Thursday, May 2, 2013

Day 30

 Recap


- Describe your HAWMC experience in one word!

Interesting

Day 29

 Congratulations


- We all know Health Activists are awesome. Share three things you love about yourself, things
you’re great at, or just want to share. Don’t undercut or signpost!

Ah crap. Im not very good at these kind of things. Okay here goes

1. I love my legs. They may be crappy at being legs but they look pretty good.
2. I love my sense of humour
3. I love that Im a pretty nice person (well at least I think so)

Day 28

 Must follow

- Create a must follow list for your community on a single social network. Share your top 5-10

tweeters, blogs, or Facebook pages.

I dont know if I can do this. Im gonna feel bad. I dont have a top 10.

@EverydayAbleism is good on twitter for showing that we're not alone in being treated badly

http://sickgirldiary.tumblr.com/ This girl is amazing. Shes helpful, always ready to answer questions and is understanding and gorgeous

http://theburdensofbeingabadass.tumblr.com/ - Makes having a chronic illness badass and puts a positive spin on things

http://disabledbeauties.tumblr.com/ - Shows that disabled people are still beautiful

http://fogblogger.tumblr.com/ - Blogs about her life with chronic illnesses, answers any questions you have and is also gorgeous

http://ehlersdanloszebra.tumblr.com/ - A blog about everything EDS which makes you think Im not the only one or I thought that was normal.

http://chronicillnesscat.tumblr.com/ Same as the ehlers danlos zebra but for all chronic illnesses.

And loads more. Everyone I follow on twitter and tumblr is amazing

Day 27

 Okay I know its no longer April and I am running very late with these posts but I'll try and finish them now


Titles

- If you wrote a book about your life, your community, your condition, or your Health Activism –
what would you title it? Come up with 5 working titles.

1. Bendy but not broken
2. Flexible living
3. The difficulties of being wheelie awesome
4. Is that supposed to bend like that?
5. Do my supports look big in this?

Friday, April 26, 2013

Day 26

 Pain free pass


- What’s a day that you wish you could have used a pain-free pass (either in the future or the
past)? How would being pain or worry-free impact that day?

Reading a few other peoples posts for today it seems wedding days are the common theme for the pain free pass. To be honest I dont think I can think that far ahead.

If I could have a pain free pass I think I would use it to try things I could never dream of doing. Like running and climbing a mountain and skiing. I would spend the day with my friends & family being active and them not having to worry about whether Im okay and make sure Im not over doing it. Then I'd go out and dance into the early hours of the morning without a care in the world. Not having to worry about whether Im going to crash and burn or fall apart would take the stress out of the day and I could let my hair down and have a laugh. I know I should I probably save my pass for a big day in the future like graduation or wedding but it wouldnt feel like me doing those things if I had a pain free pass. When I graduate I know I have done that despite all my pain and health issues and its what makes graduating even more special. If I ever get married it would be nice to not be in pain on the day but Im going to have to spend the rest of my life with that man pacing and managing my pain so it would feel like a lie if I was healthy on my wedding day.

Day 25

 Learning


- Share something you learned from another Health Activist (that everyone should know!).

Over the years I have learnt

- No one is the same - even people with the same condition suffer from it differently
- Everyone experiences pain differently. What I find unbearable someone may live with daily & vice versa
- What works for one may not work for another
- Doctors are not always right
- Know one knows your body better than you

Tuesday, April 23, 2013

Day 23

 Technology


- Write about how your life would change if there was no social media.

Wow I cant imagine my life without social media. I know it gets slagged off a lot and people complain that kids dont know how to have fun without the internet any more and I agree that childhood is definitely not the same any more but everything has moved on. The people who slag it off seem to forget about the house bound people who still want a social life. Social media is amazing for that. It helps you still feel part of the world when you can't even get out of bed. It means that on days where Im in too much pain to get up and go see friends etc I can still have a chat & a laugh and even better I can do it with people that understand. It makes a massive difference to be able to talk to people who have an understanding of what you are going through. On social media I can celebrate things that seem stupid to my healthy friends, like having enough energy to shave my legs or being able to wear jeans or getting new splints/mobility aids. What healthy teenager is going to congratulate me when I tell them I managed to shave both legs in one go or get excited over wheelchair cushions with me. Without social media I would feel lonely and would be missing out on some amazing friendships.

Day 30

  Recap - Describe your HAWMC experience in one word! Interesting