Living with M.E. as Lockdown Lessens: A Survival Guide

I have been in a semi-lockdown for the last eight weeks after advice from my doctor and the ME Association recommended it. Living with M.E. (myalgic encephalomyelitis), I am currently living the Pacman life, collecting food, friends and fun in my immediate locality while avoiding the dreaded Covid19 ghosts!

The advice is crystal clear. Someone with an auto-immune neurological disorder such as ME is still classed as vulnerable, those with severe ME are high risk. So why is the advice from government so muddled? I'm sure in time the scientists will be vindicated and those putting pounds before people will be held accountable. Or maybe not.

I'll stick with the science thanks. The science recommends:

 For people with ME/CFS, social distancing and isolation is going to have to remain for many months to come – until a vaccine is developed (probable), a successful antiviral treatment has been found (possible) or what is called herd immunity has occurred (i.e. a large number of people are now immune to the infection) and the virus can no longer spread effectively.

 Dr Charles Shepherd, Hon. Medical Adviser, ME Association

https://meassociation.org.uk/2020/06/latest-free-leaflet-update-covid-19-coronavirus-and-me-cfs/

The ME Association have prepared a statement which outlines why 'people with a diagnosis of M.E. should be regarded as vulnerable and why they are deserving of increased support where required' which can be found by following the link below:

https://meassociation.org.uk/wp-content/uploads/MEA-Covid-19-MECFS-Vulnerable-Status-Letter-April-2020.pdf

This is perfect for anyone struggling with the way to address work colleagues or OTs if work is not possible currently and bosses need help with understanding why.

I have to admit, I have been getting twitchy. I want to go and hang out at my local, dance at a gig and go for coffee and cake with friends at our favourite places. But for those of us with ME, we have to make a judgement call with the help from our medical support network, not because Bertha down the street is heading to Morrisons every few days for a wander and not because Frank over the fence sits in his local pub drinking pints and dismissing COVID19 as government control tactics every afternoon.

As of Sunday 28th June 2020, there have been 9,195,132 tests, with 311,151 people testing positive. As of 5pm on 27 June, of those tested positive for coronavirus in the UK, across all settings, 43,550 have died.

Source: UK Government

Let that sink in. The virus may be causing less deaths now due to our fabulous NHS keeping patients alive despite the various mismanagement issues in the early days, but there are new cases being reported each day. Our condition not only makes us vulnerable or high risk to catching this strain of coronavirus but of heightening our current symptoms in the long term.

I had a few weeks over New Year 2020 and then again in early February where me and my youngest went down with something we believe was the virus. We lost sense of taste, had severe headaches, severe fatigue, stomach ache, laboured breathing and dizziness. If my youngest hadn't had it, I'd have put it down to an ME flare up apart from the lost of sense of taste, which incidentally has only recently returned.

This was before we could be tested without a hospital admission and we just took doctor advice and luckily didn't get any worse.

My youngest has bounced back. Yay. Now, I haven't come out of that flare and so have had to stay home unless for key reasons listed:

People who are vulnerable, including anyone with ME/CFS, should try to stay at home except for:
Shopping for essential items such as food and medicinesA walk or some form of daily exercise if ableMedical appointmentsTravel to work/school if you are able to do so
You should also ensure that you are at least six feet (2 metres) apart from anyone outside of your household.

Source: NHS Choices

I think we're now about week 20 and for the last eight weeks I'm managing one or two afternoons a week for coffee at a friend's house or tea and cake at mine in the garden (socially distanced of course) and a couple of trips out to nature reserves like Ulley Country Park  when quiet (early evening is a good time!) just to get my nature fix. I've taken two cabs wearing my mask and anti-baccing as we're advised and that's as much as I'm prepared to do as yet. I am quite happy at home with my writing and family life keeping me busy so this really isn't affecting me as much as I thought it would. I'm taking measured risks but very small ones!

So, here are my handy hints for staying safe with moderate/severe ME during Coronavirus

1. SHOP ONLINE I'm still online shopping for everything and my hair and nails are rather unkempt but hey. I'm not risking my condition getting any worse - I have boys and cats to keep alive and writing to do, friends to love, books to read and a garden that needs care and attention.

2. HANDLE POST AS IF IT'S CONTAMINATED! The jury is out on what the best strategy is so here are the three I know people are currently doing and are cited as safe in articles I've read:
i) Leave post and parcels for 72 hours before touching. Dispose of packaging after opening. Wash hands afterwards.
ii) Spray surface with anti-bac, open and dispose of packaging. Wash hands afterwards.
iii) Open and dispose of packaging. Wash hands afterwards.

3. WASH HANDS EVERY 20-30 MINUTES I always have anti-bac gel with me and wash hands while at home too. I have pets so wash my hands after handling them. I also use handcream to moisturise - dry hands are not a good idea as can pick up infection more easily.

4. WEAR A MASK WHEN OUTSIDE UNABLE TO SOCIAL DISTANCE AND IN SHOPS it's now mandatory in shops but by wearing a mask you are reducing the risk to yourself and to others if you're asymptomatic.
The virus is likely to be airborne which means it could be anywhere and it exists on surfaces like tables, cups, cutlery etc up to seventy-two hours.

5. USE ANTI-BAC WIPES The virus is likely to be airborne which means it could be anywhere and it exists on surfaces like tables, cups, cutlery etc up to seventy-two hours. I anti bac anywhere I touch but have learned to keep my mitts to myself and this is minimal but discrete if I feel the need at places such as door handles and seat handles.

7. KEEP TO A ROUTINE This is paramount for mental health and while I struggle with this and its certainly a work in progress for me, I find my better days are those when I follow a small yet set routine. My mood is better and I feel I have done things that are purposeful This includes a time for a hobby if I'm up to it and rest if not. Watching back-to-back 'Homelands' on Netflix has its place but it doesn't help my mood if I'm still there on the second or third day!

8. TAKE A VITAMIN D SUPPLEMENT People with ME have low Vitamin D and this makes us more at risk of catching Coronavirus.

9. GET OUTSIDE EVERYDAY I have a garden so this is easier for me. If you can go for a walk, this is good for body and soul. If you can wander round your garden, do that. If it's just a balcony, make it a green space to be with  few plants and a chair to sit on. I read outside for at least half an hour, longer if my brain and body are up to it!

10. SOCIALISE This may be in person, socially distanced, it may be live chat on screen or it may be virtual typed contact with a support group. There are plenty to choose from that provide a lifeline for people who feel lonely. Loneliness is painfully felt for lots of people living with ME, whether they live alone or not. Reaching out for support to virtual friends who like similar hobbies or music can be hugely beneficial.

Just take it a day at a time. As a dear friend said to me recently:

The trick is to keep peddling!