One of the hardest things to do is admit you’re sick. Not just feeling a bit ‘off’, but properly sick, in a life-threatening way. We hear so much about ‘man flu’ and we live in a culture of presenteeism and hustle, where the only way out is through. Keep pushing, and your determination will see you through.
It’s over three years since I started to get properly sick, and I’m still dealing with it, and actually it seems that I might have had an underlying condition for a while longer that wasn’t spotted. Looking back, I just didn’t know how to say how I was feeling, not really, and it’s hard when you have a reputation for resilience and reliability.
If I go right back, somewhere in about 2007-2008 something started to go wrong. I suddenly got arthritis in both hips, reducing my mobility almost overnight. X-rays confirmed that it was significant, but I got advised that I was too young for a hip replacement and got physio that managed to overcome some of the worst aspects of it. Other things started to go wrong too; whilst on a vacation in The country I rolled out of bed, and ‘something’ went wrong. It was a pain and numbness in my left side, that was eventually diagnosed as acid reflux. I was on the standard PPI drugs from then, although I had doubts that the diagnosis was right.
I had couple of spells of anxiety, quite debilitating, affecting my ability to drive. I did notice that taking anti-anxiety drugs actually removed some pain and also the need for any PPI drugs. But I have never been of the opinion that the anxiety is the root cause of anything, it’s more a side-effect.
Fast forward a few years. It’s 2018. There now follows a timeline of events that include multiple visits to doctors, and eventually the hospital… I omitted names because this isn’t about that. I’ve thanked the people that I need to and lessons have been learned by others.
Jan 4th-5th 2018
Trip to London. I’ve noticed that I am losing weight with no specific effort, and while in the office I experienced some odd symptoms including being unsteady on my feet.
Jan 9th-11th 2018
Trip to Germany. Further odd symptoms, including oversleeping and almost missing the start of the working day, which has never happened. Whilst in the office, HR takes me to one side and expresses concern that I look very sick and unhappy. On the final day, I experience a hot flush/sweats/lightheadedness and almost faint. This has happened a couple of times before but never like this. It happens again at the airport. I put this down to stress and ignore it.
Feb 1st 2018
London trip. Experience a dizzy spell and someone has to help me sit down.
Paris. More dizzy spells. Colleagues tell me I look unwell. They have noticed my weight loss.
Germany. I have to make quite a few people redundant as part of a business reorganisation, a horrible experience as many of the people were people that I liked (although also I somehow got volunteered to fire people I’d never me, it’s that resilience again I guess?). Whilst walking back to hotel on 20th, I faint, but somehow manage to prop myself up against a wall such that nobody notices.
I lost my voice completely for no obvious reason, not really a sore throat. Carry on working (as I am remote and rarely had to speak to anyone directly). Doctor gives me antibiotics.
Apr 27-29th 2018
Holiday in Netherlands. As soon as we arrive at the hotel I go to sleep and we lose the first day.
Lose voice/flu-like symptoms. Get antibiotics again.
May 28th-Jun 1st
USA work trip. Mostly just exhausted. I am taking a lot of painkillers and probably also drinking a bit too much to get through the stress.
Meet former work colleague who is now CEO of a company. He offers me a job on the spot. I tell him I am too sick & exhausted to do anything and unfortunately can’t take it.
Doctors on morning of 17th, another spell of flu-like symptoms, get antibiotics again. Despite this, fly to Paris for two nights.
Visit doctor to ask about the overall situation. She puts it down to stress and exhaustion, and tells me that I need to be off work for 4 weeks. Her opinion is that I will die if I do not stop immediately. Heart attack, stroke or pneumonia, she says. I start taking Sertraline for anxiety which has interesting impacts on my stomach problems – they immediately go away.
At home recovering. No further symptoms but am constantly tired and sleep a lot.
Back to doctor. Cannot remember what this one was. May have been ‘back to work’ appointment.
Whilst in London office, faint briefly but recover without anyone noticing. Then I have a 1-1 meeting and start to heat up, and pour with sweat. He is shocked and we stop the meeting. I go home without telling anyone what just happened.
