All in the Genes (WYASO Day 5)

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.)

carolvordermanBasically, 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)”

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The A-Team (WYASO Day 4)

feature_NASSAward_2016I 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)”

That’s not a challenge! (WYASO Day 2)

30 Day Song ChallengeThere 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)”

WYASO 2017

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”

There Is No Spoon.

stockvault-labrador-dog-lying-on-pillows130868Fatigue 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.

Continue reading “There Is No Spoon.”

30 Things About My Invisible Illness You May Not Know

There was a meme that did the rounds for Invisible Illness Week. I’ve decided to resurrect it for WYASO month. (I’ve amended Q17 as we don’t have medical commercials in the UK.)

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).
20142. 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”

Walk the Dinosaur

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”