Our Life: 2010

I stole this blog and as harsh as it may sound, it truly does represent a Day in the Life of an MS patient. We have to explain ourselves so often to friends, family and total strangers that it can become very frustrating. So, please read this and maybe you'll better understand how tough it is for anyone who is suffering from a chronic illness.

WHAT LIVING WITH MS FEELS LIKE...
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...

- 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 and try to 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 and wear them for an entire day.
- Tingling: Stick your finger in an electrical socket - preferably wet.
- Tight Banded Feeling: Put a 12 inch wide belt around your torso and make is as tight as you can and leave it there for the entire day. How ya' breathing? * For the ladies, this is even more fun when wearing an underwire bra...talk about painful! It's like having an invisible corset on 24 hrs a day.
- 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 your head against a wall, wrap yourself in a heating pad, tightly wrap your entire body with an ace bandage, and 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. For your arms, hook bungee cords to your shirt collar and cuffs on your shirt sleeves. Now, go dancing. * This is also known as Myoclonic Seizures in your muscles. They usually occur when you're going to sleep or waking up and it's like popcorn popping in your muscles all over your body. Not fun at all!
- Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one - Bzzzzzzzzzzzz
- 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. Then we point out 2 restrooms in a crowded mall and 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 sensitive 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. I agree! MS fatigue overwhelms you to the point sometimes that you have to sit down/lay down right where you are...even if that's at the grocery store. Your body feels like lead and you have an overwhelming desire to sleep for 16 hours. No amount of rest or exercise can prevent this from randomly happening to you. I guess you have to experience it to know how it really feels.
- 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. I no longer have the ability to multi-task and can only drive if there are no other distractions in the car (music, cellphones, people talking to me, etc.). I am now the Queen of the Post-it Notes! :)
- 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 until tears appear.
- 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. *Try this too: put blinders on the outside edges of your field of vision (like horses wear) and wait for someone to unexpectedly walk up next to you and scare the living daylights out of you!
- 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. Again - I should have stock in Post-Its!
- 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. This is fun when it happens out in public and you're all by yourself.
- Depression: Take a trip to the animal shelter every day 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. This is the worst issue to deal with - it's a constant struggle to stay positive.
- 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. *Another note on this - try eating crumbly foods that take 3 or 4 swallows to get down and chew all of your food in tiny bites and pray that you don't choke when you're alone, much less out in public.
- 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 in 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.
I have one more symptom to add:
- Inappropriate Emotional Responses: Sometimes you may end up laughing at something sad or crying when you should be happy. This is an effect of the plaque on the brain. It can be very frustrating when your reactions to a situation can prove to be embarassing!
Now add all of the above symptoms - Welcome to our World. :)
Then Finally... 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!
MS is the "invisible" disease at times, but that doesn't mean that we aren't fighting a daily battle on the inside. Be patient with us and we'll be patient with you. Support us and we'll fight the battle together!