You Are Invited

To my pity party.  Mood swing alert!  Has anyone seen my sense of humour?  I seem to have mislaid it this morning. Anyone that has been reading my blogs (thank you) may have noticed that I am trying my best to "soldier on" with a smile (and a laugh) and not be dragged down by this thing but let me tell you that today I am finding this really tough.

Yesterday afternoon I lost my right arm.  Not in a "where did you last have it" sort of way but it just went "dead" on me.  I kept feeling like I needed to stretch it out or shake it.  It felt like someone had filled it with lead and at the same time like ice cold water was being poured up and down inside.  This was a new feeling, another symptom to add to the list.

I decided to shove this horrible sensation to the back of my mind because I had arranged to go see my lovely friend for a coffee and catch-up. I excitedly told her about my blog and how I was determined to keep positive and happy.  She listened thoughtfully (as she always does) and then she asked me if maybe it hadn't really sunk in.  She knows me quite well and can read me like a book most times and she commented that while she thinks it is great that I am keeping my chin up, she wondered if maybe "somewhere" I was still hoping or expecting the doctor to tell me that this was all a big mistake and that I don't really have MS.  Rather than tell her she was wrong or off-base, I sat and thought about it for about two whole seconds and then I started to cry.

There I was all, "I am so cool about this, in fact I am enjoying my blog and this could be a whole new thing in my life" (which is partly true) but then once again it hit me that actually this SUCKS.  I don't want MS.  I want to return it but can't find the receipt.  Where are the ctrl, alt, delete buttons for this thing?

Today I have woken up (after another night of tossing, turning and hardly any sleep) with my arm still heavy like lead.  I am seeing my Neurologist this morning for the first time since my diagnosis and I am going armed with a list of questions and new symptoms with the hope that he will start me on my treatment.

I don't know the protocol of how this all works, I guess today is the day that I will find out.


So I guess this is a bit of a reality check in as much as I won't always be able to smile on this roller coaster and I will have the occasional pity party (cue music; "it's my party and I'll cry if I want to").

I SO don't want to be a "Donny Downer" as I have had so many people tell me how they admire my positive attitude but I guess I am just a mere mortal after all (boy, is that disappointing to realise) and today I am feeling a bit sorry for myself.

So enough about me, how are YOU?

Laughter Is The Best Medicine

When I started this blog just over a week ago it was largely for selfish reasons. I wanted to write out my thoughts, feelings and experiences as I faced this challenge head on.  I have been overwhelmed by the fact that it has been read by thousands of people already (seriously, how crazy is that?) and I have had such an outpouring of support and love.  I have had other MSers tell me how it has helped them to read about someone that feels similar to them and I have been very humbled and honoured by the messages.

I have also had a couple of people ask if I am concerned that I might offend other MSers with my sense of humour. I really hadn't considered this as a possibility as I simply write from the heart and from my own experiences. I do use humour to express myself but I am in no way trivialising this awful illness.

Ask any of my friends (going right back to primary school) and they will tell you that I have always been a bit of a clown.  I will be the first person up on the karaoke (even though I am tone deaf - sorry Pixie Lott for killing your songs!) and I will quite often be the girl that makes a complete idiot of herself at a party.

It's just who I am and who I have always been and let me be clear, I have MS but it doesn't have ME.  I won't let it change who I am as a person.

It did get me thinking though that when we are faced with something negative in our lives (and surely a chronic, life-long, possibly life-changing, brain-eating disease with no cure qualifies?) then in my opinion this is the EXACT time that we need to dig deep and try to use our sense of humour. What is the alternative?  Crawl up into a ball in the corner of a room, wailing "it's not fair"?  No thanks.

I wont lie, I have had my moments and I am sure I will have many, MANY more.  I have sat and cried like a baby but it is usually out of frustration that I am feeling weak or I have a new symptom that makes me wonder if the rouge soldiers in my brain have launched a new attack.  Then it is time to dry the tears, take a deep breath and carry on with a smile.

When I came up with my T-Shirt idea of "It's Not Merlot, it's MS", my partner Phil said he would get a T-Shirt to wear at the same time that reads; "I'm with the Drunk".  I couldn't stop laughing at the visual I got of us both wearing those shirts.  I supposed there might be some people that might not "get" our sense of humour or our ability to make jokes at a "time like this" but actually it is the jokes and laughter that have kept me from sinking into a very dark place.

I read an article that said statistics show that 75% of MSers suffer from depression.  That is awful but I can understand why, it can be a very lonely disease.  They say that you don't "get" MS until you GET MS and that is why I am trying my best, through sharing my own experiences to raise awareness.


So, I leave you with this little poem that I threw together (hope you enjoy):

Tingle tingle on my tongue,
Please go away, it isnt fun.
Twitchy twitchy little toes,
When will it stop?  nobody knows.

Feeling numb all in my feet,
Makes it hard to feel the street.
I stumble left, I wobble right,
I must look drunk, a funny sight.

MSers listen, one and all,
There is an upside after all.
You forget a birthday or a date,
It's your disease, they cannot hate.

So keep your chin up, soldier on,
Or else this illness will have won.
Keep on smiling, you know its right,
Don't let it beat you, fight the fight!


One of my friends recently said I could be the "Carrie Bradshaw of MS" and what a great compliment although to be fair, if I bought myself a pair of Manolo Blahnik or Jimmy Choos I would probably just fall on my bum!

So enough about me, how are YOU?