SI Pain: 1/100 | Rib Pain: 4/100 | Concrete Back: 4/100
It’s just shy of a week since I cut out alcohol, and I thought it would be interesting to do a diary note entry.
I’ve gone much longer without alcohol in the past, but this is the first time I’m recording it in relation to my ankylosing spondylitis.
I had two alcohol-free beers last night, a kombucha, and a virgin espresso martini. My mouth tasted like a cauldron of synthetic flavours afterwards.
I felt a bit grumpy this morning, which is weird. Almost like I was hungover, but I feel fantastic physically. No aches or pains.
I think next time I’ll just have some sparkling water and maybe some kombucha.
Oftentimes, and I found this with the diet, if you try to replace something that you like with something that approximates that, it’s more disappointing than just choosing something different.
But anyway, the main thing I wanted to say is that I feel amazing today.
I would mark pain as almost zero all round. My back stiffness is unbelievably low, about 3 out of 100 for most of the day. I can’t remember it being lower than this, at least not since I was a teenager.
Again, it’s hard to know sometimes how to interpret and grade the back stiffness given that it was 19 years before I got my diagnosis. My understanding of what is to feel ‘normal’ is sometimes off.
There were times in the last year, in fact in the last 2 years, where I thought maybe I was at a normal level, but then as I kept going with the diet and added new things to my regime (like yoga and sauna for example) I discovered that there was further to go, which is amazing.
It also shows how toxic this disease can be, and all autoimmune diseases, if they are left unchecked for so long.
The symptoms just become your normality, the brain adjusts to a new benchmark and after time you don’t have any comprehension or understanding of what it might be like to feel different, to not to have the disease.
It’s tragic that we’re not diagnosing these diseases much earlier. More than that, it’s a tragedy that we are not ploughing more research and funding into gut health and the microbiome. We need to be raising awareness and knowledge and getting it out there into treatment plans. Gut health can be targeted in conjunction with the medications being used now.
It’s very early days, but the alcohol experiment has been great so far. I feel amazing today and I haven’t even left the house yet. It’s 2:00 p.m and the fact that I have zero stiffness whatsoever or any pain is just miraculous.
My partner and I are going to go for a big walk later and then we are going to go out for dinner for the first time in a very long time, which I’m really looking forward to.
I’m lucky that living in London there are now so many options, even for someone following such a strict diet that avoids starch, dairy and sugar.
We found a place where about 80% of the menu contains things that I can eat without having to make any adjustments whatsoever. That’s almost unbelievable.
When I get time I’m thinking of maybe putting together a little resource of restaurants and possibly supermarket brands that are good for folks following a starch-free diet to manage ankylosing spondylitis.
It would great if eventually other people could throw in contributions. Potentially I could make pages which covered different countries and cities so people would have an easy way to find stress-free food experiences.
Looking forward to seeing how I feel tomorrow, but so far this has been a good experiment, I think.
Update: I’m writing this continuation at about midnight.
Just a couple of interesting things I wanted to note.
As I’ve got better at understanding the diet I’ve become less anxious when I go out to a restaurant and figured out the best approach when ordering. I usually don’t tell the staff that I am avoiding starch or dairy or sugar. Instead, I just order things that I know will not have any trigger ingredients.
However, that means sometimes there will be a sauce that might contain an ingredient I’m trying to avoid but can’t see.
It’s too much fuss otherwise as staff get stressed when you start explaining the things that you can’t have. It’s easier to avoid sauce or scrape it off if it is already on the food. This has always worked fine since I got solidly pain-free with this diet.
But tonight we went for tapas. So, lots of little dishes. Most of it was absolutely fine but there were a couple of dishes which I wasn’t sure about.
One had a sauce which was a little bit creamy which I scraped off. The other risky one was some artichoke which had been fried and it looked like it had a tiny bit of batter or breadcrumb on it. I tried to scrape it off but it’s possible that a few remnants got through.
It might sound ridiculous to record so a much small but I’m mentioning it because about an hour and a half later, which is typically when I have a response to trigger foods, I had a slight awareness of my lower left sacroiliac joint kick in.
It wasn’t painful. But it was just there, letting me know that it existed. I also had some slight tightness and rib pain in my chest at the same time. This was disappointing because I’d been feeling amazing. So it was just a jolt to remember that I have to be careful.
But the good news is, I did some yoga when I got home for about 20 minutes and now, as I’m writing this, I feel absolutely perfect. Again, no pain sensation, nothing.
So hopefully everything is fine and it’s just the smallest blip. It’s just a good reminder to be careful no matter how far you’ve come and no matter how strict you are being. Even 2 years into the diet, I’m not quite at a level where these things bounce off me completely. But overall things are going real well.