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 pleasantly surprised not to have any pain, just a very slight awareness of the left SI joint. Nothing more.
I started my routine as normal and had an ice cold shower, which helped and then I was sat at my desk from 7am – 5pm.
Today was a tricky day for the AS in the sense I spent most of it sat down. There was too much on to get out for my normal morning walk.
The good news is I didn’t really get any more pain or any more stiffness as a result of sitting at my desk (which is a real surprise).
I thought I would, but didn’t, and it was a fairly stressful day at work which normally exacerbates things.
So at the moment, it feels like the fasting has really, really worked.
I still wonder whether in hindsight, perhaps I could (and should) have missed dinner last night. That would have given me an extra 16 hours of fasting without much extra effort.
If I was doing fasting again, I would definitely consider that because it might be that this extra time would knock it out 100%.
I feel like the 48 hours fast has taken the edge out of the situation. I’ve got to what I would call a healthy ‘no pain’ day, but not a day where I’m feeling too great. There are AS twinges and awareness and I could be better.
Again, it’s really hard to tell without having done the extra bit of fasting.
It’s a fine balance experimenting with something like this. I’m not the heaviest person in the world and find it difficult to put on weight. A fast like this is quite tough in that sense.
But it wasn’t tough at all in terms of the ‘doing’ part. I expected to feel incredibly hungry all the time and ravenous and panicky, but wasn’t.
In fact, I had what felt like a kind of energy and ecstasy at times.
I would add that towards the end of the fast I felt quite aware of my emotions. Perhaps more heightened on both sides. Like I could easily be swayed into being very happy or very sad.
But it was easy to cope with and the almost immediate benefits of the pain not getting worse and then rapidly decreasing was just incredible.
So fasting is definitely something that is 100% in my tool kit now.
If I had to rate my pain as I write this, I would say it was very low. It was maybe under 3 out of 100 in the morning and stayed like that for most of the day.
When I eventually went for a walk at 5pm I bought an almond mocha coffee.
This is a slightly risky drink for me. I say it’s slightly risky because too much almond milk and any hint of sugar when I’m not feeling my best isn’t a great idea.
About an hour into the walk the sensation in my lower left SI joint was entirely pain free but the awareness was still maybe 3 out of 100. That is amazing, given that I expected to be in full flare by now.
My right knee feels a little bit sore, but like it’s slowly getting better all the time. At this rate in a couple of weeks it should be gone completely.
Once it goes and if I can get to zero on the general AS pain, I am going to try and learn to start running.
I think this could be really exciting.
My coughing has been quite tough today and it’s annoying because I can’t really think of anything that would have triggered it. It was bad in the morning and it’s been bad this afternoon too.
I bought another supplement to experiment with called Icelandic beard or something similar. It’s supposed to be good for respiratory issues and coughs. So that could be my next test after the borax.
I’m really not sure about borax. I don’t feel like it’s done much either way and I’m not convinced I will get it again once it’s finished, but will keep an open mind.
One thing I wanted to talk about was how I feel today, mentally.
It’s a massive relief that the fasting has worked and that it works better than I expected. I should be screaming from the rooftops.
But the same time I still don’t feel great…
I can still feel the AS in my lower back taunting me. It’s not painful by my AS scale, more an awareness of it. The sensation is that of a slightly taut achy muscle, not the jagged burning glass twisting sensation.
And it’s not there all the time. But my right knee is still irritating me and that has been nearly a month now and I’m just sick of it.
I’m also sick of coughing constantly with this weird mystery cough. It’s painful and sometimes I cough so hard my head hurts.
It feels related to AS. I think it’s just the combination of things that sometimes hits me,
There’s a lot to juggle with the diet and everything else and it’s exhausting at times. Lots of plate spinning and planning to make sure you don’t get things wrong.
And then on top of that, doing something like fasting felt like a big deal.
When you come so far and still have some pain and it can feel unfair.
It sometimes feels like having a full-time job managing this condition, and there is sometimes an exhaustion attached to thinking this is my life from now on.
But then it’s so important to remember the good days.
It wasn’t long ago (maybe a few weeks ago) where it was so long since I had a twinge, I almost felt it was possible I didn’t have AS any more.
I say that with a pinch of salt because you always know you have AS, but I genuinely felt ‘normal’.
There seems to be an amount of time where this feeling of security kicks in. It’s about 50 days of being pain-free or almost pain-free. You get used to it, and it’s wonderful, and you feel like you could do anything.
In a way, that’s why it can hit so hard when you do get hit with a flare again or a low-level bad patch. It just reminds you that you don’t have control and that you have this thing waiting in the wings to smother you.
It’s hard to explain to someone who doesn’t have it. It’s like having something that provides a constant pain waiting to pounce. A never ending headache that sits in your joints and your back and ribs.
And this pain becomes interwoven with every thought because it’s always there, wearing you down. A low-level poison flooding your body and mind.
When it gets ‘bad’ the headache in your joints becomes glass and firey stabbing. Like a migraine sitting in your joints, firing klaxons at you. Every move can be agony. Sometimes it’s impossible to move.
And one of the difficult things is that the fear of getting another visit of this extreme pain. It stays with you.
Because when you go through a prolonged period where you don’t have it, there is that fear that it might come back.
And it’s not just a case of thinking that maybe you’ll mess up with the diet and that this will be the reason. With AS it’s possible for it to come back for seemingly no reason (or at least for no reason that you can easily discern).
For example, you could get a flare because of stress, and that could come at you from anywhere. It’s unavoidable sometimes.
Or it could come from something you ate but didn’t detect, maybe some ingredient in a sauce you didn’t pick up.
The net result is sometimes we don’t know. And that can be quite scary.
It is like an invisible dagger hoovering over your head. It could drop at any moment, and you don’t know when. It’s tiring.
But anyway, on a more positive note…
The fasting has been a wonderful success. It’s definitely something I’m going to try in the future if I need it.
The evening was fine. While I still didn’t feel great mentally, we had a nice dinner of venison burgers and enormous mushrooms. I had loads of work to do after and didn’t get to bed until about 2:00 am (never great when your AS is being unruly) but I also knew that if I went to bed thinking about work that would be even worse. There is some satisfaction about getting everything done!
Let’s see how I feel with the AS tomorrow. Finger’s crossed.