Surviving Sepsis

Sometimes things happen to us in life and we have no idea why, we may question why more often than we like and we are still left unanswered… why did this happen??? why me???? I’m not a fan of self pity but sometimes when you’ve been through so much you do begin to wonder why oh why… so here I am! Back again… writing another blog post telling another story, a little different to the previous ones, this time it’s about Sepsis; yes somehow on top of everything else I managed to get sepsis, it’s laughable really; well we should laugh in life otherwise all we would ever do is cry! So let’s give it a go, it’s time for me to share with you another one of my stories (although it’s not just a story, this actually my life!)

AUGUST 2018: For most of 2018 I was absent from social media and my blog which meant I’ve had lots of questions sent to me via friends and family asking is she okay; where is she, what’s happened to her? I’m proud to say that I hadn’t disappeared, there was no need to fear the worst, I was out there, living my life. Well, kind of… about 60-70% recovered from Lyme Disease after 2 and a half years of constant treatment at Breakspear Medical in Hemel Hempstead, Hertfordshire and another clinic in London. I was almost there, not quite but it appeared to be in reach, I could shower most days, cook, clean, go out for dinner, lunches, cinema, social events on a regular basis (well my kind of regular which is probably different from your kind of regular). Gone were the days where I spent all of my time in bed, I was actually spending less time in bed than I was out of it – I don’t remember the last time I was functioning like this! Still very unwell mind you but far from where I had begun on my journey to recovery from Lyme. I even went to Italy, yes that’s right! It’s the first holiday where I didn’t use a wheelchair at all in the last 6 years! Oh boy, oh boy did I struggle though, passing out on the flight, hysterically crying after the first day it was all too much for me but once we slowed down the pace and spent more time resting in bed, the last few days were heavenly.

SEPTEMBER 2018: When we returned from Italy I was still managing to leave the house and do ‘normal’ things some of the time – I was so so happy, even though my body still felt awful my life felt more full than it had in a long, long time. Just 6 days later and it was all about to change more than I could have ever anticipated, and at a faster rate than ever before. I went to get my port flushed at my local private hospital (I had a Port-a-Cath (a metal piece placed inside the main vein just outside the heart) fitted in February 2018 to carry on receiving my infusion treatment for Lyme as my veins had gone bust after 2 years of none stop use! The next day I noticed that it was a little itchy, inflamed and sore, it didn’t feel the same as usual, it also had some yellow gunk around it which was uncommon, I worried but those around me told me not to worry it was fine; so silly me (we later learned it was the source or the infection so the source of the sepsis) I just brushed it off and got on with things (which I often tend to do because I’m too scared to face the truth that things could be going even more wrong). That day I also started to run a fever, my auntie had been visiting a few days earlier with a chest infection so I assumed she must have past it on but as the days went by I got worse and worse to the point where I thought this is the most horrific case of flu I’ve ever had. I started supplementing with high dose vitamin C which is used to treat cancer so I thought if it can kill cancer cells then it can kill whatever is inside me. I picked up the tiniest bit for a couple of days, enough to make it on a train to London to get to the clinic I had been receiving treatment for Lyme disease the last few months.

