Today is World Ankylosing Spondylitis (AS) Day 2016 (it’s the first Saturday of May) and after a bumpy ride this week with a few days in hospital, I thought it only timely to write a new blog post on What life is like with AS. I have blogged before about how I got here (please have a read before continuing), following my diagnosis of Spondyloarthritis in 2014, but I’ve never actually talked about the reality of living with this condition.
Before I continue I need to clarify my language. Spondyloarthritis (SpA) is the family name for a group of related conditions including Ankylosing Spondylitis (AS), Psoriatic Arthritis (PsA), Arthritis associated with Inflammatory Bowel Disease and Reactive Arthritis. I have a diagnosis of Spondyloarthritis as the doctors are unsure if I have AS or PsA or both! People stress about not knowing which one they have, but to me it’s all quite irrelevant. Shakespeare nailed my view exactly in Romeo and Juliet (II, ii, 1-2)
Juliet: “What’s in a name? That which we call a rose
By any other name would smell as sweet.”
Or in my case, it doesn’t matter what you call it my immune system is broken, it’s attacking me, my joints are fusing and permanently swollen, it hurts, it impacts the quality of my life, I’m always tired and the treatment is the same! Oh and unlike a rose, it is not sweet!
What I do know is my spine is fusing. That means all the tiny vertebrae are becoming one rigid spinal bone. I ask everyone to take a look at this short video to see the nature of how the disease progresses and just how your spine can become a single bone and the stress fractures that can result.
So what is my life like with this disease?
I was 35 years old when I was diagnosed, but my money’s on the fact I have this from when I was a small child. The first time it made me cry, I was 5yo and unable to perform as a Snowflake in my first ballet concert production of The Snowman. My ankle was so swollen and sore I was placed in plaster cast (something that would not be done today as movement is key). The second time it crashed my world was May 1987 (you will note that theses events are so significant that they are locked in my adult memory). My left knee swelled so much I couldn’t get in the car and our family trip to France was cancelled. My life continued down a path of “random injuries” and “bad luck”, seeing lots of doctors and surgeons each just fixing the “injury” of the time. I constantly strived to exercise and stay in shape, but I just never could manage it before the next injury turned up. At 23yo I could hardly walk and had to have both knees cleaned of scar tissue, which thankfully solved my immediate problems, but came with no explanation of cause. Things took a very significant turn in 2011 when I was at my fittest and was running the famous City to Surf (Sydney to Bondi). 1km into the race I developed pins and needles in my arm. I assumed I had banged it in the crowds and ran the remaining 13km. Later that night I was in hospital having lost the use of both arms. I was terrified. I was in agony. I was annoyed that once again my attempt to be fit had been squashed. I had burst a disc in my neck and its gel like contents were now pressing on my nerves serving my arms, but thankfully it was 1mm from my spinal cord. 3 months off work and I was back trying to juggle my busy life, as a Business Process Improvement / IT Manager in the city and Single Mother to my then 4 and 6 yo children. In 2014 I went over a speed hump in a car park, ended up in hospital in pain and paralysed in my right arm, after yet another “unlucky” and seemingly small event, I found my way in front of a Rheumatologist, who instantly knew what was wrong.
Life until 2014 was full of injuries and frustration at the lack of explanation. This is all too common with this disease with the average time to diagnosis being 10 years from first onset of symptoms. The problem for me was that my the time I sat in front of the doctor, 30 years worth of irreversible damage had been done. My life now is very different. To give you a feel for what it is like in my shoes I’m going to list just some of the battles I face in an average day. This is a realistic not negative list, I am positive, determined and stubborn red head (actually it’s my battling-on character that probably caused me to go 30 years without diagnosis). Imagine if this is how you got up everyday:
You wake up so stiff you wonder how you will get out of bed, 2 hours later you can move
- The first steps are painful as you Achilles has been damaged by the disease
- You cant hold the toothbrush
- You conclude you will never buy Garnier Fructis shampoo again as they bottle is impossible to open
- You have to resort to attacking the banana for breakfast with a knife as you just can’t peel it
- You sigh at the thought of spending 15 minutes standing with the morning stiffness making packed lunches
- You arrive at school gates to be told “you look well”… Grr I’m sick on the inside and I am in agony. If only you knew how much pain I expended drying my hair today
- You go home to collapse but remember that is the worst thing you can do and start to mobilise the joints with your daily stretches
- You plan dinner, as the thought of doing it later in the day, just spells pain
Off to the supermarket, where you are greeted by only the large deep trolley. The one that involves bending over and placing the food all the way down there! Oh and then out at the checkout and then lifting the bags into the trolley the car and then home. (Its safe to say, the shopping gets put away the next day in my house)
- Whilst going round the shop you fight a trolley with its own mind with hands that just don’t grip and try to reach up and collect 1L milk from a high shelf. (I dont have the ability to lift 1L some days from in front of me.) You can’t separate the bananas in the bunch so just buy a whole hand in frustration.
- You come home and sleep. After all your body thinks it’s sick and you constantly feel like you have flu.
- Time for school pick up and you review the to-do list:
- Dinner has still not been made
- You didn’t hang out the washing as pegs are some kind of instrument of torture
- You didn’t whizz the vacuum around as you don’t whizz anything these days
- Now you have to go stand on the side of the football field for the children’s training.
- You arrive at soccer training to be told you are on the “oranges” this week. That’s it, enough is enough, you cry. You can not cut one orange let alone a whole team’s worth for half time. You want to contribute your share as a soccer mum, but you can’t. You apologise and decline due to ill health. At the back of your mind you feel the world looking at you and saying “but you look fine to me, must be lazy”. Whether people say that to you or not, that is how you feel.
I could go on, but you get the idea. If you take away anything from this, take just this one thing. People have Invisible Illnesses. They can be in a world of pain and you not see it. They will just carry on, no matter the pain, as that is our daily life. Do not tell them “they look well today”, they always look well.
Thanks for reading and learning, Karen
PS My wrists hurt from typing this and my back from sitting here, but the message must be heard!