Why am I writing this?
It’s been a year since I woke up with a headache and a cough which were mild in themselves - but followed by the sting of Long Covid. I still don’t know if I’ll ever be fully recovered or if this is the best its going to get.
I wasn’t going to do anything to mark this unwelcome anniversary but seeing some of the Invictus Games alumni talk about the importance of marking their ‘bangiversaries’ changed my mind.
I’ve seen other Covid Anniversary pieces and been inspired, encouraged and validated by them. If this helps one person in that way then its worth it.
I also want to record what’s happened - maybe someone will one day collate our experiences and in the next global pandemic people may avoid the long tail by taking note of our experiences. And I want to record my thanks for the amazing people that are helping me and the other Long Haulers get through this.
I was worried that this would be self absorbed, self pitying bullsh*t - if it is I’m sorry. There have been some positives that have come out of all of this and I do try and hang on to those.
Its been a tough year - but other people have had it worse (one reason I wasn’t sure about writing this). I also realise I am very fortunate, privileged and relieved to be financially secure and not to be worrying about losing my job. How Long Haulers with those worries cope I don’t know.
Yet another reason to write this in the hope that our anniversary stories help encourage people to take the risks of Covid seriously and thus prevent others joining us unwilling pathfinders on this journey.
Before I semi retired in 2010 my career had been in social policy analysis and strategic planning - writing reports was bread and butter and something this long would have taken less than a working day. This has taken over a month to compile, usually in half hour bouts with long rests in between.
Trigger warning
I’ve visited some dark places on this journey and I don’t want to go back to them. If this might trigger anyone reading, please stop and ring one of these helplines. I have learnt that there are loads of people out there to help.
The Samaritans Tel: 116 123 samaritans.org
Mind
MindInfoline: 0300 123 3393 mind.org.uk
Me Before Covid
In January 2020 I was making big plans. They say that if you want to make the gods laugh, tell them your plans. Well they must have been in hysterics at mine. I was planning to book some bucket list trips - India in January 2021 and Singapore in the autumn 2021.
2016 to late 2019 had been a stressful time with my mum’s last illness, death and clearing her house. I’d retired from work with all the adjustments that meant. But things were looking up. I’d started getting back into the local comedy club circuit, was writing new material and looking forward to doing more stand up. I’d got millinery commissions and bookings for talks and workshops. Since 1992 my lifestyle had centred around horses. My current horse, Monty, had had loads of problems which we had just sorted out and I would have time to devote to riding him and ticking off some other bucket list goals. The gods laughed louder.
I wasn’t particularly fit but I was active. I rode my bike around the village instead of driving, walked the dogs, went to Aquafit and Yoga classes as well as working Monty.
Being a military wife for 18 years and a military mum for another 20 meant I’d absorbed a bit of a military mindset - hence my inspiration coming from Invictus Games participants. I’d also developed the typical military dark (and often totally inappropriate) sense of humour. This may be the reason I’m still here to tell this tale but I apologise to anyone who takes offence.
Combined with the ‘get straight back on the horse’ equestrian ethos (pain is temporary) I dealt with misfortunes like broken and dislocated bones and the odd operation really well. After my last riding accident (broken collar bone and several broken ribs) the physio commented on how well I’d healed (although she did add ‘for someone your age’). Over the years I’d ridden with my arm in a cast and gone back to work and yard work after operations probably before the doctors thought I should (if they’d known about it).
My immune system had always been pretty ninja - and that had originally been a good thing. I shook off colds and bugs easily, could work through most things. In the 1990s I had a couple of spells after a cold type thing where I was a bit run down, blood tests showed I’d had a virus but a couple of weeks slowing down sorted it out.
In December 1999 I thought I had a cold coming on but pushed through the last couple of weeks of work with the idea that I could let it come out over Christmas and shake it off by New Year. It didn’t work out that way but work was busy so I pushed on over January. It turned out it was Glandular Fever (Epstein Barr) and it turned into ME/CFS. This was in the “good old days” before Post Exertion Malaise had been discovered and the science behind it understood. The “cure” was rest, CBT and gradual increased exercise now discredited and discouraged.
In spite of that I learnt, by trial and error, how to manage the relapses and they gradually got further and further apart and lower in intensity. So far so good.
