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?)
Running is a great form of exercise. Although it’s not for everybody, and in particular it *could* be dangerous for some people with AS. I know that we have people in various NASS member groups who run marathons, triathlons and the like. But that’s with medical advice. Running is a high-impact exercise and so might actually make things worse for you. Speak to your doctor, specialist – or the very best advice will be from your physiotherapist and find the best exercise for you.
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.
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”
Sorry I missed yesterday, I was writing a full blog post. That’ll be coming out tonight once I’ve got the images sorted (the mobile app isn’t ideal for images). I thought that today I’d talk about breakfast (OK, tablets and medications…)
As I’m sure that you know by now (and if you don’t then you’ve got a lot of old blog posts to read!), I’m on a treatment called Humira. It kills part of the immune system which helps to prevent it from attacking my spine. It’s amazing and is helping to prevent any further damage. But it doesn’t work on its own. Continue reading “#keepinitreal – Day 6”
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)”