My health issues were always creeping in the background, through my childhood bone pain and headaches were common for me. I had a weaker immune system that always seemed to struggle to beat viruses, and I was just generally a tired, allergy ridden, run down child. When I reached high school my bowel issues started and by age 15 became quite severe, both diarrhoea and constipation along with pain that was often intolerable were a daily occurrence. I got diagnosed with irritable bowel syndrome after going through various tests at hospitals. I tried exclusion diets and was on the low fodmap diet for months but nothing ever seemed to help. I suffered fatigue and generally felt rubbish a lot of the time. Insomnia came at me in waves where sometimes I couldn't sleep for weeks. The extent of how sick I was wasn't really noticed to me until I looked back at my medical records and saw how often I complained of these reoccurring symptoms. I guess I knew I was ill, I just didn't piece everything together to see the whole picture.
A few years later, at 17 I was wiped out completely by glandular fever. I was bed-bound for I think 4 months and now looking back with hindsight, my symptoms were very like Postural orthostatic tachycardia syndrome (POTS)- dizziness, extreme fatigue and pre-syncope. Perhaps I had glandular fever prior to this and what I was feeling was POTS starting (much earlier than I initially thought!). The rest of the year was difficult, I picked up multiple infections and later on in the year I had a bad concussion. I fell from my horse at a gallop and smacked my head off the ground. For that night I lost all my memory of the two years before and I was unable to retain new memories. Thankfully, by the morning my memory mostly came back and my short term memory was fine. I remained confused for a long time afterwards and I do to this day feel like my memory has been affected, I seem to have forgotten a lot that happened in my teenage years.
Throughout the next year, I had pre-syncope (pre fainting symptoms where vision goes) and tachycardia doing things, for example when I was horse riding or while I was working in the tearoom. These were put down to anxiety for quite a long time, although I knew deep down this just wasn't right. I also still had the symptoms I had before- fatigue, headaches, bone pain, hot flushes, insomnia, allergies. I happened to get sick around any occasion, for example, if I went away for a couple nights I ended up in the hotel room sick instead of enjoying myself, or on occasions like my birthday and Christmas I would always be ill with what I thought were viruses. I knew I was fading away and becoming more sick, I felt it coming because I was just sick so often, it wasn't normal. I was also turning into a cry baby, I started crying randomly most days, and I wasn't myself at all. I made a few changes to try to combat this, I was eating better and having super-food smoothies daily. I was trying to exercise to get into better shape physically but of course this was the wrong thing to be doing when unknowingly to me I actually had exercise intolerance.
In January 2016 when I was 19, I crashed. my body just hit a wall. It physically could not take anymore. That week I tried to drag myself to college, but my heart was beating out of my chest and I couldn't even sit on a chair. Gravity was pulling me down and I felt like I wasn't in control of my body. I was falling all over the place and I felt really unsafe know matter what I did. I think after a few days of really trying to push through these horrible symptoms, I could not move anymore. I physically couldn't get out of bed. These next months are such a blur, I slept most of the time, stared at the walls and sometimes stared emotionless at the television not actually taking anything in. I crawled to the bathroom and every few days or once a week, forced myself into the shower where I continuously collapsed on the floor crying, too exhausted to wash or to then leave. This was rock bottom for me, I don't like to dwell on it too much, but I think it is important to show my story. To show how bad it is, to show others they aren't alone in this.
I do feel like my memory during this time is fogged over. I remember moments, but it feels like there is a lot missing. I remember suffering with insomnia at nights, even though I was exhausted and honestly feeling like hell, I just couldn't sleep. I'd lay in bed, feeling like my whole body was jittering. My heart beating out of my chest, my pulses all over my body pulsating so incredibly strong I could feel it in my fingertips, my neck, my ankles, my belly. I could hear every heart beat in my ears. It's the most unsettling feeling I've ever had, one that feels so strange and so severe. I lay awake wondering if I was close to death. What was happening? My head would hurt and I felt sick, the room spinning round and I'd feel like I was falling down, a dropping sensation throughout my whole body. My body felt like tonne weights and at the same time my bones felt like they were being crushed. I lay awake, yet barely conscious staring at the wall with tears running down my cheeks. Whenever I had the energy to think a bit more, I'd feel my heart breaking inside my chest as I grieved the person I was before I felt this way. Eventually I'd fall asleep, often around 4am.
I'm sitting here typing this, and I'm unsure what to say next. I can't work out what my days went like, I slept for most of them, and when I wasn't sleeping I feel like I was barely even conscious, just this body sitting and eyes staring but I wasn't really in there. I was brought my meals by family members and I'd eat laying down just propped up slightly on pillows. The bowl would sit almost at my face and lifting my hand up to my mouth felt like a workout and became virtually impossible after eating a small amount. After a few months of this being my lifestyle, I built up to getting down the stairs, and onto the sofa for an hour or so. This felt like such a massive step forward, and it was but it was still such an incredibly hard time. I still crawled down the stairs most days, often getting stuck half way and feeling like I couldn't possibly go any further. My head would be agony when I moved an inch and when I stood up my vision, hearing and balance would disappear and I would drop to the floor in order for it to come back. I honestly felt life was impossible, every single thing I did would exhaust me and make my symptoms so much worse. Caring for myself was absolutely not on the cards and life was hard. I had almost 40 severe, crippling symptoms every single day.
I wish the symptoms were the worst of it, but honestly the emotions were. People who aren't sick like that don't understand, "You don't get it, until you get it". When you get sick, there is a grieving process that happens. I lost a lot, my whole life before was gone, who I was before was gone. There's so much worry and fear. Fear of the symptoms, fear of whats wrong with you, fear of not getting better. Worry about the future, it feels so uncertain when you're ill. Anger, so much anger and frustration. That was one of the things I struggled with most, how do you get your anger out when you're that sick? it just builds and builds and builds and that is torture. I have never felt desperation like I have due to illness. Desperate to just feel better, I have never wanted something so much in my life and no matter what you do, short term there's no fix. Every negative emotion you could think of is felt in that state of illness, jealousy, sadness, hopelessness, guilt, loneliness, and they are all absolutely valid.
My healing journey- pending