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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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!

Sweet dreams – yeah right!

sleep

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 wouldn’t bloody know…We’re holding out for Mr Sandman to bring us a dream, but don’t hold your breath!!

If 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 ( oh but it feels so damn good) 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 (the times I’ve heard “ooooh me too, I know how you feel “– makes me want to smash them in the face with a tin of beans) 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 might just work if you’re lucky, 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, nighttime 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 is 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.  It’s 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 you’re 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 are a few things MS patients can do to help with nighttime 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