I woke up today in flare.
Kat said she heard me groaning at 5 am.
This time it’s not my pelvis but the back of my ribs. On the left-hand side and at the bottom.
It’s so painful that it keeps spasming and locking in a fit of excruciating pain.
It has the same flavour to it as that night of horror but because it’s on my mid back it’s not quite as bad as I don’t have to put pressure on it.
Still, it made getting out of bed incredibly difficult and I found breathing quite painful.
Kat has been really nice to me today. That must be hard because I’ve been such a depressed, miserable git recently.
She said that I don’t need to worry because I’ve got nothing to do today and I can just relax.
I ran a bath and sat in it for the next hour.
I think having a bath calmed me down and I sat there reading the no starch book, which is quite well written.
I just feel generally low at the moment.
First thing this morning I just felt really rubbish.
I didn’t feel suicidal, in the sense that I would never kill myself, but at the same time I didn’t feel like life was worth living.
I can’t be exhausted all the time and thinking about pain and trying to guess where the pain is going to be next, it’s just too exhausting.
We had the same lunch as yesterday and that was nice because I find it quite reassuring.
After lunch I got ready for my massage appointment. I got there in plenty of time.
It was in a fairly pleasant sterile building. I found it quite amusing that the waiting area was just a couple of benches with no back to them. Terrible for anyone with back issues.
I pictured anyone waiting for an osteo getting themselves into more crippling pain just by waiting there.
The massage therapist was really nice and she asked me loads of questions about the ankylosing spondylitis.
I explained the situation – that I hadn’t had the official diagnosis – and then showed her the notes from the GP and the X-rays and the blood tests.
She said because the rheumatoid factor in the blood test was negative that she thought there was a good chance I didn’t have it.
She also seemed to think there was no damage from the x-rays which was a good sign.
She said that genes didn’t have that much to do with it and that was weird.
I kind of felt like my whole world was being slammed in my face a bit.
I’ve gone through so much pain recently and I’ve been reading so much about this thing it was just strange for someone to sort of dismiss it, or not dismiss it necessarily, but just suggest that maybe it wasn’t that thing.
We cracked on with the massage which was pleasant but not amazing.
She went into a big theory on pain and why it exists. She’s become obsessed with chronic pain.
Her argument is that lower back pain is a fear response or a flight response because that’s the lower part of the body and you use it to run.
She said that upper back pain is the fight response because that’s the bit of the body that used to fight. I guess that makes sense in a kind of intuitive way but I’m simply not convinced that is what is going on.
Still she was gentle with me and that was good. She talked almost the whole way through about her theory. When she put me on on my back she talk me through how to do diaphragm breathing which is something I had tried ages ago.
She thought if I practiced this every night it would help me calm my parasympathetic system and that this would cure the root of most of my pain.
The session went very quickly which I guess is a good sign. I didn’t come out feeling that lovely jelly-like relaxed I usually get from a long massage. I did come out feeling like she had been careful though so that was good.
It’s a tricky one because I feel like she was really earnest and really believes in what she’s talking about.
At the same time as I walked home I felt really weird and maybe like a fraud as if I had self diagnosed myself. I found myself googling the things that she had said.
It turns out if you do have the rheumatoid factor in your bloods it means you have arthritis rather than ankylosing spondylitis most likely.
So that contradicts completely what she said on that.
Also she kept on saying throughout the session that the fact that the pain keeps moving about indicated that it wasn’t ankylosing spondylitis.
She also said the same about the fact that I keep waking up with it. She thought those were signs that it wasn’t ankylosing spondylitis.
I reread those symptoms and they absolutely seem to bang on specific to ankylosing spondylitis so I think she was talking complete rubbish about that.
I’m glad I did check those things out afterwards because it was making me feel a bit stupid and like I was making stuff up and like this wasn’t the real thing.
I know it 100-percent wasn’t her intention to make me feel like I was making stuff up but I think she’s caught in a bit of tunnel vision. So strictly following her fight flight narrative for all pain that she’s unable to conceive of other problems being caused by rogue genetic function or bacteria.
When I got home I decided to have a little lie down upstairs which was nice and I put the heated blanket on.
Dinner was nice. Kat really has perfected cauliflower rice and I think it’s absolutely delicious. Much more delicious than real rice.
Right, I’m going to head to bed now I think.
I have to say my pelvis and lower back has been 0 pain today.
This is the first time in what feels like forever. If I think about it the pain came back on Saturday so it’s taken 6 days for it to go away or maybe 5 days after having that meal where I cheated.
The pain in my ribs is still there but it doesn’t feel quite as bad as yesterday and I think in part I’m going to put that down to the exercises I was doing.