The story of Narissa
In 2021 my life drastically changed. I unknowingly had this condition for many years, but it all became drastic in 2021. It all started with more frequently waking up unable to breathe and choking on fluid that came out of my nose, almost like gushing. This became something that happened every two or three days and then began happening every single night. I would wake up in a panic and be completely unable to breathe, with fluid coming out of my nose. It almost felt like drowning every single night. Then it started happening 2-3 times a night. I would suddenly sit up from a deep sleep unable to take a breath for about 30 seconds. I would completely panic and my heart would race. I slept with a towel on my pillow and one under my my head to catch all the fluid. Every single night this happened. I went to the doctors and they insisted it was acid reflux or GERD. I went onto a high dosage of omeprazole for 2 months and then a regular dosage for 1 month and it had zero effect. In Sept 2021 I had a endoscopy and they took biopsies and found nothing to be wrong. The GP that I saw who got me referred told me to stop taking omeprazole because it wasn’t reflux. Things got worse in Nov 2021. That was when the regurgitation began. I woke up feeling nauseous one day and just didn’t feel like eating (prior to this my food consumption had drastically decreased to half or quarter plates and half a sandwich). At this point it was a case of I was barely eating and barely keeping anything down. I was prescribed anti-nausea medication to stop the regurgitation, which at this point they had no idea why it was happening. The day it started all I had had was water and that’s what came back up. Each day was worse then the one before and it just kept getting worse and worse. I went back to the GP and explained what was happening and they wanted to prescribe omeprazole again. I refused. I told the GP it was not reflux or GERD and refused to just take medication for something I was suffering from. To say she was shocked would be an understatement. She said she would consult with a senior GP and they would decide the next steps. At this point I was hardly eating or sleeping due to regurgitation. Christmas came and we had a family dinner. I ate about a quarter of my plate of food and felt so full I couldn’t eat more. I felt so ill and weak but soldiered on. That night I had a really really bad episode of regurgitation where literally everything I ate came back up. This was the day everything became really drastic. From then on I couldn’t eat any solid foods at all without regurgitating within 2 hours of eating. I became terrified to eat. On the 28th of Dec I had a barium swallow test. This is an x-ray test in which you swallow a white chalky substance that shows up on the x-ray. It was one of the worst tests I’ve done in my life. I hadn’t eaten or drank anything for almost 24 hours before the test. This began the diagnosis finally. The radiologist explained the GP would get the results the following week and go from there. I felt bloated and sick after that test. It was horrible. The next day I got a call from my GP explaining I had a preliminary diagnosis of achalasia and was given an emergency appointment for a manometry test on the 11th of January 2022. I was of course aware of achalasia at this point because I had done my research on my symptoms. After Christmas all I was having was soups because I discovered that I was able to swallow and keep down liquids. But that lasted about 6 days after Christmas and even that became difficult to keep down. By the time it got to the manometry appointment there were few soups I could consume and the amounts I was eating were about a bowl a day and it was getting worse. I was drastically losing weight but keeping on with my daily activities despite feeling weak and exhausted everyday. I was also referred to an ENT for the fluid and choking that still happened nightly. I was prescribed an nasal spray that appeared to work but looking back it was probably a case of there was nothing to regurgitate so nothing to come out of my nose. I did the manometry test and was told I definitely had achalasia and was being referred to a dietician because at this point I couldn’t eat most soups and was now down to 250ml-500ml of protein shakes a day. Each day was becoming less and less. My dietician referral was in March 2022. I struggled on as best I could and kept going with my life as if everything was okay. I lost around 20kg of weight in the space of about 2 months. I had a very scary episode one morning. It was a fairly cool day but I woke up absolutely freezing. I mean like it was -5 degrees and I was without any warm clothing. My body temperature felt normal but I was absolutely freezing cold. My teeth were chattering and I couldn’t get warm. This lasted about 10 minutes before it subsided and I was okay. It was close because my partner was ready to call an ambulance. March rolled around and I had a telephone consultation with the dietician and the hospital and went through everything that haf happened to me and what I was consuming. At this point I was down to 250ml of protein shakes a day on a good day, I wasn’t having very many good days. I had even taken days off work so I could rest. The dietician consulted with the GI specialist I was waiting to see since the test in January and called me back and told me I was being admitted to the hospital that day for a nasal gastric tube to be fitted so I could get my body to a healthier place for surgical treatment and to prevent re-feeding syndrome. At this point it was difficult to even drink water let alone protein shakes. I was in hospital for a week with the tube in my nose to my stomach and that’s how I was being fed. I had nutrients going almost all day everyday I was in hospital. They would take bloods each day to test my levels and tell everything is good and normal (I think they lied). We were just coming out of covid lockdowns and nhs surgical procedures were being scheduled and waiting lists for non-emergency (non-life threatening) were around 6-12 months. I was expecting to wait months before I would get surgery intervention. I had researched all options available to me at this point and was fairly well informed about what choices I had. I met with a GI surgeon and he discussed my situation and told me I would be scheduled for surgery by the end of the following month, April. This fact alone led me to realise I was much more sick then I thought. He presented the options and discussed them with me, fairly impressed with my knowledge of things, and a course of treatment was decided. I was taught how to use the feeding machine and how to keep it all healthy. I was given strong doses of vitamins to take orally, but at this point swallowing was almost impossible so even vitamins were taken through the tube. My surgery date was scheduled and it was just a matter of waiting and planning. I had POEM surgery on the 29th of April 2022. Recovery was fairly quick and easy compared to what I had been going through. The day after surgery I ate a bowl of soup and cried because it went down easily. I was on a restricted diet for 6 weeks post surgery. After that it was a case of learning what I can and can’t eat. Learning how stress affects my ability to eat. Learning how to navigate the weakness in my muscles due to having lost so much so quick and subsequently putting that weight back on very quickly. It’s been almost 2 years since my surgery and I still struggle daily with eating. I still can’t eat as much or as often I did before. I still struggle with some foods more than others. Some days I’m lucky to eat a decent meal. Some days to eat at all. I now also have really bad chest spasms some days. And chest spasms that aren’t as debilitating but can last for 2-3 days. My disease is incurable and degenerative. I can only manage my symptoms as best I can knowing I will never be able to eat like most people. I have to now eat slowly and chew really well. I also have to eat with alot of water to wash the food down because the normal swallowing muscles don’t work for me. I cant eat at least 2 hours before I sleep. Taking any type of medication depends on the day how well it goes down. I also have to drink at least 500mls of water to get it down. This is my life everyday. When I’m stressed it difficult to swallow anything. 2 years on and my muscle strength is still not good and I’m having to learn to rebuild and adjust to what I can and can’t do. Some days I wake up and feel so weak I don’t want to get out of bed or do anything but I do anyway. Sometimes I get light headed and dizzy even though I’ve eaten a decent amount of food that day. Each day is a new struggle and a new adjustment to be made. This is my life now. The picture on my own was before I couldn’t eat. The one with my sisters was about a week before I was in hospital for my NG tube