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

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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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Give us a clue – meh!

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In the good old days, I used to be an absolute whizz at word games, after all I could talk for Britain – verbally incontinent, if you will! ( now i’m just incontinent – boo hoo!)

Fast forward to 2017 and MS has turned my brain to mush and I’m fully aware, it’s only going to get worse. At any given moment I can burst into complete jibberish when trying to cobble together a constructive sentence – no matter how hard I try, total bollocks is all that I can muster. My son always berates me for using 20 words when 5 will do, but now it’s a bloody marathon just to get out one whole sentence!

My mouth says ” can you get me – urm – hang on a minute, it’s coming, let me think about it  – a do-dah from the thingeamagig” but my brain is screaming something completely different, there you are… proof, it’s official – I am now a verbal halfwit!

I honestly can’t seem to remember even simple worlds, I find myself stopping mid sentence to trawl through 50 odd years of spoken words before blurting the word out with utter glee “hammer, yes HAMMER” – ffs, in my head it sounded like avocado – meh!

In a bid to stay one step ahead of my MS word fiend, I have resorted to describing the thing I’m trying to say ” it’s green, nobbly and we grew them in Spain”  I’ve even started to add in hand gestures to get me over the finish line of a sentence. Im so good at it now, I bet Lionel Blair & Una Stubbs would be fighting to get me onto their teams on Give us a clue (OMG,that shows my age!)… content – 5, fucking effort -11.5!

MS – You might have turned me in a to a jibbering monkey, but I get there in the end – tah dah!!

PS it also helps that MFH seems to be tuned into radio MS and can guess what Im trying to say!!

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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!