Anklosing Spondylitis – Tips to Manage the Pain

I moved to London about five years ago and in my first week there, I had to hobble my sorry-arse to the hospital. Wasn’t quite what I had in mind for the beginning of my new exciting life.

It happened one afternoon when I felt this incredibly deep ache in my butt cheek that radiated down my leg. I’d never felt anything like it and was terrified it was the early stages of some kind of paralysis.

The doctor in Hammersmith Emergency said it was probably the long flight from Sydney or lifting my pack the wrong way. He said he could tell by the way I was sitting that it wasn’t anything serious. He said to me that at 24, no pain is serious (brilliant doc right?). 

So the old wise doc gave me some hardcore painkillers and whaddayaknow? The pain completely disappeared after a few days. Thank fuck that’s all over, I thought to myself. 

Nope! You guessed it. It wasn’t over. For the next two years the same debilitating pain would appear out of nowhere and then disappear into thin-air again. It reoccurred monthly. Sometimes fortnightly. Eventually it was accompanied with severe stiffness between my shoulder blades too. It got so bad I couldn’t roll over in bed at night without crying from the pain.

My friend recommended a guy. A Mr. Not a Dr. After a home deposit in cash was wasted on Mr. Charlaton (chiropractor) three times a week for almost a year, multiple X-rays and CT scans, I finally insisted on an MRI. I was so lucky that the radiologist told me they could see bone marrow odema leaking in my SI joints because the dodgy chiro couldn’t see shit. I gave up on him after that and began the search for a decent rheumatologist.
It takes a while to find a specialist who will listen to you and until you do, you may not get a proper diagnosis. Eventually I found a rheumatologist who knew exactly what to look for. 

  • Family members with inflammatory diseases such as crohns or psoriasis. TICK
  • Positive result to HLA B27 marker in blood test. TICK.
  • Sacroilitis. Inflamed and deteriorated SI joints. TICK.
  • Stiffness that goes away the more you move. TICK.

Anklosing Spondylitis. I finally had a name I still can’t pronounce after years of not knowing. I could finally read forums and manage my disease with drugs and exercise. Wooohooooo problem solved right? Not entirely.

This last week I have had some new pain. It’s partly my fault because I got a bit lax with my drugs and exercise. It’s in my chest and I’m about 95% sure it’s costochondritis (linked to AS). It is really fucking unpleasant, kind of feels like I imagine angina would. Ibuprofen isn’t helping very much. 

I am currently in a very hot bath drinking a beer and writing this blog because nothing else seems to be working. Reading other people’s stories has helped me so much over the years and despite my current mood, I know that I manage my pain quite well usually. 

I want to share with others what has worked for me in managing the arsehole-mother-fucker-beast-of-a-disease, Anklosing Spondylitis.

