Are you enjoying the coronavirus lockdown? Surprisingly, I know quite a few people who are. For some it’s given them unexpected time off work, time with their family, and they’ve been doing activities they haven’t had time for for years. But for others it’s been a truly awful period. Many people are miserable and scared, with very good reason. For me, while I’ve had to make some changes, it’s really not very different from my normal life.
As I live alone, can’t work, and spend most of my day attached to machines for nutrition, social isolation is unfortunately normal for me, along with meticulous hygiene due to having tubes into my body. Those issues are worse now, along with general health anxiety, but overall I think the lockdown has been much less of a shock to me than others. The changes I’ve had to make are due to social distancing. Since I started being tube fed ten years ago I’ve done the majority of my medical care myself. I’ve had some help with more strenuous jobs, such as laundry, cleaning and some preparation for tube feeding. Since the lockdown started and no one is supposed to come within two metres of me, some of those jobs I’m having to do myself. It’s causing me quite a lot of extra pain and I’m not able to see my physiotherapist. So this is a difficult period for me, but I’ve been touched by many offers of help from friends and neighbours. I’ve also had some really memorable moments, like the first clap-for-carers, and cutting my own hair which looked comically awful. I’ll spare you a photo!
A couple of weeks after this crisis started I received a letter from the government informing me that I’ve been put in the ‘clinically extremely vulnerable’ group to protect me from coronavirus. This is due to having a long term health condition and being fed intravenously. The letter asked me to stay at home for 12 weeks, whereas the rest of the country were asked to stay at home for 3 weeks. I was offered a free box of groceries though, which I would have appreciated if I could actually eat food! The letter left me wondering if I am more vulnerable to Covid-19 than the average person, and if I am does the additional risk justify the changes I’ve had to make, the extra pain I’m living with, and the longer period of quarantine?
I have regular blood tests due to being fed intravenously. For ten years or so, my platelets level has been low and more recently my haemoglobin level too. The consultant that manages my intravenous feeding advised that as my white blood cell levels are normal and I don’t have any of the conditions that make people particularly vulnerable to Covid-19, such as diabetes, he doesn’t think I’m at high risk from coronavirus. However, as I have a chronic illness, some blood imbalances and I’m general rather frail, he’d expect me to struggle to fight off the virus more than a healthy person of my age. The phrase ‘extremely vulnerable’ is a bit strong in my case, but it is sensible for me to be careful and it’s also better for the cause as a whole. If I were to contract Covid-19, due to the coughing and fatigue, I’d likely struggle to set up my intravenous drip in a sterile manner. I might need to go into hospital for support managing my tube feeding rather than solely due to the symptoms of the virus, which would put extra strain on the NHS at a very difficult time.
So for the last ten weeks I’ve stayed at home on my own. I’ve had one visit from a carer each day, but they kept to a different room from me. It’s been dull and frustrating, but compared to what some people have been enduring in this crisis, particularly doctors, nurses and carers, it was very little to ask of me. As of today, the rules are changing for the ‘clinically extremely vulnerable’ group. I’m now allowed to meet one person, which is a small but very welcome change. Hopefully there will be more changes soon.  The virus will be in our environment until a vaccine is found, which could be five or ten years away, or may never happen at all. We’re all going to have to live with the risk of catching it. Balancing health concerns and quality of life isn’t new to me and I’ve learnt to lean heavily towards quality of life. I won’t be having a wild party anytime soon, but I’ll be getting out as much as I can and catching up with friends and family.
Sadly I’ll likely be writing more posts about the affects of coronavirus. I’d like to end this one by mentioning Clare, a friend and former carer of mine. Clare trained as a nurse but left the NHS after ten years due to the hours and pay and became a carer. She’s been helping me for a few years and was always an excellent carer and fun to have around. Clare left a few weeks ago to return to the NHS to help fight Covid-19. She’s chosen to put herself on the front line of this crisis which was a really brave and selfless thing to do. I’d just like to wish her luck and say thank you from all of us. Stay safe Clare!
Thanks for reading, Ceri.
ps. I didn’t think I’d ever feature adverts on this website. However here’s an advert for ‘Barnard Castle Eye Test, a short sighted beer for tall stories’, which I’m showing simply because it’s funny and profits go to funding free sanitiser for NHS Charities.