Autoimmune disease isn’t always a pretty picture

Nov 14, 2023 | Diary | 0 comments

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 into the trap of sugarcoating things or detracting from the difficult times.

Living with an autoimmune disease, no matter how well you are managing it, can be tough.

You have to put the work in.

Even when you put the work in, sometimes it doesn’t matter what you do, it can wear you down.

And sometimes something beyond your control (or that you are not aware of) can just get at you.

I’ve mostly felt fine for the past few weeks but at the same time, I don’t feel as good as I have done previously. I am not overtly in pain, but I’m also getting some of those edge or fringe ankylosing spondylitis symptoms. I’m also just not quite feeling myself.

Yesterday I had some minor SI joint sensation on the left-hand side. It wasn’t painful and it wasn’t enough to classify as a flare but it was annoying.

I know that sitting awkwardly for a long period on a wooden floor with no back support at the gig I went to on Sunday didn’t help. That is a big factor.

However, I also think it could, in part, be wrapped around a wider backdrop of something being slightly misaligned at the moment.

Whether it’s the changing season and the near-constant rain, or because of something I am trying (such as reducing alcohol and reducing my oxalate intake) I feel like things are out of whack.

In the case of the latter, this could be a positive thing. It might be a period of readjustment for my body.

I can be hard to figure out what is causing what sometimes and there isn’t always an obvious or perfect answer.

I got a coffee yesterday with almond milk but it definitely tasted like dairy. I avoid cow dairy because it is one of the things I believe may trigger ankylosing spondylitis flares so it is possible that this is factor in how I feel.

It’s always worth taking a minute to pause and reflect

Whatever the reason, sometimes it’s worth taking a step back.

Things are so much better than they were 3 years ago or 5 years ago or 10 years ago.

If all I had was this extremely low level irritating pain back then, I would have been so thankful.

It’s helpful to put that into context. One way to do that is to look at old diary entries and notes and see how far things have come.

But it is still difficult.

I saw some family members the other week and they were worried about me. I hadn’t realised that I was behaving differently but they could tell that I was clutching my back a bit (I was definitely stiffer that day) and that I was a bit quieter than usual. I also seemed a little bit less connected.

Pain and inflammation, even when it is low level, is rubbish. But it passes. It almost always passes.

If you’re following diet to help manage your diet try to zoom out, reflect and look at your successes. There will be setbacks from time to time but just stick with it and keep building and building.

Yesterday evening my lower left SI joint started to feel more naggy so I decided to do the thing I didn’t want to do in that moment: yoga followed by 30 minutes on the bed of nails.

This is something I do normally, as part of my routine, but sometimes if I am experiencing AS symptoms I skip it. There are times where I simply can’t do it or it or push myself to do it.

But yesterday I knew it would have a net positive and so I did. I was pleased I did it and I felt better as a result that evening.

But when I went to bed I had a terrible night’s sleep. I must have woken up somewhere between 10 and 15 times.

I dozed back off again each time but shortly after I would be up again. The slight pain in my left SI joint that would then switch sides again. I was also squirming a lot.

The squirming (I need to find a better term for this!) has been bad recently. This is an odd symptom of my ankylosing spondylitis where I feel like I’m trying to tense and rearrange joints, almost as if I have a strange tic or I’m doing an internal dance.

Things often start to look up even when the outlook seems bleak

So all the above was pretty rubbish but I woke up and I got out of bed and there was no pain to speak of, just a slight sensation in that joint.

I did my cold shower and I felt better still.

I did a few hours of work and had that sense of relief. The feeling like I had got something done.

I went out for a walk and that is where some of the great work started…

You feel a certain way in a given moment – whether that is physical or mental – it just is. That feeling and that moment isn’t something that is in our power to change. You can either wallow in it or you can start to do the things that might help you in the moments that come.

Ruminating is sometimes unavoidable, but it is the least helpful thing I have found in my own life.

I try, whenever I find my mind drifting off into a loop, to jolt myself out of that situation.

That might mean finishing a task that needs to be done at work or at home and getting into a new environment as quickly possible.

