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

MS warrior to knit nibbler neurotic!

 

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Firstly, let me start off by saying I am not bonkers (well, not according to me anyway -others may say differently!) but for once it’s not the MS that’s turned me into a crazy woman. How can something so small make your head want to explode?

Moths have been the bane of my life since moving back from sunny Spain, where the only irritants were mozzies.

Mozzies I could just about cope with – swatter and soothing cream to hand at all times but at least you knew where you were with a mozzie. You would have a warning they were on the prowl, a gentle distant humming announced they were about to descend. A few swift flicks with the swatter and you would have a dozen little corpses splayed across the swatter of death.

Moths, moths are a different kind of irritant, not your common moth, that appears, flaps around and then buggers off. The thorns in my side were a tiny gold speck of a stealth attacker. You don’t know they are there, but these flipping fluff fanciers can do some SERIOUS damage – I mean serious – ignore them at your peril!

Why am I neurotic about these knit nibblers I hear you ask? I’ll tell you why… be warned, by the time you see them on mass, the damage is done, they’re like larvae leaving tag teams. They’re there to remind you of that,  moths don’t eat your much-loved woolies  – the larvae do, so you have to destroy these knit nibling ninjas before they find your wardrobe.

These little freaks of nature will bypass your average item of clothing (that old M&S jumper that hasn’t seen the light of day for years has nothing to worry about) and will go straight to your expensive faves ( White Company lovelies – hang about in my wardrobe if you dare) At our old house they happily munched their way through hundreds of pounds worth of my gorgeous, uber expensive woolies, not little canape size nibbles that could be repaired but instead, devouring the main course, licking the plate clean if you will, so the only option is to bid those cashmere cuties a tearful farewell!

They induce in me a low-level neurosis that can’t simply be about holey clothes – but it is, with bells on. I used to be a fledgeling neurotic now I’m a fully signed up member of neurotics anonymous!

At our new house, I’ve now gone into full-on, mad moth women mode because the little buggers are here too. Not on mass but still here, still taunting me  – “come and get me -come and get me”. I’m on high alert at all times, MFH is called into regular action with the hoover to seek and destroy any evidence of theses devilish knit nibblers as I refuse to let these munching monsters make whoopie in my wardrobes. So, when one seemingly innocent moth flutters into my peripheral vision – I leap ( yeah, I wish) or should I say,  lurch, with added wobble into action and pursue the tiny terror.

The mozzie swatter of death is of no use against these menacing munchers, the best weapon ( discovered through trial and error) is slapping my hands together like a praying mantis ready to devour its pray until “SMACK/CLAP” (a lot of manic clapping, swearing and more often than not missing) and… Gotcha –  I whoop with delight and utter glee as another one bites the dust! ( they literally turn to dust once smacked) I’m like a stealth missile, well sloth meanderer – I’m like the proverbial  Mountie… I always get my moth!

I often get asked if I have any hobbies to keep me occupied and my answer is yes, YES – moth catcher, I’ve taken obsession to a whole new level – I’m like a knit nibbler nobler ninja warrior… I seek – I see – I slap and poof – they’re gone. I show no mercy!

MFH thinks I’m off my rocker and am totally OCD about them but, a recent article in the Times said that gold moths are abundant this year and Worcestershire (yes MY county) is the worst hit area – so there may be madness in my method but I’m going to be a happy clapper – moth slapper for just a little longer – I’m giving you fair warning you fluttering fiends… munch my mohair if you dare!.

 

 

It’s been a while, but I’m back!

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As you know, I haven’t blogged for a while now. I started all bells and whistles and really enjoyed my dabble into the literary world but somewhere along the way, I lost my mojo for the blogging life and became literally lost for words! I did try to put fingers to keys, but I’d find myself just staring blanking at my desktop screen willing myself to write something – anything, but the little grey cells clubbed together and went into hibernation and no matter what I tried, the “do not disturb” sign stayed firmly in place.

MFH says writing is like riding a bike, you never forget how to do it. Even if it’s been a long time – you just get back on and peddle. So, as the grey cells slowly wake from their self-induced slumber,  I’m going to dig out my hypothetical bike, dust it off and get my rather flabby bottom back in the saddle and peddle –  and one, two, three I’m off – Look no stabilisers,  I might be a bit wobbly at first, but I’ll soon be whizzing round corners like a tour de France pro in a bid for the yellow jersey!

Taking inspiration from that newly released feel-good film. I’m going to say hello blog and sing…

Mamma mia, here I go again
My my, how can I resist you?
Mamma mia, does it show again
My my, (blog) just how much I’ve missed you?

Ps: just working on a blog and it’s a doozie – watch this space!

 

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)

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!