Spooning – but not as we know it!

hand-painted-wooden-spoons

Spooning with MFH is always the best part of my day. Spooning is all about the cuddles. Think of spoons neatly arranged in a drawer. Their bowls are perfectly aligned, the hollow of each lying flush with the next – ah heaven! Spooning can lead to forking but that’s a whole different use of cutlery! (whoops – inappropriate Mother alert!!!)

Since MS forced its way into my life, I’ve discovered a whole new meaning for the word SPOON…

Some lucky so and so’s have boundless energy and stamina ( I remember when that was me!)  but those of us who don’t, due to chronic illness, find it really hard to explain our energy levels to the uninitiated and seem to spend our time explaining that we’re not lazy, we’re just oh-so-darn tired. And that’s where the theory of spoons comes in.

What is the “spoon theory”?

It’s a quirky way of explaining how much energy or in our case – lack of it, we have on any given day.

You can’t measure energy levels scientifically but this unit of measurement – numbers of spoons you have – seems to hit the nail on the head.

TS Eliot’s quote “I have measured out my life with coffee spoons” could have been written for us  – the MS “Spoonies”

The basic theory is that we count our day in spoons – tasks – 12 is the number bandied around but it’s up to you to set your spoon limit. Every activity we do costs us one or more of our daily allowance of aforementioned spoons and we have to use them wisely to get through the day: Here’s my take on it…

Getting up in the morning = 1 spoon

Having a bath = 1 spoon (getting in and out on a bad day – at least 3 spoons)

Walking the dog = 2 spoons (unscheduled squirrel chase – spoon meltdown!)

Visiting friends = 4 spoons (just a chat and a coffee use lots of spoons – meh!)

Work = 5 spoons (avoidance will save spoons)

Shopping = 5 spoons (however, online shopping = 1 spoon and is ultimately far more satisfying  – boom!)

Exercise = 5 spoons (use your spoons wisely)

Climbing the stairs = 1-2 spoons (I live in a 3 storey house, so I’m all out of spoons by lunchtime!)

Cooking = 3 spoons (baking – I’m no Mary Berry so spoon reserves required)

Watch TV = 2 spoons (anything with George Clooney or Ryan Reynolds – gains you a spoon swoon and swooning is good for the soul and heart rate! (I’d happily polish their spoons!)

Reading – 1 spoon

Making phone calls = 3 spoons (anyone with the gift of the gab are exhausting)

Ironing = this uses more spoons than you have in your draw, so give this one a wide berth!!!

Attend social event = 5 or more spoons (but so worth stockpiling your spoons for these rare outings!)

Extracurricular activities = Way too many spoons, but so worth it!!!

You might hear someone say they’re running low on spoons. Don’t rush to John Lewis to replace them, they just need to rest and recuperate!.

And if we spoonies use up more energy than we actually have, and get overly exhausted as a result, it’s known as getting into “spoon deficit”. This is when you have to have a ” crash landing” – an unscheduled rest to get over non-standard events such as a day out or hospital trip.

It’s all about pacing yourself and choosing which tasks are worth “sacrificing a spoon” for. In my humble opinion – ditching the cleaning and spending the afternoon on the sofa with a good book means you’ve replenished your spoon stock and can go to the theatre or out for supper without having to use matchsticks on the eyelids!

Word of warning… if you exceed your daily allowance, be aware that you’ll be dipping into your spoons for the next day, but then that’s fewer spoons for tomorrow.  Plan carefully or you’ll end up a gibbering wreck with not a spoon to call your own and forking is will be a thing of the past!!

Spooning-and-Forking-Romantic-Sweetest-Day-Card-root-369SD5612_PV.1.SD5612.jpg_Source_Image

Advertisements

Shake, rattle & roll… and repeat!

 

29808.309048875.custom

 

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!!

 

 

 

 

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

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

MS warrior to knit nibbler neurotic!

 

moth1

 

Firstly, let me start off by saying I am not bonkers (well, not according to me anyway -others may say differently!) but for once it’s not the MS that’s turned me into a crazy woman. How can something so small make your head want to explode?

Moths have been the bane of my life since moving back from sunny Spain, where the only irritants were mozzies.

