Shake, rattle & roll… and repeat!

 

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Sadly, I’m not referring to the great Bill Haley & the Comets ditty we all know and love, but instead to the strange things, my body does on any given day.  Shake, rattle and roll… and repeat – meh!

Some days I’m only afflicted by one of the above ( I can count on one hand how often that happens!) but when my fiendish foe MS, decides to unleash the lot, I know  I’ve got to batten down the hatches as it’s going to be a bumpy ride. I don’t mean a gentle teacup ride at the fair, I mean a white-knuckle, gut-churning rollercoaster from hell type of MS ride! I hate rollercoasters with a vengeance and you won’t get me on them for love nor money, so imagine what it’s like to be an unwilling participant on one – the only saving grace is that you know all you have to do is close your eyes, grit your teeth and pray for a swift end and it will end, you just don’t know how long you have to ride the MS, mind-bending, body stealing monster for!

Shake: Not an oh-so-naughty but oh-so-yummy cup full of creamy goop laced with a ka-zillion e-numbers and things we’d rather not think about (from that well known high street food chain) but the tremors and shaking of my various body parts. MS tremors are rhythmic, back-and-forth muscle movements that you can’t control. It’s like I’m a puppet and MS is the evil puppet master pulling my strings, twisting & contorting the nerve pathways responsible for voluntary muscle movement and balance. I don’t take anything for it (a cruel twist of fate is my body can’t tolerate the drugs designed to help) but the plus side is I can use my shaking hand to scratch an annoying itch or give a bloody good back massage, haha! Then, there’s the weird internal vibrations –  tremors that happen inside your body. You can’t see them, but you can feel them. They give you a quivering feeling inside your arms, legs, chest or abdomen like a rippling wave sensation.  Do you remember that freaky feeling when you were pissed as a fart ( ah – those were the days) and closed your eyes? – it was a weird internal shudder that ran from top to toe. Now. times that by 10 but you’re stone cold sober and you’re not even close!

Rattle: These are the rattling sound effects in my head (hyperacusis). It’s the hypersensitivity to noise and sounds that’s a common issue among us MSers, it’s like been acoustically linked to the loudspeakers that only you can hear. Everyone’s experience with hyperacusis is unique, but it’s a heightened sensitivity to every day sounds like honking horns and traffic – people chattering in restaurants effects me the most. Remember that scene in the Mel Gibson movie “What Women Want” where he’s in a department store and could hear every woman’s thoughts all at the same time with added volume – well that’s what goes on in my head in crowded places. The most irritating and disturbing sounds are usually high-pitched noises like a smoke alarm or the noise that emanates from MFH at night. Sometimes I don’t leave the house as I literally can’t face the real, yet ever-so noisy outside world.

Roll: Trying to stay vertical with MS is a challenge I set myself every day – MS has turned me into a Weeble, wobbling and stumbling my way through the day – how did that irritating advert lyric go? “Weebles wobble but they don’t fall down” – oh yes they bloody do, frequently!!! I know what’s about to happen – as I try not to step on the dogs tail, it’s already in motion – I’m going down – like a WWB wrestler… It all happens in slow motion yet lasts about three seconds, and through lots of forced practice, how I handle those three seconds will make a big difference in how soon I pick myself up or if I have to lay there on my back like a stranded turtle, all legs and shell, until I’m rescued. Imagine, if you will, Big Daddy throwing Giant Haystacks over his shoulder and the way they hit the floor – the show-stopping smack-down (those of a certain age will know who I’m talking about!) – you need to try to spread the impact and land on a body part that’s soft, like your side or in my case, a bottom the size of two bowling balls…  (I now have a very high regard for my wobbly bits!) Tripping over with MS is not pretty but, stuntmen and paratroopers (who know a good deal about falling) offer these words of wisdom:

Don’t fight the fall – Don’t stick your arms out – stay loose and for god’s sake land on your side!

Having a sense of humour is crucial when living with MS and this Billy Connolly joke always tickles my fancy… Chic Murray once told me he fell in the street, and a woman said to him, “Did you fall?” He said, “No, I’m tryin’ to break a bar of chocolate in my back pocket.” I would highly recommend using this brilliant one-liner next time you trip in M&S if only to see the reaction you get when asked the same question – priceless!!

 

 

 

 

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Bye, Bye Bye!

 

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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.

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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!