‘What on earth has happened to you?!’ My doctor gasped, ‘Why didn’t you come sooner? You must not wait until you get this bad to return again!’ She put me on infusions of high dose vitamin C (also used to treat cancer and much more aggressive than the oral form), each day I said to her, ‘give me more please, just give me more, I can feel it everywhere, the infection is everywhere! Moving all around my body, please just make it go away.’ With each dose of vitamin C came a huge fever, the shakes, the chills, my whole body was moving back & forth, boy oh boy was that vitamin C doing it’s best at killing whatever was inside of me, my entire body shook, all day and all night long. Most of why bodies systems were seriously affected, my lungs, my heart, my nervous system, my muscles, my energy, everything was freaking out, my body was going absolutely nuts and as the days went by I did not make the improvements I usually saw when I would go to this clinic for treatment. I am sad to say that not only did they not come but things soon after got much much worse to the point no one ever imagined. As well as the physical torment I was experiencing, I mentally slipped into a very dark place, I sobbed and sobbed all day long at the clinic, and all night long soothing myself to sleep. I had no idea what was happening to me, I wasn’t consciously aware that something was really wrong but there was a fear inside me that I hadn’t experienced before, a darkness that something was looming, something I couldn’t put my finger on but for sure something worse than I’d experienced before. Each morning I returned to the clinic from my hotel with still no improvements and on most days my answer to my doctors first question of the day, ‘how are you feeling?’ was, worse… my doctor, myself and the entire team there were puzzled and confused, mystified, we all wondered what the hell was going on. About 10 days later and I was marginally better than when I had arrived in London but I knew it just wasn’t the same as the other times, I was returning home not much better than when I had come. I’m usually one of the lucky ones when it comes to treatment, I always make significant improvements with almost every treatment I’ve ever tried, most others have to try and try and try again and are still not so fortunate. That day as we were about to depart home, I remember thinking I can’t walk to the train, this is really unusual I walk every time from the hotel but I don’t think I can do it and I have no idea why then whilst on the train home, I curled up in a ball next to my boyfriend feeling so unwell, so confused, really starting to wonder myself, was there actually something really wrong…

OCTOBER 2018: The very next day I arrived at Breakspear Medical for my regular check ups, the clinic who had previously treated me for Lyme. The first thing I did was curl up in a ball under multiple duvets, shivering, shaking, sweating, with an extreme fever, I thought how is this possible, do I have another cold or flu?! If that really was a cold or flu before the treatment in London then all the treatment I did would have made it go away??? This made no sense! Nothing made any sense anymore… maybe I was just in a really bad Lyme relapse we were all starting to think… (blood was sent off to retest my chronic Lyme & co-infections) and Breakspear put me on my usual Lyme treatment infusions; high dose vitamin C / acyclovir to cover the viral infections and oral antibiotics (clarithryomycin) to cover the bacterial infections. It was soon after that my worst symptoms began… whatever was happening to me had started to affect my lungs… pretty much out of the blue I was struggling to breathe, the tube in my chest the air went through felt like it was closing up, the oxygen felt like it wasn’t getting into my lungs, the muscles lining my lungs felt heavy and weak, so difficult to breathe, so difficult to inflate. Breakspear put me on an oxygen machine, thank god, finally some relief, I took it home with me to the accommodation I was temporarily in, where each night my boyfriend rang from home (3 hours away up north) how are you feeling? He asked. Worse… was my response every single night that week. Towards the end of that week my breathing was so bad, I could not sleep without the oxygen machine on, tears rolling down the mask, thinking that was it, my lungs were giving up, surprised to see the sunlight shine through the window with every new day that came my way and then I knew, this was most definitely something else, this was not a Lyme relapse (I had been so unwell with Lyme a few years earlier that we thought it was just happening again). I rang my dad that morning, letting him know that something was seriously wrong, I cried my way into Breakspear that day with each step and each breathe wondering if I would collapse every second along the way. As soon as I arrived with one look at me the nurses said you need to see a doctor now, and so in I went, crying, hysterical, I feel like I’m dying… please help me, please, whatever you can do, I really feel like I’m dying. Please tell me I’m not, please do whatever you can do. With everything I suffered previously with Lyme, I have never uttered those words, I’m just not like that, no matter how bad I feel I always completely under play how bad I actually feel.

