that MS is almost conclusively, very probably, highly likely and with hardly any doubt, caused by having spent one's past life as a squid. Or possibly something else, perhaps a crustacean of some kind, or not, but definitely something rubbery, jelly-like or even squishy, according to abundant, or at least substantial, extremely convincing evidence. Of sorts."
"I'm think my MS started after I got drunk and bounced on that bloody inflatable castle over the weekend (it's Wednesday and I'm still drunk.)"
"I'd always through that MS is a result of alien abduction (coincidentally these are the same aliens that are responsible for crop circles, the pyramids and the many sightings of Elvis). Those of us with the illness were abducted by aliens and put through a series of tests and studies (wait, no, that actually was the diagnostic process!!)."
"I've often wondered if I have MS because all I wished for when I blew out the birthday cake candles was a nice husband, and not a good health!"
"I think MS is caused by getting too many skinned knees and elbows as kids (as in 'multiple scars')."
"I'm sure MS is caused by having an orange/blue disabled badge. The proof is that most folk with MS have a disabled badge therefore it must cause MS QED (well at least if you're a neuro)."
"I reckon sitting on the floor while hovering is the root cause of MS."
"I think my MS was caused by nicking the turkish delight candy from any box of mixed chocolates I was given - or, for that matter, any box belonging to anybody else! Or did this greedy onslaught just make me fat?"
"I'm pretty sure MS is linked to ironing. I only did it once too, clearly providing utterly irrefutable research-based evidence that once one starts ironing, stopping is high risk even if the first high risk unprotected exposure doesn't produce immediate symptoms! Needless to say, my mother irons for all comers, having been fully convinced of the need to do so through an extended 26 year clinical trial."
"My spouse thinks its because those of us who have MS stubbed our second left toe on a rusty nail when we were 9 years old."
"I've convinced myself that my MS could have been caused by swallowing chewing gum when I was a kid." "In actual fact MS is caused by an excess of intelligence genes which threaten those who claim to be higher powers (eg neurologists?!)."
"I think MS is caused by doing daily household chores. This is why more women than men get MS."
"I think MS was caused by overly punitive toilet-training methods by mothers nationwide pre Dr. Spock."
"Maybe MS is caused by childhood pets with shells?"
"I heard that MS can be caused by failure to floss after each and every meal ('plaque' causing 'plaques')."
"Hairspray. When I first had optic neuritis I was asked by the Ophthalmologist if I use hairspray."
"I'll bet MS is caused by scooping the cat litter."
"I heard men were less susceptible to MS if they left the toilet seat up. I guess that's why so many of them do it..."
"Isn't MS caused by squeezing the toothpaste tube in the middle?"
"I always thought MS was caused by standing on the cracks in the paving stones! Remember 'Stand on a crack, break your mother's back'? I bet we had it wrong. It should have been 'Stand on a crack, gain another plaque!'"
"You are all wrong! Even my wife has got it wrong. She thinks that it was caused by walking on the cracks in the pavement when I was a child. I didn't do that so it must be caused by NOT walking on the cracks in the pavement when I was a boy!"
"It's my suspicion that MS is caused by not eating your Alphabet Spaghetti in alphabetical order."
"It's often concerned me that MS might be caused by wearing your socks on the wrong feet."
"To my knowledge MS is caused by microbes implanted by an alien intelligence that will eventually take over the earth. Those of us with the illness already are the ones who are considered to be the biggest threat to the alien force, hence we got it first."
"I think MS is caused by being forced as children to make our beds and tidy our rooms. If we had been allowed to be messy we would be fine now."
"Perhaps there is some connection between MS and slurping your soup while watching 'The Playboy Channel'."
"I read that MS came about after a passing comet sprayed us with an alien virus."
"If I'd never gone near a neurologist, I'd never have been diagnosed with MS!"
"I've thought hard about this, and wonder if MS is due to us not having our television satellie dish in the right position. Maybe we are picking up the wrong signals. You never know, do you?"
My Number One Favorite Cause: Lack of quality beer nuts when I visit the neighborhood bar on the corner!