  • Find a doctor you like and who gives a shit. If you’re doubting your doctor then it’s time to find someone else. Ask a GP you trust to refer you to a good rheumatologist. It takes time to find the right doc. Ditch your dodgy chiro.
  • SWIMMING. Oh my god. If you can be fucked, swimming is the absolute best medicine. I am currently lacking motivation but for a while there I was religious about freestyle and breaststroke and I was seriously pain free. I was going almost every day. It moves your whole body and there is no impact. Please try swimming before you give up all hope. Even if you get in a heated pool and stretch your whole body and do a half-arsed doggy paddle for 20 minutes, I guarantee it will help. Try using flippers too.
  • MOVE. I know it’s the last thing you feel like doing but if you dance like a freak, stretch your body and wiggle about in weird ways while you have a hot shower, you will feel better. Not ideal when you’re trying to sleep but sometimes it’s a good time filler while you wait for the pain-killers to kick in.
  • Heat. Hot water bottles, wheat bags, hot bath, hot shower… Get those stiff joints warm!
  • Tiger balm, deep heat, Chinese oils… I love those burny ointments. Get someone to rub them into your sore spots. The smell also relaxes me.
  • Voltaren gel. This has helped me sometimes. Get the expensive one that has anti-inflammatory stuff that absorbs through skin.
  • Epsom salts. These bath salts are really cheap at supermarkets and chemists and they contain magnesium. Pour it in a hot bath or soak your feet in some. It relaxes your muscles when they get all spasmy.
  • Tumeric. Mix with some milk and knock it back because it’s a brilliant anti-inflammatory. Or just start eating curries if that’s your thing.
  • Ibuprofen with codeine (nurofen plus) just don’t get addicted and try other stuff too. Don’t just sleep and take drugs like these because you’ll get other health problems. *Cough* depression *cough* obesity.
  • Enbrel. If you’re like me and your diagnosis is on the worse end of the scale AND you have an amazing rheumy who wants to help you, then you might be a candidate for these amazing bio drugs. The Australian gov helps some patients to pay for them. Ask your rheumatologist. I am supposed to inject myself in the leg with these once a week but sometimes I forget because I often forget I have the disease these days. They change your blood to stop inflammation. THEY ARE AMAZING.
  • Avoid cold and damp. Every time I go somewhere cold or it’s rainy and wet, I end up feeling the arthy all over again. If you can, try live where it’s warm and sunny.
  • Stretch your butt. There is an amazing stretch I do to ease that horrible ache in the SI joints. Lie on your back and cross one leg so the side of your foot is resting just above your knee. Pull that knee into your chest as far as you can and hold. Switch sides. Favourite stretch.
  • Lastly, try to stay positive. I know, easier said than done. I spent a lot of time being depressed. I remember breaking down to my GP who asked how I was sleeping. He asked if I couldn’t sleep because of the pain or because I was depressed and I sobbed like a maniac. BOTH! I cried hysterically. You will have days that feel like your 29 going on 96 and life is nothing but agony. But there are other days you will be ok. You will be able to feel gratitude for the things in your body that work properly. You’ll be grateful that it’s not cancer and keep moving. You will keep trying new things to feel better.

I hope reading my story helps someone on their AS journey. The dodgy chiro did say one thing to me that I haven’t forgotten. He said no one will ever be able to FEEL your pain. Only you will know what it feels like so it’s up to you to try make it feel better. 

I hope you start to feel better soon. X

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Forgive me.

From the moment we realise that consciousness exists outside our own squishy heads and inside the skulls of others, we want to be included. Small children are brutally honest because they don’t have experiences of rejection under their belt just yet. That whole empathy thing is still developing. I rejected kids and I was also rejected. I think I need to get over it.

When I was about ten, I was bullied. That word makes me cringe. Bullied. How weak I felt being a “victim” of “bullying”. I still remember the day that my very last friend turned on me. They joined the others in their endless taunting. I don’t blame them. They had to fold eventually. The cards were stacked against me and there was a massive risk they were going to become a “victim” too.

I changed schools after that. It’s funny though because I kind of always felt like I must have deserved it. It must have been my karma. I pondered over events that had taken place beforehand (within my ten years of life experience that is). Two really vivid memories come to mind to reinforce that I had it coming. Times when I behaved badly towards other kids. Oh the shame.

The first one. I was six. I had fallen off my bike over the weekend and grazed my knuckles right down to the bone. Mum had bandaged the wounds but they were still tender come Monday morning and so she promised to check on me during little lunch.

When she arrived at school, she began to chat with the teacher on playground duty. For some strange reason, I felt this sense of anarchy grow inside of me, knowing that my mum was here and the teacher was no longer in charge of my actions. I felt like I could do anything I wanted and I was on the lookout for mischief. My inner nutcase was coming to the surface.

I ran over to the sandpit where Sarah was digging a ginormous hole and kicked her mountain back into the crater. Sarah was heartbroken. All her effort was being destroyed by my impetuous kicking. She looked up at me, her eyes desperate.
“What are you doing?” She cried, “I am going to dob!”
“You can’t!” I laughed, “My Mum is here! HA HA!”

In my memory, it’s like the Attack of the 50 Ft Woman. I don’t know what came over me that little lunch. I am still doing good deeds to make up for my outrageous attack on Sarah’s crater.

