Kylie Frost’s blog
Hi I’m Kylie Frost. I suffer from a form of arthritis called Ankylosing Spondylitis. Inflammation in my spine and other joints is causing my bones to fuse together. The only way I can prevent this is to keep moving.
Two years ago I was almost in a wheelchair. I couldn’t walk very far and most of my muscles had lost all strength due to constant pain.
This October I will be doing the ASB Auckland Marathon. I am running on behalf of the New Zealand Arthritis Foundation to raise awareness for Ankylosing Spondylitis and funding to research better treatment and possibly a cure.
I won’t ask you to join me. But I will ask you to pull your wallet out and sponsor me as Intake on this challenge. Through hard work and sheer determination I will be at the start line and I will run over the Auckland Harbour Bridge.
Two days ago I felt on top of the world. I had lots of energy, my pain levels were very low and I had just completed a half marathon with no negative after effects. I was quietly confident that the new medication I started three months ago was having a positive effect. This was good news since it is a little over four weeks until the IronMāori Half Ironman. A 2km swim, 90km bike ride followed by a half marathon.
But by the next morning, the bubble had burst and my body made me feel like all of the dedication and training didn’t mean a thing. So why the sudden change? What went wrong? The weather. On Tuesday the sun was shining and it was a warm sunny day. Wednesday morning I woke up to rain. But no matter how I feel I cannot stop now.
I suffer from a form of arthritis called ankylosing spondylitis. Inflammation in my spine and other joints is causing my bones to fuse together. The only way I can prevent this is to keep moving.
Two years ago I was almost in a wheelchair. I couldn’t walk very far and most of my muscles had lost all strength due to constant pain. I would have been using crutches to walk, if I was even able to stand up. Now I try and push through it. I am running out of time to train for my half Ironman. Some days it feels like I am not making any progress. I have to constantly look at where I started and how far I have come. When I started this journey I had a very simple goal – to complete a triathlon and maybe raise some awareness for ankylosing spondylitis along the way.
Somewhere along the way the goal post moved. I am no longer doing this for myself. Now I do it to prove a point – to myself and to anyone else who suffers from a chronic illness. I do it for women like myself who were told they are imagining the pain. For every larger woman who was told they just need to lose weight. That ankylosing spondylitis is a man’s disease so they can’t possibly be suffering.
People who meet me today do not see someone with a disability. My ankylosing spondylitis is not under control at all, but I am in charge – sort of. Well, most of the time. I have now done three triathlons. I have also done a 12km traverse over the Auckland Harbour Bridge for Arthritis New Zealand, and numerous running races. Yes, you read that right. I can run. Wow! Even writing that gives me goosebumps.
Am I nervous about doing a longer race? Definitely. Do I think I can do it? Without a doubt. Not because I am cured; there is no cure for this disease. Not because the medication is working, but because I am too stubborn to quit. I refuse to let myself and my family down. Failure is simply not an option. I picked the IronMāori half for one very important reason: No strict time cut-off. That means I can keep going even if I have to crawl over the finish line.
It is 6 o’clock at night and I have finally finished work for the day. I head to the fridge to check what I can cook for dinner. In another life I was a chef and loved to cook. Now I dread it. Oh goody, mince again. Maybe lasagne? The thought fills me with dread. Not because it is a hard meal. More because of the difficulty I now have in making it.
First, the ingredients. The mince is easy. A knife will open the packet. After that it gets harder. The flavour mix isn’t too hard to open. (Flavour mix! I know, but work ran late and the kids are complaining they are hungry.) This time there is already a little tear in the package I can make use of. Holding my arms up to brown the mince is hard on my shoulders and standing in one spot is hurts. But dinner won’t cook itself.
The hidden ordeal of product packaging at dinner time
Next comes the pasta. I gave up on the bags a long time ago. Every time I tried to open them the pasta spilled all over the floor. Now, I use the big sheets in the box instead – easier to get out.
