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Having no time for ME in lockdown

Updated: Jun 9, 2020

CN: lockdown, coronavirus, ME, isolation, inability to function, work pressure

“as someone with ME, I’m no stranger to isolation and have been in my own personal lockdown for a long time.”

At 19, I was diagnosed with ME (Myalgic Encephalomyelitis). In both medical and disabled spaces, CFS (chronic fatigue syndrome) has become pretty synonymous with ME. I want to start by saying that anyone who is diagnosed with (or identifies with) the condition as CFS is valid, but for me personally, I prefer the term ME as I don’t feel that CFS quite covers the symptoms that I experience.

The World Health Organisation (2016) classified ME as a neurological condition [link] and as such it has abnormalities in the central nervous system, immune system, endocrine (hormone-producing) system, and in muscle - causing energy metabolism impairment. It is estimated to affect around 0.2-0.4% of the population – that’s 265,000 people in the UK. It is a fluctuating condition as the symptoms and intensity vary throughout the day, between days, and even weeks and years – making it very unpredictable and hard to manage.

ME has many complex clinical features. One of the primary symptoms is known as post-exertional malaise (PEM). That is causing a (delayed) flare-up of symptoms after an activity has gone beyond what the person can tolerate, even minor physical or mental exertion. Similarly, another symptom called activity-induced muscle fatigue is triggered by small exertion. Another significant symptom ME can cause is cognitive dysfunction, including problems with short-term memory, concentration and brain fog, such as finding words. Sleep problems are a substantial part of ME – including unrefreshing & difficulty to sleep, as well as sleeping too little or much, and vivid-dreams. Further, malaise or flu-like symptoms is common in ME – such as sore throats, fever-like sweats and lethargy. Other common symptoms include things like pain, balance issues, orthostatic intolerance and temperature dysregulation, sensitivity to light and sounds, and alcohol intolerance.

Having ME in the middle of lockdown has honestly been really difficult.

People are now talking about lockdown – a phrase that has started to bring unity worldwide, but as someone with ME, I’m no stranger to isolation and have been in my own personal lockdown for a long time. Hearing non-immune compromised people talking about how dreadful lockdown is has been hard, and has definitely had an impact on my wellbeing. While people are now happily adjusting to online food shopping and working from home, I struggle to try and store up enough energy to ensure that I can have a bath or shower once a week. Even then I need the help of my PA/carer and will be left mentally and physically exerted for days.

I’m glad that populations around the world are learning what it is like to be socially restricted, housebound and isolated – I think it’s important that people understand the feeling of exclusion that many people with a chronic illness feel on a daily basis. However, it is important to remember for us this is not temporary. This is not something that stops for us so we can go back to a job and socialising outside. ME doesn’t discriminate before, during or after a pandemic – we don’t have restrictions that can be lifted. Although I have many other conditions that are comorbid with ME like PoTS [link] and EDS [link], for the past five years, I can only leave my house using my wheelchair for short trips. Even then, I need someone to accompany and in most cases, ends up having someone to push me home because my energy has run out. As a result, I am very often housebound, so isolation (apart from my partner who I live with, and my PA/carers who come a few times per week) is my normal.

I have had years of not really being able to do anything, to not socialise or be with people properly. I on occasion go out and see friends – or video call – but it’s as if pictured through a foggy day, I’m not really there and I’m about 10% aware of what’s going on, my head feels heavy. People tell me things people have said or memories we’ve had, and I nod in agreement with no recollection of what happened. Anything I mentally or physically do – whether that’s reading or swimming, my body goes into “shut down” mode. It’s as if my body is in computer mode and a few hours or a day later, someone without warning turns my body off before saving the work. I’m left unable to do anything, feeling like my body is made of weights.

As someone living with ME, I know for a long time I was panicked about knowing if I had COVID-19, when ME shows peaks and falls of flu-like symptoms all year round. The advice from doctors is to “listen to your body, you will know if you have a new, severe viral infection”. But for me, this happens often outside of a pandemic, so when do I know I’m just in another peak or if I have COVID-19? It’s a scary time to have ME and other related conditions that mimic the symptoms we’re told to look out for.

Now as someone who has been diagnosed with ME for almost 10 years, and living with it for probably longer, you would have thought that by now I would have my routine down, and knowing my limits. But like many others in my mid-twenties, I still push myself to succeed. And with the announcements of working from home, and being told to do something with your time, it’s only made things harder to drown out the noise of the need to work and fulfilling the requirements of living in a meritocracy society. I push myself to my limit, I give in to the advice to start work, to do an online course, to learn a new language, to make sure I’m staying in contact with my friends and family at least once a week, and continue to do my exercise (or for me, physiotherapy in my living room). I go to breaking point. And my body and my mind breaks. The few weeks ME allowed me to carry this out, and then completely crashes my body. My sleep wrecked. An inability to function. Emotions being a mess. My memory like a half existing jigsaw. An unimaginable ME flare up and healthcare being impossible to access. A disabled person’s nightmare.

So what advice do I have of how to safely and sensibly do lockdown? Take care of your emotional as well as physical wellbeing. Take breaks from technology – that includes social media and things like watching the news, as particularly now, receiving information constantly about the pandemic can be overwhelming. Take time for yourself – if there’s a message you take for this, you don’t need to fill society’s messages that you need to do things during lockdown. Watch a film, play on animal crossing, catch up on your sleep. There are many useful resources online to support looking after your mental health, follow them! Be aware that advice relating to exercise/activity will not be taking into account the impact of M.E. or chronic fatigue, and you need to carefully balance activity, energy and rest.

This is probably a more personal piece than I usually write, but with lockdown easing in the UK, I want to remind people to be gentle about their happiness of leaving their house again while people with chronic illness, and especially ME, do not have that luxury.

If you think you might have ME or want to find out more, please go here:

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