May First marks the start of Ehlers-Danlos Syndrome Awareness month, a month where us living with Ehlers-Danlos Syndrome do as much as we can to spread awareness and knowledge about our relatively rare genetic condition! Now we do like to spread awareness all year, but May is extra special to us.
Now I do blog a fair bit about Ehlers-Danlos and how it affects me normally as well, but now in May I shall try to do it even more, and I may even try to put together some YouTube video about it. I used to have some videos up on my YouTube channel but recently made them private due to them not having the best quality and they were recorded directly on YouTube so no editing or anything was done. Think I shall attempt to make an EDS awareness video combining both photo and video and edit it in Movie Maker before uploading so it looks more neat and has a better flow to it, I may try some vlogs again as well, but I'm pretty camera shy and with my brain being the way it is...
So you can imagine trying to record a vlog and staying on subject throughout the whole video... I also feel really awkward talking "to myself" on camera. But I'll try! It's for the greater good and if it can educate people about Ehlers-Danlos Syndrome, maybe help someone currently who's running rampant without a diagnose, it's all worth the awkwardness!
Seeing how I have been feeling a bit better lately despite my pretty severe pollen allergy and a pollen season from hell, I don't look too bad at the moment so yeah, videos may be coming soon!
I'm also beginning to suspect that I may have some kind of cortisone deficiency in my body. I'm going to discuss that with my doctor ASAP as I started to feel better the same moment I added the Betamethasone tablets for my allergy a couple of weeks ago. This pollen season has really been...
So I haven't been allergy symptom free even with the Betamethasone, but even WITH allergy symptoms still (though they've been kept at manageable levels with all my medicines) I have been feeling a whole lot better in general than I do on your average random Thursday anytime of the year when I'm not taking any Betamethasone.
I've also gotten a bit more normal appetite compared to my usual barely wanting to touch food kind of appetite, and the pair of jeans that I bought on Good Friday are already like a size too big and I normally stay the same when it comes to size, possibly due to my body often being in starvation mode when my appetite is very low, and hence storing all the nutrition that it does get.
It's just a theory, but I am definitely willing to try it out for an extended period of time, especially since we're talking really low doses of Betamethasone. My sweet spot seem to be as little as 1mg twice daily or 1.5mg twice daily, so yeah, 2-3mg per day! It's such a low dose that it doesn't really even pose any risks when it comes to your body's own production of cortisone.
I know taking any kind of steroids is bad for connective tissue though, but again, it's such a low dose so it shouldn't be a problem, and if it does work out and giving me more energy and a more normal appetite, the benefits definitely outweighs any possible risks! I really could do with weight loss for my long term health (at this time, I have no health issues at all that can be blamed on my weight) and having a bit more energy to do things is never a bad thing! It's not a cure, but yeah, just being able to get on with my day a little better, being a little bit more spontaneous with activities and being able to drive a bit more again, to me those little things are just utterly amazing!
I have been doing more in the past couple of weeks alone, than I'd normally manage in a month or two, plus that I've been driving more in just one week, than I've done in a 3 month period lately. If 2-3mg of Betamethasone per day is giving me all these benefits, then being on that medicine is the right thing for me and I will fight for it if I have to!
On a completely different note before I finish this blog post.
My blog has reached over 10,000 hits! Thank you so much everyone who's reading this and reading my posts! When I first started this blog some years ago, I could have never imagined it would ever reach 10,000 hits! But the number definitely keeps me motivated to continue writing as often as I have something to write.
This shall be celebrated with a short clip of the fireworks that were displayed at the spring celebrations I attended yesterday (April 30th).
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