Life after getting COVID-19 – a year later

A year ago today on 20th April 2020, I began to feel very unwell with COVID-19 symptoms. 12 months later I am still affected by the impact of the virus. I feel that I want to share how "I am" for a number of reasons:

1. People I know ask me if I am okay now. My usual reply is that I am much better than I was (true). That is the short reply. This post has the detail!
2. I love that we are having vaccinations and that lockdown is starting to lift. It is wonderful to have restrictions lifted - and I am still so worried that people are blasé about getting this illness. I want to show that it can have lasting effects and want to encourage society to continue to be careful.
3. I know that many others are also suffering with #LongCOVID. Perhaps sharing my story will encourage them and there is such a comfort in knowing that you are not alone. I hope that it will give some insight and be useful for those involved in Human Resources and supporting staff.

Let me start by saying how grateful and blessed I am to have survived this virus. My thoughts go to those families who have lost loved ones. My lasting challenges are minimal in comparison to others. I see the colossal impact on Kate Garraway’s husband and part of me feels guilty about the perceived ‘fuss’ I am about to describe in comparison to what they have gone through. Surely, I should simply ‘get on and get over’ coronavirus? Maybe by documenting my progress 12 months on, it might help me to progress. Others who have been infected comment to me that they had it mildly and were fine after a couple of weeks. What we must acknowledge is that this illness has a unique impact on whomever it infects. We need to be aware that it produces a far from a ‘one size fits all’ reaction in us - our body chemistry responds in different ways. So, I respectfully ask you to leave judgement out of the equation. It is unnecessary and unhelpful.

Before COVID-19 I was fit, well and would have described myself as busy, efficient, organised, and confident. I juggled my role as a speaker and author on perinatal mental illness with being a PA to my fiancé Mike; three 8-hour shifts a week as a Shift Manager at our local convenience store and worked from home as a bookkeeper for The DISC Group. I loved to be sociable with family and friends and was regularly active on social media and through my blog. I had energy, drive and zest in all I did. Mike and I had our wedding planned and were very excited about getting married on 26th September. Life was great!

Sine coronavirus, I am changed physically. I am so much slower in all that I do. My stamina has been massively impacted. I did return to shop work after 6 months on a phased return. Although I am able to work my three shifts a week, there are differences. The company and team I work with have been supportive of my changes. I am no longer working the early morning shifts as I cannot rush, and my sleep is still disturbed. I struggle to lift heavier items and must really focus on my posture when filling shelves. Any pressure on my diaphragm makes me gasp for breath. Wearing a mask also can make me feel I am struggling to breathe, especially if I move too quickly. On the days I am in the shop, my focus has to be on the 8 hours there and simply getting ready. Previously I would be very busy on all my other roles before a shift. No longer. I have to pace myself very much and be aware that my overall output is far less than it was. I know that I would be unable to work a full week. If I do two consecutive days in the shop, I have to take the next day as a fully resting day to recover.

At home I have learned to accept that the house is not as clean as I used to have it. Changing the bedding is a task that needs to be shared, as it always has been. Vacuuming and cleaning the kitchen floor is exhausting. From time to time, I do get a burst of energy and will find it satisfying to slowly clean the bathroom. It doesn’t happen often! I would love a cleaning fairy to come and spring clean. It is a tall house with three flights of stairs. The home office is at the top. Sometimes I must pause at the top or even the middle of the second flight of stairs to catch my breath. I am slow in all my movements to maintain my breathing and to regulate my energy level. I do enjoy walking, especially when my son suggests he goes with me. Any incline is demanding. I also enjoy doing a short, daily gentle exercise with Emma from My Time for Change, which was part of a makeover prize I won with Cheshire Life. I cannot do very much though. There is no way I could manage a full exercise class. I have kept my body moving, albeit slowly. I have been referred to the Long COVID clinic who have put me on the waiting listing for Pulmonary Rehabilitation.

One positive change has been in my eating and drinking. After initially losing my appetite along with my taste and smell, I now really enjoy food. Part of the program with Emma also involved nutritional support. I am a stone lighter than I was a year ago and very pleased about that. Having the daily guidance over three months last autumn really educated me into what foods are best and how to combine them. I also drink much more water than I ever have done and only have one cup of coffee a day. Before COVID-19, I did not enjoy hot or spicy food. I now love it! Bring on curry, garlic, spicy meats, etc. We also appreciated all the amazing cakes that our neighbour Steph made for us.

