My journey to chronic illness

In November 2019, I travelled to South Africa to see my family. Mentally, I wasn’t in the best place and as it can be for family gatherings, it had its challenging moments. I returned tired and mentally depleted. This is my truth.

December 2019 was a whirlwind month preparing for the family to come around on Christmas Day. I knew I was struggling yet I waded through, determined to put on the best damn Christmas I could. And I did. The family came around and we had a beautiful day filled with lots of love and laughter. But I was exhausted. As I crawled into bed on Christmas night, my body was screaming at me to rest.

I woke the following day feeling awful. Flu I thought. It made sense, I told myself. It had been a stressful holiday, and I hadn’t allowed myself to rest on my return. My immune system was clearly weakened. A couple of days of rest and I would be alright.

By 5pm that evening, I had a temperature of 40.5 degrees celsius. I felt horrendous. Every bone in my body ached and I had a sore throat that felt like a thousand blades were cutting it. Swallowing became an almost impossible task.

I hung in for a couple of days. In the mean time, Dave got sick too. This must be the flu we reasoned. Jordan, thankfully, missed the infection and no-one else from the family got sick too. By day 3, and with me in excruciating pain that became utterly intolerable, especially at night, we took ourselves off to the doctor. He took our temperatures. Just the flu, he said, take paracetamol and ibuprofen. We explained that we had been doing that for 3 days, but to no avail. He said to continue, that it would eventually break.

The following day, we were back at the doctors. We were discharged with the same advice.

By day 6, New Years Eve, I couldn’t take it any more. The pain in my body was excruciating, and I had developed a cough that was so painful. I was also struggling to breathe.

Dave drove me to our local private hospital since the public one had a 6 hour wait. I just couldn’t do it, especially as we suspected they would discharge us with the previous advice we had received, so we opted to pay the private emergency room fee and head there.

Within minutes of arriving I was on a bed, having bloods and swabs taken.

The doctor informed Dave that I was very very sick and would not be going home that day. They were referring me to a specialist disease doctor as they suspected I might have contracted something in South Africa perhaps, despite being home a full three weeks before showing symptoms.

Covid was not known at this time, of course.

I was taken to an isolation ward, put on oxygen, and welcomed in 2020 in a form of delirium. I remember nurses in masks coming and going, and me having a fitful night in agony, but not much else.

The following day, the specialist disease doctor came to see me. He asked a ton of questions. When did I get back from South Africa? Do we have birds? Do I handle animal faeces? All sorts of questions. I was sent for a chest x-ray, brain scan, CT scans. All the while my temperature remained high and I was in constant pain. My cough was uncharacteristic, he said. Not like an Influenza cough. He wasn’t sure if that was relevant, but was worth noting.

The doctor hypothesised I had psittacosis – a type of bird flu. We live on an acre property and do have birds around the property. He said it was possible the faeces had dried and become airborne with wind and somehow I had inhaled it. The incubation period is between 1 and 4 weeks, so I may have even contracted it in South Africa. I guess it made sense.

Day 2 in hospital and the pain continued. That night, I had 3 types of intravenous antibiotics to try to reduce my temperature which had gone up to 41 and even 42 at one point (by trying to get the infection under control). The nurses were coming in every half an hour to check my temperature. Eventually, it started to subside and the pain reduced. I managed to get some sleep for the first time in over a week.

I had many bloods taken.

On day 3, I called the nurse. I was struggling to breathe. She checked my O2 levels and true enough they were a bit depleted. She banged the MET (Medical Emergency Team) button and announced I needed help. I felt embarrassed. I didn’t want to bother nurses. 20 people filled my room and a doctor started examining me. He checked my chart, and asked for follow up x-rays. Double-lung pneumonia had developed. I was very sick, I was told. They didn’t think I was sick enough to be in ICU, but they changed my antibiotics and told me to rest. I couldn’t do anything but rest.

By day 4, I was starting to feel better. I had seen the specialist disease doctor who continued to ask me hundreds of questions. They couldn’t quite determine what was wrong with me. I was so exhausted and in a lot of pain and breathing continued to be a struggle. Later that day, the nurse came in and told me that they were starting me on Tamiflu as my results had come back as Influenza A. I said to her that I had Influenza A years ago, but never felt this bad. She said sometimes people can react badly and even die from it. 3,000 a year died from Influenza A, she said. From hereonin, she told me, I should get the annual flu shot.

In all, I spent 6 days in hospital. The hospital didn’t want to discharge me on that day, but I just wanted to be home. I was tired, bored and needed to be home. I needed to be able to walk around without the need of a mask (oh how forboding that was!).

I never truly recovered. I had lost my sense of smell and taste, I felt tired all the time, my sleep was all over the place and any form of functioning was gone. Dave did the cooking and laundry when I got home from hospital, but I never recovered enough to take it back. Simple things began to elude me – I couldn’t make simple decisions like what to wear or what to eat. I felt like someone had pulled a plug and all that remained of me was a husk.

A month later, news of Covid started to hit our shores. Friends in the UK were starting to ask if we still planned to visit in May. Not knowing just how bad it would get we assured them we would still be there. We still laugh at that.

Having been told it could take between 6-12 weeks to feel “normal” again, I waited until March, to see my GP about my persistent issues noted above. I was a mess. She suggested more blood tests. Everything came back normal. An inflammatory marker (ESR) was elevated but not hugely so.

In May I returned to her office. My symptoms were worsening. I had heart palpitations, brain fog, vastly reduced energy especially after attempting to do anything, even as small as having a shower. In fact, I had reduced showering from daily showers to every few days because that was all I could manage. I had stopped eating meat because out of the blue, one day I just couldn’t face it. I had a reduced appetite, eating a quarter of what I used to eat, but was not losing weight. I could not emotionally regulate at all.

