Spooning – but not as we know it!

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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!!

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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!!

 

 

 

 

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!

It’s a game but not as we know it!

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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

Me, an MS Foodie – Who knew!

Me, an MS Foodie – Who knew!

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Since MS entered my life like a lightning bolt, I’ve spent a lot of time debating whether or not to follow special MS diets. After doing a little homework on the various diets out there and road testing a few (credit card has taken a real pounding!), I’ve come to the decision that most are not sustainable & are not for me. No matter how much I try, Kale and I will never be best friends! #msdietsmeh…

Each of us with MS follows our own food journey and what works for one isn’t going to work for others. what is it they say – “One man’s meat is another man’s poison”; but we mustn’t get all judgy wudgy over each others diet choices!

There are no hard and fast rules, you’re not sent straight to MS hell if you don’t follow Swank or OMS etc. The one thing I think we can all agree on is that you do have to rethink some of your food choices and write your own diet rules. A little bit of what you fancy does you good…

I’m no diet expert, but I have to follow my gut as to what I should and shouldn’t eat. My gut says ” MS diets are not a cure, eat healthy foods and partake in healthy habits like drinking lots of water and avoiding junk food* (* I’ll come to that later)” and you’ll find a happy balance that works for you”

My gut is very wise and knows me very well, and let’s be honest, it’s common sense stuff really – you have to find what works for you – mind, body, soul & tummy. If these are all fighting against each other, you’re fighting a losing battle! I’ve found that prebiotics & the 5:2 diet help to recharge my ever decreasing energy levels.

I’ve removed a hell of a lot of “baddies” ( those oh so yummy processed delights) from my shopping list and and am constantly trying out new “goodies” and we seem to have a happy balance now.

I eat healthy whole foods including bread, lean meats, nut butter and other so-called “bad foods.” My gut and I also thank carbs, like eggs and other so-called “problem” foods for making it possible for me to live a normal life with MS.

* As for junk food, well it’s ok to be naughty every now and then, as it’s my reward for being a good girl ( most of the time!) Goodbye quinoa & Hello Micky D’s – naughty but nice – hell yeah!

I’m no Mary Berry or Deliciously Ella, but MFH & I do try and cook all our meals from scratch and we are eating a much healthier diet now. We are a real tag team in the kitchen and are slowly turning into Fannie and Johnny – only those of us of a certain age will know who they are!! (Amelia Freer is our fave go-to cookbook).

I thought it might be nice to start sharing some of my healthy but super delicious finds – Here’s my first batch – hope you like them…

Frittata Muffins

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I adore frittatas and as some days you don’t feel like cooking but yearn for something tasty for breakfast, why not make up frittata muffins to keep in the fridge for quick snacks or meals. Frittata is a natural at breakfast and making mini ones using muffin trays is a brilliant idea.  It’s great fun, super easy and quick (always my preference) and they are simply delicious. And pretty much any filling goes…  all you need to do is whisk eggs in a bowl ( as many as you like)

How to:

  • Grease the muffin tray with coconut butter (or olive oil).
  • Choose your fillings and put a small teaspoon in the bottom of each muffin tray then spoon over the whisked egg until they are just filled.
  • Bake in the oven on a medium heat, roughly 150°c for 10 mins or until they are cooked through.
  • They are fluffy and light and a lovely way to feed a busy breakfast bunch AND they are great hot, warm or cold.  Play around with the fillings, use leftovers and make sure you add in flavour.

Try these egg ‘muffin’ fillings:

  • Sundried tomato, chilli & paprika
  • Beetroot & Feta
  • Roasted Squash and Sage
  • Avocado, Spinach, chives & basil

Dreamy Coconut Pancakes

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These are seriously yummy pancakes; they crisp nicely on the outside but are very fluffy and soft on the inside. Just add blueberries and coconut as they work so well together here, but you can swap these for your own favourite combo.

Serves 2 – You’ll Need:

  • 35g coconut flour
  • 1/2 teaspoon bicarbonate of soda
  • a pinch of sea salt
  • a pinch of vanilla powder, or a teaspoon of vanilla extract
  • 2 medium eggs, preferably free-range or organic
  • 130ml coconut milk
  • coconut oil
  • fresh blueberries, coconut flakes
  • maple syrup, to serve

Step-By-Step

  • Mix together the dry ingredients in a large bowl. Add the eggs, then slowly add the coconut milk, mixing with a wooden spoon until you get a smooth batter (you might need to add a little more coconut milk, depending on the thickness of your coconut flour – the batter should be quite runny).
  • Heat a large, non-stick frying pan over a medium heat and melt 1 tablespoon of coconut oil. When the oil is hot, spoon in 2 tablespoons of batter for each pancake.You will need to cook them in batches.
  • Leave to fry until completely cooked and brown underneath, then carefully flip over and cook the other side. Transfer the pancakes to a plate and keep them warm while you cook the remaining batter.
  • Serve in a stack with fresh blueberries, coconut flakes, and maple syrup. Alternatively, press the fresh blueberries into the batter in the pan, so that they’re cooked into the pancakes.