I mentioned earlier that my sleep remains impacted. The fatigue of Long COVID is so odd. You know that you are tired and desperately want to sleep yet it evades you. Sleeping through the night is a real luxury. I reached out to a friend of mine, Michael Mahoney, who is a hypnotherapist. I used his insomnia program and it has helped a great deal. Generally, my sleep is improving – and I can still have nights where I wake in the early hours and struggle to sleep again. Hence why I am not working the morning shifts.

The impact of COVID-19 on me mentally after a year, is very evident. I start with counselling today for 8 sessions to help me ‘be me again’. I feel I have lost whom I used to be. ‘Busy, efficient, organised and confident’ has been replaced with ‘lethargy, dubious capability, disorganised and emotionally vulnerable’! I appreciate that my past ability to be busy has been moderated due to the physical challenges. I have accepted and adjusted to doing much less. Perhaps that’s a good thing. Slowing down is maybe what was needed. In the early months of the illness, I had to simply just rest in bed or on the sofa, literally doing nothing. That was so unlike me. Never before in my life have I experienced such long-term lethargy – I think of something that needs to be done or I could do and it is dismissed by my inner voice with ‘can’t be bothered’. This has applied to so many things. My passion for writing and speaking has evaporated. Several times I have started a blog, often in the early hours, and never finished it. If I am inspired, it either is short-lived or I doubt if anyone would want to read it, so why bother? This blog has been created during a number of early hours of thinking and a number of drafts. Even getting in touch with close friends is difficult. I fear that I have become so boring when all I seem to be is a product of Long-COVID. Everything is an effort.

One feeling I have is being thick and stupid. You may have heard the phrase brain fog? This is when your brain cannot process simple things. My physical slowness is reflected by (as I struggle now to find the words) mental slowness too. I find when I am serving on the till that I have to really focus on what customers ask for. To chat and also operate the till can be difficult! I sometimes feel that if I were the customer, I would be tutting at how slow I am serving. The biggest challenge is being asked for cigarettes – in simply turning round to face open the cabinet, I can forget what they have asked for. At my desk jobs, I must be very methodical in my tasks. Again, I cannot rush. Everything I do has to be done slowly and carefully, e.g., double checking email addresses, reconciling, putting an invoice together. I have made mistakes and then feel awful in doing so. For example, Mike asked me to create and send an invoice to one of his new Executive Coaching clients. I did it and it was saved beautifully on my desktop. When no payment had been made a few weeks later, Mike asked if I had actually sent it to his client. I was so offended and immediately went on the defensive. I was convinced it had sent it. No, I hadn’t. I had to apologise to Mike and also to his new client. I have to work very hard to be efficient at things I used to do so easily. I know that if my job demanded extremely important tasks, e.g. giving life saving medication, I would have to say no. For those working in Human Resources and supporting a colleague who has 'brain fog', please take it seriously.

I have discovered that any stress or worry makes my mental and physical challenges worse. I have stepped down from being a Shift Manager to being a Customer Service Assistant in the shop. I found that the additional responsibility and pressure to be organised is too much for me. I used to thrive on being busy and organised. Now it feels me with anxiety and causes me breathing difficulties. I have also lost the desire to lead. I want to be told what is needed to be done and guided by others. My initiative has subsided. I enjoy helping the customers and right now, that is enough.

Gradually, my best friend Sue, encouraged me to knit again. I started with simple baby clothes for a charity. That lead to me making dolls clothes and to selling them on Facebook. I have spent hours and hours on this. It gives me a purpose to hours of sitting – and I love to see the photos of children happy with their new outfits. The downside to it is when I get a lapse of interest in the clothes. It starts my mind going into a downward spiral of negative thoughts, such as they are not good enough, I am not good enough. When I am knitting, I love that my brain is ‘switched off’ and thoughts just stop. It is very therapeutic. I get the same feeling in stacking shelves (until I have to move to serve). I find intellectual thought to be very challenging and prefer to keep my brain in 'neutral'. I would dread to think of the hours and hours that we have watched television this year. At least I have something productive from it.

Prior to #Long COVID I had never experienced anxiety. When I had postnatal depression and then puerperal psychosis in 1996, anxiety was not part of it. My mental health was always good before that time and in the interim. I now can feel in a panic and frightened for no rational reason. It takes very little to overwhelm me. I worry about tiny things and the ‘issue’ plays round and round in my head. I feel emotionally immature and find it difficult to reason. I cannot deal with any form of even mild confrontation. Previously I would have no hesitation at standing up for myself or others – now I want to hide away. One technique that Mike has recommended to me and I find works, is when I feel in a panic or overwhelmed, is to just focus on the next 5 minutes. Just focus on one small task. It helps. I hope the counselling will make a difference to my mindset and thoughts.

