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.)

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…)

The A-Team (WYASO Day 4)

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!

An Exercise in Mobility (WYASO Day 3)

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?)

Shaken, Not Stirred

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.

All in the mind.

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)

Catch-22

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.

#keepinitreal – Day 6

I forgot to take a picture of my meds, but just for Faye here’s another sunny smiling photo!

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.

#keepinitreal – Day 4

We’re half way through the #keepinitreal week folks. Today’s a good day, I’m starting work a bit later than usual (as I’m in until 9) and so I’ve had time to let my tablets get to work, done my physio exercises without rushing and picked up my new suit. The shoes to go with it arrived last night. It was going to be two suits, but the second one didn’t fit my hump. (My actual chest size is 38″, I usually have to buy a 40″, but the salesman told me I’d need a 42″ in the style I wanted. That just looked huge on my waist – and they didn’t have any left in the beige that I ordered.)

Online shopping is great, but if your body varies from the standard there’s only so much that a tailor can do. It’s similar to the issue that women face with their arbitrary 12, 14, 16 etc…  type sizes. At least with men’s clothes it’s inches or cm. It’s the first time I’ve shopped online for a suit, and will have to be the last too.

But today however, the sun is shining (vitamin D is good for the bones), I’m listening to some happy music, and the new suit looks rather smart. I’m hoping that your day’s looking good too! 

#keepinitreal – Day 1

Day 1 of my #keepinitreal week, I took my Humira injection last night so it’s always the day when I’m feeling most sorry for myself. My stomach is churning and I feel nauseated. My head is throbbing and there’s the familiar stabbing pain behind my right eye running back to the crown of my head. You’ve probably noticed the headphones.  I’m not listening to anything, it’s to reduce the noise around me because my hearing is really sensitive on hangover days. 

So, if I ask to excuse myself because it’s my injection weekend, this is the reason why. It’s this injection that makes me functional for the rest of the fortnight! 

For Science!

Okie dokes. I’m afraid that I need to ask a favour. If you’re going to post shit links to articles complaining about Big Pharma, Big Agri and Monsato etc… you do all (hopefully) realise that I’m going to ask for evidence? I’ve just watched my home go down the toilet because “people are sick of hearing from experts” and I really don’t have time for that crap.

I also get *very* angry with the people who think that I can wish my AS away, or that breathing in some smoke from the magic ning nang nong tree while the cows are saying bong while eating some seeds and nuts from the gyre and gimble trees will somehow unfuse my vertebrae.

No, but do you know what demonstrably does work for hundreds and thousands of people around the world, and has been scientifically proven to improve the lives of more people than it doesn’t help? Medicine. Scientifically proved, tested and revisited medicine. NSAIDs, Painkillers, Immunosupressives. I haven’t been able to take my Humira injection this week thanks to a bout of Tonsillitis and a viral infection one after the other, and I’m feeling it.

I’m genuinely chuffed that one of my acquaintances from my misspent youth was diagnosed early with her cervical spondylosis (an non-rheumatoid osteoarthritis of the neck that’s traditionally treated with NSAIDs, exercise and self care techniques) and that she was able to treat it with alternative therapies. That’s not the case for all arthritis sufferers. I’m all for as many possible treatments as possible being available to give people choice.

But, if you post links to POS articles like this one (which wasn’t about medication, but just the general approach to science and chemistry), then I will challenge it. And if you or your friends reply by quoting something as inane and pointless as: “…this reductionist, western imposed, imperialist science that degrades and looks down on Mother Nature. This science does not represent systems of science from India China and Africa that are thousands years older and ones that respect the feminine.” Please note that I will laugh at you. I’ll then draft a reply (it might take a few minutes longer as I reread it to laugh again) and eventually, when I realise just how fruit-loopy you are, I’ll just remove you. (So if you want to save me a job please feel free to unfollow/unfriend.)