Mozzies I could just about cope with – swatter and soothing cream to hand at all times but at least you knew where you were with a mozzie. You would have a warning they were on the prowl, a gentle distant humming announced they were about to descend. A few swift flicks with the swatter and you would have a dozen little corpses splayed across the swatter of death.

Moths, moths are a different kind of irritant, not your common moth, that appears, flaps around and then buggers off. The thorns in my side were a tiny gold speck of a stealth attacker. You don’t know they are there, but these flipping fluff fanciers can do some SERIOUS damage – I mean serious – ignore them at your peril!

Why am I neurotic about these knit nibblers I hear you ask? I’ll tell you why… be warned, by the time you see them on mass, the damage is done, they’re like larvae leaving tag teams. They’re there to remind you of that,  moths don’t eat your much-loved woolies  – the larvae do, so you have to destroy these knit nibling ninjas before they find your wardrobe.

These little freaks of nature will bypass your average item of clothing (that old M&S jumper that hasn’t seen the light of day for years has nothing to worry about) and will go straight to your expensive faves ( White Company lovelies – hang about in my wardrobe if you dare) At our old house they happily munched their way through hundreds of pounds worth of my gorgeous, uber expensive woolies, not little canape size nibbles that could be repaired but instead, devouring the main course, licking the plate clean if you will, so the only option is to bid those cashmere cuties a tearful farewell!

They induce in me a low-level neurosis that can’t simply be about holey clothes – but it is, with bells on. I used to be a fledgeling neurotic now I’m a fully signed up member of neurotics anonymous!

At our new house, I’ve now gone into full-on, mad moth women mode because the little buggers are here too. Not on mass but still here, still taunting me  – “come and get me -come and get me”. I’m on high alert at all times, MFH is called into regular action with the hoover to seek and destroy any evidence of theses devilish knit nibblers as I refuse to let these munching monsters make whoopie in my wardrobes. So, when one seemingly innocent moth flutters into my peripheral vision – I leap ( yeah, I wish) or should I say,  lurch, with added wobble into action and pursue the tiny terror.

The mozzie swatter of death is of no use against these menacing munchers, the best weapon ( discovered through trial and error) is slapping my hands together like a praying mantis ready to devour its pray until “SMACK/CLAP” (a lot of manic clapping, swearing and more often than not missing) and… Gotcha –  I whoop with delight and utter glee as another one bites the dust! ( they literally turn to dust once smacked) I’m like a stealth missile, well sloth meanderer – I’m like the proverbial  Mountie… I always get my moth!

I often get asked if I have any hobbies to keep me occupied and my answer is yes, YES – moth catcher, I’ve taken obsession to a whole new level – I’m like a knit nibbler nobler ninja warrior… I seek – I see – I slap and poof – they’re gone. I show no mercy!

MFH thinks I’m off my rocker and am totally OCD about them but, a recent article in the Times said that gold moths are abundant this year and Worcestershire (yes MY county) is the worst hit area – so there may be madness in my method but I’m going to be a happy clapper – moth slapper for just a little longer – I’m giving you fair warning you fluttering fiends… munch my mohair if you dare!.

 

 

It’s been a while, but I’m back!

Hello-Im-back

As you know, I haven’t blogged for a while now. I started all bells and whistles and really enjoyed my dabble into the literary world but somewhere along the way, I lost my mojo for the blogging life and became literally lost for words! I did try to put fingers to keys, but I’d find myself just staring blanking at my desktop screen willing myself to write something – anything, but the little grey cells clubbed together and went into hibernation and no matter what I tried, the “do not disturb” sign stayed firmly in place.

MFH says writing is like riding a bike, you never forget how to do it. Even if it’s been a long time – you just get back on and peddle. So, as the grey cells slowly wake from their self-induced slumber,  I’m going to dig out my hypothetical bike, dust it off and get my rather flabby bottom back in the saddle and peddle –  and one, two, three I’m off – Look no stabilisers,  I might be a bit wobbly at first, but I’ll soon be whizzing round corners like a tour de France pro in a bid for the yellow jersey!

Taking inspiration from that newly released feel-good film. I’m going to say hello blog and sing…

Mamma mia, here I go again
My my, how can I resist you?
Mamma mia, does it show again
My my, (blog) just how much I’ve missed you?

Ps: just working on a blog and it’s a doozie – watch this space!