Sunday, December 22, 2013

Hmmmm empathy v's sympathy. Having been in receipt of sympathy, I can safely say it generally makes me feel worse. For example, I have been on the receiving end of these comments, and several more that fall somewhere in-between.....

'Ohh you have MS? That's awful' .....sympathetic head tilt....'I know someone who had that. They died.' 

'I know someone who had MS. They were fine. Not like you. It must be hard.'

Aaaarrrrggghhhh! Everybody dies! There's not necessarily a direct correlation between death and MS. You may have a slightly shortened life span, but as you don't know when your expiry date is anyway, there's no point stressing about that!

With over 50 symptoms of varying severity, it stands to reason that no two people with MS are the same. Hence why it has been coined the 'snowflake' disease. Each and every one of us are different.

For clarity I include dictionary definitions;

Empathy: the ability to share someone else's feelings or experiences by imagining what it would be like to be in their situation.

Sympathy: ( an expression of ) understanding and care for someone else's suffering.

Now, to me, sympathy sounds one step removed, and not truly felt, or meant. Meer lip service. And I get that in spades. Trouble is though, with sympathy, there is nothing to back it up. No action. The purpose of the sympathy seems to be that it makes the one offering it feel better. 

Empathy goes that one step further, and if you happen to be on the receiving end, you no longer feel so alone. And as such you feel you matter. And this makes your load lighter.

Let us not forget that MS cannot be fixed. And a million other situations cannot be fixed either. But they can be made more bearable, if a connection is made. It's not about fixing the unfixable, it's about connecting, and being sincerely and genuinely present. 

Can you be that person? Make the connection. Take the time. REALLY be there for someone.
Watch this. It clearly defines the difference between empathy and sympathy with humour....

For mobile viewers, click HERE

Friday, December 13, 2013

Today I saw a video that I want to share with you all because it resonates with me so very much. A different illness, but the lost feeling of being carefree is so very similar. To lose being carefree really takes it's toll. It is a feeling I have lost. I had not been able to vocalise the feeling, or give it gravitas.

I felt I had lost or misplaced a part of me, but I wasn't sure what it was. At least I now know what it is that I am missing. Or rather what it is that I'm carrying. In a sack. Like a dead weight that I have to carry everywhere. That I can never put down or forget. And sometimes, it prevents me from moving, breathing or feeling. Numb. It takes my breath away, and leaves me saddened.

This morning, I woke early. And as I lie there in the quiet, I felt good. I had not moved, so I could forget, albeit briefly, that my physical self was so very restricted. So whilst the house slowly began to stir, I allowed myself to dream about what I'd do if I was not restricted....

Well, the little man and I get dressed up against the cold, and we go to the park. We walk down to the horses at the end of the park and exchange a hello. We leave with hands smelling of horses, and with the feeling of them on our palms and fingers. A smell I love. A smell of my youthful, carefree days.

Back home, and I carry the little man up the stairs to bed for his morning nap. I gather the gifts that are piled in our bedroom, and carry them downstairs to begin a wrapping marathon. Writing tags, cutting paper and sellotape, the pile slowly shrinks. And I slowly begin to feel I'm winning.

The little man wakes, and I strap him in to the car, and go to a pub to meet friends for lunch.

...And that is how I spend my dreamtime...

I know how to dream don't I? The every day, normal things. They are sorely missed from my days. Absent. And the hole they have left, and the sack I carry is weighted with their loss. And to replace the loss of the normal, is a heavyhearted anxiousness. I want so much to put the sack down.

Be carefree. Not careless. But carefree.

For mobile viewers click HERE.

Saturday, December 7, 2013

Since my last post, I've been thinking about the facts and statistics regarding disabled people here in the UK. Here are some of my findings.....

* There are 9.4 million disabled people in England, which equates to 18% of our population.

* 45% are males. 55% are female.

census 2011

* The prevalence of disability rises with age - 1 in 20 children are disabled, compared with 1 in 5 of working age adults, and almost 1 in 2 over state pension age.

Office for Disability Issues updated Department of Work and Pensions Estimates based on Family Resources survey 2009/2010

* Only 17% of disabled people were born with disabilities. The majority acquire their disability during their working lives.

*Less than 8% of disabled people use wheelchairs. The majority of impairments are not visible.

* People are more likely to become disabled if they have a low income, are out of work or have a low educational qualification.

Papworth Trust disability facts and figures 2010.

MMMMmmmm and not for the not so factual bits.... these bits are just shyte...

* 38% of people believe disabled people are a burden on society.

* 28%of people believe there is ill feeling around the perceived extra support given to disabled people.

I would guess that the same 28% read The Daily Mail.....

For mobile/tablet readers, click HERE.

* 27% of people think disabled people are treated differently because there is a lack of knowledge around disability.

* 65% of people have admitted they avoid disabled people because they don't know how to act around them.

BT - Ready, Willing and Disabled Event 2011

* 180 disability hate crimes are committed every day in this country. EVERY DAY!!!

And that is just a taster of the facts. You can check it out in it's entirety for yourself at :


I've ran out of things to say. Kind of leaves me a bit speechless.

Friday, December 6, 2013

Because Who Is Perfect Anyway?

December 3rd is International Day of Persons with Disabilities. Did you know that? I didn't. I'd never heard of it, and that in itself was interesting. Anyhoo, investigating it, I learned a couple of facts....but before I did, I had to look through google and in doing so, I discovered other irrelevant 'facts'. It was on the first page, but 6th in line behind celebrities birthdays (Amanda Seyfried turned 28). The placing of this day, December 3rd, on google, shows me just how important it is.

*15% of the world's population live with some form of disability. This equates to one billion people. Makes you think, hey?

*Physical, social, economic and attitudinal barriers prevent disabled people participating fully, effectively and equally as members of society.

So, those barriers are preventing 15% of the population from contributing, taking part, and spending. And that makes no sense. Not for the individuals, not for the people and not for the businesses. Let alone the Countries and the World. And that makes no sense.

And what led me to this was my daughter discovering this video.....I want to live in Zurich.

For mobile/tablet viewers, click HERE to view the video.

Because who is perfect anyway?