Category Archives: Daily Life

Dec 01 2013
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Daily Life

Five Minutes With The Ice Cold Chef

Ice Cold ChefI’ve been chatting with The Ice Cold Chef, aka John Joyce, who is hoping to publish a cook book for carers. Find out more about this fabulous project here.

How did the idea of the cook book come about?

7 years ago my wife Bev was diagnosed with Secondary Progressive MS at the age of 45. At this time I didn’t cook as I worked away – Bev taught me the basics and the rest is history! The cook book will be for charity and is aimed at carers and their families, hopefully to encourage them to cook a meal from fresh ingredients rather than eating frozen or processed food. I hope the fact I have started from scratch in the kitchen will inspire them!

How have you adjusted to your wife being diagnosed with MS?

It was a shock to hear the news, and at the same time we both felt alone, alone in the fact that we didn’t know anything about the condition. I was 42 when all this started and we went through all the anger, frustration and upset but we weren’t going to give in and I started to help Bev in my usual positive way. In turn, Bev taught me to cook. In fact, we are a team then and we still are and I am extremely proud of us both.

What about family life?

We have one daughter who is 26 and married to another John, who is known affectionately to us as the Golden Child!

Are you a carer for your wife? If so, what does this involve?

I am the main carer for Bev and one carer comes in the morning to help us. I get up every morning at 6 am and prepare all my morning chores and make sure we are ready for the start of the day. Caring for Bev involves me using a hoist to transfer her and getting her in to the level access shower. Bev is then helped to get dressed and is transferred into the riser recliner chair in the front room. Bev has her breakfast and I give her the ipad – all our Christmas shopping has been done online, a massive help. I come home for lunch and then leave again for the office and normally I can be back home for just after 4.30pm.

Would you say that this cook book is your way of escaping the mental and emotional strain of being a carer?

For me, the Ice Cold Kitchen is my haven. I know when I leave the office, I can chill out by working my magic and creating meals and breads. Everything we eat in our home is cooked or baked from fresh and I have just baked our Christmas cake. I also know that when I am around, Bev is more relaxed and this makes me feel relaxed too. I tend to see my glass as half full and am always smiling – I’m known for it! I am a firm believer we can achieve anything in life. Putting a positive spin on any situation if possible always helps to keep us moving forward.

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Nov 19 2013
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Daily Life

A Sense of Disconnection

life without the internetOh my days. Who knew that being with a much-reduced internet connection over the last week could be quite so traumatic?

The Teenager has gone through a whole range of emotions, from full-blown panic (‘how will I survive? I am utterly, totally disconnected’) to deep depression (‘wake me up when it’s over’).

I helpfully suggested he read a book or I don’t know, make something.

I was smartly told that whilst that may be acceptable for old people like me who went through their teenage years *gasp* without the internet, he’d rather sit in McDonalds like a saddo all day where they at least have free wifi, thank you very much.

Anyway, we’re back on track and a sense of normality has returned to our little cottage (it won’t last). In other news over this quiet week:

  • I had a letter inviting me to my graduation ceremony next May and did I want to hire a cap and gown? Which means my degree results must be on their way, eek.
  • The Teenager gave up his paper round. Enough said. You really don’t want to hear about it. Or the specially-extended lecture I gave him.
  • My smartphone (so badly-named) decided to get in on the internet act and freeze at inopportune moments, leading to a telling-off at work. Boss – ‘oi, get off your phone’. Me -‘ I’m not on it, I’m waiting for it to unfreeze’. Boss – ‘right, no more coffee or chocolate at break times’. Me ‘be right with you, boss.’ To show how sorry I was, when the phone worked I sent him pictures of cats doing funny things as that always cheers him up.
  • All the crafty bits I ordered for Christmas have arrived – candle wicks, wax pellets, craft knife, cutting mat, white card, Christmas essential oil, modelling clay and star-shaped cookie cutters. Much hilarity will ensue.
  • The cat kindly left a birds head outside my back door. Which I stepped on.

While we have been surviving without much internet, my mum (62 years old and a great-grandmother) whizzed ahead of us.

In between Skyping her sister in Scotland, she upgraded her phone from a brick-like Nokia to a Samsung all-singing, all-dancing model. The Teenager is quietly impressed, if a little jealous….

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Nov 11 2013
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Daily Life

S’Magical…

Christmas CtI am one present away from completing my Christmas shopping.

Before you start pelting me with mince pies (or Terry’s Chocolate Oranges – yes please), I can explain, honestly.

Organising Christmas for the last couple of years has been a bit of a nightmare, so this year I was determined to be calm, cool and collected.

I drew up lists, scoured the internet then decided it’d be far easier just to give everyone a onesie. Present list – big tick. The Teenager could have a Superman one, The Boss could have a Homer Simpson one and I’m guessing they make them for cats now too.

After running the idea past The Teenager (who looked at me in horror, told me he wouldn’t be seen dead in an oversized babygro and turned his music up even louder) it was back to the drawing board.

