ME Awareness Week:          
Covid-19 or ME crash? – Kay’s story

ME and me, before C-19

I was first diagnosed with ME/CFS when I was in my teens, so I have lived with it for 25 years plus, with varying success. My health improved a lot from around the age of 18 until my mid 20s, which allowed me to go through university and hold down a part time job at the same time.

Over the last 15 years or so, I have had several relapses, also called crashes, some more serious than others. That’s when my symptoms get worse – dizziness, nausea, headache, flu like symptoms (fever, shivers, sore throat), brain fog, fatigue – and I find it harder and harder to function, often ending up in bed. I briefly worked full time, but that caused a major crash and I haven’t considered working full time since. Pacing is part of everyday life for me, and building in rest periods and rest days has allowed me to maintain part time employment for some years.

Unknown virus

In early March 2020 I spent two weeks with a virus, which may or may not have been C-19. The route of infection was probably via my brother, who appears to have been infected by a friend returning from a skiing trip to Northern Italy at the end of February. I had all the symptoms but couldn’t be tested, as no-one in the chain of contacts had been formally diagnosed with C-19.

Did I have coronavirus?  Who knows! I certainly wasn’t as poorly as some, but definitely most unwell for that period, although the symptoms are so close to those of a crash that I couldn’t be sure until I started to recover. My crashes are measured in months. 2 weeks was definitely not long enough, and a prime symptom of my crashes – nausea – was missing, so I suspect I had some kind of virus.

Slow recovery

Since then, I have been very up and down, and I am definitely not yet back to full fitness. My stamina is much lower and the fatigue is more extreme than it was before. I also find the other ME symptoms are coming and going more than usual, which suggests I am still run down. My crashes are usually triggered by a virus so it is hard to know if I am just taking longer to recover or am experiencing a mild crash as a consequence of the virus. But I count myself lucky compared to others who have had C-19, and those with more severe ME which keeps them permanently bedbound. I am stuck between two tribes – I am not as sick as many, but not as well as the majority!

Working from home

My workspace

My company has been working from home since the week before lockdown, which has helped immeasurably. I can work flexibly, doing more when I feel ok, and less when not, and I don’t have the commute or the extra stimulation of being in an office, which I often found tiring. Meetings have reduced considerably (now done via audio not video, which removes more pressure) and there are no work trips until further notice.

My work station is in my living room opposite the sofa and next to the telly. This is far from ideal but needs must! I am very lucky to have a good set-up, thanks to the disability support unit at uni, who provided the desk, chair and footrest, back when I was a student. Absolute godsend! The location does make switching off at the end of the day difficult, so I actually clear my desk as much as possible at the end of the day.

Coping with Lockdown

I have used pacing for many years to try to limit the boom/bust cycle, and that has been helpful as I recover, and I am used to changing/cancelling plans at the last minute due to how I’m feeling, so I haven’t struggled with the lockdown really. Sleep has been something of an issue (not getting to sleep and then waking early), but I have been disciplined in sticking to my regular getting up and going to bed times to try to keep that in check, with limited success.

I only have one close friend, and normally we are in regular touch by text with a meet-up every couple of months, so the lockdown hasn’t had a significant impact on that. When you have limited health resources, you choose your friends carefully and limit their number, which I suspect is helping me now I’m in Lockdown.  I have never been a party animal, and I don’t even go out in the evening with any regularity, so I am not missing the social aspect.  I would like to be able to go out for a coffee though, just to get a break from the flat! I am also trying to be kind to myself and reduce some of the expectations I have – just surviving feels like success at the moment!

Betty’s cousins

We haven’t struggled for food as we have 3 small shops within easy walk. I have a shopping trolley (a bag on wheels), bright blue with white spots. I’ve named her Betty (don’t ask) and she makes life so much easier when shopping locally. Couldn’t manage without her!

We have found the local shops to be better stocked in the essentials than the larger supermarkets. My mother is a different story. Mum is recovering from a major illness and was told she had to shield, which she has not been at all happy about, but fortunately did accept. I have only seen her once since lockdown, to deliver shopping, which has been hard for both of us.

I have struggled massively to get home delivery slots for her (she has had online shopping for many years) and have been organising a mixture of big online deliveries, when we can get them, and food boxes from Morrisons (which she has spoken highly of). I have found them easy to order, with quick delivery, and they do a gluten free box!). I managed to get a click and collect slot to plug a gap between deliveries, and there are a few more in the pipeline which will hopefully get us through to mid-June, when I suspect Mum will emerge whether the government like it or not!!

The future

I trust the senior managers to assess the risks and make an appropriate decision about returning to work, so I am not worried about going back when the time comes. I am expecting social distancing to be here for a while yet, and it will become the new norm even in an office environment. I commute by public transport though, so I’m more concerned about travel to and from work, rather than being in the office itself.

Personally, working from home has been very helpful for me in managing my symptoms, but I know this won’t last forever. Before C-19, we had the opportunity to work from home regularly, so there was already some flexibility in how I worked.

I am reading with growing concern that some people who had C-19 appear to be moving towards ME/CFS, which makes sense, but is not a good result for anyone.  And I am not convinced that I would have the vaccine, even if it were offered. I would want to see a bit more data about the contra-indications first. But I think it will be a long time before I have to make that decision!

Kay, South Wales