What strange times we are living in. I truly hope you and your families are all well and safe. I’m sending hugs to everyone who is struggling at this difficult time – whether will illness, finances or the emotional toll this is taking on all of us.
I’m writing this blog post to share my own experience of COVID and how it’s affected me physically and mentally. I’ve had suspected COVID-19 and complications since March 13th – 74 days and counting. It’s been one of the scariest, most frightening times, and it’s still dragging on. For people who think “it’s just the flu”, I am telling you now, I’ve had flu, I’ve even had walking pneumonia and I have never experienced anything like this.
As many of you know, I have lupus. This means it isn’t unusual for me to take time out of writing. I can be gone for months at a time whilst dealing with a flare-up, or a particularly busy time with work and my mother (who has terminal cancer). But usually, in the background, I’m still hammering away writing. Since March 13th I haven’t been able to do anything. COVID hit me hard and I’m still experiencing symptoms 74 days in.
The first week I got sick I had a temperature, a bit of a cough and a tight, sore chest. For 7 days I foolishly believed that it wasn’t so bad. That I could manage it like I do my lupus – with rest, painkillers and fluid. By the second week I was struggling to breathe. On the Thursday of the second week I was gasping for breath so much, my husband had to call an ambulance. The sheer terror of not being able to get air into my lungs and having a paramedic dressed in full protective suit (complete with respirator) was one of the scariest things I’ve ever been through. Although my oxygen levels were good, because of the underlying lupus they recommended I go to hospital. However, I refused. There is no guarantee I would have been tested and without the need for oxygen at that point, I was at more risk of infection if I went to the hospital. After all, although everyone was pretty certain I had COVID, what if I didn’t? I chose to stay at home and continue with antibiotics, painkillers. I also had a very irrational fear – what if I was taken to hospital alone and never came out?
I just want to say a big thank you to the Yorkshire Ambulance Service here. They arrived quickly, we’re amazing and stayed for a few hours to make sure I was okay. I cannot thank them enough for their assistance at such a scary time for me and my husband. They were brilliant. And immensely reassuring.
I won’t bore you with the mundane details, but some of the symptoms I was having over the following weeks including extreme fatigue (and this from someone who deals with fatigue on a daily basis), shortness of breath which meant I could barely walk a few steps without panting, a chest so tight it felt like my lungs were being constricted, vomiting and upset tummy. At one point in the last few weeks I even had conjunctivitis.
74 days in and I am still getting some of those symptoms. Yes, my temperature is down. Yes, I’m not coughing as much. The breathing, however, can still be horrific on some days. And the tiredness is off the charts. If I try and do too much, I’m back on the couch, symptoms reoccurring with a vengeance. This is 74 days in. That’s not taking into account the total paralysing fear that comes with having shortness of breath flare up – is it coming back? Am I reinfected? How bad is it going to be? Is this the time I’m going to have to go to hospital and risk being put on a ventilator? With no guarantees of immunity, I’m living in daily fear of a killer I cannot see.
In the grand scheme of things, I am lucky. So, so lucky. I’ve not been in hospital, I’ve not been in an intensive care unit, but the aftermath of dealing with the disease is debilitating. I’m still not working my day job as I can’t manage more than an hour or so at my computer. I need to sleep lots and physical activity is very limited.
My husband has been amazing. He’s supported me every step of the way. He lifts me up on days I’m sobbing and don’t feel I can stand another episode of breathlessness. He goes out to the supermarket to get food and prescriptions, risking his own health so I have food and medicine. He’s taken over all the household duties, despite still working from home. He is truly my rock. I can’t thank him enough or tell him how amazing he really is. He is my ultimate romance hero.
The other thing this disease has robbed me of is visiting my sick mother. She lives miles away and since lockdown has been in place, she’s been extremely ill. And I’ve been unable to travel down and be with her as I would be risking her and myself. The guilt is almost as crippling as the symptoms of COVID. My Mom is my best friend. Not being able to hold her, hug her when she’s crying or in pain, is one of the worst things imaginable.
Relatively speaking, I am so much better than I was at week 4 or even week 8. It’s been a tough ride. There have been setbacks. There are going to continue to be setbacks if you the reports about people recovering from COVID. It’s comforting to know it’s not just me.
One thing this journey has made me realise is the life I was living before lockdown wasn’t serving me. I was super stressed out about the smallest thing. Day job stress was through the roof. I was bouncing from one thing to another – home, work, my sick mother, hospital appointments for me, always doing, doing, doing. Yet all the time resenting myself because I wasn’t taking care of myself or my mental health. I wasn’t taking small, productive steps towards the life I want for myself – becoming a full time writer. And all of that was leading to resentment.
During lockdown I’ve reorganised some of my priorities. Sure, I have days when all the fear and doubt and resentment comes back into play, but I know what I want now. I know how I want to feel in life.
Joyful. Creative. Calm. Resilient. Optimistic.
My priorities are my health, my husband and family, my creativity.
With these in mind, I’ve completely re-thought how I structure my days. Obviously this will change once I am back at the day job, but that’s where resilience comes in. Go with the flow. Don’t sweat the smaller stuff. It doesn’t matter what people of think of me (having a chronic illness makes me over achieve, over perform, so people don’t think I’m lazy), it only matters how I feel about myself.
The past three weeks have seen me take a completely new outlook on writing. Even thought I’m still sick, I’ve managed through small steps to finish editing two books of a trilogy I’ve had written for a while, and create a whole marketing plan for those books. I’m now on to editing the 3rd book and every single day I feel joyful to get to work. To be creative. I’m even finding joy in doing the things I used to hate like writing blurbs, creating teasers images and revamping my website.
One thing I am grateful to COVID for – giving me back my passion and joy for creativity.
There is a long road ahead in which there will be illness and grief, but there is also light and laughter and joyfulness. There is hope.
Take care and stay safe,