You could also use frozen blueberries rather than fresh. Put 2 handfuls and a few tablespoons of water into a small saucepan and bring to a simmer –this gives you lovely, dribbly blueberries with a purple ‘sauce’.

 

Sweet Potato Cakes, Tiger Prawns & Ginger-Saffron Yogurt

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I love a good sweet potato cake. Sweet potatoes have a great colour and they are more nutritious than potatoes.

You’ll need (serves 4)

  • 3 medium-sized sweet potatoes, peeled (approximately 750g)
  • 1 egg
  • 25g coconut flour
  • 3 spring onions, chopped
  • 1tsp sea salt
  • a sprinkle of freshly ground black pepper
  • coconut oil, for frying
  • 16 raw tiger prawns, peeled and deveined

For the ginger-saffron yoghurt:

  • pinch of saffron threads
  • 125g coconut yoghurt
  • 1tsp finely grated fresh ginger
  • 1tbsp extra virgin olive oil
  • a squeeze of lemon juice
  • 1tbsp freshly chopped coriander (optional)
  • 1tsp freshly chopped mint (optional)

Step-by-Step

  • Steam or boil your sweet potatoes for 10-12 minutes until soft. Drain and dry the potatoes in the pan for 1-2 minutes, then mash them until smooth. Mix in the egg, coconut flour, spring onions, salt, and pepper. Form 12 lime-sized balls and press these into patties, about 1cm thick. If making ahead, chill the cakes in the fridge until you are ready to cook them.
  • Add ½tbsp boiling water to the saffron threads and leave to cool. Remove from the water and mix them into the coconut yoghurt with the ginger, olive oil, salt, and pepper. Squeeze a little lemon juice. You can add coriander and mint as well if you wish.
  • Put 2tbsp coconut oil into a large non-stick frying pan over a medium heat. Fry the cakes for 3-4 minutes on each side, until golden brown.

Quickly sauté the prawns in a non-stick pan in a little coconut oil for 2 minutes on each side, until pink and cooked through. Serve the patties with a dollop of ginger-saffron yogurt over the top and the prawns on the side. 

Simple Prawn, Coconut, and Aubergine Curry

This is completely addictive and simply divine. Once you’ve tried it you’ll be hooked. It’s so easy to make – easy peasy, lemon squeezy!

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You’ll need (serves 4)

  • 2 tbsp coconut oil
  • 1 onion, chopped
  • 2 cloves of garlic, finely grated
  • 1 thumb-sized piece of fresh ginger, peeled and grated
  • 1 red or green chilli, deseeded (if you like) and finely chopped
  • 1 tsp ground cumin
  • 1 tsp ground coriander
  • ½ tsp garam masala
  • ½ tsp turmeric
  • 1 aubergine, grated or cut into fine julienne
  • 100g cherry tomatoes, cut in half
  • 300ml vegetable stock
  • 250ml coconut milk
  • 200g raw tiger prawns, peeled
  • 1 large handful of baby spinach
  1. Heat 1 tbsp of the coconut oil in a large pan and fry the onion, garlic, ginger and chilli for 2-3 minutes to soften, stirring frequently. Stir in the spices and season well with a pinch of salt and pepper. Continue to fry over a medium heat for a further 1-2 minutes until fragrant. Transfer the mixture to a mini food processor and blend until smooth, adding a splash of water if necessary to loosen the consistency to a paste.
  2. Return the pan to the heat and add the remaining coconut oil. Add the paste and fry for 2-3 minutes. Add the aubergine and sauté for 1-2 minutes, stirring to coat it in the paste, before adding the cherry tomatoes. Pour in the stock, bring to the boil, then reduce the heat and simmer gently for 10-12 minutes.
  3. Add the coconut milk and prawns and cook for 3-4 minutes until the prawns are pink and cooked through and the sauce has just thickened. Stir in the spinach, wilt for a minute, then season to taste with salt and pepper. Serve immediately.

Simply Divine Nutty Banana Ice-cream

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I defy anyone not to get all weak-kneed over this little bowl of heaven! If you have never thought of using bananas to make ‘ice-cream’, prepare for a real treat. Their texture once frozen and blended is like the most delicious, creamy sweet ice-cream you’ve ever tasted. The addition of nut butter here adds some healthy fats and plant protein, to slow down the release of fruit sugars from the banana.

Ingredients

  • 1 ripe banana, peeled, sliced and frozen
  • 2 teaspoons of almond or hazelnut butter
  • 3 tablespoons coconut or almond milk

Step-by-Step

Slice and freeze your banana the night before you make this.

In a small food processor or blender, whizz up the banana and nut butter with 2 tablespoons of milk. Push the mixture down the sides of the bowl and add another tablespoon of the milk. Use just enough to get it whizzed up smoothly without becoming runny. Eat immediately, as it defrosts quickly (although I’m sure I won’t need to tell you twice!).

Don’t judge me for going rogue and following my own sensible eating plan. I’m actually turning into a bit of an MS foodie & love sharing my favourite healthy eating cookery books & giving a little inspiration in the kitchen. Enjoy your food journey…

(By Amelia Freer – From the book: Cook. Nourish. Glow)

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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