The power of the internet for AS Networks

Well I thought seeing as this is going to be my last post now for the foreseeable future, it should be about what other resources are out there for anyone looking for someone to talk to about their AS, and this is something I have only discovered since I started blogging.

I said in a post ages ago that one of the most significant things in my AS journey was when I met other people with AS on my first course in the hospital in Bath. The only people who really get how hard it is to live with AS are other people who have AS, and I felt so normal among them, as everyone did odd neck stretches, and couldn’t get up from chairs without grabbing hold of something to the help…

But anyway when I started blogging, I searched AS and Ankylosing Spondylitis on Twitter and then followed anyone else who said they had it and got into a network of several people who speak regularly about their experience. So here’s the main people on twitter that I know.

Matt Lemon @tvi675 – shares what others are writhing about AS via twitter

Gillian Eames @Gillianeames – just seems to have boundless energy to support others with AS even though I know she has her own problems. She had been networking with two of the last people on my AS course and persuaded them to go to Bath hospital

Then there’s Cookie who is developing the Face of AS website and connecting with hundreds of people @FacesOfAS

I am also so grateful for Joyce Lameire @JLameire who has been a fabulous support of my blog, and told me about Cookie and the Faces of AS. Joyce also runs a blog called Anky Spon What

And NASS are on twitter @NASSexercise and @NASSdirector

Plus loads more, take a sneak peek at Matt Lemon’s Tweet history then you’ll see everyone out there who is talking about AS.

It was only after going into hospital in Bath last December though that I discovered just how much of a positive impact online networking can have for people with AS, having met the two people who Gillian had introduced to the hospital. They told me about the Facebook groups. There are two I am connected into, but there are probably more. Although I don’t talk on them, I am too busy, but when I was reading a new post on the Faces of AS webpage someone was talking about meeting another person with AS for the first time. He’d met this friend in an online forum and then the other guy had flown over to America to meet face to face after a couple of years, and it was something really empowering for the man involved to have someone to talk about his AS it had changed his life.

So here’s the Facebook groups I know of;

Living with Ankylosing Spondylitis  https://www.facebook.com/groups/6856176878/

Ankylosing Spondylitis https://www.facebook.com/groups/2246013961/

If you are looking for someone to talk to about what’s going on for you, someone who will really understand, then I’d connect into these places, they are so valuable.

But for me, for now, I am going to sign off this blog and leave it to rest. Thank you to everyone who has contacted me over the months I have been posting, I have really appreciated the feedback, and I am glad my story has helped others too. It’s kind of sad to stop… Wiping a tear away :’) But this is now one thing off the weight bearing down on my fatigue exhausted brain…

Thank you all.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

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About janelark

a writer of authentic, passionate and emotional love stories
This entry was posted in Ankylosing Spondylitis, Health and tagged , , , , , , , , , , , , , , , , . Bookmark the permalink.

5 Responses to The power of the internet for AS Networks

  1. Thanks for your kind words Jane. I will miss your blogging, but your books are just as good.

  2. su-anne says:

    Hi Jane

    I often think of you, and wonder how you are doing. Wont you drop us all a line – and let us know if you are coping and what is happening

    Su-anne

    • janelark says:

      🙂 I have had a difficult year to say the least, but am a lot better now. I have more stories I could post on here, hoping to do it over Christmas, but I wont make any promises, basically I was too overloaded and had a complete fatigue melt down, which I can laugh at now it has passed but, boy, it was not pleasant. I miss posting here regularly though because there used to be so much conversation. I hope you’re well Su-anne?

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