Thursday 19th March, a day that will long live with me. I was walking my dog on a grey, chilly morning. Still carrying the limp on my right leg from the pain which had kept me off work the last four weeks; I received a phone call. It was my rheumatology nurse and the message was clear. Everything was about to change.

The calm before the storm

The nurse, who I know so well and go back a number of years with, sounded deflated, almost concerned. I could tell this wasn’t to be a positive call.

I had been waiting on the results of an antibody test to confirm if I had developed resistance to Humira (see below), so I assumed this was the bad news. Unfortunately, my assumption was wrong.

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It was explained to me that the result had returned negative, meaning that there was the expected level of biologic in my system, two weeks after I last injected. This meant that there was a glimmer of hope. That a different type of biologic would have the desired effect. Should it have been positive – antibodies for one biologic, pretty much takes them all off of the table. As they all work in the same way in which they target the immune system.

‘That’s great news – when do we start?’ I replied eagerly. By this point I had been in considerable pain for over a year. However, this had increasingly become a problem in the last six months. I was desperate to try something different and given the month-long wait on a test that should have taken less than two weeks, the change couldn’t come soon enough. ‘That’s the problem’, the nurse replied (or words to that effect).

It was at this point that I realised I was about to discover the true reason behind her disheartened tone.

A taste of what was to come

My nurse explained how essentially the Rheumatology Dept. was being closed down to all but emergencies. Staff re-assigned to inpatient areas, regular departments turned into wards, routine appointments and operations cancelled. All treatment changes were on hold and not permitted at this time. Meaning that antibody test result meant nothing.

This was completely understandable given the recent coronavirus outbreak but this felt different. Up until now, a minority of reporters, bloggers like myself and medical professionals had been warning of the dangers of coronavirus. However, by mid-March, although declared a pandemic by the World Health Organisation (WHO), no western countries had really responded to the threat, with the exception of Italy. These changes being made at my local hospital confirmed my fears over the seriousness of the situation. Serious spread and loss of life was imminent.

‘You need to isolate, now’ she informed me. ‘That’s alright, I have been for the last week of my own volition’ I replied. ‘I mean, not leave the house, not even to walk the dog.‘ she pressed. ‘For three months. Not to come into hospital, routine blood tests, everything. Distance yourself as much as you possibly can as this is a serious risk to you. You’re high risk.‘. I felt like crying.

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None of this was a surprise to me, I had been writing about the risks for weeks but suddenly I felt like I was in a movie. Like this wasn’t real. Out of nowhere, the worst case scenario was upon us.

Fast forward two weeks, when the whole of the UK was told to stay at home for at least three weeks, I guess a lot of people were feeling like I did at that moment. Being slightly ahead of the majority, I remember feeling very alone. Trying to explain it to family and why my son couldn’t see nanny and grandad. It was difficult and took until the end of March for the seriousness of the pandemic to really sink in with the masses.

I didn’t really sleep for a few days after that.

What is medical isolation?

So isolation is hard enough. Quarantine worse still as my wife can’t even leave the house for food (see below) but one thing that never crossed my mind on that phone call was the issue of medical isolation.

Pretty much straight after that call, ties started to be cut. The world had a much bigger issue to deal with than little ‘ole me.

I received a call from podiatry informing me that because I was on the ‘high risk’ list, they couldn’t have me coming in for my long-awaited appointment to try and sort my plantar fasciitis out. Soon after, similar messages from the Pain Management clinic and my routine blood monitoring tests. The fact that my clinicians saw it to be a greater risk for me to come into a facility to check my treatment wasn’t harming me than going unmonitored for a few months, spoke volumes.

In addition to this, my biologics review appointments were cancelled along with rheumatology consultations. I couldn’t even get help from the GP regarding pain relief due to systems being changed to deal with the volume caused by Covid-19.

Keeping in mind that when all this happened, I was off work with a flare and in a lot of pain. All of a sudden, I was on my own. No support, no plans for resolution or information I could give my employers. The antibody test had opened the door to a treatment change. A new biologic could be easing my symptoms right now but just as with any coronavirus vaccine at this time, it’s possible but just out of reach.

Isolation and social distancing is tough for everybody, Medical isolation, however, as I am referring to it as, is terrifying.

The impact of medical isolation

As of the time of writing, I have not left the house in three weeks. I have been off work since late-February.

My condition is worsening in terms of pain and it’s impact on my sleep. Fatigue and depression has also become a factor, as you’d expect with anyone confined to their home and in moderate to severe pain. I have no idea what to tell my employers. There’s no one but myself to fix me but I’m not allowed to leave the house to go swimming or to the gym to try and break my pain cycle. I can’t get treatment or specialist help and no medical professional will examine me.

My only options at this time are to try and get through to my GP for more potent pain relief. But that raises the question at what point do I sacrifice function for comfort? I can self-refer to the Wellbeing Service to help my mental health. But they face a huge increase in demand due to the pressures isolation is putting on everybody. Finally, I can call the biologics advice line and wait for a call back. But they have already told me they are not permitted to make any changes to my treatment.

To make matters worse, my son was taken by ambulance to the hospital last week with a temperature of 40.5c, difficulty breathing and was treated for an upper respiratory tract infection/possible Covid-19. After four days, the fever thankfully passed, although the harrowing hacking cough still persists for him. So now my wife is in 14 day quarantine with myself. We are having to rely on family and volunteers for our food shopping and prescriptions and I am living in the constant fear that the virus might already be in our home.

Spare a thought

So next time you complain about not being able to go to the pub with friends for a few weeks, or play Sunday league football; spare a thought for those of us who are being told we might have to stay in our homes for a minimum of three months.

Those who this flu poses a serious risk to our lives. Those who were in the middle of cancer treatment or awaiting a knee replacement. Whilst you’re being asked to stay at home and binge-watch Netflix, spare a thought for those whose life has been placed on hold. Regardless or what pain or discomfort they are in, they must wait whilst the world fights a bigger foe.

Spare a thought for the medically isolated.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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