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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For crying out loud!

 

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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!.

 

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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…

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Give us a clue – meh!

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In the good old days, I used to be an absolute whizz at word games, after all I could talk for Britain – verbally incontinent, if you will! ( now i’m just incontinent – boo hoo!)

Fast forward to 2017 and MS has turned my brain to mush and I’m fully aware, it’s only going to get worse. At any given moment I can burst into complete jibberish when trying to cobble together a constructive sentence – no matter how hard I try, total bollocks is all that I can muster. My son always berates me for using 20 words when 5 will do, but now it’s a bloody marathon just to get out one whole sentence!

My mouth says ” can you get me – urm – hang on a minute, it’s coming, let me think about it  – a do-dah from the thingeamagig” but my brain is screaming something completely different, there you are… proof, it’s official – I am now a verbal halfwit!

I honestly can’t seem to remember even simple worlds, I find myself stopping mid sentence to trawl through 50 odd years of spoken words before blurting the word out with utter glee “hammer, yes HAMMER” – ffs, in my head it sounded like avocado – meh!

In a bid to stay one step ahead of my MS word fiend, I have resorted to describing the thing I’m trying to say ” it’s green, nobbly and we grew them in Spain”  I’ve even started to add in hand gestures to get me over the finish line of a sentence. Im so good at it now, I bet Lionel Blair & Una Stubbs would be fighting to get me onto their teams on Give us a clue (OMG,that shows my age!)… content – 5, fucking effort -11.5!

MS – You might have turned me in a to a jibbering monkey, but I get there in the end – tah dah!!

PS it also helps that MFH seems to be tuned into radio MS and can guess what Im trying to say!!

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Let the old me shine through!

 

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Just because you have a chronic illness doesn’t mean that life stops. It may feel like your’e wading through a puddle of treacle without any wellies but, it doesn’t stop, honestly!

Sometimes, trying to look good can be challenging when you have multiple sclerosis, especially when you are feeling crappy, but I’m up for the challenge!

It’s been a long standing joke between MFH and our children, that I always wore makeup & nail varnish every day – yes EVERY DAY, I wouldn’t even leave home without my lippy on! Why then, should now I have MS be any different?

Having a chronic illness does not mean I have to look like Waynetta Slob!

I think some people often wonder why on earth I would want to wear makeup, “do” my hair and make an effort, if I’m having a crappy MS day and struggling with it.  I know what they’re thinking “if you’re really feeling shitty, then you shouldn’t you  look like it too” – but I beg to differ!

After a long time of being unwell and more often than not stuck in bed (it’s been almost 18 months since the MS shit hit the preferable fan) you begin to feel like you’re losing your identity and the last threads of the person you used to be.

Now that most of the things that made me feel good as a person have deserted me – there’s only one thing that consistently makes me feel brighter (not better – I always have to point out there is actually a huge difference between the two “B” words!) …Slapping on my makeup, my war paint if you like. If I’m going to fight this bloody illness, I’m damn sure I’m going to look good doing it! (I’ll give it a bloody good go anyway) MS has after all, taken away everything else and it’s not taking my self-esteem, I’m giving a well deserved two fingered salute to MS if you like!

It may seem silly, unnecessary and possibly to some, inappropriate but I don’t give two hoots and it’s something I can still do without help –ooh get me, Miss Independent! God knows what I’d look like if I had to ask MFH to do my makeup – he’d have a good go but the words “dogs dinner” spring to mind!

When I pass a mirror I don’t want to be reminded of how awful I look and feel. I want to say “feeling shitty but looking pretty” Sarah 1 – MS 0 – Woop Woop!

On my worst days, when I feel beyond shitty and MS has backed me into the proverbial corner, it’s looking like the old me that ultimately makes me feel, and dare I say, look better!  The “real” me, not the me with a chronic illness, baring down on me relentlessly.

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Some days it’s not easy put my makeup on, perhaps my face is uber sensitive or my hands are shaky but the end result is worth it, if only in my eyes. I look in the mirror and I can see a glimpse of the person I used to be.

