MS EMPATHY KIT

[Lula_lulabel]

MS Empathy Kit

 

Author: Unknown- But a big thank you!

 

Now family, friends and caregivers can have a better understanding of what it is like to live with MS on a daily basis. The MS Empathy Kit contains everything you need to simulate the effects of living with MS.

 

Each kit comes with the following:

 

1 pair 10 lb wrist weights

 

1 pair 15 lb thigh weights

 

1 pair 20 lb ankle weights

 

20 2 x 2 inch steel wool pads

 

1 pair extra thick gloves

 

1 lb sand

 

1 pair extra thick shirt sleeves

 

1 pair extra thick pant legs

 

1 bag small pebbles

 

1 syringe of saline solution

 

1 2

[smiffy]

Oh Lula, I wish I hadn't read that. I'm feeling a bit low now cos I can identify with all of it to some degree or other, and I know I'm not alone but I think that a lot of the time I deny my feelings and try to get on as I used to ha ha ha, try being the operative word. Reading you Writing reminded me, if I needed reminding, that when I went to the cinema the other night with friends, I was toppling all over the place and couldn't keep up with them as we were walking too and from the car. They waited for me of course, but it might have been easier (psychologically) if they had walked at my pace and then not chatted about the walking days they have planned (which a few years ago I would have been with them) for the next few weeks. If anyone needs any mountain boots, general cross country walking boots, climbing slippers, harness, chalk bag and chalk, 300+ meters of climbing rope in varying types and all the necessary hardware etc etc etc. Then contact me cos I dont want to throw them out but I dont want to keep them, and now i'm crying and feel sorry for myself. Bugger, sod and dam and lots of other swear words that aren't allowed on here.

 

Shirley

[Lula_lulabel]

Awe Baby are you ok? Don't feel down... you're not alone in this. We all have some if not all of the symptoms at some point and we must be strong. I know you're having a poo day :furious: I hate poo days too. I feel so cold

 

I had to go have a pelvic floor exam yesterday... so today is better than that! The physio got me topop in this thing and the put my knickers on and it has cables from it which hook up to a machine that shows you with a graf, how much control you have... I was doing about 25% at the start. So she gave me some exersizes to go to stregnthen it. By the end I could spike to about 60%! cool huh?

 

OOOH! I had a mail from Ron. He's having trouble getting online, and asked me to post it up for him, but I don't know where! lmao!

 

 

I thought it was a good post for us to tell our friends and family just how we really feel. Sometimes it is hard to let them know. I am sorry it brought you down hun. I have sent it to some of my friends and printed it for family and close friends. It's a good reminder for Mark too! (hubby)

 

Anyway sweetie chin up and lots of smiles too.

 

I'm sending you lots of love and loads of hugs.

 

Love Lula x

[crispy]

Hi Lula,

 

Thanks for the Empaty Kit info, the posting is enough on its own to get the message across to the unaware. There is so much in there that rings very true

 

Have a good weekend,

[crispy]

Hi Shirley,

 

Sorry you're not feeling too bright, but try to keep smiling

 

I'm sure that smiling is the answer to everything, even better with a touch of laughter, nothing can beat it :no:

 

Please remember when you're low, that we're always here for you.

 

All the very best,

[smiffy]

Hi Lula, thanks for your kind words and I can feel your hug too or is it the MS one...! Anyway I wrote as I did because I needed to let out that emotion, there's a lot of "stuff" going on in my family at the moment and that's affecting me too. I have the most wonderful close family, I live in a small cul de sac with brilliant neighbours, I have my friends on this forum as well as those who aren't on this forum and a brill MS Nurse. So really I am very, very lucky and well looked after, it's just that what you posted hit a nerve and these feelings are better out than in.

 

Thanks again and bye for now.

 

Shirley

[smiffy]

Hi Chris

 

You are absolutely right about smiling, thought you might like to read this.

