That’s not a challenge! (WYASO Day 2)

There 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…

#keepinitreal – Day 7

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. 

#keepinitreal – Day 3

I’m functional again! Just another 12 days until I go through it again… But until then, I’m off to work. Because of the way I’ve felt,  I’ve had a couple of days off my exercises and I’m now feeling rather stiff (the result of not doing my physio). 
I’ve also spent a lot of time over the last couple of days resting, lying in bed listening to Big Finish Dr Who audio plays and trying not to make my head or stomach work. So I should be full of energy. But the reason that I’ve been resting is because I’ve been having a fight with my immune system – so that’s not going to happen! 

Thankfully, I stopped at the shop on my way to work and bought myself some plastic spoons. I know that it’s not healthy, so please don’t bother to tell me. I need to be able to function fully for work, so I supplement my energy levels with caffeine. 500ml of energy drinks on my way to work (it also helps to take my meds) 2-3 large Americanos with extra shots through the day and another 500ml energy drink in the afternoon. 

I’m hoping that these #keepinitreal posts are helping people to understand that there’s a lot more to appearing normal than you might think! 

#keepinitreal – Day 2

Normally on day 2 of my injection I’ve got a really busy day planned at work. So I drag myself in, do as much as I can, and then leave early. This week I planned a quiet week so that I could update a load of stuff and just try to catch up with my admin. 

Yesterday (like every other post-injection day)  was spent moving from the sofa to bed for a few hours and back again. This helps with the headache and stops the nausea from becoming actual sickness, but isn’t great from an AS viewpoint. It means that my spine has been slowly stiffening all day and it lets me know the following day. 

So, I’m rather stiff this morning and the headache and nausea (while definitely less than yesterday) is still there. I’ve let work know that I’m not 100% and I’m going to try to sort myself out. If I can get the nausea settled then I can do my exercises, and as the headache is now a stabbing pain rather than throbbing and stabbing, paracetamol should sort it. 

Don’t worry about it though folks, the first day of the #keepinitreal week just fell on the worst day of the fortnight – I’m sure that it’s not *all* going to be doom and gloom. I do have good days! 😁 

#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! 

#keepinitreal

One of my Facebook friends (who lives with ME/CFS and I have so much respect for) posted this yesterday and it inspired me to get back to the keyboard.

Believe it or not, the biggest issue I have with being a big bent Ankylosaur isn’t the pain that travels around my body – finding new and interesting places to raise its head, the fact that I buy pretty shoes because I spend half of my life facing the floor, the tiredness and fatigue that I experience by pushing my body to carry on when it would really rather stop or the fact that I know every two weeks I’m going to wipe myself out with my immuno-kryptonite for a whole weekend. It’s trying to fit in. The blog post that Kerri linked to talks about the assumption that people make when they see a picture of people with chronic illnesses having fun, and how they jump to assumptions that you’re “cured” or “clearly not as bad as you claim to be”.

I’m really lucky, genuinely. I’ve never had that claim made against me, but then again – with medication and the aforementioned immunosuppressives – I’m able to work a full time job. There are lots of people out there who can’t. But I use all of my energy to do so. My evenings consist of coming in, collapsing on the sofa and napping while I listen to the radio. Every other weekend is consumed by dealing with my Humira hangover, and the weekend where I’m not – I either get to spend some time with Cassie (who always makes me smile), or I veg out at home *actually* trying to relax.

Putting on a happy face is important to me, it would be easy to let my AS define me (and it does to a large degree) but I don’t want it to control me. So I push myself, smile, and when most people ask how I’m doing I’ll say “fine thanks, and you?” like a good Brit should. Please don’t take that to mean that I’m cured, there is no cure for AS. It just means that I’m managing, and that looks different to every person living with a chronic illness.

So I’ve decided that this week I’m going to be a bit more open. I’m going to be #keepinitreal for seven days with a picture and a short (yes, I do know how to do short posts!) update on how I’m *really* feeling. I’m not looking for sympathy, or any sort of fuss, it’s just a way to record what my life is living with Ankylosing Spondylitis.

If you’d like to join in I’d really appreciate it, and I’d genuinely love to see how you’re doing. Feel free to co-opt the #keepinitreal hashtag from Kerri (and look out for it on Twitter, Facebook, Instagram, elsewhere on WordPress, and anywhere else you can think), I’m sure that she won’t mind! And if you’d like to read one of her books then you can find her on Amazon as Holly A Harvey.

(Oh, and just a heads up – it’s injection night tonight so tomorrow’s not going to be pretty!)

Let It (Pokemon) Go!

I’ve seen this picture by Pawel Kuczynski on Facebook a few times recently, he’s an amazing artist and I really love the concepts that he covers. It’s part of a series of images drawn as a satire on the modern world. Satire’s great, and to be honest it’s one of the things that has helped me through the complete shit-storm that has been 2016.

But satire is a form of comedy, it’s supposed to be a mirror on the world that makes you think. And I think that this does. But do you know what I don’t think Mr Kuczynski was trying to do was to create art that people would use to make themselves seem or feel better than others. I have seen people posting this because they’re not one of the “sheeple” that have joined in with the worldwide phenomenon that has been Pokemon Go!, the people who think that they’re somehow better than others because they’re not following the herd.

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).
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!)