About Diary of an AStronaut
I started keeping a daily diary at the very start of the coronavirus pandemic to record the strangeness of everything.
This happened to coincide with my ankylosing spondylitis going from being just about manageable (and something I had gotten used to for nearly 20 years) to debilitating.
The AS used to manifest as painful sacroiliac joint flares approximately 10 – 12 times a year and then it become constant flare. It also spread to my skin, ribs, knees and ankles.
Below are some excerpts from the diary. All entries were written on the day.
It includes the worst flare of my life, navigating the NHS to get my diagnosis and starting the ankylosing spondylitis diet. These days it includes experiments with diet, exercise and general gut health.
I’m putting these entries up bit by bit (there must be over 700! So it’ll take a while!) in the hope it might help others. When I started out on my journey reading what others were experiencing really helped me.
Autoimmune issues, the power of the social network and air moisture
SI Pain: 1/100 | Rib or Shoulder Pain: 0/100 | Concrete Back: 7/100 The ankylosing spondylitis has largely been great, with no SI joint pain and just a few fringe symptoms in the rib and shoulder. Nothing severe, more just an 'awareness' of those body parts than...
Some ‘fringe’ AS symptoms PLUS a disappointing start to the infrared sauna blanket test
SI Pain: 1/100 | Rib or Shoulder Pain: 9/100 | Concrete Back: 7/100 It was quite an interesting weekend because I experienced an explosion of fringe ankylosing spondylitis an autoimmune symptoms. These included... • A constant runny rose whenever I was outside • The...
FAST: Heightened senses on day 3 of the fast
SI Pain: 1/100 | Rib Pain: 0/100 | Knee Pain: 3/100 Concrete Back: 7/100 Today was the last day of my fast. I felt pretty good but definitely the mood takes a hit on day two... and today is day 3. I'm kind of fine but also not. I'll unpack that a little... Physically...
FAST: I’m starting a 48-hour fast today
SI Pain: 0/100 | Rib Pain: 3/100 | Knee Pain: 4/100 Concrete Back: 8/100 I'm starting a 48-hour fast today. I just felt a bit rubbish yesterday evening and I decided to do something to knock myself back into feeling good again. Fasting is something I want to try to do...
Autoimmune disease isn’t always a pretty picture
SI Pain: 3/100 | Rib or Shoulder Pain: 0/100 | Knee Pain: 4/100 | Concrete Back: 9/100 Last night was tough. I think it's important to be honest in this diary. My focus with Gut Heroes is to talk about and celebrate what works. At the same time, I don't want to fall...
Why binary views from ‘wellness experts’ are baffling
SI Pain: 6/100 | Rib Pain: 0/100 | Concrete Back: 16/100 I felt stiff and achy today. I want to say that it's from doing a different form of yoga last night, but I don't think it was. Most of the moves were quite similar. I suspect I'm feeling it from the enormous...
Stress, inflammation and autoimmune disease symptoms are tightly linked
SI Pain: 5/100 | Rib Pain: 0/100 | Concrete Back: 14/100 We know stress, inflammation and autoimmune disease symptoms are tightly linked. They are for every human being, regardless of whether they have an autoimmune disease. Both yesterday night and this morning, I...
Sugar free dark chocolate finding (Plus: Reminder to always check backs of packets)
SI Pain: 2/100 | Rib Pain: 0/100 | Concrete Back: 9/100 Just a quick entry today. Everything was fine; it was a beautiful sunny day. I went for two walks and, generally, felt great. However, I had a slight sensation in my right sacroiliac joint. This first occurred...
Yoga is a powerful tool for managing ankylosing spondylitis (more confirmation!)
SI Pain: 0/100 | Rib Pain: 0/100 | Concrete Back: 8/100 Felt generally very good today and had zero pain. Nice, long walk helped, and didn't have any recurrence of lower back stiffness, even though I spent quite a lot of time at my desk. This was a really, really good...
Alcohol Free Test Update: Day 6
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...
Great, pain free run continues (but possible question mark over butter or nightshades)
SI Pain: 0/100 | Rib Pain: 3/100 | Concrete Back: 8/100 It has been an amazing run over the last week. Lots of bright green days in the diary. I've been virtually or completely pain-free and I think this probably feels what a normal person feels like. It's not...
