Chronic Pain and Medication
I recently read a post about an Endo patient living with chronic pain, and after being left without her prescription, was made to feel as though she was a drug addict by the medical staff. In support of her bravery and honesty, I thought I’d put some of my hideous pain medication experiences out there. Hopefully, as more becomes known about Endo, there will be less instances of patients being shamed about their pain meds.
I have encountered the judgement and withering look many times – at pharmacies, at hospitals, at doctor’s surgeries.
I have experienced it when handing over an Endone script, only to be told that you’ll have to wait as they need to call your Dr (to verify it). The times when you call your GP’s office, but don’t get the nice receptionist, instead the one who repeats – ‘Oh, what was it? Oh Endone, oh and Targin! You need both! Right, well the Dr isn’t here today.’ ‘Yes’, you reply, through gritted teeth. ‘I’m running out in two days, so I need it by Friday.’ ‘Right,’ they say in that suspicious tone, the one that makes you feel as though you are booking in to get more drugs out of the system. You need to schedule the script in, and are always worrying and thinking ahead about your medications. Terrified of running out and being disabled by excruciating pain, which could send you to hospital. Too often you get to the day – Friday, and you discover that the script isn’t waiting at the pharmacy, as you had naively assumed. Now you have to ring again, and ask them again to do it now, and they give you that tone that ‘the drs are very busy today’. I need my script! I can’t suddenly stop my meds! You scream inside, but stay polite, as you are powerlessly indebted to their help.
I’ve also seen the scrutinising look on friend’s faces when you tell them what meds you are taking, or people watching you closely as you swallow tablets when you are out and about. Or family members that balk over your pharmacy bill. Yep. Pain medication costs. It costs a lot. My pharmacist always likes me. Move to a new area and in a few months my pharmacist is my best friend, as I’m likely to spend a minimum $500 a month there.
What most people who judge chronic pain patients don’t understand is that we hate tablets. We hate being on them, and yes we have tried the Naturopathy, the Homeopathy, the Reiki, the Iridology, the diet, the Acupuncture. Ask me, I’ve tried it.
Pain medication gives me a Life. That’s the other thing that people outside your immediate circle don’t realise. I’m not addicted to it, in fact there have been many times over the last seven years that my condition has got seriously debilitating (no coincidence that my eldest child is 7), and I’ve had to increase or stop different tables. The most recent surgery will have worked for awhile, so afterwards I’ve managed to take myself off them. I always do it as early as I can, and it’s trouble free. And judge away here but my first two pregnancies were entirely drug free, but my third, I needed all of what I could take to survive. This was the only way I could look after two children and be pregnant, or I’d be on permanent bed rest.
Pain medication gives us Freedom. It allows us to get up. Valuable minutes of the morning routine are lost waiting for my body to work. I make my coffee, and then rest with my treasured heat packs until my pain meds allow me to move about more easily. I don’t stop until lunchtime. Once I sit down, I can’t get straight up again – not in two minutes, not in twenty. My dearest friends know this, and will thankfully attend to my children if I have just stopped.
Almost every Saturday I spend most of the day in bed, as I’ve pushed myself too hard. I regularly need other parents to pick up my kids as I can’t get to school. I should feel guilty or worried about this, but I can’t. It’s something I have had to accept as being a chronically ill mother of three kids. I’m too sick to really worry about it. Some days, I just can’t get back up. I cannot leave the house. I quite often need to go back to bed in the afternoon. Now, this is functioning well. This is with a Neurostimulator implanted (taken out and improved last Oct) and pain meds.
I would not take one single step without my medication. And in the spirit of sharing what all of us chronic pain patients endure, I’ll be following on from this post by detailing two stressful episodes, common in my world, when I was judged and refused mediation when I needed it most..
For now, I’ll leave you with this thought – if you see people with chronic pain out and about…that is us surviving. We are still in agony and finding every step a struggle, but we are up! If you don’t see us, and don’t notice us around for a few days, or a few weeks. We are unable to get on top of our pain, and we will be home bound until we get our Meds sorted. Or we will need to go to hospital for pain treatment, something that I usually endure annually. A week away from my kids. Isolated in a room too far away for regular visitors.
Meds give us a life. Don’t judge us, I’ve never been someone who regularly had to be on pain medications until my darling kids broke my body. Fair price I feel……