Right, I’m going to attempt to explain what is a very complicated jigsaw puzzle here. Me being this jigsaw puzzle! As most of you know, I haven’t recovered as expected from my SCD surgery because I got sick at around 10 weeks post op. This was recently put down to a condition called gastroparesis. Many of my recent posts talk about how I’m learning to manage this very complex and disabling condition through both conventional and alternative treatments. This led me to my visits to a Dr on Harley Street who is actually a specialist chiropractor. She takes on a holistic approach to her patients care and her input has already been invaluable. She’s highlighted that the symptoms I’m still suffering with are potentially due to another under lying condition, and not necessarily my ear !! Of course there is still no denying that my ear has a lot catching up to do in the form of vestibular therapy. But the dizziness and many other symptoms I’m still experiencing could be as a result of something else altogether. Confusing right? She’s on to something though as her theory has been confirmed by an Autonomic doctor at Queens Square in London, who truly believes I am suffering from Dysautonomia, or autonomic dysfunction. This is an ‘umbrella term’ used for a number of conditions including gastroparesis (which I’ve already been diagnosed with) and POTs (which is what he thinks I also have). POTs causes a whole range of symptoms, all of which I suffer from. It goes hand in hand with gastroparesis. I’ll be having tests to confirm this in a few weeks …
And just when you think this is confusing enough, I am also battling against an ongoing issue with my thyroid. This has been a problem of mine since I was 14, as my thyroid just stopped working. Interestingly enough, it was the chiropractor who has recognised that this is also making me unwell. As she put it, my thyroid function is ‘down the toilet’. I love American phrases! My X Ray even shows calcification of my thyroid which she said is not normal at my age. I had suspected that something was going on with my thyroid for months but was I listened too? Nope! Of course I wasn’t. Luckily I have now been referred to an endocrinologist here at UCLH and have an appointment for the beginning of March.
So could it be that what I’m struggling with now is linked to the illness I had when I was 14? I think that a combination of the thyroid and the autonomic dysfunction is playing a part in all my current symptoms. Being so ill with my ear has set all of these problems out of balance again, when I had probably gone into some kind of remission while I was ‘healthy’ (when I didn’t have SCD!).
So although this all sounds like a bit of a big mess, it is now a mess that is being taken care of by who I believe are some of the best experts in the country. My health puzzle is coming together. If it wasn’t for me getting myself to London, I dread to think where I’d be. The amount of fighting you have to do for your health is unbelievable but my determination to get better is paying off, and I’m so excited about where this next step is going to take me! Because who knows where I might be when I start to get the right treatment. Whether that be for my thyroid, ear or autonomic system!! 😬
In the meantime, I’m enjoying my adventures to London. My appointments are right down the road from an amazing little cafe (which I mentioned in my previous post!), and I’ve actually found a few things I can drink in there. Just waiting for the day where I can walk in by myself, sit down and eat everything off the menu without getting sick. I know days like this are coming! The food is super nourishing and couldn’t be full of much more goodness.
My wonderful dad treated me to green juice, Apple compete and a rice milk latte. That’s it bars from the U.S (my favourites). My diet basically consists of snacking on what ever I fancy !
I am also lucky enough to be staying in my amazing friends family flat. Which is an absolute life saver when your having to travel up here nearly every week! We used to come here when we were younger so it brings back some fun (& slightly drunken) memories.
My best friend who has been there for me through EVERYTHING. So many memories!
The last of the news is that I walked through Whole Foods market today ! 🙌🏼 Perhaps not my brightest of ideas but I wanted to give it a go. We take things like popping to the shop for granted but this is still pretty much impossible for me unless I have someone to cling on to. Even then I feel completed disorientated as people run about around me. If only they knew how I felt! Not something I am going to be doing again until I am doing better but I am happy I tried. I just can’t wait until it becomes a normal part of my routine again. I’m not sure how I’ll control my excitement for going to get groceries (!!).
First shop outing in well over a year, not easy guys!!
So here is to finishing off my extremely complicated jigsaw puzzle, as interesting as it is, I’ve had enough of putting it together now. ☺️💛
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