A Surrey Coalition member has been kind enough to write and share this blog post of her experiences of long-haul covid and her coping tips. Please read below.

Since 8^th March I have been home alone, ill and housebound. In my head I planned to finish lots of creative projects when the inevitable lockdown happened – but I hadn’t planned on being home alone – and ill. I’m writing this to share my coping strategies in the hope they may help others, but I will not be sharing lifestyle changes I have made during these last five months because they are specific to my personal symptoms which may be different to others.

Create a supportive network around you

Covid 19 has changed the way whole world interacts but for me it was not just about staying safe (a bit ironic as I was already ill) but I also had to adjust to my significantly reduced energy levels. Maintaining contact with supportive friends, family and neighbours is very important and was made easier by technology. In the early weeks I could only manage short phone calls – with my eyes shut to conserve energy. Whatsapp was great because I could share a photos or text short messages with whole groups of people (less time consuming that individual communication) but my phone memory did get clogged with videos that took energy I didn’t have to delete. After a month or so I moved on to short video calls and then when lockdown began to ease socially distanced garden visits. After five months I up to about one visit a fortnight of just a few hours – it’s great to talk to people face to face for longer than just 5 minutes when they drop off my shopping.

Use your time wisely – pacing

I am lucky I have a GP surgery who believed my long haul covid existed and they treated me as if I had chronic fatigue from week four onwards. They advised me to pace and rest. I am slowly learning about pacing myself and increasing the things I do very gradually. A wise friend told me it’s not just how you are at the time you do an activity but how you feel the next day or even the day after that which tells you if the activity was too much. This approach has helped me in my long-phased return to work. The first day I did one hour, the first week 3 hours in total. I am lucky I have a supportive boss, work for a supportive organisation and that I have a part time role. I am also lucky my work moved on-line due to the pandemic and I can work at home – for now.

Learning from others with the same lived experience – peer support

I was too exhausted to search out others with long haul covid despite knowing peer support had been vital to shaping my Bipolar Self-Management plan. It was only after I’d been ill for over three months and a family member sent me a link to a facebook page that I began to learn from others with ‘long haul covid’. Their advice has surprised me in many positive ways.

• I have found it to be consistent over time
• There were lots of little changes I could make to my housebound daily life – cost free to the NHS
• Advice often originated from health care professionals – you just needed to know which pages of which NHS and health charity websites to look at. While covid 19 is new, post viral conditions are not – although sadly they are often not well understood.
• How positive the outcomes were – people are improving (although at various speeds) from following their advice.

Devise your own rehab plan – but take care

Through the facebook group I learnt many of the things I was doing just to get through the day with the severe fatigue were hindering my recovery. Initially I wasn’t keen on some suggestions – who wants to take cold showers or cut out cake!  Bit by bit, day by day, I understood more about my ill health from my fellow long haulers and realised I had the power to change my health. I was surprised that even though I was severely fatigued there were changes I could make -being so ill I hadn’t known I had a lifestyle to make changes too! From their tips I have devised my own rehab programme – things to do or not do each day, checking with my GP before implementing changes each step of the way. My weekly plan includes things to eat or drink, ideas of how and when I can rest and appropriate exercises for physical rehab.

Look after your mental health

I know from previous experience that peer support groups can be intense at times so when I joined the long haul covid group – I dipped in and out ensuring there were days at a time when I had a complete time out. I’m lucky – unlike some others with long haul covid poor mental health has not been a symptom of my illness. Ironically getting the virus reduced my anxiety – fear of the unknown had had potential to trigger a hypomanic episode in March. Living with severe fatigue forced me to live in the moment – what do I need to do in my waking moments to eat today. I had no energy to think about the future. As my energy levels increased, I adapted my pre-covid wellbeing strategy of yoga classes and countryside walks to online meditation classes and sitting outside. I also came out of whatsapp groups which became unhelpful reminders of my pre-covid abilities but stayed connected with people that support me. Although I do need to get better at making that phone call when I’m having a tearful moment – at times unsure about how to adapt advice from my peers to my help circumstances and frustrated with the lack of support the NHS has to offer those with long haul covid in my area.

Spend your money wisely

It can be very over-whelming reading all the different things others with long haul covid have spent money on to help themselves recover –  supplements, medical kit, alternative therapies and private consultations. I haven’t bought any of these yet – recovering from previous bipolar episodes has taught me not to panic buy miracle cures.  I’m not saying that I won’t purchase some of the above it’s just I’m not sure yet what is the best thing for me to spend my money on or what to afford in these uncertain times. I also have limited energy both to do my own research and to attend appointments (and need help form others help to travel to appointments). So… I’m waiting to see what feel right to buy and for now that means sitting with an idea for a while, even though I want to be better ASAP. I have, though, changed certain food items I buy – this and other lifestyle changes are showing small but significant improvements and its only two months since I first begun reading tips from my peers.

Value gratitude – I have lots to be thankful for…

..from my personal shoppers bringing food to my door and keeping me alive to my fellow long haulers sharing their knowledge and shaping my recovery. I’ve written ‘I’m lucky’ a lot in this article and I am. My phased return to work is going well and my mental health is generally good. I’m not saying I don’t have down days – I do. My unplanned solitude retreat has been lonely at times and increasingly tearful, but it is a journey and it has become a spiritual one. Deep down I know I will get better and when I don’t know the details of how – I return to the strategies above. Just as the world outside has been changed by covid for me being ‘better’ may be different to the pre-covid me but I will be richer for the experience – I hope.