Save your Spoons!

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Spooning with MFH is always the best part of my day. Spooning is all about the cuddling. 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 came into my life, I find there’s now a separate use 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 “spoon theory”?

It’s a quirky way of explaining how much energy or 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 bad day 3 spoons)

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

Visiting friends = 4 spoons (just a chat and a coffee uses lots of spoons)

School run = 3 spoons

Work = 5 spoons

Shopping = 5 spoons (on-line shopping 1 spoon and more satisfying  – boom!)

Exercise = 5 spoons (use your spoons wisely)

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

Cook = 3 spoons (baking – spoon reserves required)

Watch TV = 2 spoons (anything with George Clooney or Ryan Reynolds, gains you a spoon – swooning is good for the soul!)

Reading – 1 spoon

Making phone calls = 3 spoons

Ironing = weeks worth of spoons, so give this one a wide berth!!!

Attend social event = 5 or more spoons

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!!

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Bored with a capital B! #imsobored

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Life with MS is like being the last suitcase on a never ending airport luggage carousel – you keep going round and round but you can’t find away to to get off, no-body has claimed you, so you’re stuck in limbo. Now I know exactly how a bloody hamster feels!

MS gives you many things, but the one thing you are not prepared for is the sheer boredom. Having the energy of a dead gnat and being housebound for the majority of the time is oh so boring – I’ve lost my mojo!

What they don’t tell you in all the leaflets about the symptoms you can expect with MS, is the sheer mind numbingly tedious boredom that goes hand in hand with this illness.

Let’s face it – Ms itself is far from boring as the first thing you think of every morning is what delightful symptoms it’s going to chuck at you and as we all know, the MS bag of tricks is like a Mary Poppins bag – deep and never ending!

Bollocks to a spoonful of sugar, its hello to a bag of crap…

To the outside world it must look like we have a cushy life with this MS lark – not being able to work, lazing about the house and having others wait on you hand and foot. Well let me tell you world – when you’re forced into 24 hour house arrest by the ms police – boredom is not a luxury, its a sentence and there’s no early release for good behaviour!

Being stuck in the house for most of your time is sooo yawn inducing ( yeah I found another way to describe boring!). Life is buzzing all around outside like bees to a honeypot, but no matter how much you try, you can’t participate as your captor reminds you that you are in detention – limbo if you will!. There are so many things I want to do, but when you have the top speed of an inebriated sloth, moving from bed to sofa is as much as we can muster most days.

Feeling tired all the time is monotonous ( I’m like a thesaurus today) – In my youth I was a world champion sleeper, you couldn’t get me out of bed with a ten foot barge pole – but at this stage in my life, having to sleep as a necessity is so damn irksome ( I’m on a roll!) and I spend most of my day resisting the urge to count sheep – in my mind, the more I sleep the more life slips through my fingers and I feel MS is taking over.

I have one gorgeous friend who, no matter how many times I turn her down, keeps asking me to do things – she’s going to get bored eventually and stop asking, but love her for trying. Whilst I am on permanent repeat – same old symptoms –  a bit wobbly, in a black hole, tripped over the dog, she’s galavanting all over the place at break neck speed. Am I bothered? Yes I am – I long to galavant without a care! You can’t just leave the house with gay abandon – It takes me so long to prepare for going out, that most of the time I say “bugger that, I’ll try again tomorrow”!

I still haven’t mastered the art boredom, there’s not a lot you can do from the comfort of your chair – I find myself staring out of the window, willing something to happen, to break the monotony of my LONG, LONG days . The highlight of my day is flicking through the listings on Sky and marking off what I’m going to watch on TV – god I’ve turned into the people I used to mock for being losers!

In a bid to combat the MS boredom (Ive never been into puzzles and solitary games) it would appear that I’ve turned into Shirley Valentine – I talk to the bloody wall… (mad as a box of frogs I hear you cry!)

