I totally forgot that it was this weekend that i was heading off to Edinburgh to meet some amazing MSers – Casey and Joan.
You know, I can’t remember how I met these guys? The weird thing about having MS is that although it’s changed my life in ways that I am not overly fond of, it has also been a revelation and I have met some fantastic people that I wouldn’t have met otherwise.
Casey is from Edinburgh and Joan from somewhere in Ireland… sorry Joan! Although I’ve gotten around and do have friends in other places (and countries) I have definitely increased the number dotted about since having this disease. I think one of the biggest contributors to that is volunteering and being part of the Shift.MS network.
Shift is a charity that ensures that people with MS are not lonely, are able to connect with one another (both socially online and also physically in their local community). They aim to empower people with MS to learn more about their disease and become responsible for their own health. As part of the network, I have been involved in setting up social groups in my local community, linking shift with experts in the area and also filming expert reporter videos.
It’s through this network that I’ve mainly met other MSers. A couple of years ago, I headed off to Prague to take part in a conference for people with MS, and there I met MSers from across Europe. Now being part of a European network as well as being quite active in my local community, I definitely know I’m never alone.
Perhaps that’s one of the hardest things with MS… you feel as though the people around you don’t understand. I think that as I have expanded my network of MSers, and I am able to reach out and connect with others who have the disease and can understand both in my local area and also online, I don’t ever feel alone anymore.
That’s one of the reasons that drove me to start this blog – I wanted other people to be able to connect with me and my network, and know that they aren’t alone either. Apparently having a social network and a good support group around you is one of the things that is likely to keep you healthiest. This is on top of the therapies you can take. And you know what… I can well believe it.
Anyway – I haven’t gone to Edinburgh yet, I am writing this just before I go. Plan is that we do some recording whilst we are there. Fingers crossed that it’s a brilliant trip with some brilliant ladies!
Update – I didn’t go… had a bereavement in my family that meant I couldn’t go and see these amazing ladies. We will meet up soon though and I’ll tell you all about it!!
I decided I’d still post this blog though… most of it is still relevant and in the absence of my ability to write about this week’s topic which was going to be ‘Hidden cost of MS’ – this will do for now! As for the next blog, you’ll have to wait until next week!!