My wife gets severe flu and is bedridden for a week. This is unusual for her. At some point I also catch it.
Sometime in September: notice that I smell different, like popcorn. Mention it to a few people. Later this turns out to be a known symptom of a lung condition (either abscess or pneumonia).
Meeting friend in London and realise that I am really unwell and tell him so. It feels like something really severe in my respiratory system or heart. He tells me to get on the train home, so I do. This was the point where the illness crossed over into something that couldn’t be ignored. Some time later I learn that there were people with flu and pneumonia in the office that day, and I do remember telling someone to go home because she was coughing so much. If only I said the same thing to myself more often.
Doctor – get antibiotics again.
London office, then an evening out with the team. I have to take an important work call and end up walking and talking through the cold streets of London. Decide to go to my hotel instead of rejoining the event. My symptoms start to come back yet again. Despite this I take a trip to the Paris office on the Eurostar. I am coughing the whole time. When I return to London late on 15th, I go to my hotel, and feel too ill to go to eat at a restaurant. End up getting a sandwich from local shop and go to bed. I remember thinking that this isn’t normal.
I am coughing up blood in small amounts. I go to doctor and get antibiotics again.
Somewhere around this time, I have some sudden neck problems, and it clicks in such a way that my breath goes away. Self induced whiplash? It reminds me of the ‘getting out of bed in The country’ incident. Same symptoms. It’s enough to stop me doing much for a few days.
New bay window being fitted at home. The house gets incredibly cold and I start to suffer symptoms again.
Paris again. Evening meal with colleagues. I cough so much people in the restaurant move away from me. I go back to the hotel feeling incredibly sick.
Meal with family. Cannot eat anything. From this point onwards, I struggle to eat and rapidly lose weight. Around this time I am going out to a lot of gigs and meeting people, trying to keep up commitments, and struggling to walk to a taxi a couple of times. I knew I was ill but just kept going.
Getting up from the sofa at about 4pm, I struggle to breathe. I go to the kitchen and tell my wife to call an ambulance. She thinks I am just having a panic attack because of how anxious I’ve been. Somehow I manage to start breathing again and we go out to a gig in the evening. I am confused and struggle to find the taxi and get home. I remember that I took various items with me in a bag in case I had to go to hospital.
Back to the doctor. He is new and does not do basic checks – however writes down my temperature as normal – without taking it. He thinks I have strained chest muscles coughing. Gives me strong co-codamol. This doctor is the one who really should have noticed and got me to hospital.
Start taking Co-codamol.
Over the next few days start to hallucinate.
Gradually I am unable to go to the toilet. I put this down to being a side effect of the co-codamol and stop taking them.
My wife goes to my brothers with Mum and Dad for Christmas dinner. As they leave, I say I feel like I am dying but I don’t think they really understand that I mean it. Almost immediately they have gone, I suffer severe rigors. I wrap myself around in my quilt for an hour until it passes and somehow I manage to spend the rest of the day watching TV but am unable to eat anything.
Rigors and night sweats. Hallucinations. Difficulty breathing. Neck and chest pains.
Back to the doctor (same one as before) on 31st… again he is not very thorough and sends me for an ECG, plus more antibiotics. He doesn’t notice that the PPI for stomach issues that I am taking prevents antibiotics from working.
My weight is now down from 13 stone to 9 stone.
Went down to town with my wife, she is convinced that I am suffering from panic attacks and need to be exposed to it, which I also believe. I somehow get to a restaurant, have to sit down. I tell her that I think I have pneumonia. I really struggle to walk back home, it’s only a five minute walk under normal circumstances.
Jan 2nd 2019
ECG comes back as normal.
I go out for a walk and have to sit down on the pavement. Perhaps the most fortunate thing happens when I see a neighbour and tell her I feel seriously ill; she can immediately see it. She contacts my wife and tells her to do something. This might be the point at which my life is saved.
My wife’s Nan dies aged 101. This has been distracting her from my illness (and has been a long time in her decline). It’s incredible to get to 101 and die from old age, instead of anything else.
