The Week That Should Have Flared My Chronic Pain

Some weeks test everything. This was one of them.

It’s Friday morning.

My son had appendicitis on Saturday night. Sunday morning, emergency appendectomy. Sunday afternoon I spent in hospital with him. Not only did I want to be with him, I know that you will get much poorer treatment, as a patient, if there is no family member there with you. So I stayed. Until 4pm in the afternoon. At that point I’d been awake for over 30 hours.

At 5:30pm he called me because after shift change, his new nurse forced him to eat dinner that he didn’t want. He then threw up, and the nurse left him sitting in bed, holding a full vomit bag, for over 30 minutes.

I got in my car and drove straight back.

Literally within an hour of my leaving, he was ignored and neglected and mistreated by one bad nurse. There is always that one bad nurse. Most are good, some are brilliant. But there’s always that one bad one who makes everyone look bad.

A wonderful doctor took care of the situation, before I even arrived, and that nurse was sent home. I hope permanently! It sounded as thought that’s a possibility.

To be clear, my son is an adult. However, NO patient should be ignored like that, abandoned, left sitting in bed, covered in vomit, for 30 minutes.

What was amazing was the doctor took care of the nurses duties for the rest of the shift. Unheard of! She did his obs, and gave him lots of information. She stopped to chat, and answer all his questions. Most of all she was kind! I think she was truly appalled at what the nurse did (or rather, did NOT do). She was incredible. Empathetic, caring, and doing a nurse’s job because the nurse was an incompetent asshole. She had no ego, she did what was necessary for her patient. A young man, recovering from his first surgery. And emergency surgery at that.

NEVER be alone in hospital. NEVER allow your family member to be alone in hospital. I have almost died because nurses decided I could wait. That I was whinging. That I wasn’t really as sick, or in as much pain, as I was telling them. And there was no one there to advocate for me, so I was allowed to bleed out in a hospital bed. For five days. But that’s another story.

I stayed until 9pm, at which point I was falling asleep on the hardest wooden chair I’ve ever had the privilege to sit on. I was literally nodding off. My son was very drowsy and nodding off as well. And he was in the hands of a wonderful doctor. I told my son I had to go. Any longer and I would not be safe driving home.

The cold night air woke me up for the ten-minute drive home.

By the time I got to bed, I had been awake for 40 hours, with the exception of 1 hours sleep, almost 24 hours ago.

I pushed my body to its limits. I will do that when it’s my children. Adults or no, they are my children. Always. And they always come first.

Happily, my pain was no worse than usual.

In fact, that’s what struck me most. Forty hours awake. Constant stress. Driving back and forth to hospital. Worrying about my son. Running on fumes. According to many popular ideas about chronic pain, this should have sent my pain through the roof. Thankfully, it didn’t.

In fact, it was better than usual. Perhaps it makes no sense, but that’s how it worked out. I’m just grateful.

What I do have is a nagging headache. From sleep deprivation. I am so tired…still.

I spent all day Sunday at the hospital. And Monday he was discharged around noon. I got him settled at home, and went to the shop for some comfort foods, and favourite snacks. Mostly simple foods, bland stuff. But some nice things too.

He is recovering well, but surgery is painful. Recovery is painful. These are just facts. It was minimally invasive laparoscopic surgery. But he still has three puncture wounds in his belly, and he is bruised internally and externally. It takes time to heal.

Thankfully, he is in good health and his recovery is uncomplicated, wounds are healing nicely and I’ve made an appointment with his GP for follow up. When he needs something, I drop whatever I am doing. Because my kids come first. Always.

I spent Tuesday filling orders that were many days overdue. And apologizing and explaining to customers. Everyone was lovely and understanding. Wednesday was pretty much the same. More orders. Thursday, more orders, for which I am thankful. But I cannot catch up as long as orders are still coming in. In fact, each day I am going backwards.

Today I have coding work to do, I need to be alert. I need to think straight.

But first, I have to go to my GP, go to the shops and grab some more breakfast cereal. And then home to make breakfast for my son.

I am still exhausted. I need more sleep. Pain does not allow me to catch up on sleep. I cannot have a big, long sleep and catch up, like a normal person.

I can’t do that because the pain becomes too severe after four to six hours. I wake up in too much pain to get back to sleep. Therefore, my sleep is continually interrupted.

Because I am not allowed to take my pain medication before bed. I have the same choice – pain medication to function during the day OR pain medication to sleep at night. Not both. Never both. Which means I wake when the pain becomes severe enough to wake me. Every night. And that’s usually after about four hours sleep. Sometimes six.

I could take another extra dose of pain medication, but I can’t risk that.

So I can only ever sleep a maximum of six hours.

I still have sleep to catch up on.

I will get there. Eventually.

Frankly, I have done an amazing job, if I do say so myself.

I can, and will, push my body to its limits, when I need to.

I am strong. Mentally and physically. Though, I must say, getting through something like this, on zero sleep, is more a mental game than a physical one. The body follows the mind. I had to stay awake. I had to function. I had to be there for my son. Yes, I took extra pain medication to manage it. But I refused to buckle. Refused to give in, until my son was ‘safe’. And sleeping comfortably. Simple as that. It had to be done.

If anything, this experience demonstrates how determined I am. How mentally strong. This is important to me, as a chronic pain patient. Who is regularly assumed to be, and accused of being, weak and lazy.

Interestingly, none of the things pain patients are routinely warned about seemed to matter much. Stress didn’t flare my pain. Anxiety didn’t flare my pain. Worry didn’t flare my pain. Lack of sleep didn’t flare my pain. What helped was having enough medication to keep functioning while my son needed me. That’s what I needed. But no more than I need it every day of my life.

Point being, there are a lot of assumptions in chronic pain. But these have been elevated to hard and fast rules. Medical fact. That people belief.

But they are not fact. They are possibilities.

Yes, stress can increase pain. No, it doesn’t always.

Yes, sleep deprivation or poor sleep can increase pain. No, it doesn’t always.

Yes, doing more activity than usual can increase pain. No, it doesn’t always.

Each person, and each situation, is individual. Unpredictable.

I may be in trouble at the end of this month. You may recall I had a day where I took an extra dose of pain medication because I needed to sleep. Well, now I have taken three extra doses. It was an emergency, and I needed to be upright, and functioning. So, I took what I needed to function.

Will my doctors understand that?

Will they?

Is that a good enough ‘excuse’?

DO they allow for emergencies requiring more pain medication than usual, to function? To cope?

Or will I be red flagged for misusing, or abusing, my pain medication?

It is two more weeks until my pain medication refill appointment.

We will see.