There were further problems after a serious bout of cellulitis that had me in hospital for nearly a fortnight and on humongous doses of antibiotics for weeks after that; and when the stresses of my mum’s last few years, sorting her estate and dealing with the complaints procedure following her end of life care ended it resulted in a massive ‘crash’ as soon as everything was resolved.
But in January 2020 that was all in the past - the future was going to be amazing. The gods laughed some more.
My Year
Thursday 16th April 2020 woke with headache and severe cough.
Went on 111 website and completed on line questionnaire - message came up advising I needed to speak to a medical professional on 111 phone line.
Medical professional advised that it was probably Covid, to isolate, take paracetamol and honey/ lemon if necessary and that I was not eligible for a test. Also advised to ring back if there were still problems after 2 weeks.
Isolated until 30th April. Only needed a couple of paracetamol for headache for three days. Cough lasted just over a week. I did notice my sense of taste and smell were a bit weird and felt nauseous when faced with certain foods which had before been my favourites.
As soon as I was out of self isolation and because I was feeling so well (almost euphoric) I went for a bicycle ride approx 10k. Felt a bit tired after but otherwise pleased to be out of doors again.
Over next couple of weeks I started to feel very tired, had chest pains and was getting more breathless. Within a few days I had to sleep sitting upright and some nights I hardly slept at all due to a feeling of being ‘wired’.
At the end of May I rang 111 and spoke to a doctor. I was told that as my sense of taste had now completely gone I could get a test although it would probably be negative as it was so long after initial symptoms. The results came back negative.
About this time I discovered the Facebook Long Covid Support page - and it was an absolute lifeline. Discovering I wasn’t going mad and that hundreds of other people were getting the same random set of symptoms was reassuring. I’ve learnt as many coping mechanisms from my new community as I have from medical professionals. When the history of Covid is compiled, the impact of social media and the way Long Covid has been identified and owned by those suffering from it will be key points.
I rang my GP and nurse practitioner said they were hearing about some post Covid problems and to rest and give it time. She actually said the best thing ever “We’re hearing about these problems, unfortunately we’re going to learn about it from experiences patients like you - but we’ll help however we can”. They’ve been as good as their word and I am so grateful for their unfailing help and support.
Symptoms persisted with fatigue exacerbated by any attempt at exercise or activity, shortness of breath, and chest pains most of the time that felt as if a baby elephant was sat on it.
At the end of July I rang the surgery as the tiredness was getting worse - blood tests were taken and chest x ray organised. The same day the bloods were taken Doctors rang to say I needed more blood tests as blood count was low. Learning point - its never good when the doctors ring that soon after a blood test to discuss the results. The further tests revealed that iron was very low and it necessitated iron tablets immediately and urgent referral to hospital consultant in case it signified internal bleeding or ‘something nasty’.
Gastro consultant at Scunthorpe hospital referred me for a colonoscopy, CT scan and dependent on that a Gastroscopy.
Before they could happen I felt very faint one afternoon and rang the surgery. They asked me to come in the next morning to have my blood pressure checked.
While waiting in the surgery I became very faint, nurse took sitting and standing blood pressure and went to consult GP. GP ordered an ecg and on seeing the results consulted Scunthorpe Hospital who admitted me to the Acute Assessment Unit for further blood tests and monitoring. I was discharged later that day as blood had improved on initial tests from GP. Learning point - when nurses go to consult doctor and doctor then goes to consult hospital its never a good sign.
CT scan, endoscopy and gastroscopy in August - revealed inflamed stomach and swollen lymph node. Referred for PET scan to rule out ‘something nasty’.
Learning point - if 2020 were a drink it would have been colonoscopy prep.
September PET scan showed two swollen lymph nodes which would be monitored by Haematology department.
About this time I hired a wheelchair - desperate to go out somewhere but unable to walk very far. Safe to say I’m not a good car passenger when my husband is driving, a wheelchair took it to a whole new level of marital discord! We drove to Cleethorpes (about half an hour away), went down the Prom and back again and came home after a coffee. I was shattered - so decided the wheelchair could go back (just as well as another lock down came). Besides what was the point if I was going to be as exhausted being pushed in a chair as I would have been walking? I use a walking stick now as I’m a bit wobbly and don’t want any broken bones from a fall.
In November I felt so depressed that I checked out the Dignitas website as I really couldn’t see how this was going to resolve itself. The uncertainty of whether Long Covid was a permanent disability was unbearable. I could cope with knowing it was permanent, but not the uncertainty of whether I’d ever get my old life back. If anyone has reached this point - please talk to someone.
