The thief

Primary progressive MS
1

Hi,

Posted this on another site.

The thief.
Yeah I look good (well for a 46 year old guy, I believe I do) and yeah I have MS (thats Multiple Sclerosis), with a PP (Primary Progressive) in front of that acronym making it PPMS. That means NO remissions, just a steady decline, and nobody can me how tell how steep or quick.

Looking at me you couldn’t tell, but see me walk or listen to me would have you believe that I was drunk. Not a hard thought as being Scottish people think that anyway.

It’s a thief.

I used to walk long distances, go to the gym and drive extensively.
Now walking more than ½ a mile is just a joke. My hand/eye co-ordination is gone when it was great and I could keep a handyman busy for ages.

It’s a thief.

I can accept that (it’s difficult) but why should my wife and daughter? They are great and now to see my life change whilst they are great must be hard. Seeing my decline has me questioning “Is it fair on them?”. The answer is a resounding NO.

It’s a thief.

It’s not fair on them at all, they deserve the man I used to be not the man I am now, staggering around, slurring and spilling things (seriously, keep me away from candles and cups). Seriously.

It’s a thief.

The looks I get daily, “look at the Drunkard”, are now ignored, along with the bruises from the door frames I bounce off. I know and so do many others that yes I do imbibe now and again, but nowhere near what I used to.

MS has stolen ME and that’s not something that has been easy to steal. That is why it’s a thief.

Many think that MS is a condition or disease, me, I know it is a thief. MS has stolen me from me.
I am still the same (although older) guy I used to be just slower, less steady and weaker than I used to be, but still me.

Don’t ask for a cup of coffee, unless you really want ½ a cup, because the other half has been stolen!

3 Likes
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Hi Craig,

Welcome to the forum and thank-you for sharing your post/thoughts with us.

I know a lot of us will relate to what you’re saying and how you’re feeling as yes, you’re quite right MS is a thief and is stealing so many of us but we will fight this intruder the best that we can and support each other on this journey of uncertainty as no-one knows how, when or where the thief will strike next.

Hopefully at some point justice will be successful, if not for us but for those that might follow.

As you say, you’re still you just a little bit slower, less steady and weaker than before but you’re still you and that’s exactly what and how your wife and daughter will see you, still you, a husband and a father and they will love and care for you just the same as before… ok, maybe just a bit more :wink:

Keep going the best you can and take every day as it comes.

Take Care.

Twinkle Toes x

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Hi Craig

Yes it is a thief and just when you think you’re winning it creeps up and takes something else, and there seems no answer as to how to stop it, but like you, I am still ME.

Your family will love you whatever is thrown your way, same as mine, that is one thing the thief can’t break, the bond between loved ones.

Take care and welcome to the forum.

Pam x

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Great piece Craig. What a cold heartless truth it is.

“Has he been drinking?” People would never even ask me, they’d ask a friend. Now I’m in a chair but there’s no-one else to ask because I do it all myself. Most people return my cheery remarks but some look down at their feet.

I’ve had so much taken from me; including a wife and daughter. “It’s a big commitment,” she moans “to bring her every week.” Talk about clueless.

But I’m still me and you are you.

MS is stupid but we are clever.

Fight it Craig.

Steve

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Steve’s right Craig we are still us. That’s so sad Steve, I know how much little Rose means to you , and I’m sure she is delighted to see you , children don’t judge , to her you are the best Daddy in the world ! Craig one of the biggest things I had stolen was my cognitive abilities , I can’t multitask and have had my driving licence revoked. I missed driving so much passing my test when I was 30 after 5 attempts was one of my biggest achievements, it was my independence and freedom. I’m still me though despite it all and having Frazer my assistance dog and best friend has given me so much back. I always refer to my wheelchair as my car , it only does 3 miles an hour but I manage to get all over the place with Frazer , we have some fantastic adventures, it’s a different life but still good. Michelle and Frazer xx

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Craig

You are so right. MS is a bloody thief. I am still ME, but not the same ME that I was. I can’t walk, write, think, cook, drive, work, defacate or empty my bladder in the way I could. The thief has stolen all that from me.

I’m relatively lucky, the thief has not stolen my husband who is also my best friend. It’s not stolen my sense of humour, my ability to write with a tablet, my good friends or my ME. I am still the person I was, irretrievably altered, but still ME.

But damn that thief.

Sue

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Welcome Craig. Love the piece.

It is indeed a thief.

We are all Warriors in a fight we didn’t choose and don’t want.

Warriors nonetheless.

Steve - You will always be Rose’s Daddy.

Anne

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Hi Anne,

Not seen you on for a while, hope you’re doing as well as can be expected?

Twinkle Toes x

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Hi TT Sorry haven’t been on here. I do read and observe. So nice you remember me! Not doing the best but keep trucking like we all do. How are you.? Anne

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Hi Anne,

Like you I read and observe sometimes as I’m not always able to come on, and I suppose it will be much the same for many others too.

I try to remember people, and I recognise some names (I think) but it’s nice to just say ‘Hi’ to ones that I haven’t seen on for a while.

I am sorry to hear though that you’re not the best at the moment but it’s good that you’re keeping on ‘trucking’ :slight_smile:

I’m ok, thank-you Anne, just a bit up and down with the temperature - hate really hot, hate really cold, inbetween is easier to cope with so roll on Autumn :slight_smile:

Take Care

Twinkle Toes x