My Life

Primary progressive MS
1

I was diagnosed in 2008

With this thing called PPMS

I’d never cope Jim without you

Daughter Lucy and son-in Law Simon too

This monster is an awful thing

Pain and suffering it does bring

Pills do help a little bit

It sure is a miss or hit

Whether they work or not

But that is all I have got

It’s hard to know what the day will bring

I will either cry or maybe sing

The electric shocks in my head

Sometimes send me of to bed

My bladder doesn’t’t know when to pee

Near a toilet I must be

Legs don’t work and are very heavy

Medication means no bevy

Drop foot and spongy feet I feel

Feel like walking on eggshells oh so real

Fatigue has a big part to play

It differs from day to day

I need my stick to get around

Without it I would fall on the ground

I need my Rollator and wheelchair too

Without them both I would be so blue

And as Jim and Lucy they push me all about

Only for them I would not go out

I have the wobbles and balance problems too

This MS monster I am sick of you

Please leave me be for at least a day

So I can just live normally

Thank you

xxx

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2

wow - whatever your issues and problems, you have a massive skill and an enormous capability to connect.

all the best Mick

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Thank you Mick xx

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4

Great poem Cindy…and all so true. Yes if we could have just one day of normality!

Thank you,

Pat xx

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Well written, you have summed Ppms brilliantly.We laugh and cry all in the same day usually due to pain or frustration,and some things are so bad you just have to laugh to get you through.Thank goodness for my grandchildren who make me laugh…keep your chin up fellow ppms sufferers.jo x

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Great poem and so descriptive of many of the common symptoms so many of us live with Cindy. It’s funny reading it today after having one of my "this is it, it’s here for life and will never go away) panic attacks this morning while out with the pooch. Am I the only one with those little outbursts? And I’ve had this for nearly 3 years now!!!

Thanks for it, it made me smile when I needed one this evening. Take care.

Cath x

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7

Cindy well written that sums stuff up pretty much

XXX Don

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Thank you Cath xxx

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9

Thank you Don xx

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Thank you Jo xxx

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11

Thank you Pat xx

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12

sums it up in one, well done !!

J x

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13

No Cath you’re not the only one. I have been dx 8 years and I still have those moments occasionally…although I do have them less often now.

I sometimes look at people walking down the street and seems so strange that I used to do that. I could just put on my coat and go out and walk down the street! I will never do that again. Yes, it does cause a feeling of panic…but it passes.

Pat xx

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14

Hi Cindy, I still have a glass of wine! When all else fails there is always chocolate, take care. M

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15

That sums it up in a nutshell Cindy, thanks.

Pam x

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16

Yes Pat, you have hit the nail, I agree with Jackie, I see out the window my neighbours walking sprightly to the shop, and I am envious, cos they are late 80’s and 90, I am pleased for them, but wish I could walk with them.

MS b****y sucks.

Pam x

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17

Well put, Cindy, and Jackie too.

As Joni Mitchell said, “You don’t know what you’ve got 'til it’s gone.”

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