⚠ 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!). Continue reading “Doing the Sums”
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. Continue reading “Body Beautiful”
Last weekend was Pride weekend in Newcastle upon Tyne (where I live). A time to celebrate diversity and raise awareness of the LGBTQIA+ experience. To continue the fight towards equality and acceptance.
Over the last couple of months I seem to be experiencing a lot more discussions around sex, gender and sexuality. Recently I’ve read comments from a friend about the Asexual experience, spoken to colleagues about Trans and non-binary issues. A completely separate Facebook discussion around the extension of the LGBT acronym finally gave me a concrete jumping off point for this post.
There’s so much I want to say on this that Facebook comments and discussions just aren’t enough. (Plus, FB decided to reload the page while I was in the middle of a long reply and wiped the lot – so stuff you Facebook!) Continue reading “Alphabet Soup”
After the recent attacks in Manchester and London the Prime Minister has pulled out her dog whistle and is blowing as loud as she can about the Human Rights Act. Again. The idea of changing the law to make it easier to prosecute suspected terrorists is tempting. But when it’s introduced by a government that has been challenged multiple times on its human rights violations against the most vulnerable people in society, I worry.
Let’s look at the concept of human rights for a second. These are the basic rights that we as a society agree that ALL people are entitled to. By planning to deny basic human rights to anyone we are basically saying that a subsection of society aren’t going to be treated as human beings. In fact, the Human Rights Act covers a few basic precepts.
Continue reading “Only Human “
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…) Continue reading “All in the Genes (WYASO Day 5)”
I talk a lot about getting the right team to support you. I’ve been seriously lucky since my diagnosis as my local NHS put me with a fantastic rheumatologist, who in turn arranged for me to see an amazing Specialist Nurse. (She’s so amazing that she even won a national award!)
I was referred to hydrotherapy (the best treatment I’ve found to date – if it’s available then I highly recommend it) and physiotherapy. My GP listens to me and takes on board my opinions, providing options and keeping me involved in everything including medication.
I know that I’m lucky, and I really appreciate everything that my care team does for me. I also know that not everyone is so lucky. If you find that you aren’t getting the support you need, tell them! Continue reading “The A-Team (WYASO Day 4)”
Almost every source on information for AS stresses the importance of exercise in helping to improve the symptoms of Ankylosing Spondylitis. In fact the NASS website has a whole section dedicated to it. They also went out and made an app that you can download. The thing that I love about the NASS approach is that it doesn’t specify one individual exercise, unlike some newspaper articles that I’ve seen.
(I saw one a couple of years ago that described a famous Ankylosaur and said that he ran 9/10 miles a day and did 1,000 sit ups, just to prevent him from ending up in a wheelchair. It did the rounds again in March when he moved to a new TV show and needed a dramatic tagline. Who said the Daily Express, Mirror, Daily Star, and the Sun weren’t quality newspapers?) Continue reading “An Exercise in Mobility (WYASO Day 3)”
There are a lot of challenges out there around the internet. Squats, Ice Buckets, Planking and some really scary ones that I don’t even want to get into! But one of the first that I can remember was the 30 Day Song Challenge. There are various iterations of this but I think I’ve chosen one that should give us some variation and hopefully keep people guessing! Yesterday, I added an extra in (as May has 31 days). But this is the version that I’m going to be using this year.
This means that Day 1 is today (2 May, just to confuse you all) and so I need a song with a colour in the title. The team colour for the Orange Apples is (not surprisingly) orange, because that’s the colour used by the National Ankylosing Spondylitis Society. But I didn’t want to be so obvious so today I’ve opted for The Presidents of the United States of America and Peaches…
Continue reading “That’s not a challenge! (WYASO Day 2)”
It’s that time of year again, it’s 1st May and Walk Your AS Off has started. This means that you can expect to hear me bleating on about Ankylosing Spondylitis a bit more regularly than usual, as well as keeping tally of my Steps to add to my team’s total.
Walk Your AS Off is an annual event for Ankylosing Spondylitis. Although the official AS Awareness Month is April, I mostly conflate WYASO and AS Awareness, rather than stretching it into two months. As well as raising awareness we compete in teams, against teams all over the world. It’s a friendly competition, but still, it’s there.
And as if that wasn’t enough – we also try to raise funds. I’m a member of a group called the Orange Apples who raise money for NASS (the National Ankylosing Spondylitis Society). So, if at any point this month you’re feeling a bit flush and you want to help out a small charity that’s doing a shed load of good work, feel free to go to the JustGiving page or straight to the NASS Shop and make a purchase or donation. Continue reading “WYASO 2017”