Since my very early 20s (which means nearly 20 years) I have had ankylosing spondylitis, a progressive rheumatic condition which is not only very painful but affects your life in so many different ways. You become afraid to plan anything because you know you might be having a bad time of it, and that bad time might last for several months. Then you get better periods as it’s a cyclical condition – it’s still no fun but you can do more and life is less of a challenge. In the background though you’re still taking too many anti-inflammatories, and whilst easing the pain, in the background they’re buggering up your stomach and that’ll cause you grief for the rest of your days. And all through this you’re having a “regular” check up with your specialist – regular meaning every 6 months if you’re lucky.
A few years back (it’s on other pages of this blog I won’t bore you again!) I was put on a rather nasty drug normally used for chemotherapy. This did nothing for my condition and left me feeling like shit most of the time. At this point I started to lose hope because if this is all they’ve got, life will only get worse. But then, some hope appeared in the form of a new drug. My specialist was very keen to take me off the previous drug and put me on the new one. Normally used for rheumatoid arthritis, it was showing good effects on AS patients too. Did I really want to inject myself with it every fortnight? No not really. Was I willing to give it a try? Not half. And so it started. Eighteen months on, I’ve had no nasty side effects. I still don’t like doing the jab, but it’s one of those pen things so it’s just something I grin and bear. And… despite it being an incurable condition I feel normal. Completely normal. About the only thing I can highlight is that I still can’t walk long distances because it jars my hips. But I can cycle for ever (well, about 35 miles in one go to be precise, I’ve done several charity rides) and everyday life is pretty much as if I was 19 again, except without all the drinking and waking up in strange houses. I dare say some of the occasional aches and pains I get are because at 39 I’m just plain getting older!
I’m rambling. I know. Sorry. Where is this going you’re wondering (and possibly begging)? The question is, should I have had some great feeling of epiphany, you know, life has been transformed, should I be taking up base-jumping or something? In my position would you be planning mad things, or would you just be grateful that normal life has returned? In my situation I’m just feeling grateful of the chance to be normal again. For all I know the drug may start causing side effects I can’t handle. Maybe my funding will be withdrawn (the drug costs about £15,000 a year apparently). Maybe it will just stop working.
What would you do? Appreciate riding a bike and not being in pain, or would you be bungie jumping every weekend? I’d be interested to hear in the comments below or on twitter (@timallenphoto).
Thanks for reading. I can’t give you your two minutes back I’m afraid 
My Gallery- Look over there…St. Omer in France, which had a feel of Brugges about it. I can't remember what they were looking at…
- Flick that hair…I took this in Dymchurch a while back as part of our exhibition project 'Wish You Were Here'. Some good fashions on display here.
- Shoreditch pole dancer.I took this shot ages ago but discovered it tonight whilst printing some photos. There's nothing amazing here but I got the guy just where I wanted him in the shot. Graffiti by the excellent Stik (http://www.stik.org.uk/).
- Look over there…
I too suffer from AS, affecting daily “normal” life. I have been wanting to just be able to wake up and feel normal again for months. What inject able did they put you on.
Hi Phil, it’s Humira, there’s more info about how it’s been going on this blog. Hope you get some good treatment soon.
So pleased for you. I hope it keeps working. I don’t think I’d go down the base jumping route in your position. I think I’d just enjoy the fact that I could do normal everyday things like everyone else. Makes me feel very guilty that a lot of what restricts my day to day life & enjoyment is being overweight which is no-one’s fault but my own. Go Tim!
Hi mate, I think you’ve really been making the most of being pain free for the first time in years and doing many of the things you used to enjoy that were off limits to you for all that time. Obviously, things like your cycling and camping spring to mind – both of which were out of the question before you started on the Humira. I can understand that, having suffered with something that impacted so badly on your quality of life, there will always be the fear that it may return in the future, for whatever reason. However, you are currently only on a low dose, so there would be scope to increase it in the future if it became necessary, and you have tolerated it well for all this time, so I am really hoping it will continue to relieve your symptoms for many years to come. As for funding becoming an issue, those responsible would find themselves with a VERY angry mob on their hands, were they to even *think* about withdrawing it!!! As for whether you should be doing even more to make the most of your newfound freedom, I think that really boils down to whether you *want* to be bungee jumping every weekend as, unless it’s something that you’re particularly keen to experience, a list of goals to tick off can become more of a pressure than a pleasure, which is not what it’s about. If there are any things that you’d always thought you might like to do but dismissed because of your AS, perhaps you could now start looking into / planning for them, as you have been. Mainly, though, I’d say just relax and continue to enjoy it!
We are so thrilled for you, long may the ‘wonder drug’ continue to work it’s magic. Lots of love, Vic xxxx
My rheumatologist is pushing insurance to allow me to be on Humira, but I am wondering the side effects, namely hair loss. Can anyone comment about their experiences with hair loss? As a male in my late 20′s, I need to hold on to all the hair I’ve got!
No side effects to speak of so far I’m pleased to say.
Hey,
My name is Jessica/27/recently diagnosed with AS. I have been suffering for years. For the last 7 months, I have been on Methotrexate, also known as a bunch of miserable little pills that have no positive effect on me….and lots of negative. I spoke with the nurse at my doctors office Monday, who informed me that I will be taken off of this horrid little pill at my next appointment and move on to the next treatment option. I am hoping it helps. I have been thinking recently of starting a blog. There are not many out there regarding this condition. It is always nice to find someone who relates to the way I feel. I would like to give that to someone else.