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. Continue reading “#keepinitreal – Day 7”
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. Continue reading “#keepinitreal – Day 6”
I’ve heard the phrase “Disability Top Trumps” quite a lot recently and it confused me for a while. I didn’t understand how someone could compare one condition with another. I was also confused by the idea of comparing one person’s experience with someone else’s. Different people cope with the same stimulus in different ways.
That’s something that I try to avoid in my posts. I really hope that I’m successful in it, and I want people to know that this blog is about my personal experience. Having joined a few AS support groups and forums etc… I know that I’m very lucky. I’m on the right treatment and have built a number of coping mechanisms (many of them without even realising that they’re coping mechanisms).
There are a lot of people with AS who can’t work. That doesn’t make them lazy, or me any better than they are. It just means that they’re affected differently. As I’ve been talking about in my #keepinitreal posts, a lot of people with invisible illnesses will hide the challenges – especially on social media. In fact, I’d say that pretty much everyone tries to show their best side. Continue reading “Disability Top Trumps (Belated #keepinitreal Day 5)”
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! Continue reading “#keepinitreal – Day 4”
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 … Continue reading #keepinitreal – Day 3
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 … Continue reading #keepinitreal – Day 2
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 … Continue reading #keepinitreal – Day 1
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 … Continue reading #keepinitreal