Jan 4th Go to Chiropractor. I have somehow got the idea that this might be a spine/neck problem. In fact, I do have my spine realigned as usual, but after this something is very wrong. I start to cough up grey/yellow sputum in huge quantities.
Doctor. See nurse. She is experienced and is immediately concerned when she sees my notes. She takes temperature, oxygen etc. and tells me to go straight to hospital, without delay. As a result I go there without taking things like my phone charger. One thing I learn is, never go too far without your charger. These things are like gold dust.
…and so it begins…
Immediately followed by a CT Scan.
Transferred to Ambulatory care.
Doctor in A&E tells me that my left lung has effectively filled with fluid and cannot be seen. I am immediately put into a treatment room. My wife arrives. There are more than five doctors in there now. They put a chest drain through my back and almost straight away, 2 litres of pus drains out. They are calling this ‘reactive pneumonia’. I am transferred to the acute medical unit in Local hospital, put on all sorts of medications and drips.
Nobody can understand how I was able to function with this level of infection in me. They had been joking about it being ‘man flu’ until they saw the pus. I suppose if someone is able to function somewhat normally, it’s hard to believe that they are dying of an infection.
I have not had much experience in the hospital until now.
Interestingly I suddenly develop an appetite as the drain continues to draw. They do not know what the infection is and I am subject to all kinds of tests. Move bed 3 times. There are people in the ward with serious problems, one person has shot himself deliberately in the leg. Someone else wanders around naked.
Whilst in Local hospital, my neighbour, who is a nurse there, visits and brings tea.
Medical students keep popping by and photographing the chest drain, which frankly looks like chicken soup is coming out. There are probably pictures of it on Instagram.
Moved to the chest ward. They start to talk to the specialist thoracic team at Major hospital. I am receiving injections into the drain in my back to help break up the infection. The drugs are experimental and I have to sign consent. During the night, they forget to close the drain and I leak pus and lung fluid all over the bed. Man opposite is angry and violent towards his family and even the nurses. Eventually discharged himself, thankfully.
Some improvements in the infection. About 4 litres has drained but there are some pockets left. New person opposite talks deliriously in his sleep, seems to be reliving a painful memory of being locked in somewhere – he keeps shouting ‘Shed!’. They tell me that my immune system is completely compromised and put me on treatment for this, which causes constipation for weeks to come. It takes over a year to find the root cause of the immune system issues. I have friends and some family who visit me, and keep me going to some extent. One of my oldest friends really makes me laugh, offering to jump on my chest to get the remaining ‘stuff’ out.
The original chest drain is full and has to be changed. Because the original was fitted in an emergency, this was quite a challenge to them. The site of the drain entry becomes infected and bruised.
Up and down with news about referral to Major hospital. One consultant thinks I am recovering, another thinks I am in danger. When I look back, I realise that nobody has much experience of this level of sickness.
Woken in the middle of night for chest x-rays. I was taken down there in a wheelchair, and just pyjamas and no blanket, and left in a cold corridor waiting. I’d forgotten to take my phone with me and this was a real low point. I was freezing cold.
First concrete mention of needing surgery. The rest of the infection is not draining and may have set.
Transferred to Major hospital with possibility of surgery next day. I am in a ward of very sick people. One is also violent and is regularly smashing up equipment and shouting.
Surgery didn’t happen but I was nil by mouth for most of the morning. Porter is nice to me and makes a nice plate of sandwiches for me. Another nurse can tell how distressed I am and brings extra cups of tea even in the middle of the night. Meet surgeon for the first time. He is an amazing person, as are his team. Surgeon and the registrar from the team chat regularly with me.
Same pattern. Nil by mouth, then no surgery slots. They are aware of how nervous I am and are telling me it might only be keyhole surgery. Man in the next bed keeps playing his radio at full volume and shouting “NEED A POO”. At times it was actually funny.
Surgery at 9am
Taken to theatre by the person who made me the sandwiches a couple of days earlier, also there was a medical student who I’d taken some time to speak to on previous days. I wish I could remember her better as her smile was very reassuring. It was her first trip to the operating theatre.
