Global pandemic with an underlying health condition

Living through a pandemic with an underlying health condition

I’ve had 30 surgeries in my life, including a stoma, and I’ve always recovered well. Then disaster struck. 6 years ago a hysterectomy perforated my small bowel and my life changed forever plunging me into complete hell. I was in hospital a total of 6 months, told I may never eat or drink again, was fed through my central vein (Parental nutrition), the hospital was 100 miles from home, so I was isolated, my husbands had to finish work and move to temporary accommodation nearer the hospital and my mother, for whom I helped care for, had a further brain haemorrhage, and had to go into a home. Without doubt my ‘annus horribilis’. How do you recover from that’, I was asked, well in my case you don’t but you learn to live with it because you have no choice. 

The perforation resulted in an abdominal fistula which means I have a connection from my small bowel to skin. I already had a stoma 30 years previously, so I now had two bags and a dressing permanently on my rather mutilated stomach wall. My bowel recovered enough to enable me to eat and drink a limited diet which was a massive plus point as many people with this condition remain on parental nutrition forever. On top of this I developed other rather horrible health conditions and so life became pretty compromised. I became seriously anxious about my body and life in general preferring to stay indoors, rarely going out. Most of the things I enjoyed in life were taken away by that surgery - good food and wine, cooking (I couldn’t bear to be around food), spa weekends, nice clothes, feeling happy and content – all gone. I was however fortunate in that I had a loving family, two beautiful granddaughters and twin nephews who filled my days and eased my angst, at least when I was with them. I tried to rebuild my life, to embrace my ‘new normal’ and I succeeded to a certain extent although the ‘trauma demon’ was always there in the background, waiting to pounce.  I tried to introduce things that kept me happy in life like a monthly visit to the hairdressers, coffee dates with friends plus of course the children who filled my heart with joy and gratitude. 

Then a pandemic hit. 

2020 was to be my year of acceptance, the year when I embraced my ‘new normal’ and moved on from the trauma of that catastrophic surgery. I’d been told they could not repair the damage as it was too dangerous and so this was it. In March 2020 with news of this nasty virus taking hold, no one could have imagined what lay ahead and when the Prime Minister shut the country down, my heart sank and those feelings of isolation, fear, and massive uncertainty about the future that had swamped me when my surgery went wrong, came back with a vengeance. At the start we embraced it – a daily short walk enabled us to wave at our little granddaughters over their garden wall, often singing songs to them much to their delight and our embarrassment. The novelty soon wore off though as the crisis worsened and my heart broke as I couldn’t see the special people in my life. The parks were empty and quiet, the streets I’d walked all my life, now devoid of friends and acquaintances. My daughter would walk past the house with the children and we would come out to chat from a distance. She would have to hold the girls back so they wouldn’t run to us – utter heartbreak. Their little faces not understanding why they couldn’t run to nanna and bumpy as if we were now somehow a danger to them. I’d go back in the house after the precious brief encounter and weep at this unimaginable situation we were in.

And on and on it went………. For me personally not going out was already normal for me. My surgical disaster had stopped most of that and foreign holidays were a thing of the past so none of that really affected me.  But the pandemic opened up so many wounds for me about how unpredictable life was and the absolute fear of what the future held. I started watching too many news reports and became more and more anxious and depressed………….I couldn’t bear to read of the daily deaths, the untreated cancers and other illnesses as the NHS became the NCS National Covid Service - my heart just broke so I rationed the news watching much to my husbands relief. 

The Covid rollercoaster was well underway and for a while things improved and we all hoped the end was near only for us all only to come crashing down again as things worsened and we were locked down once more. My 60th birthday was spent without my close family as my son in law went down with the virus despite being so cautious. We were all devastated and so worried. I spent my 60th birthday googling PPE kits as I thought if my daughter also caught it what would happen to the girls, it didn’t bear thinking about. It’s that ‘anticipatory anxiety’ that I could completely resonate with. Yet another parallel with how I felt when I discovered I had a fistula, not understanding how you can possibly live with a hole in your gut and anticipating and fearing death at every twist and turn. Just like now the whole world were facing the prospect of a very long fight with an invisible and seemingly invincible enemy, with so many having already lost the fight. 

Seeing and hearing how people were dealing with the trauma that Covid brought somehow validated my own negative feelings when my own life fell apart. When I was displaying anxiety and depression over my situation, I was repeatedly told to be strong, be positive, wise up, stop being self pitying but this had changed my life for the worse, and was just never anticipated, just like the pandemic. My health had been ruined and I discovered after a few years it would never heal and I would never recover as it couldn’t be repaired. They had tried to repair it, but I nearly died as I developed sepsis. I think in all the years of trauma I’ve encountered, that is the week that was the most damaging for me physically and mentally. I knew I was dying yet no one listened, saying I was fine, that it was normal post op to feel like this. I remember having apparitions of glasses of cold lemon squash as the insatiable thirst took over my every thought.  I felt invisible and very insignificant.  On the night of 7/3/17 I was literally begging for help but was told to press the morphine pump and go to sleep. The next day I had respiratory failure as my lungs had filled with liquid. I was whisked to ICU with oxygen strapped to my face, I could feel my life slipping away. My head was screaming NO NO I just wasn’t ready to leave. I survived thanks to the Crash team and the brilliant ICU staff, they saved my life. Now three years later I’m reading stories of people being denied respirators and the thought of that fills me with absolute horror. Respiratory failure is pretty terrifying – try taking in a big breath, holding it, the wrap your head very tightly in plastic so there are no gaps making breathing impossible. What happens then is the terror in your brain engulfs you as you just know death is round the corner unless you get help. The thought of there being no help haunts me, I never thought that even possible in this day and age, it terrifies me……..

So now we are in lockdown 3 as the pandemic tightens it’s grip. The promise of a vaccine is round the corner and we have some hope although again the trauma demon is never far away, although now thanks to some brilliant psychological support, I work around it. My sister and her twins are in our bubble so I can help with home schooling.  I can see my granddaughters for occasional childcare but it’s not enough of course but at least I can see them and we talk every couple of days on Skype.   Last week whilst trying to grasp the realities of digitised homeschooling with the twins I actually laughed for the first time in a long time. Twin 1 was asking me if there was a God and what did I think of the big bang theory . Twin 2 was stressing as his laptop wouldn’t connect and he had lost all his work, or so he thought, I was trying and failing to get my head around some algebra question having never even thought of algebra in 45 years, I felt overwhelmed.  I looked at all of us together and instead of collapsing in a heap of despair, I laughed, they laughed, we did the algebra, the laptop behaved, and my husband explained the Big Bang theory in way too much detail. We then moved onto Greek Mythology and I asked Twin 1 to read out the final paragraph of the myth about Pandora. 

“As Pandora opened the box for a second time, a little bug escaped. It looked at Pandora and smiled and said, ‘I am Hope, and whilst I am in the world, all will be ok’.

The twins looked at me and asked, ‘what does that mean aunty’. I explained that in the midst of all the troubles in the world there is always hope and that is what will get us through……..

I get my vaccine next week.

The fistula is still it’s horrible self but no worse.

 We remain hopeful that brighter days are coming.