TM and me

I rarely talk about my illness.  Mostly because I am not a whiner and we all have obstacles we must overcome. I came across a blog of another person with Transverse Myelitis and this is what was written on a post.  It pretty much sums things up for me. She too, copied it from another blog so I do not know who deserves the credit.

I don’t have MS but have TM (transverse myelitis), something related with many similar symptoms. Most people do not have a clue what it feels like or what I go through to get through a day. I walk with a cane and a full-length leg brace which while it allows me to walk also adds more weight and uses more energy.
I got this off another blog, it is not my own writing but I felt that it is accurate and worth sharing.

Another favorite of mine is the Spoon Theory, it can be found on this website:
http://www.butyoudontlooksick.com/the_spoon_theory/
Please read it too!

MS Symptoms – What It 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—

What You Can do To Understand 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.

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.

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.

Shots… Fill one of our spare needles with saline solution and 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…bzzzzzzzzzzzzzzzzzz

Balance and Walking Problems… Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.

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.

Pins and Needles… Stab yourself repeatedly with needles all over your body or better yet….Get a large tattoo.

Dizziness (Vertigo)… Get on a gently rocking boat all day and all night and take several walks around the deck.

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.

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?

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.

Depression… Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one 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.

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.

And 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.

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About nikimeiners

Friend, Wife, Mom and an all around crafty old soul. Artist, Writer, Creative Director and Style Maker. Lover of old, fond of the new. Craver of excitement, establisher of the calm. My website http://365daysofcrafts.com Bio- Growing up in a small mid-western town, Niki Meiners was surrounded by a modest, resourceful and very entrepreneurial family. Her simple upbringing spurred her "Can do" attitude and gave her the confidence to try any challenge placed before her. She knew there was more out there than just her small town and set off after high school to explore the world. It was through these travels that she discovered her love of art and her desire to make the world a prettier place. It was not until she suffered a paralyzing illness that she realized she wanted to reconsider her corporate career as a Chief Paper Pusher, and her thoughts immediately turned to her first passion, art. In 2003 she began an odyssey that would take her from product design to publication and everywhere in between. She is known for her distinctive, high quality creations that feature a diverse mix of styles and highly creative approach to even the smallest detail. Niki is an Idea Architect, easily outlining every project from concept to completion. Her creations are simultaneously beautiful and functional and her in depth knowledge of the industry allows her to produce projects with a specific understanding of both the consumers and the manufacturers. This knowledge has allowed her work to be featured in the industries leading craft and lifestyle publications and manufacturers’ websites. nikimeiners at gmail.com
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4 Responses to TM and me

  1. Wow Niki- i have a new appreciation for you now! If this is how you feel, you are truely amazing as you Rarely complain,

    Hugs,

    Mel

  2. Heidi Boyd says:

    I’m just so sorry.
    I greatly admire your humor, strength, and optimism!

  3. bluomni says:

    I also have transverse myelitis. I came down with it about 10 days after giving birth to my long awaited baby girl through emergency c-section. I basically lost my ability to walk in a span of hours. I deal with a lot of MS symptoms as well two huge ones are chronic pain and fatigue. I was misdiagnosed initially. Very scary….how are you doing these days?

  4. yamahamama says:

    I have TM also. I have some of those symptoms, but not all. I’ve only had this for 6 months, and it’s my first summer with it. If it’s going to be like today, I am not looking forward to it. It’s about 92 degrees & I feel like I’ve run a marathon & spent the day at Disneyland. It sounds so lame to say I’m exhausted–but it’s like exhausted squared. We’re in the process of moving, so I can’t get any crafts out to work on, but I can plan some things for when I’m all set up, That could help keep my mind off my physical issues. Then I will do some yoga before bedtime. Learning process, this first year I’m guessing!

    Just now, typing my screen name–I had to give up motorcycling because my legs aren’t strong enough to hold my bike up. Maybe someday I’ll ride a sidecar rig. 🙂

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