Category Archives: Daily Life

Caring For The Carers

Carers WeekThere are 6.5 million carers in the UK and 6,000 people take on a new caring role every single day. Findings from the report, Prepared to Care? show that vital support is not being made available to new carers from the outset.

My experience as an MS support volunteer has brought me into contact with many people who care for someone with MS. Their stories are all different, but there is one recurring theme – their isolation and lack of joined-up support. They feel they have to fight their way through a complex, bewildering system and are unable to access all the services they need to support them in their role.

81% of carers in the report felt unprepared for the emotional impact of caring and 71% were unprepared for the change in relationship with the person they care for. I have a friend who often feels that the entire focus of support is for his partner, who has primary progressive MS that has left her housebound. They live in purpose-built accommodation, which although ideal for his partner, is unsuitable for him as it is far from transport links and shops.

The only respite he has is when a paid carer comes in for two hours a day, but as he explained, by the time he walks to the bus stop and goes to town, he has to turn round and go home again. He has also had to give up work, as 45% of carers find they have to do to continue in their role as a carer. He now leads a very lonely, isolated life and although he adores his partner, he feels increasingly frustrated.

92% of carers feel more stressed because of their caring role, a damning statistic, and one that can only be reduced by providing good quality practical and emotional support. ‘Prepared to Care’ recommends that there should be better public understanding and recognition of carers and that they should have access to information and the right support from the very beginning.

Carers are the forgotten heroes. Perhaps we feel it will never happen to us, but anyone can become a carer and most of us will not be prepared.

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Party Pooper

you are invitedI have two family gatherings in the next couple of days. I love my family to pieces and adore spending time with them. That’s not the problem. It’s the uninvited guest who always tags along with me that’s giving me palpitations.

MS hisses in my ear, ‘you can’t go, you’ll be too tired, too hot, too tingly, too boring – why don’t you just go back to your sofa, have a nice lie down.’

I am an awkward guest now, like the Mad Aunt everyone knows they have to invite but aren’t quite sure what to do with. Chairs and parasols are rearranged in the garden thanks to heat intolerance, guests look away politely as I spill my drink thanks to dodgy hands and my jokes fall flat as I suddenly can’t remember all-important punchlines thanks to cog fog.

Don’t get me wrong, my family are wonderful, it’s just that MS has driven an invisible wedge between us. Sitting in a dark, shady corner watching everyone else bask in the sun is a metaphor for life with MS.

So, I have some pre-prepared answers ready to lessen the awkwardness and make me appear slightly less tragic:

‘You keep yawning, are we keeping you up?’

– ‘Hell no, was out last night dancing on the tables, fabulous time, wasn’t back til 2 am’

‘Hey, come out into the sun!!’

– ‘S’ok, Vogue said pale is the new tan’

‘Whoops, careful’

– ‘No worries, it takes skill you know, to trip over a flat surface and I’m the champion’

Good plan, no? My family all know I have MS but I don’t really want to belabour the point, and as most of us with MS know, trying to describe the symptoms is not for party-talk, it’s a full-blown maudlin evening over wine, Pringles, low-burning candles and Edith Piaf in the background. And anyway, I feel awkward enough without wanting everyone else to feel the same way too.

So I will try my hardest. I will take part in pass-the-new-baby-around, but perhaps pass him on a little quicker than the others. I will grip my wine glass with two hands, as if I am drinking from a chalice. I will pinch some ice cubes and surreptitiously pop them down my top. Above all, I will attempt to leave my uninvited guest at the door, just for a while….

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Driving Miss Crazy

Cardiff-20130603-00198The day I was diagnosed with MS I was instructed to inform the Driver and Vehicle Licensing Agency (DVLA) toot suite, on pain of flogging or death. Well, no, not really, but it was a pretty stern diktat.

I duly found my way through their labyrinth website, downloaded the forms and sent them off. A year passed and I was confident they had forgotten all about me and had guessed I was still a safe driver. I had even taken an ice and snow driving course when I lived in Norway, a terrifying day where I drove down a vertical hill covered in oil to simulate the experience.

The other week though I received a letter with the words, ‘the Medical Advisor has recommended that your current licence is withdrawn…and a new licence will be issued to you, which will be only be valid for 3 years.’ Bearing in mind my previous licence was valid until well into the 2040’s, I was a bit upset.