While waiting, I was asked one more time if I understood what the operation was. I had already signed the risk of death consent form. Surgeon was chatting about my music, as he was quite interested and we had talked about it a bit before. While he was doing that, he asked the anaesthetist to ‘wash out’ one of my cannulas, in fact she was injecting me. I feel myself going under but very slowly, and they start to wheel me in. I see the operating table, which is much higher up than I’d imagined, with a huge light, and all sorts of instruments on arms next to it.
Full thoracotomy, lung decortication, removal of a huge abscess. Wake up at 3pm and transfer to HDU. Am told that surgery had complications. Huge air leak means the lung is partially collapsed. I have two chest drains replacing the original one, plus a catheter, oxygen mask, various drips including morphine.
At night start to become cold and lose consciousness.
Ward Sister tries to steal my phone charger. I demand it back.
I am given two blood transfusions. At this exact point, I start to feel better.
Surgeon feels that it will heal faster if certain pressures are set on chest drains. This appears to improve things but the noise of the motor on the drain is what I remember.
Massive issues with getting the cannulas to stay in my arms (too hairy, apparently), meant I was not getting morphine. I had a night of pain.
Still in HDU
Air leak is not healing beyond a certain point. Every time I go to the toilet the air leak, which is measured on the chest drain, starts to come back. Cough up huge sticky lumps of bloodied material.
Moved back to ward.
Too sick to go for x-rays, they have to do them in my bed.
In the night, one of the patients dies in agony of a heart attack. His wife comes in later and they tell her he didn’t suffer. He was a nice man, probably about 70. If you ever hear, ‘he didn’t suffer’ when someone dies, think carefully about believing it.
More monitoring, physio, and I have one of the two drains plus catheter removed.
Some signs of improvement.
I am managing to have showers etc. which is empowering.
They moved me from intravenous morphine to oral, and this really helped. My hairy hands and arms meant that it was difficult to get any plasters to stick and hold things in place.
During this whole time I could not bring myself to look at the wound. I was sort of in denial.
First mention of being discharged, but with a ‘flutter bag’ due to ongoing leak.
Cut my own hair. This surprises people. Start to get dressed every day. Go downstairs to vending machine for chocolate and tea.
Manage to walk to the hospital shop. Bought some cheese, which is the one thing that no hospital meals seem to have. I was craving it.
Manage to get to the hospital restaurant and have a cooked breakfast.
Moved to a different room a couple of times, this was a sign of things changing and them making plans for me to leave.
Surgeon confirms that he will send me home. We talk for an hour about things. He tells me what has actually happened. I had pneumonia, pleurisy, an abscess and empyema, which had turned to sepsis. He said I would have died around Jan 12th if they hadn’t have put the first drain in, he also tells me that it was still too late for me to recover fully – it was a close run thing that the infection didn’t spread to my heart and spine, and there could be lasting effects from having sepsis for over a month. The breathless episode on Dec 15th was likely to be a collapse of the lung. The sputum after the chiropractor visit will be because the chiropractor burst an abscess. In the end they drained more than 5 litres of pus from my chest. He also tells me that I have hemidiaphragmatic palsy – my left diaphragm isn’t working fully, sometimes caused by neck issues/whiplash, or a stroke. It could be either of these in my case but there is no way of knowing, plus it is rare to have sepsis for as long as I had it, and this may have caused some paralysis of the diaphragm also. It usually goes with time. Could have been caused by the odd neck crack late the previous year.
Flutter bag attached. These things allow fluid and air to drain from the chest.
Home in the evening. I feel like I have died and that this is all a dream. Minnie the cat is delighted to see me and paddles me for two hours, purring loudly. She looks at the flutter bag and looks back at me a couple of times, somehow she knows. Dylan the kitten – has to be kept away from the bag. My wife has people around and continues to entertain them even though I’ve been away for weeks, and in any case I just want to be in bed with a cup of tea. They are relatives and are dealing with the aftermath of her Nan’s funeral, which has been overarching a lot of what’s gone on.
