I wanted to talk about the emotional effect on being diagnosed and living with AS. I’ve had a couple of prompts over the last couple of days that have encouraged me to do this sooner rather than later.
Firstly, Karen wrote a fantastic post about how coming to terms with AS can be a lot like the grief process over on the Walk Your AS Off blog. I’ve also seen a few posts in the Facebook groups I belong to by people who are feeling at the bottom. Either because they were struggling to be diagnosed, get the right treatment, or just be able to function in the middle of a flare.
I also wanted to find a suitable post for this image from Instagram user Spondymom. I love it as the definition of AS can seem quite clinical and sterile, whereas the effects are definitely more noticeable. So let’s look at the definition and what it really means: Continue reading “It gets better.”
As you might be able to tell, this blog is mostly a stream-of-consciousness. I have an idea about what I want to talk about and I just type. I scan over it after I’ve finished, but mostly as a quick sense and grammar check. I also try to make sure that I’m writing in my own voice rather than in an artificial, formulaic style.
I haven’t re-read my posts, and I don’t plan to for a while. But thinking about the topics that I’ve covered and the bits that I can remember typing, I get the impression that it might come across as whingy, whiny, or moany. Obviously we Brits have raised the Generic Moan into an art form. Just ask any of us how the weather is!
But I started this blog to try to put across how living with AS feels. Hoping to help someone who has just been diagnosed, or to our friends, family, and supporters. Hopefully some of the people who’ve visited have found it useful or informative. But I don’t want people to think that it will definitely ruin your life. It only does that if you let it. I’m going to do a separate post on how it feels emotionally at some point, but I can tell you that it does.
Today I want to recognise a couple of things that I like about my AS. This is a happy post so I think we need a happy song:
This quiz did the rounds a few months ago and I really liked it. It explained a few of the quirks that I was aware of, as well as some of the subconscious ones that I didn’t even realise.
So pop over to the Arthritis Canada website and try the quiz. It’s only 8 questions and they’re multiple choice. Hopefully I’ve given you a bit of insight.
I scored 8 out of 8, but I cheated… I used my unfair advantage of knowing what it’s like. It would, of course, be wrong of me to help you to cheat. So don’t worry – I won’t tell you that the answers are C.
Now, promise that you’ll come straight back? (D’ya see what I did there? I made a funny! I’m wasted I tell you, wasted!)
Could you do me a favour please? If you’re looking at this from a computer, would you mind taking your mobile (that’s cell phone for anyone over the other side of the Atlantic). Now stand up and look at it while you hold it at stomach height. Let your shoulders slump forward and put your phone down.
Thank you. Now can you feel that pressure on the back of your neck? The heaviness of your head? The strain across your shoulders? I’m sorry, I know it’s uncomfortable but please bear with me – there’s a point coming…
Now, staying in that position stand up and walk around the room, you need to keep that bend in your neck even when looking forward. Again, I’m sorry that it’s uncomfortable, it might even hurt a little and I’m truly sorry about that. I know how you feel. Please get comfortable, shake yourself off, roll your head. Continue reading “I have an admission to make. I’m bent.”
There are lots of treatments that can help treat the symptoms of AS. I’m going to try to cover as many of them as possible eventually, but one of the things that I see the most questions about online are Anti-TNF treatments.
They’re also the drugs that have had the greatest effect on my life, so today I’m going to talk about them. Don’t forget, I’m not a doctor, rheumatologist or medical professional. I have a grand total of 9 GCSEs, an NVQ in customer service and a MUG award that I was given when I worked at Starbucks for being friendly :).
So please feel free to listen to my experiences, but never change your treatment without first speaking to your Rheumatology team. AS affects everyone differently, and you may (OK – probably) have have other underlying conditions. Our bodies are definitely different and so will be affected differently.
Right, remember back in my first post I said that my immune system is too good? Well, think of it as a superhero. Imagine Superman got bored because he beat all the bad guys so he started using his heat vision on people who chewed with their mouth open, or freeze breath on people who truly felt that Mandonna was better than Kylie. (I mean really!? Seriously!?) Continue reading “Immuno Kryptonite”
Today is May the 4th, and it’s an easy excuse to sit in front of the TV and veg out in front of a back to back Star Wars marathon. (I know it’s not just me that thought that!)
But that’s not a good idea if you have AS. Remember, your body is building more spine to replace the bits that your immune system has been attacking (you know, because it was bored, confused, or it just decided to throw a hissy fit).
Sitting down and relaxing is nice, we all like to do it. But it’s not good for you. When you sit your posture changes, and your body builds the spine in a shape that fits that. This is one of the causes of kyphosis. I did this regularly before my diagnosis and – if I’m completely honest – I still do now. Continue reading “Walk the Dinosaur”
Yesterday was World Ankylosing Spondylitis Day. I made a Facebook post for my friends to tell them more about what happens when you have AS. I also decided to make it public – what’s the point of raising awareness quietly? Then all of a sudden my phone went mad! I’ve never had anything spread like that before. After a day it had over 100 shares! (I know that’s not much compared to famous people or good writers and journalists – but I’m neither of those!)
Then people started to share it – which I was happy about – Remember, the whole point was to raise awareness. But some people were asking for blogs or webpages that they could link back to. I’ve started and discarded a few blogs in my life but that was my cue to start up again. And this is it!