Tuesday, 30 April 2013

Thrombosis Support & Lifeblood..... a match made in heaven?

So tomorrow I have a meeting with Lifeblood:The Thrombosis Charity trustees to put forward my Thrombosis Support idea and how we can work together, and convince them to do so hopefully!

As many of you know this blog was set up not only for me to have a little moan about how thrombosis has affected me and my daily dealings with it, but also because I am passionate about creating a support network for those affected by thrombosis. It is one thing to moan about what isn't in place and what is needed, and quite another to actually get off your backside and do something about it- that is what I am trying to do.

I have had big ideas, and high hopes of what Thrombosis Support can be and visions of advertising campaigns in the future and national races in aid of it, and then often feel slightly deflated when I realise I am just one person trying to make something happen. That is one of the reasons that I want to work with Lifeblood, under their umbrella as it where. They are an established charity with I feel a hole, support, that needs to be fronted and filled- I think that is where my ideas come in. I did not realise just how much red tape there is around setting up a charity and I certainly do not often have the patience with form filling in, I think together we can really help others and make a difference. Also one of things I have noticed is that a lot of the fundraising for Lifeblood is done by those who have been affected by Thrombosis, be that have had an episode themselves, know someone who has been or who has sadly lost a loved one. I think to continue the support Lifeblood so desperately needs from the public there needs to be something in place for them, (not to belittle what Lifeblood already do as that is brilliant a too needed).  A support network where they can interact on a number of different levels with people who know what they are going through, where they can offer each other coping methods, advice, support, compassion and friendship. I go from my own experience, I desperately wanted to communicate with someone who understood the emotional side of my thrombosis, and the continuing effects. I remember my consultant writing in a report regarding my PTS and compression stockings that "the patient should wear full length compression stockings from first thing in the morning till last thing at night, even when on holiday and in a hot climate, though a little discomfort may be felt she will soon get used to it." I really wanted to call him and say "you try wearing them all day in a hot climate!" cheek I thought you have no idea. I needed humility and reality about how my life was now going to be. I really hope that that is what I can offer.

The meeting is tomorrow- if any of you have anything you would like me to say from your personal opinion of what is needed, please let me know.

Thanks for reading and if you're able to please help me raise money for Lifeblood The Thrombosis Charity please go to my page and lets hope that Thrombosis Support can become one of their new initiatives!


Help me, help others, help themselves