Rather than marking accessible seats on buses as “for people with disabilities/elderly” how about we label them as for people with limited mobility? What’s the difference I hear you ask? Disability is a huge umbrella term covering a multitude of issues that affect the person’s ability to complete daily tasks over a long period of time. Not everyone with a disability identifies as disabled. And there are a lot of people who don’t fall under the term disabled who have limited mobility, for example someone with a fracture or other short term injury. “What does it matter?” “Why are you … Continue reading Move to the back of the bus please.
⚠ 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”
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)”
I’m currently suffering from an ear infection. It’s rather painful (it feels like I’ve been bashed on the side of my head by a cricket bat). Don’t worry, it’s nothing serious. But when I first had it checked I was told it was viral. Acetic acid and Paracetamol should clear it.
Having visited my own GP when it didn’t clear, it turns out that it was bacterial and I was given antibiotics. I don’t begrudge the original diagnosis, with the over-prescribing of antibiotics and the risk of super bugs it makes sense. Nor is this a “poor me” post. Today I wanted to talk about drug cocktails, contraindications and interactions.
I’ve already discussed my Humira Hangover, but at the moment I’m rather achy (the weather changes really aren’t helping), so I’m taking my anti inflammatory, PPI, nerve inhibitor, and painkillers. (Yes, fellow Ankylosaurs and other Spoonies will probably recognise the list!) But I’ve had to add a couple of new tablets – the antibiotics and paracetamol. Continue reading “Shaken, Not Stirred”
I know, it’s been a long time since I posted. I’m sorry, but I’ve covered most of the big points around AS elsewhere in this blog, I haven’t had much to say.
But recently I’ve noticed an upswing in people who I care about going through emotional and/or mental difficulties. Alongside this I’ve found that more people with whom I work have stress/anxiety/depression and related illnesses. It got me thinking about chronic illness and mental health.
An estimated 28% of the UK population will experience a mental health issue each year. People with chronic physical illnesses are up to 7 times more likely to experience one than people without one. LGBT people come off slightly better with an increase of just 3 times (source: https://www.mentalhealth.org.uk/statistics) Continue reading “All in the mind. “
OK, Brexit and Trump have shown me something. There are millions more racists, misogynists, homophobes, religiophobes and general bigots in this world than I ever imagined.
Yes, it’s scary that Farage and Johnson won with the campaign aimed at the lowest common denominator. It’s terrifying that Trump’s going to be in control of a superpower on the same type of platform, the same bombastic, superior and hateful attitude to the different.
But do you know what terrifies me more? What makes me sick to the very pit of my stomach? That the millions of people who voted for that are out there. And who knows, might even be reading this.
Let me make this clear. If you support these people and their ilk then, whether you’re bigoted or not, you are supporting bigotry. And you’re helping to create a world where the rest of us live in fear. (A more detailed argument is elsewhere on my blog.) Continue reading “Hyperbole? “
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.