Sometimes that might not be possible. Sometimes I might need to adapt a little. For example, maybe I need to tell someone I’ll be offline for 20 minutes so that they’re not bugging me.

I’ve often found that even just a 5 or 10 minute walk around the block where I can concentrate on my breathing and experience a change of scenery (preferably green spaces) can make a huge difference.

I’ve also found that working on my passion, photography, is enormously rewarding. I’ll talk about photography in this example but for you it might be solving maths equations, writing, doing volunteering, creating recipes, going for a run – it really can be anything.

In my case I don’t necessarily mean having to go out of the house to take photos every time. It can also mean going through my archive, doing some editing and try to make collections. This is an infinite and ongoing process and it helps get me into a totally concentrated flow state. There are all sorts of narratives in my work that have built up over the years and it is a totally immersive process.

Finding something you can be passionate about and get immersed in does a few things…

1. It takes your brain off the thing you were ruminating about, because you need your whole focus

2. It transports you to somewhere else

That second benefit could be framed as a form of escapism but that’s ok. The modern world has left many of us with some pretty unhealthy notions of what is ‘normal’ (being stuck in a stuffy office for 12 hours, for example!)

When I look at photos it can bring up wonderful memories. My brain makes connections and says “oh, maybe this would work in this collection”. But also just by going through some of these photos I can be back in that moment. Maybe a beautiful mountain trek I did with my partner for example.

It could be a photo or a piece of art or writing or cooking or algebra. If it gives you meaning it can make the rest of the world stop. It can give some context to the angry email from that client worried about the font that was used in his presentation… the person who was unkind to you in the supermarket… the shirt that shrunk in the wash…

Maybe the person who said the ‘mean’ thing didn’t mean it to come across that way… maybe they were having a bad day… or maybe I am the one having a bad day and my AS is just making me feel a bit more on edge.

Many of the stresses of modern life are relatively meaningless when put into context. Those that aren’t can usually be dealt with with a bit of space, clarity and support.

Dreaming of sauna blankets

I went off on a bit of a tangent just now so I’ll lurch back into the thankless, unhealthy human obsession of wanting the next ‘fix’.

I am thinking of getting hold of, hopefully at a huge discount in the Black Friday sale, one of those infrared sauna blankets.

I keep hearing about them in relation to autoimmune health and joint pain and I’m very intrigued.

I realise I’m doing that dangerous thing of obsessing and pinning my hopes on the next ‘fad’ that will solve all my problems. I know it absolutely won’t but the dramatic benefit I get from doing in-person sauna gives me an inkling that this could be really helpful.

And it sounds convenient. The thing I’m most excited about is the idea that this is something I could potentially do in the evening before I go to bed.

That would mean hopefully sweating out some toxins and lowering inflammation to give the body a good few hours at a strong baseline and get a sound sleep.

Sleep is so important in all of this. If you have an autoimmune condition, sleep can sometimes be evasive.

One of the things I have found is that even though changing my diet and doing regular yoga and stretching and sauna-ing and so forth has changed my life…

Even though it has made me happy and excited for the years to come…

I still haven’t quite nailed the sleep thing.

I am getting an infinitely better sleep than I was before, but that’s not saying much as I was getting almost no sleep previously.

Now, on average, I’m waking up four times a night when things are going well. I’m hope this will improve as time goes on but it is still not great.

When I am having edge ankylosing spondylitis symptoms, or if I am in flare, this can shoot up to 10 – 20 wake ups every night.

It’s a vicious cycle because you need sleep to help manage autoimmune disease and keep inflammation down… but then the autoimmune disease stops you from getting it from the first place.

So we will see.

Maybe infrared sauna will help. Hopefully I can find that is within my budget in the next couple of weeks. If I do I will put together a test and put my results on this website.

💡 Mini Findings

• Dodgy seating, wet weather or maybe some accidental cow diary are giving me fringe AS symptoms

• Remember to take a step back and look how far you have come with your autoimmune journey. Everything passes, eventually!

• Find your passion and get lost in it

• Looking forward to testing an infrared sauna blanket, hopefully

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