When the bells tolled to mark the start of 2020, I never imagined it was going to be a year like this. As I was turning forty this year, 2020 was going to be a good year, filled with loads of plans, but that all came to a grinding halt in mid-March. Little did any of us expect that a pandemic would hit and that the whole world, as we knew it, would literally come to a stop.

I had been even more excited about 2020 because last year had been taken up with me having two total knee replacements. I was excited to start living life without excruciating pain, every time that I moved; I wanted to be able to go to gigs and dance about, I wanted to go to the pub, wearing heels. I wanted to live a life that had been put on hold for so long due to my ill health.

Shielding for me was not smooth sailing. I started shielding in mid-March and at first it was nice being able to lay low and not have to worry about the outside world and the worries that went with it, but after a while the novelty wore off. Since then I have had plenty of ups and downs, isolation has been a major issue for me. Self-isolation equals social-isolation, taking away the one thing I enjoy and look forward to. I am a very sociable person and love nothing more than going out and meeting my friends. I have found that both my physical and mental health have been affected and my quality of life has changed. Not only am I flaring more, but I also feel myself dipping in and out of anxiety and depression at times.

My fatigue has been extreme during this time and I think that circumstances play a part in this. I am still struggling to develop a good routine. Being able to roll out of my bed, to work might sound good, but there is something about the commute that sets you up and ends your day. Most days I don’t get any fresh air, so I try and force myself to go out and have a walk around the garden, rather than going to lie on the couch and fall asleep. I’m beginning a different role whist working from home, it seems as though it is going to be really interesting and involve me really having to think about what I am doing, so I’m hoping this is going to help as well. When I am working at something that I can do with little thinking I get tired very easily.

Previously I would never have said I had an issue with mental health, but since the beginning of this Global Pandemic at times I feel it consumes me. When this happens, on top of chronic fatigue and pain, it can be all consuming and I can easily get stuck in that rut. I don’t think it helps that I am so apprehensive about going out of the house, even for a walk. I think I can count on one hand the number of times I have been out since this started. When I feel it creeping into my life and myself slipping, I reach out to friends and family for chats, I listen to music, I keep myself busy but the longer this is going on the harder it is getting. I have totally withdrawn from watching the news. I had limited my intake from the beginning, but now I can’t handle the overload of information they give. A lot of the time it’s contradicting and how do we know it’s accurate or helpful? It only makes me more anxious. I now look to lupus organisations for any updates I need to be aware of.

The situation we find ourselves in has made this year stressful and uncertain. My lupus and it’s symptoms at the moment are never far away, I’m going in and out of flares more than ever. I think this has been influenced by a number of factors; my mood being low, with not being able to leave the house, not seeing my friends or my sister, eating rubbish, not exercising, not getting fresh air, the stress and worry of Covid and I am really good at self-sabotaging my own progress at times.

Reflecting back over the year, it hasn’t been a totally unproductive. I have gained my certificate in counselling, which means I am one step closer in moving towards my dream job. I have learned so much about myself through this course and by reading a huge range of self-help books. My blog, Facebook and Instagram pages, ‘Lupus and I’ were created and they appear to be developing into positive and supportive communities. It manifested itself during a Lupus flare. This flare was a bad one and with the worry of Coronavirus, I felt overwhelmed. I had been looking for a positive space to go to and couldn’t find one that fitted the way I was feeling, so I decided to create one. It’s nice to be surrounded by people who get what I’m going through and it’s nice to have something to focus on where I can help other people.

Turning 40, during lockdown, turned out to be more fun than expected. Everyone made an effort and although it wasn’t the way I expected to be spending it, it was probably even more special.

Finally, although it has been difficult being isolated from my close friends and sister, I have become a big fan of video calling. This was a new way of communicating for me, in March I was dead against it, now you can’t get me off it, even doing Facebook and Instagram live for Lupus and I.

To live any quality of life, it’s going to be important to move beyond the fear, that is COVID. There is no real ‘normal’ anymore. What is life going to look like going forward? When it comes time for me to go back to work properly, it will take some readjustment time. Will I be able to walk with confidence, without worrying about catching it? I am safe and my family and friends are too and that’s all that really matters, but it blows my mind thinking about what is to come.

Vicky Maclean