I was through talking about shielding. After putting a lot of time, emotion and bearing my soul writing about my experience in my series and the subsequent media work to raise awareness, I was hoping to put a lid on that whole chapter.

Then something happened this week that ultimately confirmed my fears. Fears of what I had been campaigning about for the last month or so. I thought I was prepared for all the change that was to come. As I sit here with tears in my eyes writing this, I was wrong.

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There’s changeable weather; then there are flash floods

As shielding came to an end in the UK on Saturday 1st August, I was as prepared as I could be. I had a small number of close family members over on Sunday and a plan to reintegrate with society slowly. However, this quickly went out of the window when on Monday, my pain ramped up. Ideas to try going to a shop or out in the car on Tuesday were another thing lost to the growing list of plans my health has chewed up.

Today, Wednesday, was the first day that my boy would have to go to a form of childcare as both my wife and I are working now with the pausing of shielding. On this occasion, he was going to my parents around 20 miles away. I was anxious, but I didn’t perceive too many significant issues other than fatigue from the much longer day.

Routine is king with autoimmune conditions

Days, when I have to run Dylan to childcare, are always challenging. Not because of him but because it makes squeezing my usual two-hour long morning routine of hot baths, a long walk and stretches in impossible. This day was no different. I grabbed a quick shower at 5:30am and by 6am, he was wide awake.

So already at this point I was stiff, sore and felt on the back foot.

The next issue came with the drive. I have not driven in months. I literally cannot tell you when the last time I drove was. Possibly late April/early May? Now it should be like riding a bike, right? And in some respects it was. What I didn’t account for, however, was the anxiety. The awareness of being responsible for my son’s safety and most noticeably, the pace of the outside world after spending so many months inside or walking my dog across fields and footpaths.

It felt like the whole world was in a hurry, that I had stopped to tie my shoelaces in the middle of Piccadilly Circus. It was unsettling. I was no longer operating on autopilot.

A surprising attachment

The third wave from the flood of change I wasn’t ready for and certainly didn’t consider. I had already consoled Dylan earlier when he cried as his mum left for work, something that he hasn’t witnessed since May. Again, he was upset when I left him with my parents. But I couldn’t understand why I was so emotional on the drive back home. Then I realised; I have not spent a day apart from my son since February.

I’ve often talked about how he has been my saviour through this whole chapter of my life, even before shielding with my health’s deterioration. He was my focus and motivation. My reason to keep putting one foot in front of the other. So to suddenly be apart, struck me.

I’ve had countless days working all day in the study while he’s downstairs with my wife. It’s as torturous hearing his cries and not being able to assist as it is joyous hearing him giggle over my phone calls and meetings. I hadn’t appreciated the bond we had developed these last five months until I had to leave him. It’s upsetting as well as heartwarming.

The final straw

My breaking point came later on the drive back home. My left foot went numb, and I had to pull over to a concrete pad on the edge of farmland and wait it out, with nothing other than my thoughts.

This is nothing new. I’ve been having issues with hands and feet randomly going numb periodically over the last couple of years. It’s presumed linked to my nerve pain. But this was different. It was the first time it had happened since I was driving, the first time in the last six months where it was an actual problem. Not just in terms of safety, but where it was a direct challenge to my responsibilities and reliability.

It was like a brand new reminder of the adjustment I have to make. Something else my poor health interrupts. Complicates. Takes away.

It was at this point I broke. The barrage of change was simply too much. My sea wall gave out.

Casting as sad and pathetic a scene as the mind can paint when picturing a grown man, forehead on the steering wheel, flinching in pain, sobbing, on a desolate, manure-bordered concrete pad, hating the life and body he now finds himself in.

After 20 minutes, sensation returned to my leg and I drove home. Promptly crawling into bed.

There is only so much your defences can take

I write this section a few days later, intentionally. When my pain is now back under control, my head clear, and I’ve had time to get over this blip and process events.

Now, none of these events experienced are terrible or indeed unexpected, but it’s a result of how shielding was so promptly ended, without handover or support.

People were called back to work on the 1st August but we were told to shield until 31st July. So when did we get the chance to drive, do a test run in a shop at a quiet time, reacquaint ourselves with other people, situations, routines?

A tidal surge

I was lucky. I was already working remotely but if, for example, you were a supermarket worker who had been shielding for five months only to go straight back on the checkout on 1st August – I cannot imagine how terrifying that must have been.

We have seen nothing other than what was on our TV screens – and if, like me, that constant stream of scaremongering, clickbait media we now find ourselves flooded with was too much, you probably avoided it. I stopped watching the ‘daily COVID briefings’ back in April for that very reason. Not because of the information provided, but the constant fear-igniting questions being asked by the same journalists day in, day out.

We have essentially been in prison. Did nobody give any thought to people’s mental health, job security, support or wellbeing when a random date was selected to end this with no other form of a plan? Would a phased approach be so novel?

I’m lucky. I’m resilient and have people around me like my son that will always give me no other choice but to go on. Other’s facing a day like I had this week, off the back of 5 months under house arrest, perhaps with no garden, friends, or stuck in a tower block reliant on food boxes may not be so strong in this riptide of change.

When the tide goes out, what mess will be left to clear up?

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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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