Doing the Sums

⚠ Warning ⚠
I’m not feeling well at the moment so this isn’t a particularly fun post.

Like living with a chronic illness, this post is a result of a culmination of little things. Hearing a colleague describing a flare that had me off work for a couple of weeks last year as “he’s got a bit of a bad back” or a different colleague telling me that he was unable to put his socks on yesterday because he pulled his back. (I’m feeling a bit guilty about my reply that this is my standard setting and the reason that I wear “invisible socks” that only cover my toes and heels.)

Thinking about it, it’s probably more a reflection on how well I disguise the true effects of Ankylosing Spondylitis. The medication and stiff upper lip together helps to show that having a disability doesn’t necessarily mean that you’re completely out of the race. But it takes its toll.

Ever wonder why I jokingly turn down social invites? Sure, part of it is that I’m actually quite antisocial (but I’ve learned how to fake interest for work purposes). And another part is that I’m an introvert working in an extrovert’s job (again, I’m a bloody good actor!). 

Body Beautiful

This is a post that I’ve tried to write three or four times over the last year. It’s a difficult one to cover as it’s opening up more than I usually do. This is not however a post asking for sympathy, just a way to explain a bit about some of the “invisible” effects of AS.

A couple of my friends have posted on Facebook about body image in the gay community. It’s one of the things that I don’t think gets talked about enough, actually men’s body image isn’t talked about in general. We talk about the impossibly high standards set for women (and we absolutely should, they’re often ridiculous) but men are kind of left out of the discussion.

All in the Genes (WYASO Day 5)

Last year (to the day exactly) I wrote about the signs of AS and mentioned that one of the signs is having a family history of AS. And in particular one called HLA-B27. In my post I gave a brief overview of what it meant, but I found a much more detailed explanation while I was looking around for something else. It’s called “The ramifications of HLA-B27” – it’s an entry in the Journal of the Royal Society of Medicine so it’s rather technical. (I think I managed to understand about 1/2 to 2/3 of it, but it looked detailed and the parts that I understood looked accurate as I understand it.)

Basically, the upshot is, if you have some of the symptoms of inflammatory back pain then your doctor can send you for a blood test. (If you’re a white Brit) You have an 8% chance of having the HLA-B27 gene. Only 1.3% of the people with the HLA-B27 gene have Ankylosing Spondylitis. (That’s a 0.00104% chance of you having AS and being HLA-B27 positive by the way – we’re rare, although some call us special…)

Flares and Scares

Something that you’ll read a lot about in the websites and text books, and you’ll hear from your rheumatology team and other Ankylosaurs is the word flare. That’s not flair (which is how we live our lives anyway), and neither does it mean that you set off fireworks (although on days like today I feel that we deserve a parade)! No, it’s when one or more of your symptoms flares up and reminds you that your immune system is a big mean meanie.

The symptoms of a flare up varies between Ankylosaurs. Actually, it varies between flares as well. Sometimes it’s more back pain (when the normal dosages don’t work). Sometimes it’s pain down one or both legs, particularly in the buttocks. It could be an increase in fatigue, uveitis, or neck pain. One thing’s for sure – you’ll know it when you get it!

Catch-22

I’ve been quite lucky with my Humira injections, although I’ve had a few infections and bouts of tonsillitis and I get my fortnightly two-day hangover, it means that I can be fully functional most of the time. I’m able to work, get around and generally live life. The injection really does make a difference. (It could be psychosomatic, but I can feel myself getting stiffer and more achy as I reach the Thursday/Friday before my injection day).

And that’s where the invisible part of the illness comes in. I’m very open about my Ankylosing Spondylitis and try to educate people as much as possible. But they see me functioning well and I’m not sure that they realise what a knife edge we Ankylosaurs skirt.

Take this last couple of weeks, I’ve been really busy at work (we all have), so I’ve been turning to plastic spoons to keep myself upright. It’s working, and I only have a couple of weeks to go, but it’s still not ideal.

