To live with Multiple Sclerosis.
One day’s not like the next. And the only thing you can count on {in regards to the disease}, is not to count on anything.
As I mentioned yesterday, I haven’t been feeling so hot. Wednesday afternoon things got a whole lot worse and I ended up calling my doctor’s office. He’s afraid I’m having a relapse and has put me on a course of steroids. The oral kind {thank God}, not the nasty, debilitating IV variety.
I twittered and facebooked for prayers. Honestly, it was a weak moment for me. I also had church Wednesday night and had been put on the prayer list {thanks mom!}, so by the end of church, I was feeling much stronger emotionally. Thank you everyone for your prayers … I love the power of prayer!
I’ve recently found a few women around the web who are also suffering from MS. Once again … this blogosphere thing just blows me away! Anyway … I’ve loved reading their stories of suffering, strength and hope. I hope you’ll stop by to visit them and learn more of their stories and what they’re going through. Every time I read and/or learn of someone else’s story, it gives me a new appreciation for my own … and knowing I’m not alone.
Anyway, one of the things I have the hardest time with is talking about my symptoms. At least for me, it’s so hard to explain exactly how I’m feeling. So I usually end up with this generic, “I’m not doing so great” response. While perusing Brooke’s blog, I came across these great descriptors of some of the things MS patients feel and go through. Granted, I don’t feel all of these and some, not to the great extent of the description given … but let’s just say it’s like a smorgasbord of symptoms. I have me a little of this and a little of that. Sometimes a lot of this and a lot of that. You know, just for fun the disease let’s us mix it up a bit.
One day’s not like the next.
The following is verbatim from Brooke’s post:
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 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 every time we do our shot.
Side Effects From the Shot: Bang your 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…Bzzzzzzzz
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.
{from tracie: my problem is actually that i can’t pee. i’ll go days
with only a few dribbles & horrible kidney pain and bloating}
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.
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 til 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?
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
Okay … and now having said all that, of course I’m feeling guilty like I’m dropping a load on you poor readers! But I guess as part of MS Awareness week, it’s important to have people understand as much as they can about this very strange disease. And I guess … even more important to understand … when you see me, it’s very, very likely that you won’t even know that any of the above things are going on in my body. Last night in talking to my sister … she called it the silent disease. I’ve never heard that before … but that’s exactly right. Especially if someone’s tendency is not to complain or talk about every little detail they’re feeling.
Anyway … wow … long post, no photo. :(
Just a final thought to thank everyone that has participated so far by donating or signing up for my walk. So far we’ve raised $1,900.00!!! Let’s keep it going … if you haven’t already donated, or if you’d like to join our team … please follow the link and join! And be sure to spread the word!! The more the merrier, I say! ;)
if you need anything, please please let me know. we are all here to help, so please let us. praying for symptoms to vanish, completely, forever. love you.
this is an incredible post!! i know i will never “get” what you are going through, but to say the least, i am now much more aware of how MS affects you (and others). silent disease is right!!! i know i am going to reading this post again and again!
and i have to be honest, as i started reading i thought i might try the examples out…just to get a feel. yeah, i was already concerned about the difficulty of walking in weights, etc & then I got to the pain! um, no thank you! i wish everyone with MS could just say the same…”thanks, but no thanks, we’ll pass on that!!”
i think the one that affected me most though was “fear”…to not know what will work or not work, hurt or not hurt, what tomorrow will bring. so scary!
i’m glad there are others in the blogosphere living with MS too. What a great way to connect, share and support each other! :-)
I know I can’t do much to help you, but I’m always here to listen & give a hug, i’m praying for you, and i’m here if you need anything. i love you my dear friend!
I can’t even find the right words because I can’t begin to know how you feel. So I’ll just end with prayers for an end to MS and an end to your pain and suffering. Prayers and love coming your way!
Your right we have no idea what you are feeling because you do such an amazing job of not letting on. I can not imagine how you do what you do but you are a shining of example that it can be done. Thank you for sharing…now I will know even when you don’t say. You are surrounded by so many who love you and we are all praying for you. Hugs and lots of love being sent your way!
I’m speechless. I knew it was bad but truly had no idea just how awful this disease is. My heart goes out to you and everyone else afflicted by this nasty illness. You’re in my thoughts & prayers and I hope that gives you some relief.
The fact that you endure all of these symptoms in near silence is incredible. I wish there was something I could say or do to take away some of the pain. All I’ve got right now is the awareness that you are even more amazing that I thought (and you were already pretty high on the list!)
Hugs to you…
Traci,
The descriptions are so visual and heart wrenching. I have another friend here in Racine who has been dealing with MS flares for years now.
I also have a friend who moved to Racine about 2 years ago. She is a retired VP of MS Society in DC. I’d be happy to introduce the two of you.
I have a condition that is both similar but nearly as devestating..but one that there is no treatement for. The fatique and loss of muscle use is so frustrating…and on good days..hey we can do anything.
It does teach us to live in the moemnt, does it not!
know you are wrapped in God’s love and that of all his flock here on earth.
Blessings
What a great post. Thank you for helping me understand a bit better about what it is like to live with MS on a daily basis.
Thoughts and prayers with you and hope you have a better day today!
Don’t tell Les I am commenting on your blog and not hers. I don’t normally read your blog but I was steered to yours through Twitter. I am really impressed with your ability to communicate your thoughts. Your story reminds me of a lesson I give my student pilots…”fly the plane no matter what the distraction”. You continue to strive to meet the expectations of others with the huge distraction that is MS. I want you to know that you are a huge champion for others with MS and those close to you. I pray for immediate relief for you. I know that you can land the plane and still be loved immensely.
I know someone who has MS and I am aware that it is tough most of all to you and as well as the rest of those close to you but after reading this. It is tougher than I thought. WOW! I feel sad. I also feel encouraged by your voice and positive actions.
Thank you so much for sharing all of this with us. I think it really helps us try to understand what you are going through. You are one amazing woman Tracie! We love you so much and are praying for relief of these symptoms and for the cure of this awful disease. XOXO
This post really opened my eyes to the daily reality YOU and all people with MS endure. Also— I’m on page 46 of 29 Gifts… I feel like I’m learning so much about MS… I really knew nothing before I met you. You are doing an amazing job teaching and ENCOURAGING us all. ALL MY LOVE! K
wow……… I knew some of these, but many were new to me. tracie, prayers are powerful and I will pray for you and all that have MS. glad to be a part of your walk team.
I love how she described every little thing in such perfect detail. I think that is one of the hardest things, & sometimes, only sometimes, I wish that the people we were close to could just switch us places for a few days. Then, maybe, they could understand more about what we were going through. I can take the pain and the truly nastiness that comes with MS, but I think that more understanding (and definitely COMPASSION) would be the greatest thing to feel. Thank you so much for sharing the things that you do. I really appreciate it!
*p.s. I also appreciate being included in this post! What a happy way to start my Friday!*
I often think about how cool it would be if God allowed us “normal” folks to be able to trade in some of our good days for some of your typical days. I’d welcome the opportunity to shoulder what you’re going through in a heartbeat just so that you can have some better days. This was a good article and helps to shed light on what I’ve never really understood….