I’ve spoken a lot about moving, exercise and physiotherapy. And I stand by my advice to speak to your specialist and physio for dedicated exercises to help you if you’re a fellow Ankylosaur. But what if you’re not? Or what if you’ve let your exercises slide? NASS (the National Ankylosing Spondylitis Society) have created an app for that. It’s called Back to Action and it’s rather good. I mentioned it last year, but I think that it’s something that needs revisiting every so often to remind people. Android users can find it on the Google Play Store. iPhone users have … Continue reading Oh Appy Day
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?”
Fatigue isn’t just “feeling tired”. Everyone feels tired at some point. It’s coming out of the other side of tired. It’s feeling your muscles aching constantly. It’s fighting to keep your eyes open and not even having the energy to smile. I’ve described it before as that feeling you get when you have the flu. Imagine having the flu for years, sometimes decades, and then think about how tired you’d feel. *That’s* fatigue.
Christine Miserandino wrote a fantastic analogy for fatigue in people with chronic illness. In it she tells the story of a meal with a friend where she used the spoons from the tables around her to demonstrate energy levels and how fatigue makes it dwindle faster. It’s called the Spoon Theory.
It’s a great read for those who aren’t aware of it and is an eye opener for those who haven’t considered it. The theory helps you to think about the effects of daily life on people with a chronic illness. Every activity has a cost in spoons and each one will whittle away at your store. For people with chronic illness this means that every activity needs to be considered.
As most people with a chronic condition will tell you – there are good days, bad days, and days where things are manageable. In fact, the fluctuations in the day can be huge too. First thing in the morning is usually one of the worst times for people with AS, and I’m a stereotype on that front. NASS realised this (what a surprise!), but they also realised that it’s not always easy to explain to someone how you’re feeling. Especially for us Brits. The correct response to the question “How are you?” is “Fine thanks.” So they’ve made a set … Continue reading The Good. The Bad. And The Meh.
There’s a lot of info flying around the Internet about the Ankylosing Spondylitis diet. The idea behind it is that you can cure it (bollocks!)
or improve symptoms by changing your diet (I can see that might be possible…). NASS have a whole page dedicated to AS and Diet that is very informative and I would highly recommend reading it.
It’s a great idea and is actually based on a scientific hypothesis rather than things like the Paleo Diet which uses the magic of the ancients or some such drivel to cure everything that affects modern man. (From what I understand of it, the concept is that Paleolithic Man didn’t have to live with rheumatological diseases, cancer, dementia and the like. So if we eat like them then we won’t either. The proponents of this always seem to forget that Paleolithic Man didn’t live with them because he was usually dead….)
I suppose you could try to improve the efficacy by dancing around the garden in a loincloth and then heading out to hunt a woolly mammoth with a whittled spear you’ve made. Just make sure that you have understanding neighbours! Continue reading “You Are What You Eat”
I’ve written a lot about inflammation in most of my posts. But I’ve just realised that I haven’t covered what inflammation is. Generally it’s a good thing, it’s one of the immune system’s shock troops, parachuting in to deal with foreign bodies swiftly while the body creates a more specific way to prevent illness.
There’s two stages to the human immune response, the first is called innate immunity and includes inflammation. The second stage is called adaptive immunity. This is the one that you get vaccinated for. Adaptive immunity creates high strength antibodies that deal with specific attacks on the body. The difficulty with this is that it takes some time. Continue reading “An Inflammatory Post”
Today is World Ankylosing Spondylitis Awareness Day and I’ve been thinking a lot about disability and defining what it means recently. The Equality Act 2010 uses “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” But this is a very generic definition. There’s a more detailed document available to download, from the .gov.uk website. But I decided to look at how AS affects my day to day activities and see if I think that it has a substantial effect on my life.
The usual caveat applies here. This is entirely my (very) subjective experience. There are people who have it much worse than me, and people who live with AS without any noticeable effects. This post isn’t supposed to reduce anyone’s experience, or belittle them. We all have different thresholds for pain and discomfort and it’s vital that we recognise this in each other.
But on to my definition. Firstly we have to think about day to day activities. What would be a day to day activity? Well how about getting dressed? First thing in the morning my spine is rather stiff, moving to bend over or twist around is quite difficult and painful. This means that I have to contort myself to be able to do simple things like putting on socks (that’s done behind my back with my foot resting against my bum, leaning against the bed) or tying my shoes (second step on the stairs, doing a kind of lunge).
Continue reading “Defining Disability.”
I hope you all know by now that May is Walk Your AS Off month, dedicated to raising awareness of Ankylosing Spondylitis. But I don’t just think of it as raising awareness of the people who are living with it and diagnosed, I think that it’s more important to raise awareness to the people who have it and don’t realise it.
Looking around the interwebs I found this article, which is quite useful. It helps put the idea of AS as a chronic, degenerative, autoimmune condition that primarily affects the spine into real world terms.
None of these are 100%, they’re just indicators that something is wrong. If you tick off some or all of these signs go and see your doctor for an actual diagnosis. Even after showing all the symptoms for a very long time there was still some doubt whether I had Ankylosing Spondylitis or Scheuermann’s disease. The five signs that it mentions are: Continue reading “I saw the sign…”
1. The illness I live with is: Ankylosing Spondylitis. But like most people with auto immune conditions, it’s not alone. I’ve also had Reynaud’s for about 20 years as well as mild IBS (inflammatory not irritable).
2. I was diagnosed with it in the year: 2014.
3. But I had symptoms since: I was 17 (that’s 18 years for anyone who wants to do the sums…)
4. The biggest adjustment I’ve had to make is: Admitting my limits and living within them. There were LARP events that I went to in my younger days where I actually overdosed on painkillers (as a word of advice, 18 dihydrocodeine in the space of 8 hours is a bad idea boys and girls…)
5. Most people assume: That I have a back condition, not realising that it’s actually an immune system issue that affects my back.
6. The hardest part about mornings are: Everything until I’ve had the chance to get moving!
7. My favorite medical TV show is: Doctor Who. (What!? He’s The Doctor, the definitive article, there’s only one of him!) Continue reading “30 Things About My Invisible Illness You May Not Know”