Wednesday, 15 February 2012

My first 9 months of AS

2011 sure was a memorable year for me but mainly for the wrong reasons. I knew I always had back and sleep problems after a hip issue back in 2002 but never thought it end up with me being diagnosed with ankylosing spondylitis.

For those of you who are not aware what Ankylosing Spondylitis is I’ll first start by giving a brief overview

Ankylosing’ means fusing together and ‘Spondylitis’ means inflammation of the spine. So when you put these together I’m sure you can guess that whoever suffers from this condition could be in a lot of pain.

People who suffer from this condition can encounter some or all of their joints and bones in the spine to fuse together (which is a worst case scenario, but most people usually have a partial fusion usually in the pelvic region which causes restrictive movement).

This is a painful rheumatic disease that mainly affects the spine but can have implications to other parts of the body (including other joints, tendons, ligaments, the eyes, lungs, bowel and the heart!)

This condition usually is more prevalent in men but women can also suffer from this condition. This condition usually strikes people in their late teens and twenties. It is most probable that people who suffer from this condition would have had this condition long before it is diagnosed.

So I’ve given a very brief summary of Ankylosing Spondylitis (there is a lot more to this condition though) and please see below my journey and thoughts over the last 9 months since I have been diagnosed with this condition:

Back in April I thought I needed to improve the range in my back so I tried Pilates, after an hour session with the instructor she said ‘the good news is your core muscles are there, however your back is locked and you need to see an osteopath’

So with this in mind I booked an appointment and found that my Private Healthcare would pay for the treatment, so I thought ‘excellent, I won’t have to pay any more than my excess for 8 sessions’. I needed a GP referral so off I went to my doctor for the referral only to be told ‘no I’m not going to do that.’

He was concerned with my lack of movement and said ‘you’re going to have x-rays on your spine and blood tests instead of an osteopath referral’. Which I did not expect to happen that day! I started to worry about what was up with me and had even worse insomnia than usual because of it.

The x-ray and blood tests confirmed I had Ankylosing Spondylitis and for some weird reason I found myself happy that I had a diagnosis as I had a fair few visits previously to various GP’s with various aliments and was starting to worry I’d become an hypochondriac. Seems that was not the case as they were all possible symptoms of AS and that annoyed me somewhat that no link had been established previously….

Instead of just having to deal with this I found myself with 2 other pieces of bad luck. Firstly I found myself living in an un-safe flat and at the same time was put at risk of redundancy at work – they say bad luck comes in 3’s but that was ridiculous. Not sure how I got through that period of time, possibly I’m a stronger person for it but who knows.

My GP referred me to a Rheumatologist and in August I had an appointment with them – I had been doing some ‘googling’ of the condition and kind of knew what the Rheumatologist would say but it was good to see that what I had found was right.

More x-rays and blood tests ensued and a referral to the Physiotherapists also happened, I had been reading about a charity in the UK called the ‘National Anykylosing Spondylitis Society’ who had branches throughout the UK and made some enquiries about the sessions that the Brighton branch did.

Quite anxiously I went along to my first session and found everyone there really friendly and also somewhat pleased to be able to speak to other people who suffer from this condition. The session I attended was a gym session which had 2 physiotherapists in attendance running through stretching exercises. After the hour session I knew I would ache and hurt a lot the next day but it was worth it and try to go to as many sessions as possible now (including the hydrotherapy sessions that they run.)

One thing I really have noticed since having this condition is trying to get ‘well’ people to understand that I have an incurable condition as the majority people cannot understand it and I’m normally met by ‘well there must be a cure’ and do not believe me when I tell them there is not.

The other thing I seem to encounter are the ‘well you don’t look ill’ looks and thoughts of people I speak to or see me. That one is really hard to get my head round and explain…

I have a lot of people say to me ‘why are you ok with having AS?’ to which I say ’I’m not ok with having AS, but I’ve got it and it will not go away so what is use to make an issue of it’. Suppose this approach has developed from my hip issue when I lost all use of my left hand side and had to learn to walk again. So having experienced no mobility, in my mind restrictive movement is better than none at all.

Don’t get me wrong I wish I did not have it. I would love to be able to have more than 3 hours of uninterrupted sleep each night and not feel like I’m 81 (not 31) every morning I wake up but that is life.

