Woke up feeling a little anxious.
My back doesn’t feel great too so I think that means I’m starting to have another flare up.
I decided to have ibuprofen with my smoothie since we were going to be out all day and doing a lot of walking.
None of us slept brilliantly last night because there was a bit of a cacophony at 4am.
Lot of things running through my head at the moment.
Despite being relentlessly upbeat about the idea of having ankylosing spondylitis to family and friends I guess subconsciously I’m still processing this diagnosis (if it is a diagnosis).
It feels quite scary and weird and then at the same time I’ve got to try and be sociable today on not much sleep.
I do still feel a bit rough from the coronavirus jab too which isn’t helping. Just generally a little bit achy around my my chest and stomach and hips.
That combination of feeling a little bit run down with a slight ankylosing spondylitis flare up is just making me feel a little bit low.
We walked from Green Park to Hyde Park which helped with the back a little. Stopped off at a cafe on the Serpentine had a mocha which felt like a great idea at the time but ended up making me feel really anxious and stressed and strange later.
My back also seems to be playing up more as the day progresses.
It’s crushing doing something dramatic like changing your diet and having all these profound effects that you’re really happy with… only to find those old symptoms sneaking back. It feels like a punch to the stomach.
We wondered around the museum for a couple of hours. It was amazing but when you’ve got your face covered it’s really hard to focus on anything other than the fact that your face feels really hot. Staring at the wonderful art I found my mind wandering to my stale coffee breath bouncing around my face mask.
I started to feel more anxious. Overstimulation from the coffee and mask claustrophobia was making me feel weird. At the back of my mind I was worrying about the ankylosing spondylitis diagnosis.
The food choices at the cafe were actually quite good because there was a whole load of salad options and you could get three different types all of which looked quite generous and healthy.
I had a kind of beetroot salad or cabbage thing with a Caesar salad and something else which I can’t remember, maybe coleslaw. I also got a side plate of vegetables to from the cooked section.
I felt really at my lowest point all day in this room.
It was a beautiful stately room with incredible stained glass windows but at the same time it somehow felt dark and strobed and quite disorientating. It was also huge and there were lots of other diners in there. I was hot and feeling weird from having worn the mask for so long and it’s hard to describe but I just felt a little bit faint and anxious.
Chris asked me how I was doing and and though I wasn’t going to mention my possible ankylosing spondylitis diagnosis it came out.
He said he was really sorry to hear that and was really lovely about it. He genuinely seemed concerned he is someone who is incredibly smart and knowledgeable.
I felt a couple of things. More panicked in one sense but at the same time it was fantastic to be able to talk to someone who really knew what he was talking about (although he said he was relying mainly and what he learnt about it years ago in medical school).
He thought taking biologics could be a good option and suggested they are not quite as bad as I think they are. Apparently they do treat the underlying problem rather than solely being a kind of symptom coverer.
This was interesting to me. I knew that these drugs were there to help prevent the condition get worse or grow but I had seen them as being quite a risky rocket launcher approach that’s blitzes the immune system.
I think in reality they might be a fairly advanced type of medicine so certainly something worth thinking about.
He said he was going to read up on it later which made me feel good and I feel now at least that I can go to my rheumatologist with a bit more knowledge.
He was worried that I’d had to wait so long for my appointment. I explained that I thought I could use the 3-months to really give my new diet a proper trial and he seemed to think that was a good idea.
I was relieved that he wasn’t writing off the diet as being stupid. It probably helps that he has to completely micro manage what he eats for his marathon running so he knows the incredible impacts changes like this can have.
So anyway the meal was quite strange and overwhelming. I went to the toilet at one point partly to go to the toilet but also partly just to try and reset myself and stop panicking.
I didn’t have a panic attack but I think this is probably the closest I’ve come in my life to having one so far. I remember thinking while we were eating that if I did have one and collapse then at least doctor Chris would be there to help bring me round!
We walked around a large green square near the Saatchi gallery. It was surrounded on all sides by a market with lots of people selling cheese and meat and food. It struck me as a really cool place and somewhere we should come back to again in the future.
I considered asking someone for a taste of cheese so that I could line my stomach and take some painkillers to prep myself for the rest of the day but I didn’t which was probably stupid in retrospect.
I saw a place selling dumplings which made my heart sink. Dumplings are my favourite thing in the world but rather than mope about it I’ve decided I’m going to try and figure out a way that I can have dumplings without the starch. There must be a way of doing it.
The Tom Aitken restaurant was fantastic. It was a really impressive meal and they have the service just right.
The first few dishes that we was served up were absolutely mind-blowing. As well as what was on the menu he served us up a selection of snacks which were absolutely incredible. One was a made with chia seeds and barley and something else. I think that was my favourite thing that I tasted all day. He then did a KFC style chicken leg which was incredible too.
I can’t really remember all of the dishes and detail accept that there was a salad broad bean and ricotta dish which was by far and away my favourite.
We got home in the end all of us absolutely knackered and we’ve pretty much went to bed immediately I think. It will be interesting to see if any of the food effects me tomorrow.