The second one. I think I was seven. I’d like to pretend I was younger but I was evidently old enough to understand basic economics. The root of all evil. Probably a bit worse than destroying the sand crater.

There was this beautiful old tree at our school. The roots were long and windy with little pockets underneath them that we imagined were our bedrooms. Our group claimed the tree most lunches. We played Mummies and Daddies and used the fallen branches to sweep the dirt. Someone was usually the boss of the group; on this day (and possibly many other days) I decided it was going to be me.

It’s vivid. I remember Ellie walking over to us. She was sucking on a red Zooper Dooper. She asked if she could play too. I went to preschool with Ellie and never liked her. She smelt. So on this day when she asked to join us, I wondered what could be in it for me. I mean, I was the boss of the group. Ah Ha! I thought impulsively.

I told Ellie that everyone here had already paid an initial 20-cent joining fee in order to play in our group. I even got a friend to back me up. She was suspicious but clearly our game of Mummies and Daddies around the big old tree had a price. I took the 20-cent coin out of her sticky hand and purchased my own red Zooper Dooper.

The guilt of this event still haunts me. I have seen Ellie in the street. We are both 28 years old and yet I am sure she remembers. I am sure she hates me to this day. Maybe I can pay her back… inflation acknowledged.

I really like being a grown up. When you’re a kid, you don’t like someone because they smell. When you’re an adult, you ask yourself why somebody smells. You can consider the pangs of guilt you might feel in your stomach before you destroy somebody’s work or take somebody’s money. You can remember how much it hurt when someone rejected you and try to be kinder for it. I guess I am glad I hurt others when I was a child. I try really hard not to now that I am an adult. I hope that Sarah and Ellie can forgive me. Maybe it’s time to forgive myself.

Note: All names have been changed in this story (purely out of fear and guilt).

I expect you to be normal. My version of normal.

To expect is to assume that something will work out a particular way. That the stars will align and things will unfold as normal. The dilemma here is that everybody has their own version of normal. What we think of as normal is part of our indoctrination. We are brainwashed by our country, our parents, our siblings, our partners, our friends, religion, the news, social media, television… Did I mention religion? We are shaped by the repetition of words and ideas that surround us.

I was disappointed recently. Disappointment takes you by surprise. It usually happens to me when I am oblivious to an expectation that I had. That old “normal” predicament. My expectation tricked me. I expected someone to behave a particular way. I expected somebody to be my version of kind. A lot of people think that they’re kind. There are a few versions of that too.

Someone who I really admire always tells me not to have expectations and therefore no disappointments. I think that’s rubbish. At the very least you have to expect to breathe. Who wants to live life with mediocre expectations anyway? How boring. I expect to breathe today and maybe pump some blood to vital organs. What a dull life.

While mum is expecting, we expect in the womb. We have expectation-loaded tantrums when we are babies. We expect our parents to provide for us as we grow up (and then some). We expect our teachers to care about us when we go to school. We expect our bodies to work properly. We expect to fall in love. We expect that when we smile at someone, they will smile back. We expect to be treated with empathy. Our version of empathy.

Love is shaped by expectations. Well, my version of love anyway. I expect people to love me. I expect that someone will be interested in my words. I expect hugs. I expect that if I am sick someone will care for me. I also work hard giving those things before I expect them in return. How can love exist without expectations? When we give, we expect something in return. When you give food to a homeless person, you expect it will provide them with fullness right? Not metaphorical fullness. Just plain old full-belly fullness. That the food will do what food is supposed to.

Having zero expectations is not possible. Catching public transport, going to work, having a life, living in this world, it’s not possible to completely surround yourself with those who share all of the same expectations as you either. Unless maybe you start a cult.

I guess all you can do is invest emotions in people who share your expectations and try to focus on those relationships rather than the ones that don’t match up so well. It’s also ok to be disappointed sometimes too. I mean, some people just have a really fucked-up version of normal. Well my version of fucked-up anyway.