I’d like to think that people don’t just see me as “that person who’s chronically ill,” Dig beneath the knackered, pain riddled façade and its still me – you hoo!

I’m not trying to hide my distress or disability with makeup, I’m just trying to let the old “ME” shine through, even if just for a fleeting moment.

Now, if you don’t mind I’m going to have a little rant!

The one thing seriously pisses me off, is when MS sufferers are dismissed as being OK and can’t possibly be as ill as they make out, just because they look fine to others –  you can be chronically ill and wear make up – get over it!

If ever you’ve been told “Well, you look OK, you can’t feel that bad.”  Gracefully remind these selfish tossers that, If you see us looking even a little like our old selves, don’t jump to conclusions about how we are feeling, say something positive and life affirming and remember— “I’M STILL FUCKING ILL AND GOING THROUGH HELL”! We all wear some sort of battle armour to fight the rotten bugger, MS and some of us MS warriors, wear our war paint to face the enemy head on!

Don’t get me wrong, some days (more often than not) my tormentor – MS, wins the battle of wills and I can’t summon up the energy to “do” my make up and hair – so what, who cares – I just avoid mirrors and people!!

Needless to say, we are all beautiful whether you wear makeup or not!

 

 

 

 

 

MS – it’s a funny old world!

 

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Trying to maintain a sense of humour is a big part to surviving any illness. MS is no different. While coping with the disease is frustrating and overwhelming, you can find a dash humour in knowing that others are struggling and laughing along with you.

Laughter DOES NOT make my MS disappear, BUT laughter reminds me that I still find things funny, especially if it’s lavatorial humour. A good giggle doesn’t “fix” anything, but It gives us a little break from it.

Point in fact being – just chatting away to my eldest daughter on facetime, when I asked what the noise in the background was – it sounded like a racehorse taking a leak – turned out it was the HM in the loo and he hadn’t shit, sorry, shut the door. Yep, made me laugh, so that’s one chuckle point to me!

Another conversation that made me chuckle – well belly laugh actually, was when my youngest daughter called me in a bit of a flap to ask “how do you unblock a toilet”?  A perfectly normal question I hear you say… It turns out that her flat mate (won’t name names, but you know who you are!) had done a huge turd that was refusing to budge, squatters rights if you please! No matter how many times they flushed it was still there, taunting them from the bowl– I suggested donning a pair of Marigolds and to use a pair of chopsticks to manually eject the offending turd from its resting place, I believe that did the trick! I’m sorry I know its disgusting but I was literally in tears – toilet humour, works every time!

We live in leafy suburbia a place where nothing remotely exciting EVER happens and is mostly filled with the blue rinse brigade. You can image our surprise (and I have to admit,  delight) when an anonymous note was thrust through our letterbox in the dead of night, telling us that we had an S&M madam living across the side of our leafy crescent. The note gave chapter and verse about all the activities that were going on behind the seemingly bland curtains, the spankings, the whips and all kinds of weird stuff, it even gave the website of our salubrious neighbour. We thought she was touting for business but it ended with bringing notoriety to our street, so we should all complain to the authorities – very odd but hilarious none the less!

We have a church on on side of the green and S&M on the other, so I’ve invented a new game to while away the hours …  the green is surrounded most days with old farts attempting to park their cars ( I did mention that the blue rinsers rule the area) going to church events, yoga, painting and anything, it would seem that involves tupperware boxes of food!

Oh yes back to the story… I have the perfect vantage point to see the comings and goings  – are the men going left or right and who looks shifty and furtive when exiting their car – more often than not I’m wrong, they all seem to wear raincoats and carry little bags, so I can’t tell who’s got a yoga mat and who’s got a rubber suit in their bags, but it’s is hilarious when they skulk to the left, hoping no-one noticed – they do say laughter is the best medicine!

MS has robbed me of my sanity but not my sense of humour!

With a good round of chuckles, titters or a guffaw, we can give ourselves a few moments of remission from whatever symptoms are in our way.