MY MS SYMPTOMS

Have I ever even told you what my MS symptoms are?

I was diagnosed with MS back in January 2002 after I starting tripping on the treadmill at gym.  I had symptoms well before that and spent 6 months in 2001 with a sports physio who thought the problem was my knocked knees.  Then one day I went straight from the gym to the physio with my weak leg and said "This!!  What is THIS?"  He knew straight away and sent me for a MRI and lumber puncture which confirmed MS.

I was incredibly fortunate in that my MS progressed slowly (although was still enough to totally derail my rather excellent lifestyle).  Looking back at 'now versus then' I thought I was so bad 'back then' when I'd give anything to be as 'bad' as I was when diagnosed!  (excuse all the inverted comma's)!

I have..no, no I HAD Primary Progressive MS (PPMS) which is less common that Relapsing Remitting MS (RRMS).  When I had MS (pre HSCT :) ) I didn't have MS attacks (where you have an exacerbation but then slowly recover) but I always had trouble with my gait.  This is the least common MS. 

I have lived with a weak left leg since before 2002 and its major problem is 'drop foot'.  This is when your foot doesn't lift and flex so I tend to 'drag and slap' my foot along when I walk. 

My gait has slowly gotten worse and the distance I can walk has greatly reduced over time...but I must remain thankful that not too much else went wrong.

My bladder / bowel developed problems somewhere along the way and I have urgency issues which is quite common in MS.

About 18 months ago, my right leg decided to start playing up.  I was on the Gold Coast for a friends wedding and a group of us were at a Gold Coast Suns Game.  My girlfriend had to help me to our seats when I realised..."Hang on...My right leg is being the b*tch!...What The??"  It is totally different to my left leg!  It doesn't have drop foot but is weak, has a deep 'bone ache', and tends to want to 'fold in' at the knee (so the whole knocked knees thing coming back).  

Over the years, I've noticed that my left arm is not as strong as my right (which is weird because I'm left-handed) and I don't have the hand coordination I used to - which I can only notice when tying things or 'twinkling' my fingers so has not really been a consideration.  I still type around 85wpm like a boss! :)

So - all in all - I don't need much improvement compared to some....but I just so dearly want these legs working again.  I mean - how warped is it that I have bladder issues with legs that can't rush to the loo .....

I shouldn't be typing this today as I'm not in the right mindset but honestly - I just pray and pray (and pray and pray) for improvement.  I know I have stopped the beast that is MS and I am so incredibly grateful and thankful that I had the opportunity to have HSCT....now I just want more.  I find myself jealous of those with RRMS that are seeing improvements after only a month home.  I'm SUPER CRAZY happy for them....I just want it too.

I've read about other patients with PPMS and their recovery and any improvements have taken longer but there have been improvements.  One lady blows my mind with what she can do now (hiking and the like).  So I just need to keep looking forward and staying POSITIVE.

At least I know now that 'this is it'.  We ran into a friend yesterday whose wife had troubles a few years back (not MS related) and he told us that he used to say to her: "Every day that is 'just the same' as yesterday is a GOOD day!  You are no worse."   I need to get my head back into that mindset.

Thanks for listening! Mary OUT.

DAY +138 - CRAP DAY

You know, I think I keep a fairly upbeat, positive nature most of the time (although my husband may tell you different)...but today....today is a sh*t day.

It's a glorious Sunday here today.  25 degrees, sunny, no wind...just beautiful.
I should be happy right?  I mean...I'm blessed!  I have a supportive family, awesome friends, I love my job, I have a great house...

But here's my day:
My daughter is at a birthday party but I couldn't even go drop her off as it's in a park and they were set up about ....oh...50 metres from where we parked and today, Today - I just can't make that distance....

So my hubby drops her off and we go to pick up our Click and Collect groceries and shop or our fruit and veg (as you do when you're kid free).  We thought we'd shout ourselves a coffee/tea before we went in but today I could barely walk from the car park to the coffee shop.  However, we made it (thankfully my hubby is strong and holds my hand) and sat down to a coffee/tea/bite to eat.  Relaxing?  No.  Nature (as she invariably does) decided to call and I had to walk (again ONLY) about 50 metres in a shopping mall (so nice, smooth tiles) to the bathrooms and I barely made it....like just barely...I was sweating!  SOOOOOOOO frustrating.

By the time I got back to hubby, my legs were shaking uncontrollably and I asked to go back to the car to wait while he did the grocery run around.  I have never done this before. 

I am so frustrated.  SO frustrated.  I can't even type coherently....

I KNOW HSCT stopped my MS.  I KNOW I may never see improvement.  I KNOW all this but I want improvement SOOOOO bad.  I KNOW this attitude at the moment doesn't help (and it is rare) but I'm just SOOOO p*ssed.  WHY didn't I do HSCT sooner?  WHY am I having to live like this?  The ol' "WHY ME" is rearing its ugly head.  I'd be SUCH an awesome, active, busy, fun mum and wife without these 'MS leftovers'.  Ugh.

Sorry for the vent.  I pray daily for improvement now.  I KNOW I'm selfish - all I wanted from HSCT was to stop MS and it's done that.  I know it has....now I just want more.

Ugh.  I hate when I'm like this.  I'm teary, frustrated, miserable.  My poor Hubby and Daughter.
And on such a beautiful day.  We should be canoeing, SUPing, riding our bikes....instead, I'm sitting in front of the computer in tears; Piper (thankfully) is blissfully unaware at her friend's party; and poor Andy has no idea what to do so has retreated to Bunnings (no doubt bored with our marriage)....

Ugh.  I am NOT this person.  In the words of the GREAT Taylor Swift....I need to 'Shake it Off'....