Bye, Bye Bye!

 

whatsapp-image-2018-05-26-at-1-57-46-pm

 

Dear Mr Pain,

In the words of Nsync, “I know that I can’t take no more
It ain’t no lie
I want to see you out that door
Baby bye bye bye

Don’t want to make it tough
I just want to tell you that I’ve had enough
It might sound crazy but it ain’t no lie
Baby bye bye bye”

I’ve written to you once before but, this is it, Mr Pain, I have no choice but to put pen to paper yet again and tell you exactly what  I think of you. I’d tell you in person but as I never know when you’re going to turn up, this is my only option.  When you first came into my life, I reluctantly had to accept that you and MS came as a couple, a twisted, warped tag team of misery. I have tried to put up with your spiteful digs, barbed jabs and your unrelenting grievous bodily harm but, enough is enough, it has to STOP, I literally can’t take anymore. Look, I’ve reached the end of my tether and we seriously need to part company. It’s blatantly obvious that we ‘re just not right for each other. I can’t have you in my life anymore, you’re misery personified!

What I really want to say is, you’re an insensitive selfish tosser and I deserve to find something that can offer me comfort, soothing and an escape from all things that involve you – Mr Pain. I didn’t want you to hear it from anyone else, so I have to tell you, I’ve found something that’s helping me through this difficult time… It’s called love, kindness and my two new best friends –  Mr Morphine and Miss Gin!

I have to get this off my chest… You’re vicious, heartless, fiendishly brutal and quite frankly, a total shit. I’m done, we’re through and I’m giving you the big heave-ho!. I would say goodbye forever but I know, you’ll find a way to creep back into my life. I’m giving you fair warning… you can knock me down but I’ll keep getting up again, not as fast as I used to but I will… I’m a kick-ass MS warrior!

I know you think you belong here, but I don’t remember inviting you into my life, so go on – push off and take your barbed hook with you. I would say it’s been nice knowing you but that would be a whopper of a lie – so, Baby – bye bye bye!

Signed,

Me.

images

Advertisements

I’m still standing… Yeah yeah yeah!

 

drumrollDrrrrrrrrrrrrrum roll, please… I survived another year of living with a chronic illness!

I’m going to be loud and proud because living with a life-changing chronic illness is bloody hard (and that’s just on a good day)!

There have been many low points and daily challenges I’ve had to deal with over the last year, but despite it all, I try not to feel too sorry for myself (sometimes the pity party for one comes a knocking and I fall into its arms without a fight) I still love so much about my life and I’m grateful for everything I have. However, chronic illness impacts heavily on every aspect of my life and the truth is that this makes life REALLY tough.

In some ways, it’s the smaller things which are hardest; like trying to make plans around an unpredictable and all-consuming illness. It’s also feeling isolated, or even, at times, feeling like my illness is defining who I am. But, the positive voice in my head grabs its negative rival firmly by the throat and says “there’s no point crying about it, you’ll only get salt in your Martini”!

There are many good things in my life and I try to focus on them. I love spending time with my gorgeous family, who mean the world to me and are my everything. Sometimes I feel like I’ve lost some of my Yummy Mummy magic as I can’t do the things with them I used to, but then I remember that perfect mothers only exist in those American sitcoms, we all love! I’m an MS mum – practically perfect in every way… just not every day or week, or month or year- meh!

My greatest achievement of the year was spending an amazing week in Barbados to celebrate the wedding of our daughter Katy & Nick Taylor (HM – in case you’ve forgotten, he’s known as the honorary member or HM in my blogs). Boy oh boy I paid the price for giving it my all, fatigue like I’ve never had, co-ordination has gone out the window, and just to add to it my bladder was joining in the fun… but So worth it! (I’ll tell you about our Barbados jaunt later) I’m sitting here with a huge  ” Grinch who stole Christmas” grin as I remember all those divinely delicious Pina Coladas – who needs meds when you have a cool glass of yellow heaven in hand – yummy!

I have learnt to accept that I am chronically ill and NOT going to get better. There have been so many tears along the way (god I’m such a blabberpuss) and at times it felt like I was losing part of my identity, had my purpose in life taken from me and there was nothing I could do about it.

I certainly don’t take life for granted and you can bet that, if I’m having a good day, I’m going to make the most of it, but even if I’m having a bad day, I try really hard to make the best of a bad situation. Despite all the lows, I live by the mantra – FUMS!

Those of us living with chronic illnesses and disabilities don’t celebrate everything we manage to achieve enough. We really should you know, I think we owe it to ourselves to and we need to give the world around us a gentle reminder of what we’re up against too!

 

Elton John hit the MS nail on the head… I’m still standing… yeah yeah yeah!

It’s a game but not as we know it!

1A96bXOQMSUHOpdEA1m9w

Contrary to common belief, you can teach an old dog new tricks. Learning to live with MS is like any new game/skill, we need to practice, practice, practice. “Kerplunk” – when it knocks you out, you get back up again, sometimes it’s two steps up but then you slip three steps back (damn you “snakes & ladders”) but the only way you’re going to get the hang of living with this Pacman style myelin munching marauder, is beat MS at its own game!

