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.

Catching up on Zzzzzzzzzzz

“Meow” means “woof” in cat.” ― George Carlin

Our cats have a hard life. Oh they do… Here is their daily routine according to them:

7AM – Woken up by humans. Forced to have cuddles. Given dry food as recompense.

7.30AM – Humans leave. Forced to romp, play, chew and attack sibling.

9AM – Eat and drink.

9.02AM – 11.30AM – Sleep and snuggle with sibling.

Repeat 7.30 – 11.30AM until humans return.

4PM – Male human arrives. Forced to have snuggles. Sleep on his knee until 5.30PM.

5.30PM – Female human arrives. Forced to have snuggles.

6-9PM – Alternate between being forced to romp, play, chew and attack sibling and sleep, snuggle with sibling.

9PM – Humans give cold wet food.

Sleep until 4AM. Have a mad and sleep until it all resumes.

So as you can see… It is a very hard life! Here is the evidence of just how hard they have it.

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But mum I’m comfy….

“Outside of a dog, a book is man’s best friend. Inside of a dog it’s too dark to read.” ― Groucho Marx

Most animals are famous for their ridiculous positions that are ‘comfortable’ and looking at their human owners slaves as if ‘yes and why are you looking at me?’

Well with four animals in our house they are all at fault of this at times!

Bertie makes packing for holiday mightily difficult!
Bertie makes packing for holiday mightily difficult!
This was my mother-in-law's thong... Not anymore! Bertie laid on that for a good 2 hours.
This was my mother-in-law’s thong… Not anymore! Bertie laid on that for a good 2 hours.
It was cold... He made his own bed!
It was cold… He made his own bed!
Newest 'comfy' place... Just waiting for someone to accidentally step on him... And yes, that is indeed a rug!
Newest ‘comfy’ place… Just waiting for someone to accidentally step on him… And yes, that is indeed a rug!
You have no idea how hard it was to get her into this pillow case... As soon as we want her out, she does this. *Sigh*
You have no idea how hard it was to get her into this pillow case… As soon as we want her out, she does this. *Sigh*
In case you were wondering, this is Daeny's cage... Also known as Bertie's bed.
In case you were wondering, this is Daeny’s cage… Also known as Bertie’s bed.
No comfier place than mum's laptop.
No comfier place than mum’s laptop.
Except for maybe her chest. I could wear him as a broach for hours as I work around the house.
Except for maybe her chest. I could wear him as a broach for hours as I work around the house.
Helping with the washing... Or not!
Helping with the washing… Or not!

Trip to the vet

“I have studied many philosophers and many cats. The wisdom of cats is infinitely superior.” ― Hippolyte Taine

Our lovely not so little kitties have reached twelve months of age. So being the responsible pet owners were are,  the time came for us to take them to the vet for a checkup. I made appointments for our two little cherubs and arranged a double appointment for our beloved Zelda. Giving them very clear warnings about her claws, extreme distaste for being touched or handled in any way and positive terror of strangers.

Our little princess... Such an innocent face!
Our little princess… Such an innocent face!

We got the travel cages out, left them on the ground for them to get used to the idea of and the time came, Dave picked up Mr Bertie without a fuss, put him and and he sat very happily surrounded by his comfy blankets and his ‘comfort toy’ (strange cat).

Then came the moment we had been dreading… Trying to get Zelda into the travel cage… As much as she loves us both now, hands are still viewed as evil. Since she is overall much easier for me to handle than Dave, again goodness knows why (or in this case only one crazy cat knows why), the person with the least experience with cats had a go at capturing and terrified kitty. I gave her some food, she rubbed against my legs, she let me crouch down and she rubbed against my hands. The second I tried to pick her up she freaked riiiiiight out. Ran around like a mad thing. In the end Dave had to try using a sheet to catch her.

All to no avail. In the end she was going to hurt herself she was so worked up. So Zelda decided to stay home and Bertie went to the vet alone.

Bertie was the cutest little guy, very happy as long as either of us were touching him too and when he started to stress on the way home, I climbed into the backseat and did a naughty, just opened the cage door and he crawled onto my lap and became so contented he was purring like a chainsaw! lol.

Who said siblings were alike?!

Maybe a little similar in appearance...
Maybe a little similar in appearance after all.

After we got home, Zelda did this herself half an hour later…..

Of her own volition... Went to explore.
Of her own volition… Went to explore.

I could have killed her! Gah!

Furry fluff balls overheating

A week of over 40 degrees in Melbourne… Well this leaves us with mixed feelings in our household. Our reptiles think they are in heaven and it is always the most active and playful time of the year. However, our triple coated Siberian cats are definitely not as keen!

We leave them with ice blocks, ice packs, water to climb in as well as water to drink and they cope fairly well but they also become inventive themselves.

Last night one of our lovely kitties found the coolest part of our house… Luckily it was dirty washing not freshly washed!

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Everyone take care of your lovely pets in the heat!!