Carolyn has the condition CVID. Here she gives her perspective on how she lives her life in the COVID pandemic. She says:
‘I have read and listened to other peoples’ stories about living with the threat of COVID and thought I would offer an alternative one. Please don’t get me wrong, many mornings I wake up terrified about the future or lack of it and I do definitely feel part of a forgotten minority. But I don’t think it is realistic for the whole country to be put on hold for a small group of people, however important we are. I consider it is up to me to use my common sense, to carry out a mental risk assessment of what I would like to do and decide whether it is safe, or, at least, worth the risk.
I feel supported in this both by my my Immunology Department and the nurses at the local hospital where I have my infusions. With my GP’s approval, I have never stayed at home since the start of the pandemic, I’ve always gone out walking, although I appreciate I’m very lucky in that I live in a rural situation. The most surprising aspect to me, at the beginning of lockdown, was that others were avoiding me as seriously as I was avoiding them. I do my shopping online although Tom, my husband, picks up bits and bobs from the local shop in the next village when he gets the newspaper, which I’m obviously very grateful for. The only time we have made any effort to stay apart was when I had Covid (unconfirmed-no tests available in March 2020) and I coughed so violently all night every night, that I kicked him out into the spare bedroom so he could get some sleep.
I try to live as normal a life as I am able, while being extremely cautious. I have never sanitised or quarantined my post or deliveries (what is wrong with washing hands after opening?) I go out for lunch, when it is quiet, in restaurants and pubs which I know and trust and I have recently returned to orchestra rehearsals, which started 3 weeks ago for the first time in 16 months. I read the committee’s risk assessment and was impressed (two of the committee members are local GPs). It is strings only, socially distanced, masked and so well-ventilated that the music flies off the stand, if not firmly held in place.
I have been to the dentist, optician and hairdresser, without feeing threatened in any way. It is our Golden Wedding Anniversary next weekend and we are having a family reunion, I haven’t seen my son and his family for around 18 months and have only seen my daughter and her family a couple of times. The adults are double vaccinated, the children tested to within an inch of their lives, so I will be sensible, but take the risk.
On the subject of masks, I can’t breathe with one, so I have one of the PID exemption cards which I wear round my neck. I’m delighted that they will be no longer compulsory as I can’t hear a thing people are saying if they are wearing one. At the start, we were all told not to touch our masks once they were in place, but no one seems to take this advice seriously and most people don’t wear them properly anyway. I don’t see that a special point needs to be made about this, it has always been agreed that, although masks won’t be compulsory, there is nothing to stop individuals wearing them if they want. I fully agree with them being worn in crowded places, but then I wouldn’t go near a crowded place in the first place.
I think that now, as Boris reminds us, ad nauseam, that the vaccine rollout is extremely successful, the government does need to turn its attention to the plight of those who get no protection from this “great achievement”.
Personally, I am far more concerned about the shortage of immunoglobulin products than about the risk of Covid. I survived Covid, but I barely survived without immunoglobulins before I was diagnosed.
I realise my views are rather different to some of those in the immunodeficiency community, but I do think a good dose of optimism can work wonders!’
Posted 20th July 2021