Should I stay or should I go?

In March 2020, I had just started my long-awaited “dream” neurological rehabilitation job. A job that I’ve wanted and been aiming for since qualifying as an occupational therapist. But then the world changed! There had been lots of talk about COVID-19 but it didn’t quite feel real yet. I was naïve and initially thought that this was media hype and would not really affect me … oh could I have been any more wrong!

Acute Covid-19

I managed 2 weeks in this job before suddenly feeling unwell. I felt incredibly tired and developed a fever … oh no, was this it?

The fever came and went over the next 2 weeks, along with fatigue, aches/pains and I completely lost my sense of taste. During my time off sick, many more of my colleagues had also succumbed to this illness and called in sick. The rehab unit I worked in closed and we were redeployed to the general hospital. The news, was showing story after story of the NHS staff and how much pressure they were under.

I wasn’t sure if I was ready to go back but I felt like a fraud being at home. I would go around in circles – should I stay at home or was I well enough to go to work? This has been a running theme for me throughout this time. Never quite knowing what to do for the best. Do I go to work and see how I feel, or stay at home? If I don’t feel well at work, do I ask to leave? But then if I’ve already stayed for most of the day what difference is an hour or so going to make? It has been a constant battle for me.

My first day in redeployment, I got to work and remember thinking I'm not sure if I'm ready after feeling exhausted from getting changed into my uniform … I'll be ok I thought. It’s normal to feel tired when first returning to work after having an illness. How wrong I was! Hindsight is a great thing, but I wish I could go back to this very moment, give myself a shake and ask myself what on Earth I was doing! I was not ready at all to return to work! What if I stayed off sick for longer? Would I still feel like this?

Weird and Wonderful Long COVID Symptoms

I was redeployed to an acute stroke unit, luckily this was my previous job (I’d only been gone a few weeks) so I knew the team etc. However, work was nowhere near the same, new colleagues, new processes and a new 7-day rota.

I felt incredibly tired, had headaches, felt lightheaded and would have times where my legs felt like jelly. It's a migraine I thought. I am used to experiencing these and they often make me feel a bit dizzy/lightheaded. One thing that did puzzle me was that my daily never-ending headache did not feel like my normal migraine. But I didn’t think much of it. Stress, tired, and change of working pattern is the same as a migraine, in my mind.

But then everything just kept getting worse. I was getting more and more breathless and even climbing the stairs was difficult. I felt lightheaded & would have funny episodes on the ward like my legs were going to give way. This makes a job in neurological rehabilitation a bit difficult.

Every day I would add a new strange symptom to the list - cognitive impairment/brain fog, word finding difficulties. Reading patient notes and emails was difficult. I’d have to read it over and over as it just wasn’t going into my head. Every day, people would talk to me and I'd have absolutely no clue what they were saying.

At times, everything would feel like an out of body experience. I was there, but not really there. I’d have a strange wave of feelings as if I'm about to faint and my heart would feel like it’s racing.

I look back at this time and have absolutely no idea how I was still getting up and going to work. I was lightheaded from just getting out of bed. I cried getting ready for work once or twice, as I just felt so tired and pathetic. I didn’t tell anyone, as I thought people would think I was mad or wouldn’t believe me.

A perk of working in a hospital is that colleagues can usually notice when you are about to drop, and made me sit down and do my observations (heart rate, blood pressure, oxygen saturations, respiratory rate, and body temperature) over the next few days.  My observations over the next week or so appeared to show random spikes of high blood pressure and tachycardia (high heart rate).

So much so, that one day during a "funny episode", I was sent home by the ward consultant. “This could be an after effect of COVID-19" he said. I’ve only recently realised how important and pivotal this moment was for me. I had not put COVID-19 and the way I was feeling together until this point.

I had spent pretty much all of this time thinking that I’d totally lost the plot and was going mad … I still do sometimes.

I then found a Facebook group "Long Covid Support". I couldn’t believe it when I read all of these posts from people who sounded just like me. It was such a relief in some way, it’s not in my head. But it was also scary. What do I do now?

After being sent home in July 2020, I was off sick for 2 weeks, then returned on "lighter duties" and used annual leave to shorten weeks and ensure I was getting frequent time off. However, frequently my colleagues would tell me to go home but I would stay and kept pushing through. I returned to the neurological rehabilitation unit in September and continued light duties until November, when unfortunately I crashed again and was off sick for a further 3 weeks. I then returned on a phased return, which I am still doing now. This means that I have not worked in my full capacity since July 2020.

