I woke up feeling a bit shit.
My right side of pelvis is flaring, maybe a 4 out of 10.
Feel a bit under the weather as if I have a sort of cold, but without having a cold.
Hoping this is just a hangover from the jab that I had.
My mind is not good today though and I feel generally quite down.
I just feel a bit exhausted about everything. It’s exhausting having a constant pain in your back. It’s exhausting just generally feeling tired and trying to process what’s going to happen to you and trying to make sense of what life is going to be like.
I was stupid because I didn’t take ibuprofen last night before I went to bed. Didn’t even put the hot gel rub on my back.
Slept quite well considering, and only woke up maybe once or twice, but when I’m on ibuprofen I need to keep on taking it every few hours, otherwise it wears off.
I stupidly haven’t taken it this morning and as I write this on my walk that’s making me feel down too. What am I doing? It’s just crap at the moment.
I booked an optician’s appointment for Wednesday. I chose this company because they get really good reviews. Wanted someone who might be able to pick up any subtle nuances which could be connected with the ankylosing spondylitis.
I have so many feelings going through my head today. I worry about putting Kat through all this. I know I shouldn’t be having these thoughts at the moment and it’s not helpful and I’m not in the right state of mind.
My walk was quite nice though painful and exhausting.
Spoke to one of my best friends on the walk on the phone. I didn’t tell him about my ankylosing spondylitis but we did talk about other stuff and it was great to catch up.
Anyway I wanted to remind myself of this because when I came off the phone I realised my back wasn’t hurting. Incredibly this continued for a good 5 or 10 minutes even after we had finished chatting.
It shows the importance of friends and what a profound impact they can have on your life, even to the point of pain relief, however temporary.
The rest of the walk back was ok but I’m going to put some cream on and possibly lie down when I get back. The rain started absolutely pelting it down and got soaking wet but didn’t really care. It was oddly refreshing.
My sister is kindly asking if I want to have some sessions with her Pilates tutor over Zoom. It’s so generous of her but I don’t know what to say because of the moment it feels like the last thing I want to do. I can’t imagine moving any of my limbs more than 45 degrees without triggering medieval pain, not in a billion years.
At the moment I feel like I want to die. Not because I’m unhappy (I’m very happy) but because the constant pain is so exhausting.
It was nice having lunch with Kat she’s being very kind at thoughtful.
She got me some ibuprofen which I took after I’d finished eating the usual eggs, mushrooms and salad.
Felt pretty exhausted after lunch so went upstairs and lay down for a bit. Work is a struggle today. I need to get this thing sorted and get out of my head.
I lay down for about 30 minutes and mainly looked up zero starch recipes and ways of killing that bacteria which is supposed to be the problem.
When I got back into the office I found that gutheroes domain that registered about 10 years ago.
After work I’ll get that set up on a web host and start writing an ‘About Me’ page. I think the key with this one is to start writing the content and pushing it online rather than spending any time designing the thing because that can always come later.
Maybe I can also treat this as a way of monitoring my diet and working out what works and what my pain symptoms. Hopefully as well as helping others it would be a useful record for me to show the doctor when I have my appointment in August.
Finished work at about 8 because the AS pain had put me back so far today.
As soon as I finished I scoured through the Kick AS wesbite.
Reading some success stories on there I realised that I really do need to eliminate dairy for the foreseeable future.
A few of those people reported having AS symptoms AS while eating dairy. It sounds like this bacteria can feed off it as a secondary food source where starch doesn’t exist, so I’ve got to give this a serious go.
Just a few hours ago I was saying that this thing is so painful and tiring that sometimes I don’t want to exist but just been speaking to another friend as well and making some plans to hang out.
After having two nice points of contact with two of my closest friends today and after reading some positive stories about AS and after taking some painkillers and the sun coming out everything seems a lot brighter and rosier.
The rest of the day was a mixed bag. My back is still hurting and that’s despite taking ibuprofen which was so effective last time.
I told Kat that I needed to cut out dairy and she was frustrated because there is loads left in the fridge. I made a deal with her that maybe I continue eating it for another week and then we cut dairy out completely.
I’m half regretting making that deal because it it’s causing me a lot of pain and seems crazy to carry on with something just because you’re worried about waste.
Dinner was really lovely but it had parsnips in it and I know that’s definitely a starchy food so I’m a bit anxious about that.
I did feel myself flaring a bit as I was sitting there but I don’t know whether this is psychosomatic response.
I need to print off a proper list so we know exactly what I can and can’t have.
Didn’t stay up terribly late tonight and made sure I put some of that heat rub on my back before going to bed.
A difficult day for my back today and it got me feeling down.
I meant to send work a message about my chair. I think the best one does seem to be that Herman Miller Aeron Posturefit one.
It’s my least favourite looks-wise but to be honest it’s the only one that multiple people with ankylosing spondylitis seem to recommend so I think that makes sense.
Anyway that’s it for today’s rants. Hoping I’m going to wake up feeling better tomorrow.