It has been many months since I have posted on my blog and it pains me when I look at the writing I have engaged in. There are many posts started, but sitting unfinished in my drafts folder. I peek at them at times and re-read the sparks which they contain, ignited by an event, a comment or an experience which provided the kindling. Although sadly lacking the air to maintain the fire which I intended, they stay smouldering with the loss of my attention. It epitomises my thoughts these days; wisps like smoke which disappear into the air.

I am determined that today will be different. The fire may be small, but for a million reasons it feels important to me that I set my thoughts ablaze this time.

Today is Long Covid Awareness day. As I have written about in previous blogs, I came down with Covid in November 2021. I wrote whilst in its grip, commenting that I hoped it would leave me unscathed. Sadly, that was not the case and numerous symptoms revealed themselves over the coming months, changing sporadically in a way that defied prediction of its effects on day to day living and working. The medical appointments started, the tests, the endless recording on charts and diaries, the long process at work to have my disabilities acknowledged and responded to. The discussions about symptoms were endless, and too often on my part felt like justification for why I was unable to be the me I was Pre-Covid. At work: colleagues, the management team, the occupational health team and HR. At home: friends and family near and far. In between all of those people I spoke to various medical professionals to explain my health – mental and physical – repeating the negative part of who I am. I feel surprise as I write this, that I didn’t just give up completely.

Some of my symptoms have improved, some are managed to an extent with medication, but many remain a daily battle. I have made a conscious effort not to label them here – I no longer wish to justify why I need people to understand my health needs unless there is a specific reason to do so. At the end of last year, when I attended my first online Long Covid Clinic I realised that no one was going to give me a pill to ‘cure’ the symptoms. I had reduced my working hours temporarily to try and manage the effects that a heavy workload was having on my health, despite the financial impact it would have on my household in difficult times. I had learned how to pace enough to be able to continue to work – having a day to recover between work days meant I was well enough to have a day with my beloved daughter, husband and grandchildren. I had taught myself how to breathe and relax in between energy-demanding tasks. I had sought help for the symptoms that the medics did have answers for, often the solution in the form of another pill added to the list. Importantly, I had joined the Long Covid Facebook group where I could read the affirming comments of people with the same symptoms, the same level of frustration, the same loneliness, the same feelings of loss and the same wish to be their old selves again. However, I have given up looking for answers or solutions as it seems there are none, instead I try to manage my own health needs on a day to day basis. Of course, I take the advice given by professionals but I tailor it to the reality of my life.

I manage myself because there is such a lack of understanding about the long term effects of Covid or acknowledgement of ‘Long Covid’. I am certain that one of the underlying reasons for this is fear – fear of litigation, fear of the financial costs, fear of the fact that anyone can be effected by Long Covid whatever your age, whatever your background, whatever your wealth…the list is endless. Covid is still out and about, although many would prefer to deny it, because to acknowledge it means having to respond. However, what would make a significant difference to people such as myself, is that anyone who has someone in their life that is experiencing Long Covid at least educates themselves about what it is and how it effects people. If you don’t know anyone now, the likelihood is that sometime in the future you will, unless something is done soon.

Millions of lives have been changed by Covid, people like myself who no longer recognise who they have become from what they were. I feel blessed that at least I can continue to work, that at the moment on most days I can function at some level – there are many Covid survivors who can’t.

As well as Long Covid Awareness Day, today was also the start of another round of strike action by my Union #UCU which I am supporting. I wish that I could of joined the protest in London today and be involved in the upcoming pickets. On Saturday 18th March there is a “Resist Racism” rally in London and again I wish that I could join those that like me, believe we must stand against the racist policies and practices that are increasingly blighting our lives. I know that “Together we are stronger” is the mantra, but instead of physical presence, at the moment my words will have to stand as my solidarity to these causes so dear to my heart.

I am done. Not a fire, but perhaps a small flame in the dark alongside other flames. Today that is enough.