Must try harder!

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Come on, let’s not beat about the bush, we have all, at some time had to put up with people making, what we perceive to be shitty comments about our illness or maybe they just do something that really pisses us off when we are talking about our MS… My bug bear is that they ask how we are doing, but the way they ask means they either can’t or don’t want to understand the answers we give.

I know they mean well and are trying to make me feel good when they say “but you look so well” but in my head, they’re saying “maybe you’re not as ill as you make out”  – it’s a vicious circle… I’m living my own version of Groundhog Day… Arghhh!!

Maybe they think we talk about MS more than we should, well I’m sorry but on any given day I actually don’t have much else to talk about – I have a chronic illness – get over it!

Since my diagnosis I have had to bite my lip and awful lot, in fact, it’s a wonder I am not sitting here, lipless from all the chewing.

As I chew, I find I’ve also added the “up yours’ head nod into the mix – you know the one where you tip your head to one side and nod rather than go to the constant effort of trying to explain what you’re going through. I’ve turned into that bloody annoying nodding dog in the back of car windows -pfft!

Obviously, I have been through a hell of a lot, how could I not talk about it? I appreciate that they may not understand but, I just wish that, for the sake of my sanity, they find a way to construct a sentence about MS that isn’t going to make me want to punch them in the face. In a bid to avoid internal combustion, I find It’s just so much easier to say “I’m fine” to any questions about my health. Been there, done that – move on!

So, in an effort not to be charged with culpable homicide on a regular basis, I’ve made a list of things we multiple sclerosis warriors would like to hear. I’m not looking for a quick fix or “make it better” solution but I just want – no need, people to show a little empathy by trying to listen and learn.

Here we go…

Do’s

I don’t have MS, so I can’t even begin to imagine what you’re going through every day…

I REALLY want to do something for you, so please let me know what I can do…

I know you are at the end of your tether

I’m here if you want a good cry

I’m here if you need to vent – you speak, I listen

I know that how you look hides how you’re really feeling.

We’d love you to pop over for supper but if you aren’t able to on the day, we will understand.

I’m really struggling with the MS thing, so be patient with me, I’m learning as we go

I’m feeling really tired today but I know that your tired is on a whole different level

So sorry that you are feeling crappy today. I hope you feel BRIGHTER tomorrow.

Me:  That’s so sweet, thank you (FINALLY!)

Do Not’s (don’t poke momma bear!)

But you looked so well the other day… ME: it’s called makeup and a shit load of effort,

You slept ALL night, how can you be so tired? ME: FFS!

 I know of someone’s uncles’ sister’s friend who has MS but has been symptom-free for 15 years… ME: Simple answer -lucky bastard

That person on the telly with MS seems ok, why aren’t you? ME: Perhaps because they have shit loads of money and can try all these new fan-dangled treatments and travel the world searching for THE answer!

You can’t feel that way ALL the time… Me: Let’s do “Freaky Friday” and change places for a day, see how you fare!

Maybe you just need to try a little harder. Me: WTF – It’s like a hoover has sucked all the energy out of me. I feel like a deflating bouncy castle most the time

You always seem to be away with the fairies in the middle of a conversation… ME: It’s the damn brain fog, a real pea souper most of the … er, what were you saying!

I know exactly how you feel! ME: I’m sorry I can’t hear what you’re saying for all the steam spurting from my ears!!

Once people accept that invisible symptoms are very real, life will be a lot better for all of us and I won’t have to be a lipless wonder for much longer!

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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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MS – stop stealing my Zzzzs!

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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

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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It’s the little things in life!

Its-the-little-things-in-Life_The-Red-Fairy-Project-250x250Some days I give a cheeky little smile, blow a raspberry and think, YEAH I’ve turned a corner & I feel better today … then I’m like

WOW

that was a really great 45 seconds – MS is a cruel MF!

Well, MS bitch – I’ll take that 45 seconds and raise you, one whole afternoon. Yes, today my friends, the sun was a shining, the birds a tweeting, lawn mowers a munching and I was a buzzing… for today, I had a GOOD DAY (large round of applause, if you please!)

On any given day, visiting my elderly parents (well any time I venture out actually) is incredibly draining and I’m completely pooped after a short visit, but today MFH, my Westie fluff ball and I, sat with them in the garden and enjoyed a picnic and a Pimms in the sunshine. It was a truly lovely day.

One of the things having MS has taught me is to do what you love, when you can, if only for a fleeting moment. Grab life by the balls and do the things in life that we thought we couldn’t do anymore. One of my favourite smells is freshly cut grass and I always loved to take charge of the mowing but MS has rather put the kibosh on that little delight, enthusiasm 1 – energy level 0 😦

I’ve already mentioned that today was a good day (oh god, I’m turning into a good day bore, sorry!) and to prove it this is me mowing the lawn – look at that face, I’m enjoying myself (excuse the washing on the line, can’t miss a drying day)  – No crutches required – huge achievement, zest for life… Whoop Whoop! You applaud and I’ll take a bow…

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Hang on, don’t get too excited I only managed two rows but hey, I’m feeling so bloody clever and content! It makes my heart sing.

That was yesterday and today Iv’e lost my GOOD DAY MOJO – I escaped the shackles of MS if only for a few hours then BOOM – it gives me a dirty great slap in the face and reminds me I’m chronically ill and need to yield to it’s mighty power and boy do I wilt like a soggy salad – BUT never fear, I’ll hunt down that “MS good fairy” and persuade her I’m worthy of many more good days like this.