Then come the two jars of sauce. As a chef and someone who has to watch their diet, I know sauce in jars is really bad for me, especially as I am allergic to onions and most store brought sauces have powdered onion in them. I know I will suffer tomorrow but all the chopping, whisking and time involved in making sauce from scratch is simply too much now. I need to get one of the kids to open the jars. Occasionally, I can still do it myself but it isn’t worth the sore hands afterwards.
Finally the lasagne is in the oven and I grab a packet of store-brought salad – my husband’s favourite. Hmmmmm, where are my scissors? They have disappeared. One of the kids was using them, but when I ask, do you think they can remember where they are?
Oh well, no salad. Lasagne by itself will have to do. Without my scissors I simply cannot open the packet.
Editor’s Note: Accessible packaging is one of the issues Arthritis New Zealand advocates for in our 2017 election manifesto.
It’s amazing the small things in life that most people take for granted, like simply getting out of bed after a good night’s sleep. Or the jump-up-quickly-because-you-are-late spring that happens and the quick race to get ready for the day. Not the shuffle, roll and stumble that I do because my hips are stiff and my lower back is sore.
Or carrying a basket of washing down to the laundry because you are running out of clean clothes and you can’t put it off any longer. Being able to pick your husband’s dirty socks off the floor where he tossed them the night before while watching television. Reaching your arms up to hang the washing on the line to dry. Do not get me started on making the bed. That effort requires a 30-minute power nap halfway through if there is no one around to help.
I once created a list for my doctor of the simple, everyday things that I was struggling to do. I stopped writing after I had filled the second page. Have I ever told you how much I love my doctor? He went through each and every one of those items to work out why it was hard and what parts of my body were being affected. He wasn’t able to help but at least he didn’t treat me as though I was insane.
It’s not in my head
I do not know how many doctors have tried to tell me my pain is simply my mind playing tricks on me. Do they think I woke up one morning and decided this would be fun? They won’t actually come right out and say it but they drop hints. I am very lucky that I have a great doctor and a wonderful rheumatologist who do not act like that. In fact, the day I finally asked the rheumatologist if he thought I was imagining everything, I almost cried when he said it was an inflammatory response and very definitely NOT all in my head.
Learning to ask for help
Having ankylosing spondylitis has taught me many things. I was always shy and quiet. I never spoke up for myself and would never ask for help. Over the years I have found my voice, both in talking with doctors and by sharing my journey with people. I have also had to learn to ask for help when I need it. Simple things around the house like opening packets. I do not have enough strength in my hands so I get one of the kids to do it for me. Some days brushing my hair is difficult and my husband has to do it for me. Let’s just say he needs to practise – a lot! At one point I couldn’t climb up on a chair to get items from the top cupboards in the pantry. Instead, I now have a very long pair of tongs which is perfect for the hard-to-reach things.
As my physical strength has increased so has my ability to do things again. The other night I even managed to change the sheets on the bed. On my own! With no help!!! Sometimes miracles do happen.
Two years ago I left my rheumatologist’s office with nothing more than advice. No further treatment options were available. There was no magic pill to make my pain disappear. Over 30 years of searching for an answer and I finally had a diagnosis. I had a name – ankylosing spondylitis. But what good was a name if there was no cure? I didn’t qualify for biologics which might have helped and anti-inflammatories were not stopping the terrible flares I was having. The last one had left me almost bed ridden for two weeks!
The advice I had been given was to find a physiotherapist with a diploma in manipulative therapy. (Try saying that three times quickly.) I got home and straight away went online to see if there was one close by. I had no real confidence but I literally had no other options open to me.
Use it or lose it!
I found a physiotherapist attached to the local swimming complex. There was only one person in the practice with the qualification I was told to look for. So I made an appointment, not really expecting much. Over the phone I explained I had ankylosing spondylitis and to my surprise, he knew what it was. You would be amazed how many health professionals do not! The first appointment didn’t go very well at all. In fact he had a programme already written up that he ripped up and put in the bin. He gave me a very stern lecture about how much effort would be involved. I believe his words to me were, “No one can do it but you.” Years of taking muscle relaxants and constant pain had made my core muscles so weak. Simply tightening my stomach muscles caused a spasm within minutes. His advice to me was to do simple grade one exercises in the hydrotherapy pool next door at least three or four times a week as well as stretching and balance exercises every two hours every day at home. That’s right – every two hours. He said if I didn’t, I may as well give up now and go buy a wheelchair. The only positive thing was he could give me a pass to use the pool for a month at no cost.
