So far I love it - after all my prevaricating. I am eating my words.
I am a tad wary as I have a tendency to get the wrong end of the stick on stuff like this and hope my blogging buddies would tell me if that is the case. If my Tweets (which for me is like learning a new language) are wildly inappropriate, please don't be shy. Let me know to save my blushes.
I have a little padlock beside my Tweets and don't see them on anyone elses and wonder if I should remove that aspect as I think it means people have to ask to follow me?
I felt quite brave this evening and tweeted bendygirl who doesn't follow me humph (BG - if you have time to read my dribble here,I understand you are a very very busy Bendy Girl who is busy campaigning and boy I am in awe of how you network)
I also tweeted a fellow bendy, a complete stranger, who had partially dislocated her shoulder and needed sympathy, I tweeted sympathy. This is the good side of the virtual world. Being able to send sympathy .....
I know its the middle of the night here and not there but I loved it that a fellow EDSer (you know who you are) tweeted, I replied and she emailed. It was 'cool'. I have never in my 46 years ever said something was cool but it truly was. The whole interaction made me smile. Before that virtual moment happened I was feeling just a little sorry for myself as unable to sleep due to mind blowing spasms. Still spasming but smiling at the same time. Cool.
Now all I need is a swanky phone and I could tweet away to my hearts content. That won't happen as we cannot afford the swanky phone thing and perhaps it a good thing as I can see why Tweeting can be compulsive. So for now I am a happy bunny, being able to Tweet when have access to Laptop - especially to my wonderfully supportive Tasmanian bloggy
I must try to work out a way to get some sleep as step grandson is coming to stay tomorrow. I have no spoons. Will have ask for help and if you know me at all you will know that me and asking for help is complicated. The stress of involving extended family in my life is complicated.
Daughter with EDS screamed in pain this evening, she panicked. I felt for her so. I hope I did the right thing by her. Encouraged her to breath calmly, drink a glass of water, take pain relief (that is another story as she is fighting the EDS so, right now). I did more to try and help but one bendy helping another bendy is tough going. She says I am the only person she trusts to massage her and not cause her more pain. We talk of fear surrounding pain.
I cannot tell her that massaging her causes me such pain. I hide it and go to the kitchen and take strong pain relief. Telling her gently it will pass. It doesn't though does it in reality. EDS is a cruel condition.
So for distraction and company I Tweeted as well as reading blogs - so thank you virtual world for helping me when I have done everything to help myself and still can't stand the pain.
Being able to see good when I could easily just cry frankly, has got to be a positive action?
So today I would like to say a big thank you to Veronica from sleeplessnights for my sleepy smiles and the sharing of 'Good Things'.
A small personal goal would be to try and work out how to put a link on this blog to Tweety world.
A bigger personal goal is to find some spoons for step grandson. DLA unfortunately does not extend to paying for a play scheme when one is too cripped up to be the perfect grandmother. So instead I must ask for help and in the meantime tomorrow I think there will be a lot of stories read and hopefully this pain will pass.
I like to finish on a positive note - if anyone reading this has a physical pain, you have my sympathy and sincere wish that it abates asap. If you have emotional upset, I hope that whatever the cause, you find the answer to ease a troubled mind. If you have both - please accept a gentle virtual hug.
I send a special thought to my favourite australian blogger and hope that bob has bobbed right off today.
7 comments:
It was good to get to email with you this morning (night for you!).
What's your twitter name? Tweet me again & say it's Achelois so I'll spot it please? You'll love twitter once you get into it, it's so fabulous for us-so glad you're joining. There's a list on my profile with loads of bendy people on it, not just EDS'ers but it also includes OI ppl and those with EB (diff collagen disorder)
love BG Xx
Hi Veronica, i am sure your day time email made much more sense than my middle of the night one! Its just good that I can say to you something hurts and I know you won't judge me, etc. Well I guess you might but you are too polite to say so lol.
BG - will do that thing on Twitter. Its good for my tendency to blab on and on the limited word count. I am thinking of changing the twitter name to achelois although it says that beside my username? I am still thinking about that option. Thank you for the comment. I have trawled those you follow etc. but until I get used to it it feels a bit stalker like. You know me i worry about the etiquette of these things. The trouble with doing things from the comfort of ones own home is one has no facial feedback via expressions body language etc if one is going about it all wrong. I think I just worry though as I was like that about blogging for ages until enough people told me just to blog when I felt like it and how it felt right.
Yes get rid of the lock :) it means your tweets are protected and that is a bit of a pain.
just go into settings and uncheck the box next to tweet privacy. you can find the settings underneath your username on the far right hand side of the tweet page. at the top :) I like your twitter name
your a clever bunny achelois, im still figuring blogger out!!! my minds a mess at present, but good luck. xxxx
Thanks so much for the shout out it means more than I can put into words. I hope the same for you and that you get a break from that damn pain. I still hope one day we'll be sitting back, glass of vino in hand, on the same porch. Fingers crossed we'll get there one day.
I have no idea about twitter etiquette or blog etiquette, or FB or... I say just go for it. It took me ages to comment on other blogs, tweets etc and shock horror email a complete stranger just because I like their blog. It was scary the first time. But you soon realise that people love comments and contact. People love the whole community aspect of social media.
Twitter I find hard as there are not enough characters for my rambling, but I'm getting there and you will too.:)
I just wanted to stop by and say thank you for commenting on my blog! I am really starting to look into the EDS community and not sure where to start. I appreciate hearing that I really need to stand up for myself, especially during childbirth. Thank you again! Also, I will look you up on twitter!!!
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