#keepinitreal – Day 7

And here we are, the final day of #keepinitreal week. Andy and I have arrived in Chorley ready for my cousin’s wedding party. It was a beautiful trip down as the sun shone all the way from Newcastle, right through Cumbria and down until we arrived. Then the heavens opened and I was reminded that I was in the North West!
But tonight is when Facebook and my friends get to see one of the rare times that we go out and have fun. I can only manage about an hour or so before I end up stiff and in pain. So we have to stop every time we head down, Tebay is a nice place to drop into on our way and that’s where today’s photo was taken.

I’ve taken my tablets, done my exercises, rested and it’s not injection week. I’m as ready as I ever will be to have fun, let my hair down, and celebrate with my amazing cousin! I hope that you’re all going to have a fun, relaxing and great bank holiday weekend too. 

Disability Top Trumps (Belated #keepinitreal Day 5)

I’ve heard the phrase “Disability Top Trumps” quite a lot recently and it confused me for a while. I didn’t understand how someone could compare one condition with another. I was also confused by the idea of comparing one person’s experience with someone else’s. Different people cope with the same stimulus in different ways.

That’s something that I try to avoid in my posts. I really hope that I’m successful in it, and I want people to know that this blog is about my personal experience. Having joined a few AS support groups and forums etc… I know that I’m very lucky. I’m on the right treatment and have built a number of coping mechanisms (many of them without even realising that they’re coping mechanisms).

There are a lot of people with AS who can’t work. That doesn’t make them lazy, or me any better than they are. It just means that they’re affected differently. As I’ve been talking about in my #keepinitreal posts, a lot of people with invisible illnesses will hide the challenges – especially on social media. In fact, I’d say that pretty much everyone tries to show their best side.

#keepinitreal – Day 3

I’m functional again! Just another 12 days until I go through it again… But until then, I’m off to work. Because of the way I’ve felt,  I’ve had a couple of days off my exercises and I’m now feeling rather stiff (the result of not doing my physio). 
I’ve also spent a lot of time over the last couple of days resting, lying in bed listening to Big Finish Dr Who audio plays and trying not to make my head or stomach work. So I should be full of energy. But the reason that I’ve been resting is because I’ve been having a fight with my immune system – so that’s not going to happen! 

Thankfully, I stopped at the shop on my way to work and bought myself some plastic spoons. I know that it’s not healthy, so please don’t bother to tell me. I need to be able to function fully for work, so I supplement my energy levels with caffeine. 500ml of energy drinks on my way to work (it also helps to take my meds) 2-3 large Americanos with extra shots through the day and another 500ml energy drink in the afternoon. 

I’m hoping that these #keepinitreal posts are helping people to understand that there’s a lot more to appearing normal than you might think! 

#keepinitreal – Day 2

Normally on day 2 of my injection I’ve got a really busy day planned at work. So I drag myself in, do as much as I can, and then leave early. This week I planned a quiet week so that I could update a load of stuff and just try to catch up with my admin. 

Yesterday (like every other post-injection day)  was spent moving from the sofa to bed for a few hours and back again. This helps with the headache and stops the nausea from becoming actual sickness, but isn’t great from an AS viewpoint. It means that my spine has been slowly stiffening all day and it lets me know the following day. 

So, I’m rather stiff this morning and the headache and nausea (while definitely less than yesterday) is still there. I’ve let work know that I’m not 100% and I’m going to try to sort myself out. If I can get the nausea settled then I can do my exercises, and as the headache is now a stabbing pain rather than throbbing and stabbing, paracetamol should sort it. 

Don’t worry about it though folks, the first day of the #keepinitreal week just fell on the worst day of the fortnight – I’m sure that it’s not *all* going to be doom and gloom. I do have good days! 😁 

Let It (Pokemon) Go!

I’ve seen this picture by Pawel Kuczynski on Facebook a few times recently, he’s an amazing artist and I really love the concepts that he covers. It’s part of a series of images drawn as a satire on the modern world. Satire’s great, and to be honest it’s one of the things that has helped me through the complete shit-storm that has been 2016.

But satire is a form of comedy, it’s supposed to be a mirror on the world that makes you think. And I think that this does. But do you know what I don’t think Mr Kuczynski was trying to do was to create art that people would use to make themselves seem or feel better than others. I have seen people posting this because they’re not one of the “sheeple” that have joined in with the worldwide phenomenon that has been Pokemon Go!, the people who think that they’re somehow better than others because they’re not following the herd.