I try and lead as ‘normal’ life as possible and luckily for me I still have some range but I have found myself changing my lifestyle, I used to love going to music gigs and festivals but since being diagnosed I’ve reduced the amount I go to, cancelled going to 2 festivals and limit the amount of time I spend standing up. I’m aware of it but hopefully it has not changed me too much.

I do find when people around me complain of a bad back and see me they automatically apologise which in a way can be nice that they know how I feel for a few minutes at least but there is really no need. Or sometimes I jokily say ‘welcome to my world’.

I find myself having good and bad days, the bad days are hard to work through but I’ve always got the hope that the following day or the day after that will be a good day. I do not want to be classed as a victim I suppose.

Luckily I have some good friends who now understand what I am going through and offer a supportive ear when I need to unload some thoughts, one of them recently said ‘now I get why you leave early on a night out and never make a big deal about it’. I now joke to people saying ‘I’m a male modern day Cinderella’. Also from time to time, I need my own reflective time and find myself either sitting or walking on the beach lost in my own thoughts which also helps.

I know there is no cure and I will gradually get worse but I’ve finally accepted that and have the approach of ‘if I don’t live for now what chance do I have for the future’

Thank you for reading this and I hope that this has given you some understanding of this condition. From time to time I’ll add to this



  1. Matt,
    Hang in there. I was diagnosed at age 28, and my rheumatologists said it was one of the worst they had ever seen. I was always athletic and took great care of my body, so I was shocked and overwhelmed with the diagnosis. You're right - although it's a chronic, very serious condition, there is a degree of peace in finally getting a diagnosis.

    I am now age 50, and was diagnosed with SLE lupus in 1997.

    I learned it was important to keep moving, and that swimming is the best. Water aerobics is great for AS. My rheumatoligists are very pleased that I have continued to swim and be active.

    Yes, there were times when I could barely do anything at all. But now it is usually pretty manageable. If I sit too much my joints hurt more, but if I stand or walk too much, my feet hurt.

    It sounds like you are active, so keep it up.

    There are many articles online about having chronic illnesses but looking good. I look completely normal and like I work out. In some ways, that's the way I want it. But when people want me to go hiking or snowshoeing, etc., I can't. Also, I grieved quite a bit about not being able to go skiing. I'd always loved skiing, and was told I should never ski again. :(

    But...I found out I LOVE sea kayaking! It is something I'm able to do if I keep the distances to a minimum.

    So I'd like to encourage you and know that you will be ok, especially if you continue to move around and exercise. I'm not sure if you've found the right meds yet, but keep working on it.

    Please be encouraged, as I had one of the most severe cases and it's hard at times. (In the beginning, it was extremely hard!!) You will find the right meds, supplement (for me it's fish oil and flaxseed oil).

    Also, sugar creates much more inflammation. Harvard Medical School (and others) have done some research on it.

    Another thing that helps is counseling. I am a counselor now, and I've received a great deal of counseling as well. EMDR was tremendously helpful, and my immune system really settled down after I went through some intense EMDR with a certified EMDR counselor. (Be careful, as not many of them are certified.)

    Feel free to email me if you have any questions.
    (Notice my email address - yes, there is hope!!!!)

    Take care,


  2. Hi loved your blog! I have had AS for 40+ years and i think factors such as age of start of AS, when it was DX ie the longer ago, the poorer the initial treatment was and the results tend to be more extreme. I liked your spaghetti story, I have smashed vertebrae 3 times, so I understood what you ere describing, plus my bones have now become weak - between the metal work I have in my spine, some vertebrae fused, some not and now osteo, the last break was just bending down to pick something up and heating the crack!I have a bracelet with name, DOB (for hospital records) AS and message to take care vulnerable spine, in case I am on my own and have an accident. Jackie x

  3. I am really enjoying your blog! I seem to see so many facets of my own story. I was only a few months past my 30th birthday when I woke up one morning with painfully swollen eyes thats were diagnosed as iritis. WIthin weeks, I had a firm diagnosis of AS and have spent the last 4 years learning all that I can about this disease without a cure. I appreciate your story and the fearless way that you tell it. Cheers. :D