Me: I spy with my little eye something beginning with b…

Wall: …

Me: Bored – I’m just bored – bored of being bored – bored of saying I’m bored!!!!

Wall…. (obviously he can’t reply, he’s a wall –  but he’s such a good listener, bless him!)

Another boredom buster is online shopping – and I am sooo good at it! The postman came to the door so often that he and MFH were on first name terms! – MFH has now attached a rubber band to my credit card so that it now pings back into my wallet before I have chance to complete a purchase – ah it was fun whilst it lasted! My claim that it helped pass the time fell on deaf ears!!!

People ask “what an earth do you do all day” and I ask myself the same question ….. Now, don’t get me wrong, some days I’m actually quite a busy, but ultimately I’m bored bored bored. I used to have proper conversations, a zest for life, a waspish wit and I really do try and keep a positive mental attitude, but as I sit here clicking the keys ( putting pen to paper is so last century) I’m still mojoless and bored – blah – blah – blah!

You must be bored rigid with this post, I know I am, so I’ll draw a line under the whole boredom thing – it’s so boring! #imsobored.

 

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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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Giving pain the elbow!

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Dear Pain,

I’ve finally plucked up the courage to put pen to paper and tell you exactly how I feel. When you first came into my life, I reluctantly accepted you as you and MS came as a pair, a tag team of misery. I have learnt to cope with your spiteful digs, barbed jabs and your unrelenting grievous bodily harm but, enough is enough, it has to stop, I can’t take anymore. Iv’e been feeling this way for a long time but tried to pretend I could carry on. 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 wanker and I deserve to find something that can offer me tenderness, soothing and an escape from all things that involve you, 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 though this difficult time, It’s called love and kindness with a side order morphine and gin!  I have to get this off my chest… You’re vicious, heartless, brutal and quite frankly, downright evil. I’m done, we’re through, you’re out of my life. I would say goodbye forever but I know, you’ll find away to creep back into my life.

See you around -NOT!
Signed, Me.

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Pick yourself up – brush yourself down – & repeat!

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Being diagnosed with MS put my life in perspective. It’s made me realise that I’m not as invincible as I once thought. It took me a long time to realise that if I was going to stand a chance of self preservation, I had to try and find “the funny” in the everyday, don’t let the bugger get you down!

MS has robbed me of my self titled super woman status. I can’t juggle all of the plates all of the time, like I used to, I am, but a mere mortal after all!!  I always thought I was the epitome of the ever ready bunny, nothing could stop me, but it’s now dawned on me that MS has turned me into a fucking 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 –  Iv’e weebled, I’ve wobbled and now I can’t get up!!!

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A positive addition to all the bollocks that goes hand in hand with this illness, is that I have made some brilliant connections with a wonderful online MS community, that have had a truly positive impact on my perception of this shitty disease. You can laugh, in the face of adversity  – no one will judge you!  No two of us have the same symptoms, and no two of us experience MS in the same way, so all our stories are different, It’s kinda like being handed a giant bag of MS flavoured pick-n- mix, but MS decides what you get. There’s nothing sweet in that bag, they are all sour by the way! Just when you think you have a handle on things, “Boom” MS sticks its sticky little mitts back into the bag of symptoms again and chucks another one your way.

MS has made me realise that I need to live in the moment – and appreciate those moments – because no one knows what what obstacles life will throw at you. MS has made me want to find adventures and try new things, a life without limits – “ha ha –fooled you!”  the reality is that I’m sad that MS means there are limitations to my life and I’ll never reach my full potential. No idea what the hell that was, but I’d like to have had a bloody good stab at trying to reach it. Ive come to the conclusion that MS must be of the female persuasion, cos life’s a bitch, only a woman could be this mean – Im being bullied and no matter how much I fight her, she’ll only knock me down again – hence… sense of humour essential!

Yes, this disease made me want to eat healthier and exercise more… now I’m digressing, I’ll save that doozy for another day!

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.