Sorry I haven’t done a couple of the recent HAWMC posts. I have been ill with a virus (probably) since Thursday, which left me feeling like I was going to pass out most of the time, and caused my heart to flutter and beat oddly. All in all, a horrible few days. This kept me from writing. Even if I had, I’m not sure any of it would have made sense. So I have decided to write briefly on each of the posts that I missed, so that I’m not cheating you out of the full experience. Here we go, get ready for a marathon post:
. Day 25 (April 25) – Learning
Ø Share something you learned from another Health Activist (that everyone should know!).
I think the most important thing that almost every health activist has taught me, is how to have the courage to put a little piece of you out there for the world to see. That in sharing these shards of your being, you can touch other people, teach other people, and show them that it is possible to do the same. That in putting yourself out there it is important to show all sides of the equations. Not just the moments of happiness, the triumphs. But the challenges, the anger, the sadness and bitterness too. The times when the road you’re walking seems to long and to hard, and you just want to dig a deep hole and stay there instead. There isn’t one thing one emotion one time that defines this experience, and if you want to share it, to use it as a tool to help others, you need to be willing to share it all.
. Day 26 (April 26) – Pain-Free Pass
Ø 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?
I wish I could have had a get out of pain free card on my graduation. This was to be a day of celebration. It was to be the last day we would spend together as a year group, as a part of UWC Atlantic College. It was the last day I would spend before my friends, who through the experience of us all being far from home (my school had people from 84 different nationalities) had become like family to me, would be scattered all across the world once more.
It was a day that was filed with happiness, but tinged with the sadness and weight that we would be saying goodbye soon. That we would some people, but when that would be we didn’t know, and that others we would never see, and even if you were not lose it was still saddening, for these people where part of your community, a face that you walked past everyday, but one you would not walk past again.
It would have been great to have a pain free day. To be able to participate in the game of ultimate Frisbee, which many people from both years participated in. To be able to walk with my friends to the local pub, where everyone congregates on the last evening, to spend some quality time together.
But although I was not able to do this, it was still an amazing day, and I have awesome friends, who decided to stay at the school with me instead. But I think any day that I could have pain free, would be an amazing day, no matter what I was doing, I would take it.
. Day 27 (April 27) – Titles
Ø 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.
I think that there is a part of everyone, be it big or small, which has always wanted to write a book. I know I would. I would love to share my story, my experiences, the things that have and haven’t worked, the wisdom I have gained, or hopefully gained. But I don’t know what I would call it, so I’m just going to throw some ideas out there, and you can tell me if any of them catch your eye:
- The bumps in the road
- When the biggest mystery of all is your own body
- What the hell is it?
- Learning to live with the monster within
- The road less travelled
. Day 28 (April 28) – Must Follow!
Ø Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.
I feel like I have already shared the blogs that I love before on this blog, but I have been told that repetition gets the message to stick better, if only because you don’t want to be reminded 50 times a day any more. So here we go again:
- Chronic Curve
- The Hurt Blogger
- The Kid with Arthritis
- Lupus Interrupted
- Stick with it sugar
- Sweetly voiced
- Misdiagnosed Me
- RA Warrior
- Living with RA
- Parker’s Purple Playa Power
. Day 29 (April 29) – Congratulations
Ø 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!
I think everyone finds it hard to praise themselves, to admit that they are good at something. Whether it is personally, or publicly. We all fear that we will be labeled as arrogant or self-centred. But sometimes it can be good to acknowledge the things that we are doing right, instead of only the times we get it wrong. So even though this exercise makes me feel uncomfortable, these are the things that I have come up with:
- I am proud of the fact that I have managed to overcome my needle phobia. I used to be absolutely terrified of needles. I would try my hardest to get out of blood tests, vaccinations, and anything else that involved a long sharp pointy thing. I would completely freak out before anything needle related, and made my mom put numbing cream on and come and hold my hand (more like me crushing here hand). Even at 15 years old I still had to have this done. The thing that changed this, was my first hospitalization in Wales, where I was at boarding school. My first IV I’d had (well conscious anyway), happened while there was no-one there with me. As my parents where in SA, and my house parent had classes he had to teach. It was at this point that I decided I had to grow up. But it wasn’t an easy thing to do, it took a lot of self-discipline and deep breathing to allow the surgical intern to put that IV in, but after that turning point it has been so much easier. I still get the occasional butterflies in the stomach, but nothing near to what I used to experience. I mean I give myself my injections, no problem now.
- I am a loyal person. I will support you through anything, be the shoulder to cry on, a listener to all things, good or bad, someone who will defend you from unfair judgment, and stand by your side through thick and thin. This is something that I admire in myself, and look for in others.
- I want to share my love for all things medicine and science, and my hunger for knowledge and need for understanding. This is something that has both come in handy, and been a challenge to deal with, when it comes to my chronic illnesses. It has helped understand what is going on, enabling me to better communicate with my doctors, and make informed decisions on treatment options. It has also caused me a lot of grief, as my need to know everything, to put a name to things and understand them has collided head on with the uncertainty around my condition, and there are still many things that are just big question marks. It is something that I am learning to manage, one baby step at a time.
. Day 30 (April 30) – Recap
Ø Describe your HAWMC experience in one word!