I woke up at 3am in pain.
I kept trying to turn sides but the pain was too sharp and insistent and I wasn’t able to fall asleep again.
In the back of my head I was remembering the acupuncture guy had said not to sleep on my side.
But I physically can’t sleep on my back because it’s too stiff.
I wondered whether getting up and having a walk around might help. It has done in the past. I usually walk around for a few minutes and try and stretch down towards my toes and just generally loosen up.
I decided to give it a go but really struggled to get out of bed.
I must have been making pained breathing noises because suddenly Kat work up and asked if I was ok.
I managed to stand up beside the bed, just about, but could only put my weight fully on the right leg where there’s currently no pain.
The pain on the left just above the buttocks in the pelvis area was absolutely excruciating. Like glass being stabbed and ground into a raw nerve and held there.
I couldn’t breathe or speak.
It was the worst pain I’ve ever felt, bar none.
I didn’t know what to do because I couldn’t move at all, not even a centimetre.
I just had stand there like a frozen flamingo.
My left foot was dangling toward the floor but with everything tilted over to the side to try and mitigate the searing searing pain.
I had thought before this explosion of pain that I would try and go to the toilet because I half needed to go.
I was in such pain I couldn’t think what else to do so I stuck to this plan and tried to hobble over to the bathroom.
I had to use the muscles in my right foot to shimmy to the wall and then used my hands to try and take the weight.
I just about made it to the door but it felt like it took 30 minutes to travel 2 metres. Every movement was so ludicrously painful.
When I got there I knew there was no way I would be able to go to the toilet.
I also didn’t know whether I would even be able to walk back to the bed – and felt marooned – so I spent a little while kind of leaning on the door frame of the bathroom.
Kat was really worried about me and ran off to get me some ibuprofen and some crisps.
She gave them to me and I tried to eat the crisps as fast as I could so that I could take my ibuprofen without being on an empty stomach.
Eating meant losing one of the hands I needed to support myself. This proved really painful but I managed to eat a few mouthfuls then wolfed down 3 ibuprofen. I then forced myself to eat the rest of the packet of crisps.
After I had finished I was at a loss as to what to do.
The pain was just so constant and so searing that it didn’t allow for any movement. Even standing perfectly still was excruciating.
I somehow managed to edge my way near to the bed again. I was praying that I would have some respite at some point that would allow me to at least get onto the bed.
I managed to lower myself almost to a seating position but couldn’t help letting out yelps of pain as I did so.
Kat asked if it was spasming. I think that is the right word actually.
It felt like that left side of my back, just above the buttocks and in and around the pelvis area, was just in a constant, searing spasming loop.
I tried to twice to lower myself down to the bed but each time I had to stand back up again.
I decided being stood up was marginally less painful so I found myself thinking that maybe I would just have to plough on through the pain and pray that eventually the ibuprofen would kick in and give me a tiny bit of leeway to allow me to lie down on the bed.
It honestly felt like I’d been battling in this searing paralysis for about an hour.
I kept trying to focus on my breath as I didn’t know what to do.
I couldn’t lie down, I couldn’t sit and I couldn’t move.
I said to Kat I didn’t think the ibuprofen was working. She told me that it had only been 10 minutes which was really helpful because it gave me some perspective.
Ibuprofen normally takes a minimum of 20 minutes to really start working. After a lot more anguish and frantic, pained breathing and yelping the 20 minute mark must have elapsed.
I didn’t really feel any different but I was getting desperate. I contemplated sort of flinging myself onto the bed to see if that would work but couldn’t even move into a position where I could do that.
I ended up kneeling strangely with one leg onto the bed and bit by bit I slowly worked myself into lying face down on the bed.
It was some relief to know that I had at least made it onto the bed even if I was facing the wrong way up.
If the worst came to the worst I could probably lie here half an hour or so and hope that something would change.
I was breathing more and more frantically now and Kat was upset because she’s never seen me like this.
She held my hand at one point I was lying down and this really really helped. I wanted to say thank you but I was in so much pain I couldn’t. All I could do was this really horrible breathing and make these occasional, alien sounding yelps.
I contemplated at one point asking Kat if she could call someone to come and see me in the hope that maybe I could have an injection that would provide some respite.
As I was thinking about it I knew that would be unrealistic. Really the only solution would be to try and wait this out and see if there’s any change.
There was a point earlier – when I was stood up and when I couldn’t move at all and was in excruciating pain – that I remember vividly.
If in that moment someone has offered me the choice just to be able to die painlessly to make it stop I think I would have accepted it.
Back to the bed.
After lying face down for what seemed like a long time, but was probably only 5-minutes, I very very slowly managed to use my arm to slightly press up myself onto my side.
In a series of slow micro manoeuvres incredibly I managed to get onto my side and then onto my back.
