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Marina

How We With MS Feel...

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Sluggish
Marina

Contributed in this topic by "broken butterfly"

 

HOW WE WITH MS FEEL

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 doctor 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 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 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 litre 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 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-diarrhoea 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 un-cushioned chair and stay there till 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.

 

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 chilli 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.

 

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 counselling is the answer.

  • Like 11
  • Funny HaHa 1

Marina

(belated DX in June '05, SPMS)

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donna robertson

found this amusing yet sad, good one though , as an mcs sufferer a lot of the symptoms overlap in much the same ways, the brain fog, memory loss, heavy legs , sore feet, muscle weakness. headaches, eye problems, tired all the time, the list is endless, mabye we should all find out more about each others illnesses, glad I found the board as not as much on for mcs at present, god knows why, as Ive had it for many years.

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danlexboo

Wow, how true these feelings are!!!!

 

I know i am newly diagnosed but i have had a lot of these symptoms for a while now, especially loss of balance, but, when i fall down the stairs my children don't bat an eyelid or just laugh. I guess if i want sympathy at home i need to look elsewhere!!!!

 

But thank you for knowing and putting everything in writing.


Regards

 

James

We are waiting, we have not forgotten -Trans Siberian Orchestra 2004

 

 

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marion

Yes, i'm reading a good story about myself there. Mr or Mrs M.S fighting and eating and enjoying my body.A long time here, living with M.S and other illnesses too but I am still loving my life...the deep feelings in us, a present into our lives....

 

back to your drawing of your helper marion , talk inside marion...your place.

:cheerleader3:

 

 

:cheerleader3:

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steven

brilliant analysis,sittin here chuckling away.

if asked tocompare side effects i equate to imagine your body after your very worst hangover then multiply it by 4....

 

good read

stevos :hearts_circle:


s f

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Sharon

:cowboy: Thanks Marina,

I have printed this off to show my family.

 

Have a great day everyone.

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kooky

Oh this has made me giggle.............you have just descibed me !!!!!!!!! :bravo:

I can add a few extra symptoms too....but have all been put down to 'just the M.E' :hearts_circle:

 

I too am going to print this off........might even take it to the neuro ....when the appointment finally comes through. :gunray:


Sick & tired of being sick & tired !!!!

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RNatHeart

:you-rock: How We With MS Feel...

 

I have all of the symptoms, except one. Instead of diarrhea I have constipation. I have to think back to myself, ok I don't remember going this week, but It seems like I went once last week. The scary thing is I don't feel any abdominal discomfort. I drink 2-3 cups of warm prune juice when I remember and it works within 2-3 hours, that allows me to go max. 3 times that particular day. . .

 

I can truely relate to your words b/c many have also said to me, start walking around the block.

 

If I'm dragging one leg & limping, how can I safely walk around a block in the midst of my exhaustion.


RNatHeart ;-)

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Jackie01

I am quite upset that most of those things apply to how I feel plus there was another there which I never thought to link and that is the pebbles in the shoes. The more I read, the more it makes me think clearer, but I still hold strong in my head that these can apply to other problems.

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Tug

Fantastic and oh so true

 

Tug

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so_sleepy

This is so me!

 

well, apart from the tummy troubles. well there was that one time in april when I had to take sashets but I put that down to the virus I had just had.

 

Oh and as I am not diagnosed I dont need to get shots. Not bothered by needles really though I have had plenty of blood tests!

 

And no matter how many times I bend my head to my chest I dont notice anything. Maybe I am doing it wrong! But then again I am already buzzing! I do randomly get an electric shock down my leg but nothing brings it on.


Last night a DJ saved my life.........

 

 

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so_sleepy

oh and the bit about stabbing yourself with a pencil reminded me of when hubby had anasthetic in his hand that was ment to go in the vain and they did it wrong and numbed the hand. I stabbed him with all sorts that day, was hilarious. He told me to do it. And I bit him. He didnt mind..................

 

 

 

 

 

...................until the anasthetic wore off.


Last night a DJ saved my life.........

 

 

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Pa Buggles

I was out with some friends a few years ago, when I made one of my usual smart arsed comments to one of them. She stamped on my foot as a result. I calmly looked at her and said "you do know I couldn't feel that, right?"

 

Then I demonstrated that she, in fact, could feel exactly that devilgrin.gif

 

I've always described MS to people as being drunk without the benefits.

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Trish

Got to say that really cheered me up, so many things there that i have said including pabuggles comment of feeling drunk without the advantage of port (my fav drink). i read it to my hubby and he said well its nice to know that people with a severe problem can still laugh at themselves. i have a twisted sense of humor and i think he thought it was just me lol.

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pigeon64

I read through your post and as an outsider to MS, I could quite easily imagine how it would all feel to an MSer :kisslips:

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Drums

ah the symptoms - yes I had 'its all in your head' from GP ( different one to the one who said fatigue 'not something he would expect in MS' )

 

helpful list thank guys x


Wobbily yours

 

Drums xx

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LynnWilliams

Wow that was spot on ;)

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Slugger

That was sad but amusing.

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George  42

What can we say, thats it in a nutshell,

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lewster

funny.. i put it up on the fridge for all my friends and family to read whilst being asked to help with my housework.

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Lynn54

I have seen this before and it was brilliant then and is brilliant now!

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Ladeekay_0x

Great way to explain it next time someone thinks they no how I feel I will show them this. I never no how to explain how I feel but this pretty much sums it up. So glad I have joined here starting to not feel so alone :)

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Balanced
Happymama
On 28/12/2009 at 21:10, RNatHeart said:

:you-rock: How We With MS Feel...

 

I have all of the symptoms, except one. Instead of diarrhea I have constipation. I have to think back to myself, ok I don't remember going this week, but It seems like I went once last week. The scary thing is I don't feel any abdominal discomfort. I drink 2-3 cups of warm prune juice when I remember and it works within 2-3 hours, that allows me to go max. 3 times that particular day. . .

 

I can truely relate to your words b/c many have also said to me, start walking around the block.

 

If I'm dragging one leg & limping, how can I safely walk around a block in the midst of my exhaustion.

I've had this, it's sluggish bowel, and you can get lactulose cheap from your chemist, i take two big swigs a day.  This encourages bacteria in your gut to produce lactic, formic and some other acid to proliferate, so the body throws water at it to cure the problem by thinning the acids out (Citric!) and the water softens the stools. When I had sluggish, I tried to go after a week and tore horribly.  Took a laxative dose once a week and would crap a whole week out in one go.  Then twigged what was going on and moved to Lactulose.  Now I keep a diary to spot it coming sooner. OK so 'went, ok' isn't a great addition to a diary but it might just help me track difficulty.  

 

I once lost my shin.  It's a funny thing to lose a shin.  Your leg has this palpable conversation with the brain and then gives up.  I had to hop.  

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Balanced
Happymama

I can now add dizziness to the list up there.  Turn over in bed, wow, feel like I'm falling out of it backwards. Just in supermarket today, bent to floor, turned head to see the stuff on the bottom shelf  - wow, round and round I go.  

 

Note to self: hand on something before bending.  Turn over in bed slowly.  

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