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 twinge in my SI joint, but it was nothing to worry about, The cold morning shower knocked it out completely and helped decrease the concrete back stiffness.
The walk to work seemed to loosen it up a bit more, and a strong coffee helped too.
But then it was a very busy day and on my walk home things got worse. It was wet and windy, I still felt a little bit stressed from the weekend and when I got home, I was ravenously hungry.
Eating always seems to trigger some sort of reaction with my AS. That’s one of the reasons I’ve carefully cultivated a plan of intermittent fasting, and try to just eat two meals a day at lunchtime and dinner.
But sometimes I get really hungry, and sometimes I feel tired and stressed. Sometimes I just want to eat something and not put myself through the constant “body is a temple” regime.
So I have a list of compliant snacks which shouldn’t trigger me, and are healthy by almost everyone else’s standards, and I keep these on standby.
For example, I have blanched, roasted almonds in a jar which are just lightly salted and nothing else. I also have natural pork scratchings, which I buy from a farm online which are cooked in the natural fat and that’s it.
Both of these should be compliant and I ate them when I got home. Then an hour after dinner, which was a normal ‘safe’ meal, I felt so so stiff.
I knew that if I didn’t do my yoga, I would be in even more trouble tomorrow, and yet I just felt so awful. It was the last thing in the world I wanted to do.
I forced myself to do it anyway, and I’m glad that I did. I’m sure it helped even though it was difficult and the movement very restricted at times. My body felt so unnatural.
And then it just hit me like a flood.
I now spend more time not thinking about my AS than thinking about my AS, or rather the symptoms these days. That is something amazing which I could have never imagined previously.
But sometimes, when you feel like you’re doing all the right things and putting in so much effort (100 times more effort than it feels like others have to just to not be in pain) it can be quite wearing.
Since the weekend, I’ve had really dry ears, and one of them is quite painful, almost as if it’s going to get infected. I have dry scalp as well, which has just come on suddenly and I’m rubbing my eyes more than usual.
My mood is low because of all these little ailments that are all over me, and even though I am not having acute SI joint pain, my SI joints are always hinting that they could explode at any moment.
There is this hard-to-describe symptom where it feels as if your legs are not quite attached to you, as if someone has badly stuck some mannequin legs into your hips or pelvis.
It’s not painful in a scream-out-loud way, but it just feels tiring, alien and uncomfortable.
And I was feeling this as I was lying in bed and waking up every 20 minutes or so with the AS nagging.
As I was lying awake I just felt this is bloody unfair. I keep detailed spreadsheets with an insane number of data points, way over 90 now, and I’m so careful to do all the right things.
Yet every now and again, it just kicks me in the face, and that can be hard to deal with.
I was lying there thinking, why don’t I just take the injection?
Maybe it will be this magic cure. Maybe I won’t have this pain. Maybe I should quiet down my immune system which seems to fighting everything and making everything feel alien and uncomfortable.
I hate moments like this because you feel like you are giving up or that you have lost the will.
And again, it feels unfair because you are constantly fighting just to feel normal.
I had a word with myself and told myself that tomorrow will be different. I will feel different. I will do all the things that I know can work and help me.
I know from several tests and records on my spreadsheet that pork scratchings and almonds, though not strachy, definitely seem to cause some issues with me.
So maybe this should be seen as a silver lining, a wake-up call, and a realisation that I should replace these snacks with something else.
That’s what I’m going to take from this.
I wanted to write this just to flag up that this diet and way of life is not always perfect.
There will always be challenges. Sometimes you wonder what the hell you are doing.
And it’s during times like this that I go back to old spreadsheet entries or thoughts that were written in the moment where I felt great and where I was winning and it can be so helpful.
I really hope you have something to give you that boost when you need it.