Dignitas website seemed to indicate that their services are only for people with long term/life limiting illnesses - the irony of not knowing if that was what Long Covid was struck me forcibly and I sat laughing hysterically for about 15 minutes.
After that I rang GP, explained where I was mentally and asked for a referral to Long Covid clinic and to discuss mental health. She promised to try and find out how to refer to Long Covid clinic and I began a course of counselling to deal with mental health elements.
GP signposted YourCovidRecovery.nhs - but not with password access. The generic advice was exactly what I’d learnt from the Facebook support group. (E.g. solution for being tired is to get enough sleep - no sh*t Sherlock).
My GP and I began a magic roundabout journey trying to find a local service that could support Long Haulers. She discovered that the password could only be given to those in an area with a team that could provide a personalised service and wasn’t available in our area. She tried to get me a referral to Immunology, who said no to Long Covid patients as a clinic would be set up ‘soon’ but suggested she try Infectious Diseases. They in turn said the same thing and suggested
Respiratory as a referral route.
January 2021 dawned - and with it a whole new schedule of appointments. Blood tests show iron back to normal levels
PET scan repeat - showed one lymph node had gone back to normal, the other had got bigger. Repeat appointment scheduled for June with case being discussed by management team because it isn’t ‘normal’.
GP finally found a route - my area has a Complex Care Team and they have taken on Long Covid patients on top of their usual case load. On 1st February I had a home visit from my Complex Care Matron - given breathing exercises, she liaised with GP for neurology referral and referred me for a Virtual Reality breathing exercise programme. This felt like a real turning point. Massive shout out to my local NHS Trust for showing initiative and using an existing team rather than waiting for a Long Covid clinic to appear.
https://www.nlg.nhs.uk/content/uploads/2019/11/IFP-0923.pdf
In February - repeat Gastroscopy showed ulceration gone but Barrett’s oesophagus remaining. Repeat scope in 3 years time to check for ‘anything nasty’.
Early March appointment with Neurology, lots of questions and cognitive tests. Currently waiting for EEG, head and spine MRI and nerve function tests.
How I feel now
Physically:
Over the course of the year I have experienced the daily random mixture of over 40 different symptoms. Some are (fingers crossed) in the past now. About 15 remain and its a daily surprise as to what the mix will include.
Luckily the baby elephant sat on my chest went away in about November. I still get breathless - linked to movement and exercise but not the awful chest pains.
The brain fog is weird - I’m scared its the beginning of dementia (my age really doesn’t help things here as I know the future is likely to bring ‘something nasty’ at some stage).
The neurological sensations - brain fog, tingles, loss of balance, numbness, etc don’t seem to be going away very quickly.
I still smell burning when there is none there and have only just started to be able to eat chocolate again - thoughts of squidgy desserts are still nausea inducing. There are still times when I have a pregnancy like feeling of nausea and I have gone off certain foods completely. This may or may not be a good thing, it hasn’t helped the weight control as I’ve put back the stone I lost during lockdown due to the nausea.
I’m sooooo tired - and yet still have disturbed sleep. ‘Tired but wired’ is the strangest, most illogical sensation.
Emotionally:
I’m angry that so many people are in the same boat as me and angry at the way my body is stopping me from doing things.
I’m upset at every crash that comes after a couple of good days - and angry at myself for being hoodwinked into thinking that a couple of good days mean I’m on a non-stop, one-way road to full recovery.
I’m terrified on bad days that this is it and there won’t be recovery. I’m grateful to so many people who help and inspire me.
I feel guilty when I’m feeling sorry for myself because there are so many people in a much worse situation and those who have been bereaved are suffering so much more.
Tips I’ve found useful
• Taking time to get out of bed in the morning - sitting in bed and drinking a bottle of water taken up the night before - tip from Facebook support group.
• Hot water bottles are wonderful for that awful lower back pain - tip from my grandma when I was little.
• Taking that the time in the morning to go through symptoms to assess how I feel. I got this one from Alastair Campbell’s book where he assesses his mental health each morning and adjusts his daily plans accordingly. JJ Chalmers also spoke about assessing how his body feels each day due to infection risk. It works as well for state of brain fog and other physical symptoms - I also reassess mid morning, lunchtime and mid afternoon as things change so quickly.