Kat put a pillow under my knees because she had remembered that this had sometimes helped.
It was an extraordinary experience.
It was so incredibly painful that I almost felt like I was caught between vomiting and crying the whole time.
I noticed tears were in my eyes and were making my cheeks wet even though I didn’t have the sensation of crying.
It was a relief to be lying down in a flatish position and made me feel like I was still human.
Kat suggested I focus on my breathing and focus on exhaling the breath into the pain. This was an absolutely great idea and I did momentarily have a little bit of success with this.
However overall the pain was so intense that I didn’t really help.
It felt as if a whole part of my pelvis was locked in a spasm. I found myself tensing everything around it to try and take the pressure off the area and stop the pain.
So in a weird way I was kind levitating my left leg using an odd collection of muscles.
I focused on my breathing more and I also tried tensing and relaxing my glutes which is something I’ve tried before and I’ve had a little bit of success with.
What this does is focus you a little bit on something else and I think it does actually help with the pain because that whole area seems so tightly bound.
Eventually it got to the point where while it was still painful if I stayed perfectly it wasn’t so painful that sleep would be impossible.
At this point I noticed that my nose was feeling stuffy. I could have almost laughed if I wasn’t in so much pain. It seemed like the most ridiculous time for my dust mite allergy to add problems to the mix.
I think I must have fallen asleep for a little while eventually. I remember waking up again and thinking that I couldn’t sleep on my back any more.
Even though the acupuncturist said I needed to sleep on my back I felt like any kind of sleep this point would be beneficial.
I tried lying on the left side first thinking it wouldn’t be so painful and then the right side after that which was also painful. I gave up and decided that it would be better lying on my back and not risking causing any more problems.
It doesn’t matter too much if you don’t sleep because you do get some rest just by lying down.
Eventually decided to get up about 8.
I had a text message from Pri and she’s really excited about today and that made me feel a bit sick.
Given everything that has happened it seems almost like impossibility that I would be able to go and see everyone tonight.
At the same time I felt I needed something to focus on. Pain just gets worse if you let it stop you going about your life.
I decided I would see how I felt when I got out of bed.
This is always a lottery because you can be in terrible pain inside the bed and then get out of bed and be terrible pain… or you can get out and actually walk around a bit.
To my joy and surprise I was actually able to walk.
It was a painful but I could definitely move and I was able to go to the bathroom. Though it is painful I managed to use the toilet.
Getting down the stairs from our bedroom was a tricky and I can kind of went down the same foot first in the whole way.
On the landing I was in pain so I WhatsApped Kat and asked if you could get some food and ibuprofen ready for when I got downstairs.
I felt I needed to take something immediately because I would have to sit on a chair at some point but didn’t know if I would be able to do that without excruciating pain.
She came up trumps and I gobbled the painkillers and sat down in the chair.
It was incredibly painful and again I had that sensation of having of having to tense everything on that side to try and levitate the painful section.
Eventually after about 15-minutes it started to subside and the painkillers kicked in. I was able to sit there, very still, for a short while without experiencing pain.
This was relief and then I set about taking some practical steps.
I booked another appointment with GP at Hand for this morning.
No physio or doctor was available so I booked an appointment for an advanced nurse. She was kind and suggested getting some over-the-counter co-codamol.
I guess this is worth a try and I don’t think she would have been able to prescribe the other drugs that are listed for AS.
I also texted Pri to warn her that have really bad back pain and that I would need to sit in proper chairs today and that I might be a bit of an ass because I’m on painkillers.
She was really cool about it. Kat also told me I should use an Uber to go all the way there because it’s 50% off and obviously I can’t walk in my current condition.
I went out for a little walk because I was feeling like I could test myself a bit. I know the only way that this thing gets better is by more movement not less.
I went to Manor Park cemetery and across the Wanstead flats and then home.
It’s an incredibly beautiful day today and I wasn’t in too much pain. In fact it was probably about how it was yesterday so that was a big relief.
The thing I absolutely 100-percent need to do is make sure I keep taking my painkillers three times a day.
I just need to run the course for three four or 5 days or however long it needs to be.
I took an Uber to Pri’s house after lunch.
Considering how many painkillers I had yesterday and today I was surprised that I didn’t get absolutely hammered after two pints.
I told my friend Cassie, who is a consultant Physio, about my hypochondria about AS.
Bless her she gave me a full consultation right there at the pub.
She knew her stuff and asked me all the right questions and said that it sounded like it was possible that I have AS but she really hoped that I didn’t.
She also said that she thought taking ibuprofen was a really bad idea and it’s just generally very bad for you whether or not you’re eating food.
I don’t know what else to do though at the moment. The pain is so constant.
Either way I have got to figure out getting seen to by a specialist.