 

Smiling is infectious,

You catch it like the flu,

When someone smiled at me today,

I started smiling too!

 

I passed around the corner

And someone saw my grin,

When he smiled I realised,

I'd passed it on to him!

 

I thought about that smile

Then I realised its worth.

A single smile, just like mine,

Could travel round the earth!

 

So, if you feel a smile begin,

Don't leave it undetected.

Let's start an epidemic quick,

And get the world infected!

 

:jump: :jump: :jump: :jump:

 

 

Shirley

[crispy]

You are absolutely right about smiling, thought you might like to read this.

Thanks for that Shirley - I like it a lot :D

 

Here's a few to start the ball rolling, :D :D :D :D :D :D just pass them on when you're finished with them.

[Lula_lulabel]

Hello Shirley and Hi to you too Crispy... (love the plaster on your bum! Have you got one for real? lol :whistling: or shouldn't I ask?!

 

I loved the poem! I'm sending it round the world to all my MS friends to lift their day just as you have lifted mine. (hope you don't mind) I believe in the power of the smile and force of a giggle!

 

Shirley I'm a great listener cos five minutes later I have forgotton what was said! I get told all my friends secrets as they know it will never get passed along. You can bounce your frustration onme anytime hun :gossip2: you gotta luv these smilies, don't you? I get so frustrated with my speech. I sometimes can't even get a sentance together and I go red in the face cos my mouth won't do what I want. I know the word I want to say eg drink... and it comes out bath! But my head still thinks it said drink and when I hear bath come out my mouth I'm shocked at where it came from.... only it was me. I ty again and the same thing happens... it's a nightmare. Sometime I beat around the bush too, using every word around the word I want to say... eg 'Could you get me a drink, please babe?' comes out could you get me a cup, glass, plate, :furious: no no, mug, tap, liquid, :furious: URRRRRG! (breathing exersizes slowly in, out in... deep breath...) ... oh I give up!'

Mark is then back with what I wanted B4 I could even get it out! GRRRR!

 

Frustration is my middle name.com! :whistling:

 

see you later

 

Love Lula xxx

[smiffy]

Hello Lula, I'm feeling much better today, particularly after the lovely messages I've received. Glad you like the poem a lovely friend sent it to me a while ago and I have a peep at it when I need reminding about smiles.

 

I know just what you mean, yesterday I was trying to remember the word - now what is it again! erm, honestly it's gone again oh I cant believe this. I'll stop and have a think. Got it, I went to look on the board in the kitchen, COUNSELLING - yeah howzat . :gunfire: Anyway back to where I started. I couldn't think of the word I've written above and I went all around the houses saying "you know, when you make an appointment to talk to someone" and "you know, you go to see a person who you can talk to privately and know it wont go further 'cos their professionals and it's there job" and on and on. She didn't get it so we called it "someone to talk to when your uptight"!!!!!!

 

I can spend all day trying to recall a word, so now I usually say "forget it, I'll remember when I don't need to" and blow me I usually have the right word popping into my mind after about, well 30 minutes to 30 hours!!!!!!!!!! Problem is I then cant remember who I was talking to and what about - der. :headbang: Do you find also that once you've started using the wrong word you cant stop? I cant recall what word I used once but it went on for days! :crying: Sooo frustrating.

 

Oh I could go on and on but I wont.

 

Bye for now

 

Shirley

[crispy]

Hi Lula,

 

love the plaster on your bum! Have you got one for real?

I hadn't even noticed that - I'm just glad it's not on my crutch (either of them!)

[Lula_lulabel]

Hi Shirley,

 

I Know exactky what you mean! I suffer from it all the time. It drives me nuts, but jusst like you said I usually remember at somepoint. Invariably it's in the middle of the night when I get up to pee! LMAO... that's why I have a pen and paper next to every loo!

 

Love Lula xx

 

 

 

Hi Cripsy... Tres chic, mon amie! you're starting a new craze!

 

Love Lula xxx