For unscientific research purposes, I asked the Twittersphere if this was a standard procedure. Apparently it is. Which strikes me as rather odd and arbitrary. If only the powers that be who will be overseeing the change from Disability Living Allowance (DLA) to the Personal Independence Payment (PIP) could also accept that MS is a degenerative, progressive illness with no cure. Why make us re-prove that we have MS and it doesn’t get better? I doubt that anyone with MS who has a 3 year license will suddenly be deemed ‘cured’ and re-issued with a longer licence.

To rub salt into the wound, I am also now banned from driving 3.5 – 7.5 tonne vehicles and minibuses (not for hire or reward), for medical reasons. Not that I have any intention of doing so, but it would have been nice to have had the choice, just in case I wake  up one day and think, ‘do you know what, I really feel like bombing down the motorway in a big truck today.’ As you do.

So now my licence lasts until 2016 at which point they will review my case. I’m off out now for a little tootle in the car. The Thermos is ready, the tartan blanket  is packed and I have a tin of pear drops in the glove compartment. Just to be on the safe side.

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Mixing With The Literati…

booksWith Bill Clinton once describing it as the ‘Woodstock of the mind’, I was over-excited to visit the Hay-on-Wye Book Festival on Tuesday.

Months ago, a friend and I had booked tickets for our kids to see one of their favourite authors and so we headed up through the damp Welsh countryside to the London literary outpost for a day of intellectual thought, musings and trying to grab the last seat in the cafe as we sheltered from the thundering rain.

The Teenager was suitably impressed that his talk would be held in the Google-sponsored tent (result) and at home later told me in reverential, hushed tones that the author had been ‘mint’ and had inspired him to read more (another result).

Anyway, we wandered around and settled down in the tented area for a picnic lunch, eschewing the over-priced venison burgers and alfalfa salad. I was dismayed to note that almost everyone, and I really do mean everyone, was in Hunter wellies and green wax jackets. My own boots were letting in water and squelched every time I walked.

Children with long, wild hair were happily munching on celery sticks and holding onto their crowns, made in the kids craft tent. Our kids, on the other hand, made a nuisance of themselves by pilfering the free cheese samples, going back again and again, claiming they needed yet another freebie for various fictional elderly relatives.

With two of our kids safely offloaded into the Google tent, we had a coffee, having sneaked into the ‘Friends’ tent. Apparently if you pay £25, you get priority booking and have a special ‘Friends’ queue at each event, a kind of highbrow ‘Fast-Track’ ticket you can buy at amusement parks. ‘Friends’ proudly displayed their special ID badges and elbowed past us at high speed.

It’s suitably apt that Hay is twinned with Timbuktu. It really was an out of the world, strange experience. Apparently the late singer-songwriter Ian Dury rewrote the lyrics to ‘Hit Me With Your Rhythm Stick’ at Hay in one of his last concerts – the famous line reading, ‘From the gardens of Babylon, all the way to lovely Hay.’ We ended our great day with chips from the chippy made  famous by the DJ Chris Evans, who marveled at the fact they use a spray gun to slather the chips in vinegar. Who says we ain’t highbrow?

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Definitely Not Britain’s Next Top Model

next top modelI hate having my photograph taken. I’m always the one at social gatherings who pulls funny faces or hides behind the nearest pillar (see my classic  fish-face, left<-).

So it was a strange experience to be photographed on the steps of the Welsh Assembly building on a sunny Bank Holiday Saturday, being gawped at by hordes of passers-by.

The MS Society is writing up my experiences in work for their magazine and unfortunately they want my mug-shot next to the article. There was no escaping it. The best thing about the day was the photographer, Eiona, a Twitter friend I hadn’t yet met in the real world. The worst thing was my round face. The Teenager doesn’t call me The Chubster for nothing. Personally, I blame the steroids.

Anyway, we had lunch and a natter first plus a cheeky glass of wine to steady the nerves. I badgered  Eiona to pull out every Photoshop trick in the book – make me drop two three stone, sculpt some cheekbones, add eyeliner (dodgy hands won’t let me anywhere near the stuff) and generally make me into a passable Kate Moss lookalike.

There was no putting it off any longer. Luckily I only had to stand on the steps, looking into the distance. Thinking serious thoughts (how can I get rid of the slugs in my garden?) I struck a pose. People stared. They were no doubt thinking, ‘who on earth is that chubby-faced woman being photographed – didn’t she play a corpse in Casualty?’

It actually went very well. I had chosen my Sara Lund jumper to wear, hoping to channel some Nordic gloominess and before long. it was a wrap and I was back home, making the most of the peace and quiet as The Teenager was away. After dinner, I noticed my exercise kettlebell staring at me accusingly. It does make a lovely door stop, but maybe I should pick the thing up now and again…

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