New experiment: No alcohol for 21 days (starting yesterday)
SI Pain: 0/100 | Rib Pain: 4/100 | Concrete Back: 9/100 Okay, some good news on the AS experiment front. A new test! I'm cutting out alcohol from my diet for the next 3 weeks, starting yesterday. My partner is running a half marathon soon so we decided to go booze...
Chocolate and Gluten – Mini Findings
SI Pain: 0/100 | Rib Pain: 7/100 | Concrete Back: 7/100 Thought I would do a quick diary entry today because I think I've had a couple of mini findings. The first is around chocolate. I've been eating a lot of chocolate courverture drops recently. They are to replace...
A splash of BRIGHT GREEN and almost 100% pain free for days (Plus name change)
SI Pain: 0/100 | Rib Pain: 0/100 | Concrete Back: 10/100 Now that I don't do diary entries every day, I find that if I'm not in pain (or if nothing interesting has happened AS-wise) then often I don't leave a diary entry at all. But something stood out to me today...
I still sometimes get this 2 years into the diet (but it disappears fast)
SI Pain: 0/100 | Rib Pain: 0/100 | Concrete Back: 12/100 I thought it would be interesting to do a diary entry today to describe an element of the AS I still sometimes get nearly two years into managing the disease through diet. I woke feeling fine (and definitely...
Brain walks and yoga aches
SI Pain: 1/100 | Rib Pain: 0/100 | Concrete Back: 11/100 Today was a pretty average day, AS-wise. There was no 'spiky' pain, but I also didn't feel particularly limber either. It was stunning weather outside, and so I went for two long walks, which really helped the...
I’ve clocked more miles walking than public transport and driving combined
SI Pain: 3/100 | Rib Pain: 0/100 | Concrete Back: 17/100 Walking is essential. It's something I realised long before I got my official AS diagnosis and long before I started the diet. It's so, so important to keep your joints moving. Whether you have ankylosing...
Second fasting experiment to beat AS flare
SI Pain: 6/100 | Rib Pain: 0/100 | Concrete Back: 14/100 I was nervous waking up today. I slept fairly well last night in spite of everything. Woke 7 or 8 times but did get some sleep and got up about 7:30am. While I was lying in bed dozing, I was in pain with my left...
A difficult day today, might try fasting tomorrow
SI Pain: 25/100 | Rib Pain: 7/100 | Concrete Back: 11/100 It was a difficult day today. I've been on edge all week with my back, and things just really came to a head this evening when I was sitting down for dinner. I could feel the ankylosing spondylitis creeping...
Challenges with this diet and way of life and why it’s worth pushing through
SI Pain: 6/100 | Rib Pain: 0/100 | Concrete Back: 16/100 Today was a strange day. I woke up not feeling great. It wasn't terrible (better than yesterday) and my sleep, though not the best, was ok too. I probably woke 3 or 4 times in the night. When I got up, I had a...
Results in! Massive success from the fasting. Today I feel amazing
SI Pain: 0/100 | Rib Pain: 0/100 | Concrete Back: 3/100 Today I feel great. Literally amazing! It is such an incredible transformation from yesterday where I had some nagging niggles from the AS. All of it was getting me down and my head was in the wrong place. If I...
Success with the fasting but AS fear creeping in
SI Pain: 3/100 | Rib Pain: 0/100 | Concrete Back: 11/100 Last night I woke up a few times with that random, nudging AS awareness. I'm not sleeping as well as I did when I first got back from holiday, so it's an annoying shift backwards. When I properly woke up I was...
Fasting: Starting to come out of flare…
SI Pain: 22/100 | Rib Pain: 0/100 | Concrete Back: 9/100 Today is the first day I'm potentially coming out of flare! I had an awareness of my left SI joint this morning, but it was less than 9 out of 100 first thing. There's no other pain anywhere else and I slept...
My very first attempt at fasting to take on an AS flare
SI Pain: 34/100 | Rib Pain: 0/100 | Concrete Back: 15/100 This is quite an important post. Yesterday, I felt pretty terrible from the AS. I knew that today I would feel bad as well and so I made a decision to try fasting. This is the first time I have ever tried this....
In flare right now, nearly 50 out of 100.
SI Pain: 46/100 | Rib Pain: 5/100 | Concrete Back: 22/100 I think I need to do another diary entry today because I am in the midst of an AS flare. I don't know yet how bad it will be, but it started properly yesterday and was probably a 30 out of 100. Now, as I write...