Thankfully, so far in this dreadful and tragic pandemic I haven’t contracted Covid-19, which is a big relief. However, the actions I’ve taken trying to avoid the virus have changed my life a lot. Due to being fed intravenously and having EDS / POTS, I’m considered to be ‘clinically extremely vulnerable’ to the virus. I live alone and before Covid I used to have one or two visits per day from a carer. I do all my own medical care but I get help from carers for more physical jobs such as laundry. When social distancing measures were introduced at the start of the pandemic, I reduced the number of carers visiting me by about half, and my physiotherapist couldn’t visit as physio clinics were closed by the government. Consequently, I had to do more jobs which were usually done by carers while also being in more pain from lack of physio. Some days were pretty difficult, but I’m lucky as I was able to get help from my family.
We’re now nearly two years on from the start of the pandemic in the UK, and for vulnerable people like me, not much has changed. During the summer months I’ve had regular physiotherapy and more help from carers, but currently, due to the very high infection rate I’ve decided to have help only from my mother and no physiotherapy.
For the last 20 years my EDS & POTS symptoms have very gradually got worse. During the pandemic the rate of decline has increased and I’m now in more pain with noticeably worse tachycardia and dizziness than at the start. Less physio, more pain, and consequently less rehabilitation work have contributed to that. Also, I used to go out regularly, which as well as being fun was a good form of physio.
This is a dark time for everyone in the world, and compared to how Covid has affected some people my troubles are tiny. However, I wanted to explain how social distancing, while sensible and necessary, can have cumulative physical and emotional consequences. As well as a physical decline I’ve also struggled with the isolation at times and anxiety about contracting Covid, and whether my TPN supply will be maintained. Due to staff absences some patients fed by TPN have had their supply interrupted, which must have been very difficult. I was so concerned about this at the start of the pandemic that I bought a second pharmaceutical fridge to keep as much stock as I could. However, thanks to the amazing laboratory and staff at The Royal London Hospital, my supply has been maintained.
Due to the deterioration I’ve experienced I’ve often wondered if, rather than constantly shielding from the virus, I’d be better off taking the risk of living more normally. I’ve never considered myself to be at high risk of dying from Covid, so even if I contracted the virus the overall outcome might be better. However, I have to set up TPN every day, which is a meticulous, sterile process that I struggle to do even if I just have a cold. If I got Covid I’d likely end up in hospital needing help managing TPN. Also, I have a couple of friends with EDS who did contract Covid and recovered poorly. So I think I’ve been making the right choices, but I’m not sure, and psychologically I can’t carry on shielding forever. I always try to be positive and optimistic as I think that helps. I’m fully vaccinated and the Omicron variant so far seems to be milder. It’s plausible things could be much better in a few months.
Thankfully there have been some benefits from the pandemic for disabled people. I used to regularly attend clinic appointments at London hospitals. Travelling by car or ambulance it could be a 6 hour round trip for 30 minutes spent with a doctor, but appointments are now routinely done by Skype. I’ve also been able to have a Pilates class online for people with EDS, breathing physiotherapy for POTS and cognitive behavioural therapy for joint pain, none of which were available online before Covid started. It’s also become normal to socialise online and countless educational courses have become available via distance learning. It feels like the world has opened up for disabled people, with opportunities some disabled people have never had. It’s exciting, inspiring, and annoying these things weren’t available before!
Lastly …happy new year! Let’s hope it’s a much better year for all of us.
Thanks for reading, Ceri.
ps. You can read my previous post about the pandemic by clicking HERE.
UPDATE: A few days after posting this article I was informed that due to staff absences my TPN supply will be interrupted. It’s not surprising with the infection rate currently being so high. I’ll receive generic parenteral nutrition bags rather than bags made to my prescription. They’re one litre smaller and have a different calorie level etc. I’ll have to infuse IV fluids too each day which is time consuming. Hopefully it’ll only be for a week. I remain incredibly grateful for TPN, which has given me 8 extra years of life, and counting.