On my first day in the pool, I loved it. The water was 37 degrees Celsius and the warmth felt divine. He started me simply walking up and down then we did some simple stretches for my ankles and hips. Then finally some arm exercises with a pool noodle. He made me promise to do no more than 20 minutes and to ring him the next day if my body reacted badly. He also strongly advised no swimming due to the lack of movement in my arms.
One Month On
My husband was training for his dive master’s qualification and every second night we would take the kids to the pools. I would do my exercises then watch the kids while he swam lengths. I had noticed my energy levels were a little better, my upper back wasn’t hurting as much and the numbness in my left arm had settled. Each session in the pool I added a little bit more. I was careful not to overdo things, but so far so good. I had even tried swimming in the wave pool which was also heated, mostly with a snorkel and mask at first due to the limited movements in my neck. Often I would also go to the pools early in the morning. I would be at the door at 5.30am. Getting up that early was really hard at first. But I found on those days my pain was less and I had so much more energy. I was so excited the day I got rid of the mask and snorkel and swam 750 metres!
The road to my addiction
One day as I was leaving the pools, I stopped to speak to a young girl at the front desk. I explained what I was doing and why. Somehow I mentioned that, years ago, I had looked at doing a triathlon but it had never happened. I didn’t own a bike and my ankles were so bad that walking was hard let alone running. She called over a manager and asked if she could give me a two-week pass to use the full gym facilities. I could try using some of the machines and the bikes and maybe a treadmill. By now I had been swimming for a couple of months and the idea sort of festered. Could I do a triathlon one day? It would give me something to aim for.
So I went home all excited and told my husband I was going to do a triathlon at the end of the year. I had found the Panasonic People’s Triathlon series that offered a short one. The trainers at the gym were going to help. Finally after all these years I was going to try and do it. Well that went down like a lead balloon! To say he was unimpressed is an understatement. He said there was no way he could ever support me doing something like this as he didn’t think my body would cope. He was scared I would be hurt. He wouldn’t even talk to me about it.
As the months progressed my swimming got stronger. I started going to the gym for 30 minutes first and doing some strength exercises and using the bike beforehand. Again I took things very slowly and carefully. I didn’t want to cause a flare. I still didn’t have a bike and I couldn’t run, but I was able to walk a lot more and occasionally I had moments when everything came together and my body would respond, allowing me to run. Not for long, but enough to give me hope.
Two years later
People who meet me today do not see someone with a disability. My ankylosing spondylitis is not under control at all, but I am in charge – sort of. Well, most of the time. I am now on my second bike. My husband caved in when he saw the positive effects the training was having on my life. He bought me my first bike that Christmas. I never did get to do the triathlon I was aiming for due to complications. I simply wasn’t ready. However, the following March I did a short triathlon and I have since done two longer ones. I have also done a 12km traverse over the Auckland Harbour Bridge for Arthritis New Zealand, and numerous running races. Yes, you read that right. I can run. Wow! Even writing that gives me goose bumps.
This year I am doing the ASB Auckland Marathon for Arthritis New Zealand (distance still to be decided.) I also entered the IronMāori Half in Napier. This is a 2km swim, 90km bike ride and a 21.1km run. My husband again was not terribly impressed when I told him about this one, but he will come around. He usually does.
I have a page on Facebook with 3600 followers, helping to raise awareness for this terrible disease. I still have bad days. Today was one – there are storms forecast and simply having a shower and getting dressed was really hard. But I now have a goal, a focus I am aiming for – the Taupo Ironman on 2 March 2019 (my birthday). That is my year; that is my day; that day I will call myself an Ironman. No, my husband isn’t happy about it but he loves me enough to let me try.