when is independence not independence?

When it's independence in Multiple Sclerosis!

Last week I was invited to attend a workshop in London on this very topic, the first time I've done anything like this.

The objective of the workshop was to:

• Look at what the concept of independence means to people with MS and their carers 
• Explore how MS health and care services can make achieving independence a core objective, to inform the development of policy and practice recommendations

whiteboard? post-it notes? it's a WORKSHOP!!

All in it was a pretty interesting day and I do enjoy chatting to other people who get what it's all about. Also in attendance was a MS Nurse from the Queen's Medical Centre (she taught me how to inject Rebif back in the day!) and someone from the MS Society.

However, it's grimly ironic to note that of the people with MS at a conference on independence, every one of them came with a carer or companion.

For my part, Mrs D was busy so my Dad came with me. Aside from his help with the cognitive and anxiety-raising issues associated with travelling to London, we took my wheelchair. This was mostly for use in getting around train stations - aside from this we were either getting taxis, and obviously I was rocking my sexy double sticks.

In order for me to be independent enough to attend this event, it took:

• A lift from my father-in-law to and from our local station
• My father attending the event with me and transporting me by wheelchair when necessary 
• First-class train travel both ways - for extra room, and less chance of hassles with dodgy loos or gits in your seat
• Pre-booked assistance with getting the wheelchair on the train - I walked to my seat both journeys but it was meant to help my Dad get the chair on board. AN ASIDE: the assistance was provided in each instance (we've all heard horror stories about assistance simply not turning up) but my Dad is quite impatient so we only used it on our outward journey. Every other time he just made it work.
• Taxis - I don't need the hassle of dealing with the Underground

And that's not counting the rest of my family and all the medical professionals who get me to where I can even consider travelling to the extent which I have this year.

Aside from remaining in employment, concerns about financial security and the wobbly nature of the welfare state, this was one of the main things we talked about at the event - the fact that each of us has a silent majority working behind the scenes to keep us going.

So much for independence! It's like the African proverb, "It takes a village to raise a child".

But in my case, it takes a small army to give me any kind of independence.