The life of an acute pain sufferer

This is out of the ordinary for this blog but I have been wanting to write this for many years and finally got around to putting it on paper (or a keyboard as it were.) Many people have written about the everyday struggles of chronic pain sufferers, many of which I deeply relate to. Yet very few people have written about acute pain sufferers. The distinction between acute and chronic pain is the duration. Acute pain is severe pain that lasts for less than thirty days and chronic pain is longer term non-stop pain. Over the years I have had many people ask me to describe exactly what it is that I go through and so few are able to comprehend the full effect it can have on your overall quality of life.

So I am going to tell a story, right from the beginning of what has become normality in my life in an attempt to explain the daily life of acute pain sufferers.

It all began when I was eleven years old. Now think back to who you were at eleven. For me, I was in grade five, boys still had cooties, I played tiggy everyday during recess and I slept with my teddy bear every night (though would not admit that to my friends) and was on the cusp of adolescence. One night, I was sitting eating dinner, legs curled up underneath me, all excited knowing we had a surprise birthday party later that evening. In the middle of a tale my school day, with a mouthful of corned silverside in my mouth, I suddenly stopped, my breath caught in my chest, pain suddenly hit me so severely that I immediately doubled over as I felt what seemed to be something deep inside me quite literally twist in half and an intense pressure suddenly filled my abdomen. The pain was so specific and intense I could pin point the exact location, which happened to be directly over my appendix. I could not physically move my legs from my chest and the compulsion to hold them there was completely uncontrollable. I could not stop crying; groaning and I have never felt such fear. I was such a child and had never experienced a traumatic event such as this. That moment is etched in my memory to this day over fifteen years later.

I was rushed into hospital, and as I sat in the car I felt that twisted part inside me grow stronger and stronger until as if a red hot knife stuck directly into it and it exploded deep inside me. Little did I know, that is exactly what it had done. Then suddenly, as if a button had been flipped when I was laying, unmoving on the hospital bed, a doctor on his way, the pain significantly eased. The pressure was still there but I could breathe again, I was even able to very gently remove my legs from being pressed with every inch of my strength to my chest. Sadly, the doctor assumed the obvious and believed I was a child who had been exaggerating the situation. It took several hours of the pain hitting me in waves so intense it took my breath away and easing into various levels of comfort before a wave finally hit me when a doctor was present. I was taken into have tests and from an ultrasound they found large amounts of fluid, floating in my abdomen from an unknown source. Having determined nothing was ‘broken’ and my appendix was a-OK I was sent home. Over the next two weeks the pain was very slowly easing, day by day I began to feel better. I missed two weeks of school and walked a little bit more each day. Words cannot describe how painful attempting to walk was as it slowly began to heal. Three weeks after that horrible night I finally felt normal again. My family breathed a sigh of relief and we assumed it was a freak illness but all was OK and back on track.

One week later I was watching TV when it happened. I had partially convinced myself that maybe the pain wasn’t really as bad as I had remembered but when it struck again, I took back all of those kind thoughts, the pain was so strong it makes your eyes go black and your head spin, it hurts so badly your teeth throb, your fingernails hurt and you feel like you are going to vomit from it’s intensity. You lose all control over your body, it gets a life of its own and it is torturous. Once again back to the hospital, with the same tests determining, yet again there was fluid from some unknown source. This time they found what may have been an empty ‘sac’ on my left ovary but were unsure of its specific cause or effect; simply telling us not to worry as it was ‘harmless.’ We again began the agonising process of managing the pain and hoping it would go away as before.

Exactly four weeks later we were almost expecting it when the pain hit. This time, it coincided as the day I got my first period and we finally understood the link. Over the next year we explored every option available to us, I underwent ultrasounds at all stages of my cycle and we discovered some good and some very bad news. The good news was that we finally found out what was happening to me. It turns out every single month when I ovulated I grew large ovarian cists, sometimes on one ovary, sometimes on both, sometimes just one cist and other times multiple cists of all various sizes. Each month, when I got my period those cists would quite literally burst, releasing large amounts of fluids which had no space within my abdomen to rest until it dissipated into my body. The twisting sensation and pressure was the cists on my ovaries about to burst, the explosion was the immediate pain as the cists burst and the ongoing waves was the fluid moving inside with nowhere to go. Every time I moved, or tensed muscles, or God forbid sneeze or cough the fluid would be crushed inside me and cause massive amounts of pain. So that was the good news. The bad news? This was simply my body. It was a ‘normal’ function of my cycle. For some very rare, unlucky women this is just our reality and the only possible ‘cure’ is to carry a child and even that only gives us the possibility of a cure, it very well change nothing. Much use that is to an eleven year old who suffers debilitating pain every two weeks and mild pain for one week out of every four. That is three quarters of your life in pain. A very tough pill to swallow at any age, let alone for a child.

Through exploring every avenue, attempting to live with the pain, using medication to manage it (and failing) we realised the only way for me to stay sane was to stop ovulating so onto the contraceptive pill I went at twelve years of age. Due to the strength of my cycle, another lovely side effect of my bodies reproductive system, I regularly cycled over the pill anyway but at least the cists went from every month to about every 3-4. The pill was what kept me sane for a great many years and I swear by it to this day, it was the best decision we could have made and it kept me sane. Yet the day finally came when after thirteen years of using the pill I started developing some lovely side effects, including the beginnings of impaired kidney function. So at the age of twenty five I went off my miracle medication and my natural cycle resumed. I have now spent the last twelve months learning to manage the monthly pain and as an adult am better able to do so but there are so many things those I love in my life find it so difficult to comprehend. Unless you live with an acute or chronic pain sufferer it is impossible to understand and even then, much of their suffering they will do everything in their power to hide from you, so that you do not suffer with them. Pain medications are an everyday part of my life, I never leave home without them just in case today is the day another cist bursts.

Here are five things that acute pain sufferers wish that all our friends and loved ones would know and understand:

  1. Our pain tolerance is out of this world, so when we say something hurts. Believe me, it really I partially dislocated my wrist once and quite literally did not realise for six weeks.
  2. When we finally open up and tell you about our condition, whatever it may be, you jumping in and saying you understand as you get [insert ‘normal’ pain event here] it just makes us want to scream. When people tell me “Oh I understand, I get bad period cramps too” it almost hurts from how little you understand. On the months when I just get every day period cramps I want to cry from how great they are!
  3. We know that people don’t understand our condition and the pain levels. This is not their fault and we cannot possibly understand you to. While we are generally OK with this, it sometimes makes us feel very alone. Don’t tell us you understand. Just offer us a hug and some sympathy, maybe try to make us laugh (unless they have a recently burst cist then do everything possible not to make them laugh, believe me laughing is seriously unpleasant then!)
  4. Often the medications we have to take are no better or can be even worse than what we are trying to fix. So telling us to take our meds will not help us to magically get better.
  5. We usually feel embarrassed about our condition, particularly if it is an invisible illness. So if you love us and want to understand, don’t just wait for us to bring it up. Very likely we wont, so when we say we are in pain and can’t come out, offer to come to us, bring some ice cream and ask us if we are OK.