A lot of blood was sent off, my doctors doing their best to find the cause… a few days later and I had gone downhill fast, by this point I was ringing my dad actually saying, I feel like I’m dying, whatever this is I feel like I’m dying (I later learnt that some of the most common symptoms of sepsis are a feeling of impending doom and feeling like you’re dying). Everything had become a blur, every time I opened my eyes the room was spinning, everything was moving, I could barely see a thing, I was in a bed shaking constantly, it was visible to everyone’s eye, bucket at the ready, about to vomit, the lights  at Breakspear all needed to be off, blinding me, photosensitivity the worst it had been in a long long time. I was asked to sign some documents, my hands tremoring all over the place, I didn’t even know how to write my own name, confusion had hit hard, what was my address, I was asked? I had no idea. By this point my breathing was so bad I couldn’t even speak without being on an oxygen machine, and I was losing weight quick, almost a stone in less than a couple of weeks. A doctor came to see me first thing that morning, they had a call from a lab, there were bugs in my blood, an infection, I had to go to hospital and have surgery to remove my port straight away. It was serious. I didn’t understand, I was so confused, was this not a Lyme relapse then, what did this mean, why did I need surgery, how would I get any treatment without my port? And then I quickly realised this meant I had sepsis, it was urgent, and the doctor went on to confirm the high dose vitamin C and the antibiotics had been keeping me alive. He said to me, I do not know how you are not in a worse state than you already are. My neck became so stiff and my brain felt swollen, they said you need to go right away, meningitis was on it’s way. We asked if I could travel home to our local hospital; 3 hours away, they said absolutely not, you need to get to the nearest hospital there is no time to wait and so they went to call an ambulance but thank god my mum was already on her way. They decided she would be quicker to take me than waiting for an ambulance in rush hour, thank god, I hated ambulances anyway. My doctors phoned the hospital with my  my case history, along with the test results and to tell them I was on my way.

When we arrived at Watford Hospital I had no idea what was in store for me, I had no idea how bad it would get, no idea how close I would come to losing my life and no idea what it would do to me and even more unaware of what state I would be left in once the sepsis was finally gone…

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NOVEMBER 2018: I spent 15 days in that place, 15 days of hell, 15 days where I thought my life was soon going to be over. As soon as we arrived we skipped A&E, my doctor had spoken to the A&E registrar and told them she was sending a patient with sepsis, I went straight to a medical assessment unit, even skipped the queues in the unit and straight onto a bed, I was so sick and so weak, crumbling as the minutes went by, I could barely stand, I could barely speak. A doctor came almost straight away, examined me, made some phone calls, most of what I could hear, ‘I have a patient with a history of chronic lyme disease, she’s very very unwell, suspected meningitis and viral encephalitis along with positive results for bacteria in the blood (sepsis).’ I couldn’t quite believe what I was hearing, how had we gone from Lyme relapse to sepsis so quickly?! It was far too quick for my body and my brain to handle. I had hard swollen lumps throughout my lymph nodes, a high temperature, extremely low blood pressure, rapid and irregular heart beat, extreme muscle weakness so I couldn’t even lift my legs, excruciating pain to be touched and examined, it was obvious that I was very very sick. They put me on IVs of  ceftriaxone antibiotic for meningitis which also treated Lyme, acyclovir antiviral for viral encephalitis and teicoplanin antibiotic for sepsis, I had these every 12 hours for the next few days. I also had every test under the sun… CT scan of the brain, MRI of the back, X-ray of the chest, ultrasounds of the heart, three lumbar punctures, surgery to remove the port and multiple bloods every single day… after a few days the brain symptoms began to subside, the meningitis and the encephalitis symptoms were gone so they stopped those infusions and kept me on IV teicoplenin, the sepsis was the culprit and the teicoplanin was trying it’s best to do it’s job but boy oh boy was it toxic, it’s one of the most aggressive broad spectrum antibiotics in the world and it was absolutely ruining me.

