Angela’s Long Covid story – part 2

Picture of AngelaMy sister and I were clearing Mum’s flat in the two weeks following her death (see previous blog) in a sheltered housing block. We were made aware that there was a resident who had covid, who was not staying isolated in her flat as requested/required. On our final day of clearing I did several journeys in the lift to the bin cupboard, wearing a cloth mask, obviously we realised soon after that how ineffective these were. A couple of times I also forgot the mask. I am fairly sure that an asymptomatic or known covid positive person had been in the lift prior to myself.

 

Two days later I had diarrhoea and vomiting then a very sore throat so did a PCR test as I was due to take my uncle to mum’s funeral two days later. My test was positive. Video link funeral only for me 😢

 

I’m sure most people will know of CRUSE, bereavement counselling organisation. They helped me during the summer of ‘21, to deal with the guilt of having sent Mum into hospital. She would have died in a fairly short time anyway, but ideally that would have been at home, with family taking care of her, not alone in a covid bay in hospital. It still hurts, but not as severely as it did.

 

My covid infection was mild, affecting my asthma, causing wheeze and shortness of breath, and didn’t resolve quickly with oral steroids as it usually would have. I was not severe enough to need hospital care, thankfully. I was off sick about 10 days then started to work from home, and back to the surgery the following week. I used to walk to work in 16 minutes, or cycle in. I had problems with shortness of breath and chest discomfort so had to slow down my walking speed, then worsened again so I had a slow walk to the bus stop and get bus to and fro. I should, of course, had this chest pain checked out… but didn’t 🤦🏻, “it’s just my asthma” I thought. Cardiology later said probably peri-or myocarditis, oops.

 

In early April I developed shingles and with it came fatigue, which has never resolved. I had a week off, then continued hybrid working – i.e. 2 days from home and 2 days in the surgery, as were my clinical colleagues. We were seeing people face to face if they requested this, but a lot of working people preferred having a phone call first then being booked in to see someone if clinically needed or patient preference and according to urgency. As per working in hospital we had surgical not ffp3 masks, even when we knew or suspected that the patient had covid.

 

By the end of summer ‘21, I had my first phone appointment with the Long Covid clinic. In our area it is a community based, virtual (phone calls) only, from Physio/OT who had experience or learning about helping people to manage their fatigue and other symptoms. I spoke to several different people, who were all empathetic and validating, some more knowledgeable than others, but also willing to make suggestions to my workplace and early on advised me to take some time off sick to allow rest and hopefully recuperation. The Long Covid clinic person helped me to see that I was in constant ‘boom and bust’, doing very little outside of work, to enable me to work my 30ish hours a week. They were suggesting 2-3 months off sick. As with most of us health/social care / teaching professionals, our ‘duty and responsibility to our colleagues as well as our patients’ was inculcated from the start of my training (40+ years ago). Self-care has been a relatively new concept, although I was well aware of ‘take care of yourself to be able to take care of others’ but I found it difficult to apply to myself. I did agree to reducing my hours, to see if that would help my symptoms etc.  Sadly it didn’t help. Two months later my tachycardia with very frequent palpitations started, 130+bpm on very minimal exertion, with a resting heart rate running in the 90-100’s. Sadly this has still not gone at 3 years in, but ivabradine seems to make it a less troublesome symptom. From that point on I was working all from home, as my mobility was declining and my heart rate was only manageable gently pottering indoors.

 

Unfortunately, two further decreases in working hours, cardiology, including investigations, endocrinology and neurology consultations have not made significant differences to my functioning. I still frequently have ‘crashes’ of post exertional symptom exacerbations (PESE) and I can’t manage the ordinary daily living tasks in a normal way. My symptoms that show the start of a PESE ‘crash’ are still either having a very sore throat, or less frequently D&V, as per the start of my first (and only known) covid infection.

 

Last summer, (2023), brain fog increased, instead of just some word forgetfulness, I was having potentially risky short term memory loss. I became very concerned about my memory as there were a couple of conversations I had no recall of at all, and I forgot to request a clinically necessary blood test for a patient. Thankfully one of my colleagues spoke to the patient two weeks later and the blood test was then done, and was negative, but I became very concerned. My job as an ANP ended in October 2023. I have given up my registration, ending my 40+ years of nursing. If I were to cause harm to a patient because of my disability/ symptoms/ Long Covid, I would struggle to live with myself. So, a handful of years before I ‘should have’, I’m no longer working.

 

The benefits system has been quite an experience! I knew from patients that the hoop-jumping is difficult at best, degrading and inhumane at worst. The constant pressure of ‘do this’, and ‘provide this information’, me saying “but I uploaded that 3 days ago, can you tell me why you need it again?” Deafening silence, no answer then “upload it again!” with no explanation… oh dear, the extra-exhausting rumblings of being an insignificant cog in the debasing machinery. When I started my nurse training we were moving infinitesimally slowly from “don’t ask why, just how high” towards “evidence based practice” but those skills and thirst to know why, are not helpful when you’re a reluctant tiny person within the benefits system.

 

Five months on from my work ending, I am still waiting to hear from NHS pensions re whether I’m sick ‘enough’ to be allowed my pension. Sadly there are a significant number of people who are refused, my fate is still up in the air. Meanwhile I have gained more aids and appliances, and live my life in a very different way from previously. I appreciate all the wonderful moments, the ‘glimmers’ that make life enjoyable, spring is returning and sometimes with sunshine, I have wonderfully supportive family and friends. I sing in a local daytime choir, seated of course. I have a gorgeous grandson who has just become a toddler, and this little being makes my heart sing daily!

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