My long covid journey
I have been housebound since catching covid in March 2020. Please be careful out there people even if you are double jabbed and boosted, you can still catch covid and while you might be unlikely to need hospital treatment at the time you could be left with long covid. I never had a stay in hospital and have struggled to get the help I need from the NHS in the last 18 months. The long covid clinics you see on the TV are a postcode lottery.
You don’t want what I’ve been left with, even when the pandemic is over I may still be housebound and effectively in isolation. You think 10 days isolation is tough try 18 months. Before a recent trip to my parents I’d gone 8 months without being in the company of others for more than a couple of hours. I can only cope with really short face to face meetings or phone calls because I get so fatigued and have so much brain fog.
I now pay for a home help to pop to the shop, do some housework or washing up. I’ve recently come out of a two month long relapse. I moved to my parents – while other family returning from living abroad needed to quarantine in my home. It pushed me beyond my physical and mental limits causing a kind of physical distress I have never had before – not even last winter when a trip to get an x ray triggered a 3 month relapse. I’ve also relapses for a month after each vaccine.
I’ve learnt from the winter relapse and organised hospital transport so I could be stretchered in for recent checks on my heart. I’ve probably got POTS. POTS is Postural Orthostatic Tachycardia Syndrome, a condition that impacts the part of the brain that is responsible for the control of bodily functions such as breathing, heartbeat and digestive process. I tried with varying success the lifestyle stuff to help with this for a year although yet to get advice from an NHS professional about POTS.
The Clinical Commissioning Group (CCG) that are responsible for commissioning new services set up a long covid service in September and in March I had a hurried 10 minute call with a Respiratory Consultant who referred me back to my GP – they didn’t understand my examples of breathlessness nor know I was having respiratory physio to help chronic hyperventilation syndrome.
I’m lucky my GP surgery has been supportive of long covid. Thus a year after I’d become ill my GP had to start again with referrals and I waited 3 months for another hurried 10 minute phone call – this time a cardiologist who seemed shocked I had gone so long (15 months) without having my heart checked – I will likely need a tilt table test to diagnose POTS which sadly thousands of people with long covid now have. Cardiologist said my bloods were good and I laughed because they had been done a year ago! Two months after an echo and ECG the Cardiology department has been so short staffed the cardiologist has yet to look at the result.
NHS Respiratory Physio was great the exercises have helped although I’ve often been too fatigued to do them. Slowly week by week I have been breathing more through my nose and less through my mouth. And more into my belly rather than my upper chest. But only in the last few weeks have I seen an improvement in how long I can hold my breath. 10 private osteopath appointments have helped release my chest bit by tiny bit and I no longer get severe chest pain that I had for the first year. This second year of long covid I have developed frequent headaches that require me to rest – don’t think I’ve even mentioned them to a doctor. The first few months GP calls were pretty frequent but this year they have been every time a new fit note is needed – so two monthly – this has recently become three monthly.
Through long covid Facebook groups I found an amazing long covid yoga/PT group with twice weekly live classes to build back up my body strength and help me restore my autonomic nervous system. I could tell when I was coming out of my recent relapse because I was able to do both live yoga classes a week and there was no washing up for my home help. I chart my progress by noticing improvements in my bodies ability in yoga/PT and physio exercises – my yoga ability is about 5% of my pre covid self. The yoga/PT classes have given a structure to my week, given me hope for the future and a place to feel I’m not going through this alone.
I’ve learnt from my recent relapse home alone is the best place for me to heal at the moment as I can go at my own pace and rest in the quiet I need. (I’ve stopped yearning for a day trip to the beach or a week in Cornwall). Most of my life has moved downstairs I only go upstairs twice a day for my daily period of complete rest and to bed at night. Thankfully my toilet is downstairs.
Family members recently got my car back on the road and sold which was a relief. Although others seemed more worried that my car hadn’t been used for over a year than I did – just getting through the day takes all of my effort. Yet I still have transport needs. Getting a taxi is awkward because I have to sit cross legged on the seat and the driver may not like shoes/feet in their seats.
I have improved I can now bend forward, kneel and even crouch – until very recently I had to sit with my bottom on the floor when putting stuff in the washing machine or oven. I did feel immediately weird when sitting with my legs down but now I can now sit with legs down to put on my socks -but not for longer. Thus because I can’t sit with my legs down I don’t think I could use a wheelchair- I’d need one I could sit cross legged in or with my legs out front.
So there is hope I will improve – at a pace that I’ve accepted will be frustratingly slow. But for now I have to pass up invites to dinner, celebrations for milestone birthdays or seaside camping trips. One face to face visit is my norm at the moment – some weeks that’s just my home help. I’m often just too fatigued to reply to messages while my memory is there, my recall ability is that of a goldfish. My social circle has shrunk dramatically and I’m lucky to have a handful of very kind family and friends who bring me food, give me lifts, hoover, ask if I need anything or just listen.
The NHS staff are working very hard but if you develop long covid getting help from the NHS will be difficult. Those of us who got ill at the start of the pandemic are still struggling to get help. The great long covid clinics you have seen on the TV haven’t been my experience – it seems a postcode lottery. The best advice for recovery comes from Facebook groups and webinars/short films leading medical specialists in Mast Cell Activation Syndrome (MCAS, POTS etc have made with and for the long covid community. Although I’m too fatigued to watch all those I want to and I’m still figuring out the best way inform doctors involved in my care about what these expert doctors advise.