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 … Continue reading All in the Genes (WYASO Day 5)
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! Continue reading “Flares and Scares”
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.
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. Continue reading “#keepinitreal – Day 7”
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. Continue reading “Disability Top Trumps (Belated #keepinitreal Day 5)”
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 … Continue reading #keepinitreal – Day 3
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 … Continue reading #keepinitreal – Day 2
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. Continue reading “Let It (Pokemon) Go!”
When I was looking for more information on the Spoon Theory I found out that, what I thought was a nice analogy and cute story, was actually more contentious than putting the milk in first. (Just to clarify, that’s not contentious, it’s just wrong. Listen to George Orwell, he knew that back in 1945!)
There are (believe it or not) discussions about who’s “allowed” to use the Spoon Theory. Everyone agrees that it’s OK for people with Lupus to use it, Christine Miserandino herself has Lupus. Because Lupus is an autoimmune disease almost everyone agrees that they’re covered. Most people are fine with it being used to describe the fatigue symptoms that a lot of people with chronic physical disabilities experience.
There are a few different ways to measure AS, X-rays and MRI scans can measure fusion, blood tests can measure the results of inflammation. A range of measurements can check the impairment of functionality on things like turning and bending.
But there’s not always a correlation between them and the effects of AS on the individual. Sometimes people will have a flare even though their inflammation markers are well within the normal range. And vice versa, some people can go through a very active phase of inflammation without experiencing much pain. Fatigue is another one that’s difficult to measure. Are you feeling tired because you’re doing too much, or is it that your AS is more active? What’s your base level of tiredness and sleep patterns? Continue reading “How Long Is A Piece Of String?”