It’s been a long time since I posted on here so here’s an update for those who are not on Facebook! But firstly, I just wanted to show off how good my balance has got now I can almost tip toe along this little wall!
Next I’ll be running, right?!
I’ve gone through many more ups and downs but currently I am way on the up. I spent most of March in hospital because of Sepsis (infection caused by my central line, which I currently need for IV fluids), so that was defiantly a big down disaster. To look on the bright side though, I was put on a specialist ward and met more than 3 dr’s who all had experience in Gastroparesis. Winner! When you keep being told how complicated you are it’s always good to get a fresh pair of eyes. I’ve tried more drugs for my tummy and have learnt more ways of ‘living well‘ with such a debilitating condition. It’s proving to be one of the most difficult things I’ve ever had to learn. Conventional medicine is just not working in terms of improving my symptoms. If anything, they all make me feel worse!
Despite being on the ‘up’ with my health, I feel like I am stuck in a pretty vicious cycle with my recovery from SSCD surgery and the gastroparesis. Whenever I try to push myself with vestibular therapy, this naturally makes me feel dizzier, and you guessed it… sicker as well. When I’m already feeling nauseated from having gastroparesis, this is really the hardest thing to deal with. I want to fight back against the nausea & vomiting by controlling things like my diet, but this is more difficult to do when I am dealing with recovery that in the short term makes me feel generally more unwell. But anyway, I’ve continued to push through it, and have seen some real results with my balance! I am back to walking around the garden, doing some yoga, and tip toeing along my new obstacle course in the garden (this is normal when your trying to get your balance working, right?!).
wondering when it’s time to get monkey bars ?
Life is hard but IT IS SO MUCH EASIER. And I am so grateful for how much of my life I have got back already. I feel like I’m getting back to where I was back in September in terms of my recovery, before the gastroparesis came back with a vengeance. With things gradually moving forward I am noticing the little things that are still stopping me moving forward as much as I would like. One thing being my vision which I believe is directly linked to my vestibular system not functioning properly (this sums me up pretty well). I find it hard to focus on objects and struggle with people coming anywhere near my visual field. This is a bit of a nightmare when you live in a busy household and next to a main road with moving cars ! I never noticed this before surgery but I trust that with more vestibular therapy this is something that will get better and better. Apparently you can get special glasses that block out things that come into your visual field, but I think I’ll give this look a miss for now….
Learning to manage gastroparesis and retrain my balance is all such a massive working progress. I have a long way to go (I say this a lot!), but everything is slowly heading in the right direction. I am back to London in May for some more tests (autonomic tests, to see if this is what caused my gastroparesis), appointments and treatment with my chiro (who is a miracle worker). In July me and my mum are heading back to Boston which I am so excited about. It will be my one year follow up where I’ll have tests re done, see the famous dr Lee and Lewis and have vestibular therapy with my therapist (who is also a miracle worker). It will be another big step towards getting better so bring it all on.
Final update (this is a pretty good one), the documentary we all featured on, Medical Mysteries, has now been released and is available for you lot watch! I’ll post the links below for any of you interested in watching, please be warned there is some pretty gory surgery scenes. You probably won’t squeam as much as I did though. Oh my!
U.K. version (U.S. version below)