It’s hard to grasp the rules of the game at times but, there is hope. There are enough self-help books out there to fill a stall at a WI bring and buy sale (been there, done that, bought the t-shirt – er, sorry book) but most won’t give you the lowdown on how to compete with this fiendish fickle foe. In reality, we just need a cheats-guide, a step-by-step manual on how to play the MS game! MS is a Wiley opponent, it’s cunning, devious and spends its life plotting how to sabotage your free throws and sneaks up on you to knock you off the board of life.

Some of the players you will have met before, but with a bit of help and support, you’ll learn how to play them at their own game.

  • Miss Myelin in the kitchen with the nerve agent
  • Professor Lesions in the Hall with the Spinal Tap
  • Reverend. Dizzy-Vertigo on the roof terrace with a kaleidoscope
  • Mr L’hermittes in the study with the sonic shockwave candlestick
  • Colonel Tremor in the billiard room with the machine gun.
  • Ms Hug in the library with the spikey clamp.

MS warrior winner stats are lower than a Love Island contestants bikini line at the moment and it’s not just women who are getting P.M.T – persistent ms tension! This damn game of life and its rules suck but keep playing – sometimes you win, more often than not you lose, but you’ll get the hang of it.  xxx

“We cannot change the cards we are dealt, just how we play the game”. Randy Pausch

For crying out loud!

 

happy-cry

Big girls don’t cry… Oh yes they bloody do!

Shhh! Don’t tell everyone, but much to my annoyance, I find that these days I cry at the drop of a hat. I was never a big crier, and this change baffles me. Sometimes, the tears flow out of sheer exasperation, as I sit in the bath at 4am in a bid to soothe my aching body & sometimes, it might just be that I want to do something, but simply can’t, cue the waterworks – If tears were currency, Id be a millionaire Rodney!!

I’ve spent years bleating on to my children to buck their ideas up and not to cry over spilt milk, it’s not the end of the world and now thanks to MS… I can’t, I do and it is!

Sometimes, I cry at a mere thought of pain, other times, I cry because everything hits me like a tonne of bricks, I hit my MS wall if you like! Don’t fight the urge to blub – let it out. My Granny always said “better out than in” and it’s so true.  It’s at times like these, neither synthetic or holistic medicines will do, I find a little laughter or a fit of the giggles, is the only potion I need!.

 

pity-party

 

Me: Excuse me waiter, I’d like to cancel my side order of sour self pity for one and change it for a big juicy, lip smacking bowl of tee- hee please!

MS: Meh – we’re out!!!

Let’s face it, us MS warriors don’t laugh enough and before you all yell “silly bitch” – I’m only to aware that we CRY for a damn good reason and pity parties are a regular occurrence. BUT Sometimes, just a simple titter will escape from my quivering lips over something silly I’m watching on TV, but sometimes when I need it most, real laughter refuses to participate. It sits on the sidelines with arms firmly crossed and refuses to join in, rather like a sulking teenager! –  I try and I try but I just can’t turn that bloody frown upside down!

So, the only option is to try and tickle my own funny bone in the things around me. Most of the time, this tactic works. MFH bares the brunt of my warped sense of humour –

Yesterday, I just had to laugh when he tripped over the Westie ball of fluff and dropped his much anticipated, oh so sticky bun on said Westie and said Westie was now covered in copious amounts of glistening raspberry jam – I say laugh, I nearly wet myself and salty tears were flowing down my rapidly flushing cheeks, it was the funniest thing Id seen in ages ( except for the day when I watched my MFH step backwards into a steaming cowpat) … I sounded like a hyena being strangled or a Doberman with a rubber band around the willy, all high pitched a shrill – but god it felt f***ing wonderful – now, now – don’t judge!

I just couldn’t stop and this time, I was crying for a good reason and bless him, MFH didn’t mind, he’s like my emotional punch bag – on any given day, the general flow in the ring  (er, sorry in our house) is..

Wham – left hook…tears

Bam – right hook… giggles

wham bam – sucker punch…  gibbering wreck, laughter, tears, sniggers, more tears –

Ding ding – end of round one – and he’s there, mopping my brow, wiping my tears and showering me with hugs and giving words of encouragement –

Ding ding – round 2 – and repeat!

Just incase I forgot to mention, I think MFH is bloody brilliant – and the award for lifetime achievement (superior ability, special effort, a great or heroic deed) goes to MFH… gold star for that man please!

He’s my PUWMS hero (putting up with my shit) in so many ways. As my official carer, I’ve explained many times that he’s doing things wrong – poor love can’t win, some things, I think we can all agree, don’t come naturally to a man, BUT the one constant in our house is BIG GIRLS DO CRY – but laughter must follow, whenever possible. And we do laugh, mostly in the face of adversity, but we do!

I cry a lot thanks to buggering MS, but laughter definitely helps! So if you’re feeling blue, its ok to have a good weep but try and find your funny, it’s worth the search!

My recipe for this MS life..

1 teaspoon of salty tears

2 teaspoons of tickle my fancy

2 cups of hugs from a hero

2 cups of good old fashioned loving

Mix together and serve daily…

picture-3