So what would you do?

Right, this may ramble a bit but I thought I’d jot it down as it might help somebody. Or it might leave you feeling you want the last two minutes of your life back, I don’t know, let’s see what happens.

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

Update – March 2010

Well then. Due to some strange tingling sensations all over my body I spoke to the hospital last November and we decided to stop the Humira to see what happened. I also had some dental work done which I thought was to blame but to tell the truth I’m still not sure at the moment. I’m now back on the drug after 4 months without it and luckily my AS didn’t flare up in the meantime. Apart from the odd tingles I still feel normal, as if I had been cured. This of course is not possible but the drug must be working as well as before. I’m going to get my blood checked again this week because something as simple as a B12 deficiency could cause tingles so I want to exhaust every avenue before blaming the Humira.

In general life is good, photography is coming along nicely and I’m still very busy at work, which is both mainly enjoyable and nicely lucrative. If I’ve forgotten something important I’ll update this post. I wish I could remember to update this more often!

Humira update – July 09

Just realised I hadn’t posted an update for ages to the blog that nobody reads

It’s July now and I still feel like a normal person – which is amazing considering how life was up until now. No pain to speak of, full mobility and a much bigger lust for life. I said that the proof would come when my next bad spell arrived, and how bad it was. Well it still hasn’t happened so I can’t tell you, which is of course great! With regard to my list of targets for the year, I’m right on track – doing a 36 mile charity bike ride in torrential rain was proof of how much better I am this year. Anyway, should the bad spell arrive I will post about it – hopefully it will be less bad than normal. As to the Humira – of course I hate doing the jab but it’s 10 seconds twice a month so I can’t grumble. Only side effect is a slight rash sometimes and so far I can’t praise it highly enough, it’s changed my life. Next year I plan to do the London to Brighton bike ride and I never thought I’d say that!

My goals for 2009 are…

I know this is a bit late but now I’m on Humira I feel I should have something to aim for this year. I love cycling for example, and would love to play snooker again. So without further ado, this year I aim to:

Complete the charity ride that my son, nephew and brothers did last year.

Ride to work one day (13 miles each way, and it’s hilly!)

Go on some proper long rides with my brother Keith.

Play snooker again with my mate Toby.

Really push on with my photography, especially portraits and urban decay.

Make some money from photography. Somehow!

Finally, just keep fit and able bodied where possible and happy.

In December I shall come back to this page and see how I got on…

First Humira injection done. What now?

Well the nurse was fantastic yesterday, made me feel totally at ease with the whole procedure and the injection was fine. So far a couple of times I’ve made the mistake of scratching the injection site which has made it very itchy for about half an hour, but it soon goes. Touch wood, so far so good. I wonder if it will help??

It’s arrived!

My Humira supply has arrived and is in the fridge. Hopefully the nurse will call soon and we can get injecting

So near…

Well last Wednesday my Humira was due to arrive, but of course the UK can’t cope with snow and my driver broke down on the way to me. Healthcare at Home have so far been brilliant though, very helpful and reassuring, and the drug should be with me this Wednesday instead, and the nurse will call this week as well. So fingers crossed next week may see me taking my first steps towards a slightly improved quality of life assuming that the Humira has some effect.

I wish I had something to report…

Well the pains in my side and back around the kidney area seem to have gone now I’ve stopped taking methotrexate, which is obviously a good thing. However, last week  I called the hospital to find out what’s happening with my Humira delivery date, and they never called me back. So this week I’ve tried again and there’s not even an answerphone this time! Gotta love the wonderful NHS. If I ever get hold of them I’ll let you know.

Update: Hurrah! Got in touch and hopefully I should get the call I need within a week.

January update

Well the new year is here but I’m still waiting to hear about my Humira supply. This post is more of a test of the iPod Touch WordPress really!

Further Humira update

Well I don’t have TB which is a relief They’ll check my x-rays but it’s a formality now, I just have to wait for the drug delivery company to contact me, and then have the nurse come round to check I’m doing it right. Slept better last night with less cramps, so hopefully the mtx is leaving my system for good now. Onwards and upwards!!