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My body was at war; a war I had never felt before, I had been poisoned, I could feel it, my blood was bubbling, killing me as the days went by. Each day that went by I got worse, not any better but worse… and worse and worse until I could no longer walk, no longer stand, no longer sit up, no longer lift my arms and legs, no longer lift a knife and fork to feed myself and no longer chew. I lay in that bed 24 hours a day for 15 days unable to move. I was taken in a wheelchair to the toilet just 10 metres away, they would ask me to move to the chair next to my bed once a day so they could change my sheets but I physically couldn’t do it. My dad rang Breakspear terrified, we all were struggling to understand how was I getting so much worse, wasn’t I supposed to be getting better?! My doctors at Breakspear were not surprised. This was sepsis, it is fatal in 40% of cases in the UK, 60% of cases in underdeveloped countries. The sepsis ravaged my body, taking every ounce of energy I had, I lost another stone just whilst I was in there, it crippled me and caused me pain I still can’t bare to think could even exist. I was on high dose IV paracetamol every 4 hours to bring my temperature down, equivalent in strength to oral morphine, it improved the pain so slightly for about 5 minutes a time then it came back with a vengence. The oral morphine they also gave me lasted a few minutes longer and the zopiclone knocked me out for a few hours a night for the tiniest bit of respite, the IV morphine was the best though a few minutes of complete relief. By the end of my stay I was intoxicated by pharmaceuticals, poisoned by the drugs – because remember over the long period of Lyme my immune system was so debilitate I had become hugely sensitive to anything that entered my body, I also have genetic disorders where I cannot detox properly which causes a big problem when you have something like sepsis. I was being poisoned by sepsis but I desperately needed those drugs to keep me alive.

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I sobbed and sobbed with each breathe I took of each and every day, the nights were the worse… visitors were only allowed until 9pm. When one of my parents or my boyfriend would leave (they drove 6 hours round trips home and back each day) I sobbed in their arms, not knowing whether I would see them again, each time I felt like I was saying my final good bye. At times I didn’t think I would make it out of their alive, I remember asking my father so desperately and in so much pain, please whatever this is let it kill me, I want it to kill me, please I cannot bare this for a moment longer. For my boyfriend this was the worst part, leaving me in tears, without a say and without a choice. So here I am as I write this, once again in tears as I relive those moments, where suffering is not a powerful enough word to even describe how it felt. What was it like for them? For my mum, dad, boyfriend, my family? I cannot even imagine. I so desperately wanted to die but for them I couldn’t bare the thought of what it would do to them, without me, I had to stay strong, I had to keep fighting in order to stay alive. Each day when they arrived they hoped to see signs of improvement but it never came, not even on day 15. I could see their disappointment, here it in their voices. I felt so ashamed, so embarrassed of my body, why me? Why did this have to happen? Why did this have to happen to them? Why am I even still alive? The emotional pain I put them through is unbearable, everyone was left sick and exhausted, not just myself but everyone I love. The guilt I carry around with me I cannot forgive, often I feel that the weight of the world is too heavy on my shoulders. The sepsis has left me confused, depressed, anxious and with post traumatic stress. It also left me with physical damage… my body did not recover once the sepsis was gone, it not not bounce back to pre sepsis state, I was left in a state you could not even imagine and I do not yet wish to tell. Yet somehow I am still here, I find myself still alive. Why you may ask? Why did she survive? I do not know the answer to this as so many others do not survive. There were times in that place where I closed my eyes and thought this is it, I’m going now, this is the end but in that dark hole I could see a tiny light, it looked like a spotlight on the future, there I was with my own little family, sitting around the kitchen table, bickering about our days at work, telling the children off for making a mess with their spaghetti, the phone ringing, my mum on the other end asking 101 questions about my day and that’s when I knew I had something to fight for, something worth living for.

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So now I’m on a quest of self discovery, pre sepsis I was so sure of myself, so sure of the world, so sure of everything but the sepsis changed me so now it’s time to live again, to find myself, to hopefully find answers to some of my questions, I may or I may not find them but what I do know is that I survived. I survived! I SURVIVED! This is a story of survival and if I survived then no matter what you are going through in life, be it physical or mental health or something completely different, then so can you but you have to try and if you survive there must be a reason for your survival; do not forget this. So now I am on a journey to find my reason, to find my answers to this survival, which I will hope that some day I will be able to share with you lovely people.

Goodbye for now,

Emma

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I accidentally deleted my old Instagram account so my new one is @emmablondevoyage where I post regular updates! and don’t forget to subscribe to so you can get an email when I write a new post 🙂

PS. Please share wherever you can with the hope it might help someone somewhere out there and help those see the light whilst they are going through the darkest times. I will be back next month with another blog post about my recovery from sepsis, I’m two months in, no one knows how long it will take but I believe it is possible, anything is possible.