By now, we had cancelled our UK holiday and I asked her if it was possible I had somehow contracted Covid. I asked for an antibody test. GPs were not allowed to request antibody tests she said and my tests had already confirmed Influenza A. Instead, having recently been diagnosed as Autistic, my symptoms were put down to autistic burnout as a result of a traumatic holiday and contracting Influenza A. And it did kind of make sense.

For the next 18 months, I travelled in and out of the GPs office with various ailments. Numerous tests were conducted, all came back negative, except that ESR marker. Pain had started to develop in various parts of my body, especially sciatica down my left side which would render me incapable of walking. I have pre-existing stenosis of the spine that can explain this, but I have lived with this since the age of 22, and never have I been in this much pain and my scans confirm that the damage remains moderate. Yet, here I am still feeling excruciating pain.

I developed gastric problems. Burning sensations when I eat, an inability to swallow after a couple of mouthfuls and a reduced appetite. I never lost weight. I would eat out of habit more than hunger and there were days I would eat vegan ice creams, nut bars and crisps just to feel I had eaten something. Maybe this is why I am not losing weight?

A gastroscopy and colonoscopy showed nothing of significance except a mild reflux issue.

My palpitations increased and I was sent back to the cardiologist. I had already been diagnosed with Non Sustained Idiopathic Ventricular Tachycardia by one cardiologist, then Atrial Tachycardia by another. I have had cardiac palpitations since I was 26 years old. Because they are so intermittent, no one has been able to find them except incidentally. No one could really agree what they were, if anything, although at their worst I do lose consciousness. Still, this time around, again, nothing was found. I feel them all the time throughout the day though, seconds long granted, but they leave me feeling tired.

I developed a sense of dizziness. I mentioned this to my GP and she feels there is nothing of significance there. I used to worry it was a brain tumour, but I believe I would have other symptoms of significance if I did.

22 months after my influenza A infection I have declined to the point where I have no idea who I am any more. I am constantly told it is trauma related and I need to see a psychologist. I have been seeing one for 15 of those 22 months and although I have a much better understanding of myself as a person, my inability to function has not improved, rather, it has further declined.

In May this year, having become quite suicidal with my decreasing functioning, it was decided that I needed to be admitted into a mental hospital. I didn’t want to go, but everyone around me was worried I would take my own life and I admit it was getting more that way.

Two weeks into that stay, I ended up self discharging because I knew it wasn’t doing me any good.

A few weeks ago, at the GP once more, having been asked by a friend if I had considered the possibility of ME/CFS, I asked my GP if that was possible. She confirmed that I met all the criteria, but she wanted to check a couple of things first. She wanted me to do a sleep study to check for sleep apnoea, followed by seeing a rheumatologist to check this persistently raised ESR.

So, this is where I find myself today. My GP and Dave think I have ME/CFS but I still have to go through the process of elimination to rule out everything else. In the meantime, my daily functioning has been reduced to finding myself out of bed and dressed as an achievement and if I manage to actually shower, well that is a day to celebrate indeed.

On the outside, no one would know I was sick. I can walk and talk and look (mostly) “normal”.

What they don’t see is the daily struggle.

I wake up and I can’t just simply get out of bed. I have to ease into getting up and that may take half an hour or a couple of hours.

I rarely shower and dress in the morning, or even at all during the day. I have set myself the goal of showering at least twice a week.

I have lost my ability to read or watch TV without getting really tired really quickly. I scroll through the internet a lot to keep my boredom at bay.

Brain fog is horrendous. There are days I struggle to string two thoughts together. I have ADHD and have always had an overactive mind. Now there are times where I know I have no thoughts, I am just staring into space. I will ask Dave over and over if he thinks I have dementia.

Bodily pain has become my bed fellow – my spine, my wrists, a weird sharp pain in my left flank, a stabbing pain in my left breast, my knees, the backs of my heals and achilles tendon, days where my neck is so painful it feels like it can’t support my head, terrible headaches, pains in my eyes. I have no apparent causes for these pains, but they exist.

I haven’t slept well since I got Influenza A. I have fitful nights, can’t get into a deep sleep, have nightmares and often wake up because of heart palpitations or simply my body shaking internally. Things like melatonin have not been helpful.

The fatigue is probably the worst. I desperately want to get on to do things, but my brain and body just won’t let me. When I finally manage to overrule them, I pay for it later – usually the following day, but sometimes that afternoon. I can feel the crash coming, and if I don’t listen it is far worse than it would have been. I feel an anxiety in my body, a restlessness (I can feel it now as I type this – my body saying enough now, Sarah, come back to it, but now, we need to rest. And I am fighting it because I want to finish this post. I will definitely pay later). You see, it is not only physical exertion that causes me to crash, but emotional and mental exhaustion too. Anything can send me into a crash. That is why we are told to pace ourselves, only pacing can be a bit tricky. My crashes manifest in emotional breakdowns. I just start crying and all I want to do is sleep, but I can’t sleep during the day for some unknown reason (ADHD perhaps), so I just sit staring into space, or scrolling.

I am very tired of feeling so tired all the time. The notion that this is something unlikely to improve is quite devastating.

I am trying to accept where I am, and find gratitude in what I have. I do what I am able to do to help ease symptoms – eat well, sleep better, meditate, learn my signs of doing too much. It isn’t easy. My ableism is quite severe, I have found. But that is another story for another day. I’m still learning. Yesterday I had such a good day, well paced I thought, but it turned out I had a terrible night and now I am in a crash. Emotional, sore, heart going like the clappers and so so tired.

In the mean time, I have to end this now because I am so tired and I have to rest. I have no choice.

The journey continues.