Save your Spoons!

spoons

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!!

200_s

Advertisements

Bored with a capital B! #imsobored

dcMPUnZV_400x400

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.

 

bored-cat_Fotor

MS – stop stealing my Zzzzs!

sleep1

Sweet dreams –yeah right!

Hit the snooze button…

Where’s that damn snooze button?

They do say that there’s nothing like a good night’s sleep – but for most of us living with multiple sclerosis, we would’t bloody know…We’re holding out for Mr Sandman to bring us a dream, but don’t hold your breath!!

MS has taught me one thing, it’s that you’ve got to be kind to yourself. I don’t mean go mad with the plastic, I mean look after your body – it’s a temple – a sleepless temple but one still the same!

Fatigue is, after all, an invisible symptom of MS, but we all know, only too well, that doesn’t mean it’s not real. Listen to your body – and if that means taking regular duvet moments, then do it – and don’t feel guilty, sleep is a luxury, so don’t squander it when you do get it!

It’s hard when people can’t grasp that feeling tired and suffering fatigue are two very different things – as anyone living with MS will tell you. Tiredness for lesser mortals, comes from overexertion ( well boo-fucking-hoo!) and a few extra hours of sleep will do you the world of good. Fatigue on the other hand is a never ending lack of energy and unfortunately, this overwhelming feeling of exhaustion is one of the most common side effects of living with of MS and at least 75% of people with the condition have it at some stage.

It’s all very well being told you need more sleep but, no matter how much we try, it’s still out of our reach. It’s like standing on tiptoes in a bid to reach that bar of chocolate in the back of the cupboard – even though you can touch it, feel it, smell it – you can’t actually get hold of it -meh!

Whilst drugging yourself every night is appealing, sleeping pills just knock you out but don’t actually solve the problem. So it’s up to us to find something that works for us, it’s very individual and everyone’s different in their approach to how to achieve the sleep we need.

When fatigue makes me feel like I’m trudging through treacle, I usually retreat to my quiet corner in a bid to preserve my fast dwindling energy. When the tiredness finally hits, I tend to feel light headed and need to lie down and on average fall asleep within five minutes, easy peasy.  Yet in a cruel twist of fate, night time sleep evades me.

Fatigue in MSers can feel like your batteries are draining faster than you can plug in your charger and reboot and even the simplest of tasks, either physical or mental are a huge struggle, for no particular reason at all.

The boffins in white coats are starting to identify a very specific type of fatigue that only people with MS experience. They’re calling it “lassitude” and this MS-related fatigue is usually experienced every day and can be much worse than ‘normal’ fatigue. Even if you’re lucky enough to get a good nights sleep, you can still wake up feeling completely knackered.

As with so much of this shitty illness, the exact cause of MS fatigue is unknown. Those in the know believe low energy levels are a result of the brain adapting to damage. It’s also believed that scarring in the brain (another symptom of MS) may well to be a factor.

The Sleep Foundation, recently categorised naps into three different types and for us MSers they tend to be part of our everyday life.

Planned napping: This is actually taking a nap before you get sleepy and as we all know this type of napping is good if we know we’ve got something on and it helps us get through the day.

Emergency napping: When you hit the what I call “MS fatigue wall” and need to stop what you’re doing and hit the mattress for an emergency nap.  Its an overwhelming need to sit or lie down wherever and whenever it hits me. This kind of napping is useful, but not always possible if your’e in the supermarket or out for lunch!

Habitual napping: Taking a nap at the same time each day like young children do, as this can really help get through the afternoon slump, which seems even stronger when you are battling MS.

Here’s a few things MS patients can do to help with night time sleep… I’m sure you’ve heard it all before – but you may just find a few things you didn’t know.

  1. Eat a high-protein snack several hours before bed. This can provide the L-tryptophan needed to produce natural melatonin and serotonin.
  2. Try & avoid junk food–  it’s so tempting to grab those stodgy foods when you’re tired, but a sudden rush of sugar triggers an energy rush soon after your sneaky treat.
  3. Eat cherries in the evening. Cherries boost the body’s own supply of melatonin.
  4. Eat nuts, which are rich in selenium.
  5. Get plenty of natural sunlight to improve your vitamin D levels or take a vitamin D3 supplement.
  6. Take a siesta – if you’re not sleeping well at night then a short afternoon nap can help recharge your batteries and get you through the day.
  7. Be sensible with your to-do list to include only essential tasks, and factor in as much rest time as possible in between tasks.
  8. Lemon Balm Powder is considered a “calming” herb. It’s a natural sleep aid.
  9. Try taking valerian as it decreases the time it takes for users to fall asleep and in some studies, it lengthened total sleep time and/or improved sleep quality.
  10. Melatonin is a hormone that occurs naturally in the body. It is associated with regulating your 24-hour wake-sleep cycle. Slow release tablets are best
  11. Take extra calcium and magnesium at night before bed to help with insomnia (this also helps with balancing stress hormones).
  12. If you’re struggling to keep up with things, ask for advice from your social media Ms friends about how they manage their energy levels.

A good night’s sleep is just what you need if you’re living with MS. So come on, let’s put MS to bed and tuck it in tightly so it can’t wiggle out in the night and give you a prod. Try and find what works for you, it’s out there, you just have to find it – oh and why not treat yourself to some new jimmy jammies, so that if we are lucky enough to have sweet dreams, we’re going to look good having them!

As I’m writing this, it’s 4 in the morning, and after all of this talk of naps, sleep still evades me, but at least I’ve got my mid afternoon nap to look forward to later… oh the joys of naps, it’s become my guilty pleasure! Here’s my little westie ball of fluff taking his nap, if only it was that easy for me!

so cute