This post is a little different and really hard for me to write, but it’s just to show that actually, real life still goes on despite the wedding; illness is still part of my life.
I’m scared, ashamed, and apprehensive about admitting so much of my life in this post to everyone, but I hope it will help me as well as giving you an insight into the real world of chronic illness and prescription meds.
As some of you may or may not know, after getting unwell very suddenly in 2012, severe pain was a factor in that illness. At the time, I was critically ill in ITU, and they were really struggling to get my pain under control. I couldn’t have any liquid formulations because of my Mast Cell Disorder, on top of a lot of medication allergies, and my stomach paralysed (so reliant on my feeding tube for any oral meds), they didn’t know what to do. I was already on a PCA Morphine pump, slow-release Fentanyl patch, tramadol, gabapentin, paracetamol, IV Cyclizine, as well as a lot of others and I was still having episodes of severe pain, making my blood pressure dangerously high, sending my body into seizures, and they had to find a way to help me; Fentanyl Lozenges (aka lollies) being the answer.
I don’t think it was the doctor’s intention to keep my on these lozenges for 10 days, let alone 10 years. But, I was sent home with it, and it was never reviewed. At my worst, I was prescribed 20 Lozenges per day, on top of my patch; 6400mg of Fentanyl, 30 doses of cyclizine (the normal being 3 doses), and amongst everything else, steroids and diazepam included - I was basically incapable of doing anything other than lay in bed and sleep. I have no memory of those times apart from trauma of hospital admissions, and I was basically living to die.
I decided one day that I wanted to be MYSELF again. I was pumped full of steroids I couldn’t even recognise myself. I had no memory, and I still don’t (it’s also something that still affects me now). I was having seizures, hallucinations & nightmares that were scary enough for me to be screaming out in fear, I didn’t know where I was, what day it was, I was neglecting myself, and something had to change.
It started when I was admitted to ITU with another bought of Sepsis that I took the opportunity to detox from the Cyclizine. It was hard and scary, I pulled out my feeding tubes and catheter more times than I genuinely remember, and I was a different person. 13 weeks later, I was discharged home on 3 doses of IV cyclizine, with the ‘expert’ telling me that I’ll be like that forever. ANOTHER bought off line sepsis that nearly killed me, I told them to pull my central line, take my phone, ban my visitors and I decided that I was coming off of the Cyclizine. 6 awful days later, I was discharged from that hospital, cyclizine-free.
Even following that, I was still bed bound, struggling mentally, not engaging with my carers, and not living the life I wanted. One day I woke up and made the decision to stop the Tramadol completely, and halve the Diazepam that I was on. It wasn’t easy, but I did it.
My next medication battle, was the Fentanyl Lozenges. As I say, I was on 20 lozenges per day. To put that into perspective, someone who was having a knee replacement without any anaesthetic would be given 2 lozenges for the pain. I was on 10x that, and it was cut down (which was an instruction from NHS England), to 11 lozenges per day, plus the strongest transdermal patch.
My hand has now been forced to detox from my fentanyl by 1 lozenge per week, starting from this Wednesday. This will mean I am off of them before I get married, but I’m TERRIFIED. I’m scared of the withdrawal effects, the pain, and the possibility of me going back to how I was; incapacitated in Intensive Care. It’s SO scary - I’m so scared. I haven’t stopped crying since I had the meeting about it, but I know it’s for the best. If I don’t reduce this dose, I have been told under no uncertain terms that this will kill me in the very near future. The doctor had never heard of a patient being on as much Fentanyl as I am, and when you look at figures; it’s scary. Being really honest, I don’t feel ready to do it, but there’s never going to be a good time, and I have to do this, and I will do this. I’m prepared to have a really hard few weeks. The truth is, I don’t have faith in myself, so am using the support of my family, carers, friends, and medical professionals to do this.
So, please don’t be too harsh when you read this. I’m not a drug-addict, but I am dependant - physically and psychologically - on Fentanyl, and despite all my worries, I WILL do this over the next few weeks.
Anything that will encourage me and keep me on track when I don’t believe in myself that I can do it will be much appreciated!
Love, Katie xxx