• Not raising my arms above my head - tip from Community Matron via Occupational Therapy.
• Using Fitbit to monitor heart rate, keeping it to under 100. Tip from Physios for ME YouTube video. I’ve now ditched the Fitbit (in a very toddler-ish tantrum) as I was resenting the role it was playing in my life - I have the same relationship with my walking stick.
• Have a bag at the bottom of the stairs to put things in that need to go upstairs to minimise stair climbs. Plan tasks to have upstairs time and downstairs time - again to minimise stair climbs.
• Use lists and break tasks down into very small steps.
• Reflect regularly on small improvements and celebrate them.
• Plan for anything major and energy draining - rest before and plan for rest afterwards with things like Netflix and nice snacks, diy spa treatments, list of podcasts to sit and listen(snooze) through. (This came from the ME CBT and was the only useful thing to come from it).
What I’ve learnt
Well, where to start?
My ninja immune system has probably gone full on rogue mutant ninja over the last few years and Covid was the final straw.
Since I had ME in 2001 so much has changed. PEM has been discovered, MCAS is also a new revelation.
My weekly To Do List is the same size as my daily To Do List used to be - but in autumn 2020 my monthly To Do List was that size - so progress of sorts.
Before Covid I had the activity and health levels that my mum had in her late 40s, so was thinking 70 would be the new 50. Last autumn I had the activity and health levels that she had in her early 80s and worried that, for me, 70 would be the new 90. Now I think my activity and health levels are where mum was in her late 70s, - so it is moving in the right direction, just slower than I would have wanted.
I don’t appear to have anything ‘nasty’ lurking as the numerous scans would definitely have found it.
The NHS is wonderful - my GP’s surgery have been incredible as have local NHS Trusts - both in North Lincolnshire and Hull. Our local trusts have sometimes been, rightly (sometimes by me), criticised but this time they’ve got it right.
Across the world there are incredible people who are willing to share their experiences and learning via social media to help others in the same or worse situations. Truly the kindness of strangers.
Health care professionals are listening to us Long Haulers - and when the history of the pandemic is written the experiences of unwilling Long Covid pathfinder patients will be as valid as all the high tech medical research.
Finally - this is going to take time and patience. I’ve never had the latter and at my age I’m not sure how much of the former I’ll have. But - I always need a plan so I’ve decided to give it until September 2022 before I make the call as to whether this is a permanent disability and make any necessary lifestyle changes. I’ve not wanted to apply for a Blue Badge - partly because I can’t face the ‘is this a long term or permanent condition?’, ‘we won’t know until you’ve had it for the long term or permanently’ conversation and setting this timeframe allows me to postpone that step.
My self imposed deadline is over 500 days away so maybe that will help me learn patience - if it isn’t the one-way, non-stop road to improvement, a day or so standing still or going backwards half a step won’t matter so much in the longer term.
The helpers & resources
First of all my family have been amazing - my husband has taken on the role of carer and I’m not sure how I’d have managed if I lived along. We’ll draw a veil over the wheelchair pushing! My kids and grandkids also keep me going.
Videos on YouTube from
@PhysiosForME @GedMezinger
have restored my sanity when PEM and the whole range of Long Covid symptoms seemed baffling.
Although aimed at fellow Physios, the podcasts from @LongCovidPhysio have been incredibly helpful. The one with Kelly who articulated how LC has robbed her of her identity was definitely the right one at the right time for me.
https://www.facebook.com/groups/longcovid/ This group was the first one I contacted and has provided help, support and quite a bit of laughter along the way. Absolutely invaluable - I hope their role and that of other social media groups is fully recognised when the history of the pandemic is put together.
Long Covid Twitter has been incredible - support on dark days, humour to get through other days and so much sharing of information - between healthcare professionals and Long Haulers.
The ME/CFS community have also been supportive - given that they have endured years of misdiagnosis, gaslighting and worse they have generously provided help and support with regard to shared symptoms. I hope that the huge push of international funding for research into Long Covid provides answers for all similar medical conditions.
People who have had other conditions or injuries that produce the same symptoms have also been generous with tips for coping - both with the physical and emotional elements.
The Twitter Long Haulers are the only people I would want to share this with- I hope none of us “enjoy” a second Covid anniversary, but I will always treasure your support.
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