Long Covid: advice from someone with experience

This guest blog post is by Amanda Burton.

“Mid-February 2020. I was eagerly anticipating the Easter break and had booked my flights and accommodation for a short holiday in the Algarve. My last trip abroad had been in 2013 and I really needed a break. I am a busy mum to one teenage son. At that time, I was like many people, working long hours, juggling home and school commitments but also fit, healthy, a normal weight and with no pre-existing health conditions.

News stories were coming in thick and fast about Covid and I thought I should probably post-pone my holiday for later in the year when it would all be over. I don’t think anyone realised at that time how long the pandemic would last!

Early March. I remember one day not being able to stay awake at my desk, which had never happened to me before. I put it down to being overtired and had a few early nights. Then over the next couple of weeks my throat started to become irritated and my skin was itchy, but I wasn’t showing any of the ‘classic’ Covid symptoms. My son however was and had to stay off school. This was now about the same time as the first lockdown and my condition became much worse and reached its peak around the Easter weekend. So when I had hoped to be taking refreshing walks along the Portuguese coast in the spring sunshine, I was instead unable to get out of bed and feeling the worst I have ever felt in my life!

No one could tell me what to do for the best

There was very little advice available over what to do in the early days of Covid. We were being told not to go to our GP, not to call 111 and not to get tested. At the time I didn’t feel as though I was ill enough to go to hospital so I thought I would just ride it out at home. Over the following weeks I did improve along with my son. We both had what I can best describe as good and bad days. Then suddenly after thinking I was on the road to a full recovery, whack! my symptoms came back with a vengeance and new symptoms started to emerge. It was very frightening.

I phoned my GP who said there was very little they could do as they didn’t know how to treat Covid patients yet but that I should eat and drink well and rest. And so it continued like a rollercoaster, symptoms dialling up and then dialling down, new ones appearing, old ones reappearing, not just for a few days, but a for few weeks that turned into months.

At about 5 months in, I realised I needed to find help elsewhere if there was nothing more available from my GP. I found out about a long-haul Covid Facebook support group and joined, and then joined another, and another. Quickly it became apparent that there were thousands of people just like me who were simply not making a full recovery. We were all posting about our weird and wide-ranging symptoms and sharing advice on anything that provided some relief. Rapidly we formulated a collective list of ways to manage our illness. I want to share this insight along with the message that Covid is not always a case of either mild symptoms or hospitalisation, there are tens (if not hundreds) of thousands of previously healthy adults and children who have contracted this disease and have continued to suffer for months after their initial infection. A recent estimate from Kings College London, who have been tracking and researching Covid infections in the UK, is that between 1 in 10 or 1 in 20 people who contract Covid will going to develop the long version of the disease.
GP’s and other clinicians are starting to understand more about what is now being called ‘Long Covid’ but there is still very little known about how to treat it. In some cases, Long Covid sufferers have been able to get diagnosis for secondary conditions caused by Covid, but equally there are many who have had various investigative procedures yielding nothing, leaving them in limbo.

So how are Long Covid sufferers like me managing to cope?

1. Vitamins and supplements. One thing we have recognised is that Covid messes with our metabolism. We also know that certain vitamins are usually low like D3, and some are known to be very helpful in boosting immunity like vitamin C. So here is a list of what the majority of Long Covid sufferers have reported as providing positive support for their bodies: Vitamins C, D3, B6, B12, Iron, Zinc, Magnesium, Selenium, Potassium, Manganese, Quercetin, Ginko Baloba, Omega 3 and low-histamine pro-biotics.

2. Anti-histamines. Medical professionals treating hospitalised Covid patients have reported that the virus often causes Mast Cell Activation and certainly some of the symptoms reported by Long Covid suffers match this. A simple antihistamine dampens down the effect and reduces those symptoms.

3. Hydration and electrolytes. Although not widely reported, Covid often gives people gastrointestinal issues plus, as mentioned, it disturbs your normal metabolism. Drinking lots of water helps replenish lost fluids and flushes out toxins. Electrolytes restore the bodies natural equilibrium.

4. Diet and nutrition. One of the most common themes reported by Long Covid sufferers is their reaction to their previous diet, even if it was healthy. Most have had to cut out dairy, meat, sugar, caffeine and alcohol. Many also follow either low-histamine or anti-inflammatory diets.

5. Exercise. It may surprise you to know that many people with Long Covid were previously extremely fit and not only exercised regularly but were at peak levels, training, teaching or competing. When trying to recover from illness it’s natural to want to get back to your old exercise routines as quickly as possible and return to the energy levels you had before. However, most are finding this simply isn’t possible and trying often makes their symptoms worse. Instead gentle exercise is found to be better and I am a great advocate of the practise of Pacing. Pacing requires you to really tune into your body, acknowledge your limitations and recognise when your body is giving you signals you are pushing it too hard. You need to plan and prioritise your activities based on the energy you have and take frequent rest.

6. Rest. It sounds ridiculous but in todays world most of us are very bad at doing nothing. However, resting is one of the most important things that has helped people manage their symptoms. By resting, I mean either lying or sitting in a comfortable position with no stimuli at all, no books, no screens, no radio, just being or sleeping. It’s much harder than it sounds!

7. Mental health. Being ill for so long starts to affect you mentally. Being in pain and discomfort is draining and coupled with the fact no cure exists yet, it can be hard to feel positive and hopeful. Meditation, mindfulness, self-care and gentle yoga have all been helpful but I would say the most important thing, particularly if you have been isolating, is keeping in touch with other people, letting them know you need help and accepting help when offered. The other coping mechanism I’ve used is creating a routine, no matter how insignificant, to punctuate my day. I’ve also set myself tiny goals which have got bigger as time goes on so I feel I am making progress even if it’s slow.

A long road, but there is light at the end of the tunnel

At the time of writing this, it is nearly 36 weeks since I first began to feel unwell. I am getting better and have started to develop a real sense of hope and joy about the future. I have learned many things throughout this time such as what really matters to me in my life and who I can rely on in a crisis. I’m also far more engaged with my body and my health and plan to continue ensuring I treat it like the precious vessel it is.”

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