So now I have a whole stack of carefully-chosen presents, reams of wrapping paper, ribbon and gift tags. All waiting for that advert-inspired magical evening where I will settle myself down with a glass of mulled wine, Christmas carols playing in the soft-focus background and fight with the sticky tape and try to catch the cat when she runs off with the ribbon.

The internet has been a blessing, although I’m not sure my postman sees it that way, as he struggles up the path day after day. I’ve ordered everything from it – right down to a reel of invisible thread to hang my home-made stars with. Yup, getting the shopping out the way has given me time to pick up my glue gun. I’m going to get crafty this year. My Christmas wreath was a bit of a disaster (Pinterest made it look so easy, bah), but you can’t go wrong with stars. Can you?

So this year I won’t be barging my way through crowds. I couldn’t even if I wanted to. I’d slip unnoticed to the ground, trampled by hordes of eager shoppers poking each other in the eye with jumbo rolls of wrapping paper.

For people with MS, Christmas is a society-endorsed period of doing what I am an expert at – dozing off on the sofa in front of rubbish telly – and I intend to make the most of it.

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Nov 09 2013
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Daily Life

We’re Bang On Trend

socialising liteI’m chuffed to share with you that something most of us with MS have been doing, like forever,  has now been designated a zetigeisty trend – socialising lite.

Driven by impossibly busy New Yorkers/Londoners, this involves combining two or three activities to fit more into your life.

Or in our case, to ensure that we can still keep up with our friends/hobbies/interests despite fatigue and other pesky physical symptoms getting in our way.

The secret of socialising lite is to make your free time work for you. For people with MS, this translates as making those rare pockets of energy work harder for us. Even before I knew this was an actual trend (ooh, get me, chuck me a copy of Elle), I’d already started to do this – like combining catching up with a good friend and a shopping trip to town or asking my mum to help me in the garden, having a natter and putting the world to rights over a glass of wine afterwards. Killing two birds with one stone, but in a good way.

I miss doing what I used to do spontaneously, so this is a great compromise. Plus there’s an added bonus of still feeling that I’m part of life, of society. Spending so much time at home has made me more aware that I need to get out, even just for a short while.

A more extreme form of socialising-lite is time-capping friends, which at first glance might seem rude, but with all of us juggling busier lives it’s much more acceptable. Long gone are the days I’d go out for whole evenings, so rather than become a hermit (tempting), I say to my friends that I’d really love to see them, so how about we try that new wine bar/cafe/restaurant/exhibition and catch up for an hour? I get to see a good friend and try a new experience.

Time-capping doesn’t mean I don’t enjoy spending time with my friends, it just means that I don’t want to wait for both of us to be free for a couple of hours/when I’ve got energy/when I’m not pinned to the sofa with fatigue.

My next plan is to combine exercise and friends. So if anyone would like to pop over and join me in staring at my kettlebell (aka the doorstop), willing it to move by telekinesis, you’re more than welcome. You bring the biscuits, I’ll put the kettle on…

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Sep 21 2013
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Daily Life

Scream If You Wanna Go Faster

fairgroundA lot of people say living with MS is like being on a roller coaster. I’d go further – MS is one big scary fairground.

Ladies and Gentlemen, roll up for a thrilling ride on the MS Ghost Train! Prepare to feel your heart in your mouth as you hurtle round sharp corners, never knowing quite what devilish surprise will jump out at you next.

This train won’t slow down and there’s plenty of shocks galore. Hold on tight! You might be sitting with a friend, but it’s dark and you won’t always be able to see them.

Or try the dodgems! C’mon, you’re good at this already, bumping in to other people, never going in a straight line. You’re teeth might be rattling, but it’s all good fun, right?

Too much for you? Try something gentler. How about a ride on the merry-go-round? Choose your horse wisely though, you’ll be on it for a while, going round and round and round in circles. Hey, just like your life right now! Please do not attempt to dismount while the ride is in motion, we cannot be held responsible.

Now enter the famous Hall of Mirrors! Fall about laughing as you point at yourself! No, not that mirror, the next one. Yes, that’s really you! Well, you’ve certainly put on weight, haven’t you and it’s not all down to the candyfloss.

Or try the grabber machine – you know exactly what this is like! Go on, steer the metal hand, drop it down and grab that teddy. Oh bad luck, you just can’t seem to get a grip on it, eh? Better luck next time!

Why not round off a trip to the MS Fairground with a visit to our resident clairvoyant, Madame ZsaaaBlanko? Tenth generation fortune teller! Mind the curtain and take a seat. She’ll look in to your future right before your very eyes. Everything you ever wanted to know but were too afraid to ask.

Oh. There seems to be a bit of a problem. Your future seems to be rather uncertain at the moment, but Madame can tell you you’ll  shortly be taking a trip and will come into some money. And there’s someone with the initial A who’s really important to you. Or is it D? Maybe S.

Thank you for visiting us. The exit is on the left. What’s that? You can’t leave?

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