I’m 63 and I’ve had AS since I was 20. Yesterday my husband (of all 43 AS years) and I walked 10 miles of the Wye Valley Walk – the section from Ross on Wye to Fownhope – and very beautiful it was.
So if you’re young with AS, or just starting the AS journey – never think it’s the end of life as you know it – life with AS can be long and full and happy – here’s my story.
When I got married in 1977 I was young and fit and healthy; working fulltime for a bank and running a couple of miles twice a week. Six months later, I would crawl down the road, thinking I’ve only got to get to the next lamp post, I’ve only got to get to the next shop.
I was in agony. My back would go into spasms so badly I could barely draw breath. It sounds awful, but I put clean underwear and tights on at night, because I knew I wouldn’t be able to reach my feet in the morning.
I spent 18 months visiting my GP, going from, ‘Here have some pain killers and it will all go away’ to ‘There’s nothing wrong with your back – you just don’t like being married’.
We moved house, and I was forced to move GP surgery – After a couple of visits my new GP, sat me down, and – I remember to this day – he said ‘There’s something wrong with your back, and I don’t know what it is. I can refer you to Gloucester Royal, but I don’t think they’ll know what it is. There’s an old retired GP living up the road, he’s a genius with backs, I would like you to go and see him.’
On the third visit, this old GP told me he thought I had AS. A referral to Bath Hospital quickly confirmed the diagnosis. No one in my family had AS, but my mum had had sciatica for 15 years, 15 years of agony, of undiagnosed, untreated AS.
Both of us were treated with NSAIDs and for us they worked. I took one tablet yesterday on that long walk, but I don’t often need them anymore. Once I started to take NSAIDs regularly – AS for me at least settled down to a manageable condition.
From onset to diagnosis was a difficult couple of years, very difficult, but once treated it is manageable, you can get on with your life.
My spine is completely rigid to my neck, and my neck is stiff. I’ve probably got 50% of the normal range of movement. My back is straight and my hip joints are still my own. I can’t run or do impact sports but I can walk and swim and swing my grandchildren around and sit on their beds and read their bedtime stories (yes, during all this I had two children, both now around 40 and neither have any indication of AS).
Until the COVID19 lockdown I’d spend one day a week on a voluntary gardening site, doing pretty long hard work. Life is full and rich and I’m happy.
In my twenties I thought I’d be in a wheelchair by 30, now, at 63 I’m a great deal stronger and fitter than many of my non-AS friends of similar age.
So what would I suggest?
GPs need to know about AS and get early diagnosis and referrals – NASS is working on that.
If I’d done more exercise in my early AS years I might have more flexibility now, but I might not.
I would recommend swimming to everyone – especially back-stroke. Personally, I think it’s hard exercise in cold water that is beneficial – it keeps your joints cool as you work out. I’m an accountant now, I sit hunched over a computer for way too many hours, but back stroke is the antidote to hunching. I swim with short flippers and resistance gloves and when I get out of the pool I know I’ve worked every muscle in my body. It builds good shoulder and neck muscles, and, if you’re young enough to still care – a very nice six pack.
Join NASS, support NASS and when you’re in need, pick up the phone and call NASS – they are wonderful.
Jean is NASS Member and supporter. You can read her story in our upcoming Membership magazine AS News and join thousands of others by becoming a Member today.