Visit my actual GP for the first time in years. He looks at my notes and goes white, shaking his head. Does not speak for several minutes. I complain that things have been missed and he agrees. 2 weeks later he announces his early retirement. One of the other doctors is gone from the practice shortly after. I do not take this matter any further as I have seen first hand how stretched the NHS is. However I am in no doubt that the GP practice was negligent and did not take it seriously, the number of times I was given antibiotics was clearly wrong. The nurse in early January is probably the person who saved my life in the end, when she sent me to hospital.
I am told that my life expectancy is reduced and that I have to make changes, and not expect myself to get back to where I was – endless travelling, London twice a week, etc.
I am signed off for a month. Probably it should have been longer.
I thank the surgeon publicly for what he has done to save my life (on LinkedIN). We stay in touch.
Back to work, but remotely and with limited hours and duties. The company is as understanding as it can be, in all honesty it’s probably hard for anyone to imagine how sick I’ve actually been.
I am breathless a lot and need to sleep for two hours in the middle of most days for a while.
First time back in the London office. Everyone is pleased to see me. From this point I only go once a month on average.
Things don’t really go back to normal. I am not engaged at work and eventually change roles, I even talked about possibly taking redundancy. Less travel but I am a bit adrift. I cannot let go of what happened. I realise that I didn’t get a diagnosis given to me until after the cure. I didn’t realise why I was surrounded by people with sepsis… That’s because I had it. They didn’t tell me because I was so nervous about being in hospital.
I have cognitive issues. I’m slow, forgetful and confused quite often. I don’t see things right in front of my eyes.
I started to associate my iPhone with being in hospital, since I was glued to it most of the time. So I swap it for something different to try and break the association.
Towards the end of the year I start to push myself back to how I used to be, however my mind and body just aren’t up to it. I have not really accepted the new reality. I have PTSD.
Difficult time as I was reliving things somehow a year after. Stuff kept coming back. Terrified of getting sick; start to see news of coronavirus & start wearing masks and isolating. I continue counselling for PTSD.
Find the underlying cause. I have MGUS, which causes immune problems and may eventually lead to Multiple Myeloma. This will have caused the year of sickness before the final sepsis. I can trace back the possible start of this to 2008. It seems that the version of MGUS that I have is one that can flare up, and might cause sporadic weakness in the bones, with back and neck problems probably coming from that.
It took some time for me to understand that MGUS is serious and will be with me in the background all the time; I just have to hope it doesn’t go into the foreground. I had some pain issues that were debilitating for a while and I am taking opioids again. I am gradually understanding that this is something that I have to live with. It’s called Post Thoracotomy Syndrome. I have syndromes now.
I’ve been in limbo due to COVID as well, and even watching news and hearing about long COVID has made me a bit angry, these long term effects of illness can happen to anyone who gets severely ill. Perhaps there’s a silver lining for those out there with ME/CFS and similar, that society now understands that this is a real thing and not just in the mind.
The moral of the story is: if you are sick, and you know you are sick, don’t let anyone, or society, tell you that you aren’t. Only you know how you feel. It’s on you to explain it to people. I’m doing this now after it all happened. Ideally, if any of this happens to you, you will explain your pain in great detail and get treatment. I saw the worst and the best of the NHS; the lack of experience of doctors prevented my getting the right treatment (also one doctor missed that two of my drugs didn’t work well together), and then the most incredible surgeon saved my life and the genuine care of the people that put my back together is something to behold. I should also add, plenty of the life-savers were people that might be vilified as immigrants by the right-wing. I was never of that mindset anyway, but if ever there was an illustration of the benefits, it’s talented surgeons and doctors from all over the world that answer their calling despite the hostility from people who have never needed their help. Not yet…
I should have stood up for myself around the start of 2018 and carried on shouting until I was cured. I had no vocabulary for how I felt. I have one now. You should all stay away from the hustle culture, of working harder, pushing through things. You really owe it to yourself to be sick properly, stay in bed, don’t come out until you’re ready.