I have lost confidence in myself. In December 2019 I had an amazing trip to Qatar where I was a keynote speaker at a psychiatric conference for over 800 delegates from the Middle East. I loved the whole experience – now the thought terrifies me! Of course, all events were cancelled due to the pandemic. My income vanished overnight and that is why I was working more in the shop until I became ill. I know that many events were then moved online. I have done a couple and probably came over quite well. I also have done some interviews with the BBC about Long COVID. Yet I am extremely critical of myself and incredibly nervous about it. I am also VERY scared of any judgment or criticism. On the BBC comments were some questioning the validity of Long COVID, others saying it is M.E. and why should it get so much publicity. I took it so personally. Last week I saw a group of young people all huddled together in a queue outside a pub. I am so scared that society will forget the risks too soon. I put a photo of the queue on a local page on Facebook with hardly a comment. There were many people that expressed shock and concern like me. There was also a barrage of comments attacking me. I do not have the strength to fight back. I spoke to my Mum and told her that I was going to come off social media as a result. Her advice was to wait and not to do anything hasty. It made me think of Caroline Flack and the movement of #BeKind. Why are people so nasty? Why has social media bred a culture of ‘I can write anything to someone I don’t know’?

I worry that even sharing this will cause some people to roll their eyes at me. I can almost hear the criticism that I make a drama out of every challenge – I did so over becoming a mother and writing my 2 books; when my partner Clive Gott died in 2011, I wrote and spoke about grief – now here I go again about coronavirus. The emotionally vulnerable side of me agrees – I should just get over it and shut up. Then the other voice tells me to shout louder! In being open and honest about postnatal illness and grief, I know I have helped others. My gift of writing and speaking has helped others to deal with their own situations. So perhaps this blog WILL help someone else right now. Perhaps someone who is also shocked at how slow their recovery is? Perhaps someone whose partner or loved one is also struggling and finding it hard to understand why they have changed?

Relationships have undoubtedly been affected by the pandemic and lockdown. On the same day that I became ill, by the evening Mike was also very unwell. We both have struggled all year with the impact. We think that because we have both been ill at the same time, we have fully understood each other. We have been able to completely understand the lethargy, sleeplessness, appetite, etc. that the other is experiencing. We have been able to support, love and care for each other. It has been wonderful to see his strength return to continue as an excellent Executive Coach and see the positive impact he makes. Likewise, Mike would not be able to work full-time yet. He does amazingly well on his ‘work’ days then needs recovery days too.

We postponed our wedding in September as we did not have the health to appreciate it. Since then, we have rescheduled for dates in November, January and May – all postponed due to lockdown rules. Now we have our plans and hopes in place for 3rd July. It has been stressful and disappointing. We had never planned on a large wedding – and now that we could have a bigger reception I am scared to, as I think I may find a larger group to be overwhelming. I also think that many of us will feel apprehensive about socialising again. It will be wonderful to finally say ‘I do’.

Maybe one good thing out of the pandemic and lockdown is that we now appreciate the value of things that matter. I have been so saddened to be apart from my parents, especially as my lovely Dad is increasingly affected by dementia. The excitement of simply sitting in their garden is wonderful. I had my hair done this week. We have enjoyed having winter BBQs for Mike and me. Just sitting with our cat is so soothing. Listening to birdsong. Being alive.

Some days or even part of a day I am brighter and more capable than others and it is a great feeling when I feel like 'me' again and recognise my sparkle is still there. It just needs more time, and some help, to come out and stay there :). The photo at the top of the post was taken last Tuesday and was the first time Mike and I had mooched around shops together. It felt so good - even if I did have to ask him to walk more slowly.

I have always recommended that before you can take care of others you have to take care of yourself. This is what I have been doing all year. It is essential. It is why I shall continue to be quiet on social media. I recognise how much better than I was ...

I watch this now and shake my head at the 'drama queen' element!

My message remains the same though as I see how blasé some people are now being in not wearing a mask or keeping a safe distance from others.

My coronavirus journey is ongoing. I am looking forward to many things:

1. Continued mental and physical recovery.
2. Getting married and having a blissful honeymoon.
3. Spending time with family and friends.

For now, that is enough.

I truly hope that you have many things to look forward to.

Elaine x