This Has Been Bugging Me For Weeks

I’ve tried to write this post a few times. As a Twitter post, a Facebook update and as a blog post a few times, but I couldn’t think how to start it. Well, a couple of months ago I succumbed to something I’ve been resisting for years and I think it’s a good place to start. For those of you without a chronic illness this will probably be a “so what?” moment, and for those of you with chronic illness (especially team “My Immune System Hates Me”) this’ll probably be a “yeah, and?” post.

But, as always, this blog is about my experiences living with Ankylosing Spondylitis and since my 5m doggy paddle swimming certificate from infant school doesn’t count, I’m not qualified to give advice. So if anything in here causes you concern – go to your GP and get it checked!

As I’ve probably mentioned before, I’m vain. I’ve avoided walking aids (even though I know I need one sometimes) and instead used a variety of umbrellas to match my outfit. But at the moment I’m in pain. Lots of pain. So I ordered a stick.

I’ve started with a plain black foldaway one as I don’t intend to become reliant on it until I absolutely need to. But still, it’s a definite landmark in my AS journey, and today I thought I’d write about how I got here.

The “Rule of Six”

You’ll have to excuse me for this one, I’m writing it on my phone so it won’t have pretty pictures. It’s also going to be very plain speaking – there will probably be rude words and I’m not intending to edit it. I want to get the raw emotion across.

I’m sat watching de Pfeffel Johnson waffle and bluster through the new safety rules coming into effect. The new rules will be based on the “Rule of Six” (which – like all his catchphrases – he repeated so many times that I started to feel sick). And I’ve had a reaction that I didn’t expect. I’m literally in tears.

This idea that no more than six people can meet together at once is no protection at all. If I went out with 5 friends and then saw another group of friends who I wanted to catch up with, all I’d need to do is shout across or drop one of them a text to swap places. Off we swap and there we go – we’ve all been exposed to 11 other people. And with this pointless idea from a government that has refused to actually be proactive or firm he’s yet again said to the most vulnerable that he doesn’t give a fuck about us.

And once again he’s proved that he hasn’t learned from the past, this rule is going to be effective from Monday 14 September. Just like his lockdown announcement in February was on a Thursday, meaning that huge groups of people went out for one last bender over the weekend. And yet he follows the same pattern.

People have died from this virus. People are STILL dying from this virus. But the fucknuckle doesn’t care. He’s still pushing the groups with the highest increase in positive testing results back to school, college and soon – University. He’s still telling people to go back to the office. He’s still more worried about getting the economy back quickly than working on eradicating the virus quickly and then the economy will bounce back in a sustainable way.

Everything this wiff-waffing waste of time does is reactive. Everything the last 3 governments have done has been to line their pockets and those of their friends. Many of the current party were in role for the court cases around how they treat disabled people. And they were found to be regularly, flagrantly and knowingly committing human rights abuses.

I’m still in tears. And yes most of them are for me, I’m selfish. But some of them are for all of the vulnerable people out there who (like me) are terrified of being killed by de Pfeffel Johnson and Demonic Cummings.

Person, Woman, Man, Camera, TV.

TRIGGER WARNING: Mention of suicidal tendencies in the context of counselling/psychotherapy self assessment.

DISCLAIMER: As always, this post is entirely my own opinion and doesn’t represent the views of “The Disabled Community” as a whole. In fact, as I haven’t talked to anyone about this at all, I can’t even be sure if it reflects the views of anyone with a disability (apart from myself).

A lot has been said about Trump’s defense for bragging about his “amazing” score on the Montreal Cognitive Assessment. I’m afraid that I’m going to be adding my tuppen’th in too. In particular I want to look at it from two angles, the use of assessments in medical practice (with a focus on the AS and Mental Health side of things as these are where I have experience). The second thing I want to look at is accusations of ableism and review the way that I look at it (coming from a background of the Queer Politics movement in the 90s).

When Your Government Exacerbates Your Anxiety.

It’s 4am in the UK on the night that the bumbling oaf who’s currently playing at Prime Minister (badly) announced that the government will be enacting “shielding” for the people at “extreme risk” from Covid-19. Now, I know that I’m at increased/high risk, but I don’t know if I’m one of the 1.5 million extreme risk people.

So I went to the government website to check, and found only vague references to “some people on immunosuppressive treatments”. The upshot? I still don’t know. But it’s OK, like the rest of the country I’ll find out between Tuesday and the 29th March. By letter. Rather than list the specific criteria/medications they’re writing to the affected people.

Why does it matter!? I’d imagine that people will be thinking. Well, at the moment high risk groups are still able to live a carefully normal life. I’m still able to sit in the living room with my partner, we still kiss goodbye/goodnight. We’re able to share a bed. And I can get out to appointments or to grab meds/food etc as long as I’m careful. I can apply for jobs and try to get some sort of income coming in.

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Still Alive

I’ve had to pull away from social media again (I dipped my toe back into twitter for a little while). The world is pretty dark at the moment with politics, bigotry and hatred and it really isn’t helping my current state of mind.

But, rest assured, I’m Still Alive. And I’m going to try and get back to my networks again soon. (And a new blog post is in the pipeline too!)

AS and me.

I don’t write nearly enough posts for this blog, a big part of that is connected to my mental health at the moment. (And the purpose of this blog was never to be me whining about my head.) But another part of the reason is that my AS seems to be under control. I haven’t had a single flare up in at least a year. Sure, the general aches and pains are still there – but that’s manageable.

Looking back at my life before and after diagnosis, I can absolutely see a huge difference. Yes, every fortnight I put myself through a 2-3 day hangover. But balance that with the flares every 3-6 months and general levels of pain that I lived with for 18 years and its a small price to pay.

Yes, I’m lucky. And I know that I am. I can live a normal life with minimal adjustments, I can go to work, spend time with my family, walk the dog and generally live the nice boring life that I’ve worked hard to get. Not everyone is that lucky.

Now, I’m no marathon runner – there’s no way that I would be able to. I’m also limited in my movements, it can be difficult to get dressed sometimes and the fatigue can be overpowering – especially during the week. But this is my normal, and it’s a thousand times better than it ever was.

So today, on World Arthritis Day, I’d like to stand (hunched) in front of you all as an example. Not of how everything is perfect, or even great. But instead I’d like to be an example of how good enough can be good enough to enjoy life despite living with Ankylosing Spondylitis.

Doing the Sums

⚠ 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!). 

Body Beautiful

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.

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!