ME Awareness: The Coronavirus lockdown and ME by Pamela Lap | 12 May 2020

May 12, 2020

The Coronavirus lockdown and ME by Pamela Lap.

I was diagnosed with myalgic encephalomyelitis/encephalopathy (M.E.) in 2005. I think it started much earlier in the mid 90’s when I had Glandular Fever. I’ve had it a long time anyway.

Pamela Lap.

I currently have symptoms of some sort of bug, temperature, stuffed up head, sore throat, croaky voice.

It could be the start of Covid-19, or of some other infection, or it could just be my M.E. No way to tell until I wake up tomorrow.

Given there’s no test for M.E., I’d really appreciate a coronavirus test to prove I’ve got it or had it, but they only do them for hospital patients.

We are left not knowing if we have survived it or never had it. Far from satisfactory. It’s a worry.

Given I feel extra poorly it’s good I have nothing urgent that needs attention. Tonight, supper is easy to prepare; no cooking needed.

No Support

Since the coronavirus started to spread I have cancelled all my support (my cleaner and my carer), because I want to be completely isolated.

Three people here have contracted the virus, so I am scared to leave my flat as I feel it is in the building. I have to take my rubbish along the corridor where I feel at risk.

I am frightened I won’t survive if I catch the virus. Without my carer it means I am having to do some things that I don’t normally do, and this makes me extra worn out.

In fact, a lot of it is beyond me. I can’t shower, wash my clothes, change my bed linen, without my carer. My home is getting dirty too.

I try not to worry about it. All my usual coping strategies have been written off. This is becoming quite stressful and I feel depressed when I wake up each day.

Food Deliveries

Food shopping is normally automatic, my shop made up by the supermarket and delivery slot reserved for me. This is great as I am housebound. But since the virus that has all stopped because the website broke down.

Now I have to do it myself and it’s been a nightmare not being able to access the supermarket online at times. Although, I managed to get on the supermarket priority list eventually as a vulnerable person; and it is a bit easier now.

I feel quite upset that something I utterly depend on has been high jacked. I feel upset that healthy people don’t recognise the sick and disabled have struggles with living and isolation, even though they themselves are now complaining about having to stay at home.

Download the latest ME Association updates on Covid-19, PVFS and ME/CFS.

I have real difficulty getting my shopping delivery from outside my flat door to the kitchen, unpacking and trying to disinfect it all to put away (fridge stuff mainly, the rest I leave for 3 days).

Normally the supermarket would put it all on the counter top in the kitchen for me. Yesterday I had a nasty fall trying to do it all. It is really too much for me, but there’s no one else to do it. At least I have an emergency call button around my neck.

Medication Delivery

Luckily, my medications are still being delivered by the pharmacy. However, some medicines are in short supply and there does not seem to be much concern about us going without.

For some medicines, one is not supposed to stop suddenly, but to taper off, so this can actually be dangerous, but no one seems concerned.

The medication they can’t get for me at present is one which I really need as I am going through a bad phase of symptoms with my M.E. It feels as if this doesn’t matter to anyone.

Isolated and Anxious

I am scared if I get the virus and will need to be hospitalised. I worry that they won’t put me on a ventilator because of my M.E., heart condition (part of my ME), or my age.

I live in residential flats for independent living for the over 55’s. I feel like I don’t count. Just like they are not bothering to take care home residents with symptoms to hospital and aren’t counting the deaths – like they really don’t count. It is shocking.

My life hasn’t changed much except for the loss of my carer. I really hardly ever see people face-to-face normally.

I’m more exhausted than usual without any help, but I manage. I am anxious that my M.E. may significantly deteriorate if I get the virus and don’t easily recover. There’s nothing I can do about that if it happens.

ME Awareness Week Monday 11th – Sunday 17th May 2020

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