I am currently working 4 full days per week, but it’s not easy by any stretch of the imagination. In fact, it’s incredibly difficult, if I’m absolutely honest.

I am lucky that the occupational health team have been supportive, alongside my line manager who has been very understanding. I am still having ongoing conversations with them regarding my hours, and at this point who knows what the future holds for me work wise.  

I have found the uncertainty of this illness and the implications really difficult to accept. I say it all the time but it is a total rollercoaster. It’s hard to pace and plan when you have no idea how you are going to feel from one hour to the next. It has got to the point where I dread people asking me “how are you?”

I never know how to answer that question, as the answer can change so quickly. It’s as if I feel I have to commit to the answer I give, if I say I’m ok then I feel an added pressure to feel ok all day, which as ridiculous as it sounds, I can’t guarantee. It’s all been going on so long I feel like people are getting as bored and fed up of it all now as I am!

I have days where I feel a bit brighter. I start to think I'm getting better and then the fatigue hits me again. It's not normal tiredness and is difficult to explain. It's how I imagine it feels when you've had surgery. Just overwhelmingly tired, the slightest action wipes me out.

On good days, I try not to get carried away and say “fingers crossed but I’m not getting my hopes up”. But this is easier said than done and it always hurts when I feel bad again.  I also feel like when I say that, people may think that I’m being negative or pessimistic but I’m actually just trying to protect myself. It’s a mistake I’ve made so many times, maybe I’m not as quick of a learner as I thought!  

“You just need to pace”

I am now a person who lives their life by the “The 3 P's” … I'm trying to be my own Occupational Therapist (OT), constantly trying not to overdo it. However, it turns out I’m much better at giving advice than actually implementing my knowledge and skills into my daily routine.

In some ways it has been a great insight into the experiences of people living with chronic conditions, and I have definitely learnt how difficult it is to pace. I’m trying to take any positive I can, so if any of this experience can help me in my clinical practice, then that is a good thing. But I would not wish this on any one.

In my role, I am all too aware of the importance of managing expectations and adjusting to limitations, but it’s really difficult. Before March 2020, I was a fit and healthy 30-year-old with no pre-existing conditions. How and why is this happening?

Validation

I am incredibly lucky that I have not experienced any negativity or doubt from medical professionals. I have not been referred to a Long COVID clinic, but my GP did refer me to a respiratory consultant, ironically at the hospital where I used to work. I am now under a cardiologist there too.

I actually can’t think of any words to describe the admiration and gratitude I have for these consultant’s and all of the professionals and former colleagues I have met at various appointments there. I would be totally lost without them.

They have both started me on various treatments (inhaler and beta blockers) as a trial to see if this helps my symptoms, and the aim is to reclaim some quality of life, so fingers crossed. Did I think I would end 2020 under a respiratory and cardiology consultant no way … now that was a plot twist I wasn’t quite expecting!

It has been a strange experience returning as a patient to where I worked on and off for 10 years, now being on the other side of it all. I will also be taking some of this experience into my practice. It’s so daunting being a patient!

However, it has been strangely comforting returning to somewhere that I know so well for these investigations and appointments. Thinking about it now, I guess it took some of that dreaded uncertainty away.

Count Long COVID

However, I also feel a bit guilty that I am receiving such great care and help. I have seen so many stories of people with Long COVID who are not only having difficulties at work, but also difficulties accessing medical support. For example, those who are unable to access Long COVID clinics as they were not hospitalised or did not have a positive PCR test. This is utterly ridiculous and needs to change. It is currently estimated that 1 in 10 people with COVID-19 will develop Long COVID. We all need support and there needs to be more awareness of the risk of developing Long COVID.

I am so lucky and relieved to have found peer support through social media, particularly Long COVID Physio. I think the work that the group have been doing to raise awareness is so important and I am going to try and raise awareness and advocate for appropriate care and treatment as much as I can (fatigue permitting of course)!

Today is “Day 330” of this journey. I am hoping that maybe in a few months I will be on the right track … but did I ever envisage that I’d still feel like this in 2021, nearly 1 year on since my acute illness? No way!

Fingers crossed these treatments work as I just want my life back. I miss the old me!

However, it is comforting to know that through peer support, I am not alone and haven’t completely lost the plot.