Monthly Archives: June 2013

Jun 20 2013
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Symptoms and Treatment

A Cure At Any Cost?

cureOf all the money raised for medical research in the UK, only 6% will go towards disease management or quality of life issues, the rest towards funding work to find cures.

A cure for MS is of course the holy grail but with 100,000 people currently living with MS here in the UK, is it time we demanded a larger slice of the funding pie to research the problems and finding solutions for living with MS day-to-day?

Simon Denegri recently wrote a brilliant blog post about this subject (click here to read more), suggesting that our medical research economy seems to be fuelled by ‘test-tosterone’.

He raises dementia as a case in point, ‘we admonish ourselves for the lack of progress in discovering viable treatments over the last 20 years, but…just as troublesome is that there has not been the step change in how we care for people with dementia in that time either. Too many people continue to end their days institutionalised, pumped full of anti-psychotics and ‘taken care of’ by poorly trained staff.’

How does this translate to the MS community? Without a doubt, we are living in times of enormous strides in our understanding and treatment of MS which have greatly enhanced our quality of life. Yet we are also living through a period of great upheaval and fear, with Disability Living Allowance being replaced by the Personal Independence Payment and  a growing media backlash against anyone with a disability.

Disease modifying treatment is wonderful. If you have relapsing remitting MS. For those with primary progressive or secondary progressive MS, treatment options are limited. Should more funds be diverted to research how we can live to the best of our abilities with MS? How we can keep more people with MS in employment for longer? How we could offer everyone with MS the opportunity to receive counselling to adjust to a life with MS, if needed?

A cure for MS would of course obliterate these problems, but how many of us would be cured? How far back can we hope to reverse the damage? In the meantime, we live with the symptoms, the stigma, the reduced life opportunities. As Simon Denegri states, ‘Fact is, you can have a hard time living with disease in the UK. You can also have a hard time dying from it too. Such is our obsession – our hyped-up expectation – that we will be able to treat ourselves out of existence.’

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Jun 18 2013
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Emotions

Fake It To Make It

fake it to make itYou know how we’ve been told for years to think positively? Well, the experts are now telling us we’ve been doing it all wrong. Yup, no amount of chanting ‘I am worthy’ in front of the mirror each morning will help boost our self-esteem.

And repeating ‘nothing tastes as good as skinny feels’ will not encourage me to relinquish my undying devotion to Häagen-Dazs.

Apparently, we need to fake it to make it, acting as if we already are what we aspire to be, so I should actively push away the ice cream as if I don’t like it.

I tried this last night, taking the enticing tub from the freezer, setting it on the table and then pushing it away, wagging a finger at it, saying ‘naughty ice cream, naughty’.

After I’d finished the whole tub (of course), I looked at the other tips and hints. If you’re feeling down, smile, you’ll feel instantly happier. If you make a fist, you feel more determined. If you strike a powerful pose, you’ll increase your self-esteem. Don’t do what I did though and try them all at the same time – you’ll look like a spaced-out bag-snatcher.

I don’t give up easily, so I gave it another go, concentrating first on the smiling exercise. Whenever I felt a little down, I smiled. And do you know what? I actually think it worked. It’s hard to think negatively when you’re beaming away. Although when I found a half-eaten, two week old sandwich in The Teenager’s bedroom, the smile was more like a grimace.

Moving on, how many of us slump and slouch? I know I do. So I pushed my shoulders back and stood tall, and yes, I felt better. Odd. Making a fist to feel more determined feels a little strange, but I see Andy Murray doing it all the time, so it must work.

There’s a lot to be said for faking positive emotions but I’m not sure if it will become a new habit for me just yet. It’ll have to join The List, along with drinking more water, picking up my kettlebell without keeling over and learning how to cook an artichoke. Meh. Smile!

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Jun 16 2013
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Daily Life

In It Together

MSThe MS Society held a brilliant event in Swansea yesterday, ‘Living with MS’, which I persuaded my long-suffering boss to drive me to with the lure of Welsh cakes and a nice lunch.

The event was interesting and engaging and was also a celebration of how far we have come in our understanding and treatment of MS since the Society’s inaugural meeting sixty years ago.

To put this into perspective, just twenty years ago there were no disease modifying treatments for MS. Today, there are seven, with four more on the horizon.

The talks and flow of information at the event were fantastic, but what I enjoyed more than anything was the support and sense of belonging. MS can be a very isolating illness affecting every area of life. As a single parent (yup, get the violin out), there are long evenings when I am alone with my fears and jumbled thoughts, without someone to rein me in and help keep things on an even keel.

To be surrounded by other people living with MS is comforting. I feel accepted and less alone. Sharing stories and laughing with each other in the face of MS is balm for the soul.

I went to a workshop about ‘Looking after yourself’. Listening to other people speak reassured me that my thoughts and fears are not unique to me – we all struggle in some way or another, whether we are newly-diagnosed or have lived with MS for decades.

Lunch was an opportunity to catch up with old friends and spill coffee down my top, just in time to sit on a question and answer panel about family life with MS. As this was at the end of a long day, I was ever-so-slightly tired and I’m sure I rambled incoherently about MS and The Teenager and how we had adjusted to life with MS.

We rounded the day off with donuts and more coffee before heading home. I took away the thought that even though each of us with MS copes in our own way, we all know we are in it together.

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Jun 14 2013
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Work and Studying

Job Hunting Just Got Uglier…

ugly bagOh marvelous. As if job hunting with a disability in a recession isn’t hard enough, beautifulpeople.com launched their own recruitment service last month, an offshoot of their dating agency for people who are beautiful and (boy, do they) know it. Really.

40,000 members have already signed up and last week 60 employers posted vacancies in a single 48-hour period. What hope is there for the rest of us? I may as well rip up my CV, stick a paper bag over my head and find a job peeling sacks of potatoes in my local chip shop.

There is an interesting interview with the Beautiful Fran, a member who claims ‘a slick of tinted moisturiser and some light eye make-up are all the products I need to ensure I look beautiful.’ Well, I’ve had a look at her photo and I’ve seen less make-up on a drag queen, but who am I to judge?

Fran boldly states that ‘looks now play a part in every profession.’ A sweeping, untrue comment, but then this is the same woman who also says that ‘it’s a fact that women judge each other on their appearance.’ Oh really? You might do that, love, but in the real world, it’s a fact that most of us quite simply don’t.

What really annoys me though is when she says, ‘…women were obviously jealous of me (in an office) and they would say nasty things behind my back – and even sometimes to my face.’ In my humble opinion, I would say this happened more because of her arrogant attitude and the way she interacts with other women rather than her perceived beauty. If she thinks that’s discrimination, what on earth is she doing joining a website that proudly and blatantly discriminates? Workplace bullying is a serious problem and having been through it myself for a year, I find it insulting that she even mentions this.

I don’t think I’ve been hit too badly with the ugly stick, but when I go for job interviews I hope I can convey a passion and knowledge for the role rather than worrying if I’ve got hair on my lip gloss. Looks fade but insight and wisdom only grow over the years. Fran’s got an answer to this though. She’s considering Botox…

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Jun 12 2013
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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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