Living with Long Covid

w/c 24^th February – extremely heavy cold, extraordinary amount of mucus, extreme fatigue, headaches. Never had a cold like this. Worked the full week and then spent weekend of 29^th Feb / 1^st March in bed recovering, (quite unusual for me). I haven’t really felt well since this week. (NB some doctors I have spoken to assume that this was the start of Covid)

w/c 9^th March – continuing to feel unwell, but with new symptoms – really unusual fatigue on exercise, background headache, general feeling of being under the weather. (NB Most doctors I have spoken to assume that 9^th March is the beginning of my Covid-like symptoms, so I am counting from here)

15^th March – undertook 15K walk with friends. Was feeling unwell enough to consider cancelling the walk. Didn’t cancel, went ahead with walk. Background fatigue, washed out, irritation in throat, slight cough, slight pressure in chest. No fever, no persistent cough. No suspicion of Covid at this stage, based upon NHS111 e-assessment and medical advice from NHS111 website which lists fever, cough and traveling back from Covid zone (Italy / China) as key indicators (which are all NO for me)

w/c 16^th March – felt well enough to do some moderate HIIT exercise but unusually fatigued afterwards. Felt unwell a couple of days in this week. Working from home by now.

DAY 15 – 23rd March – national “lockdown begins”. Still feeling unwell, but no real specific symptoms other than fatigue, irritation in throat and slight cough, and low-level headache. Continuing to work from home.

24^th March – commented to work colleague about taking a turn for the worse – noted shortness of breath, fatigue, chest pain / pressure and nightmares. Concerning, but not at a level to require sick leave.

w/c 30^th March – symptoms continue to gradually worsen, very slow descent though.

2^nd April – Symptoms severe enough throughout this week to take sick leave today. Shortness of breath, insomnia, bad chest / sternum pain, pressure in chest, headaches, anxiety, inability to concentrate, or speak for long periods without getting breathless. Speak to NHS 111 doctor who advises monitoring the situation. Suspects Covid-19. Instructed to isolate. Now resting in bed.

4^th April – Symptoms severe enough to request SATS monitor from friend. Insomnia kicking in, headaches worsen, chest pain, claustrophobia, anxiety, tightening band around chest, shortness of breath / breathlessness. Horrible chills and uncontrollable shaking at night. No fever, no cough. Resting in bed.

5^th April – SATs unit received, first readings are encouraging. SpO2 consistently around 97 / 98 resting heart rate around 60 – 70. Symptoms persist. While I feel awful and the symptoms are gradually worsening, knowing that there is enough oxygen in my body is a HUGE relief.

DAY 29: 6^th April – Woke out of a suffocating nightmare around 01:00hrs realising I couldn’t actually breathe properly. Decide to call NHS 111 again, and symptoms worsen on call. NHS doctor suspects worsening Covid-19 so ambulance is called due to worsening chest pain and shortness of breath. Paramedic arrives at 02:30hrs and carries out seven-point assessment;

- ECG OK (NB revealed very benign incomplete right block branch)
- glucose of 5.9 – OK
- stethoscope – no indication of lung infection or heart murmurs,
- SATs 98, – OK
- Temperature 36.5C, – OK
- HR within normal range,
- Blood Pressure 109/77 sitting and 131/78 standing – OK

Paramedic concludes moderate to severe Covid-19 (NB but no actual swab test carried out). Advised a 6 – 8 week recovery likely. Advised to contact NHS111 if symptoms deteriorate (I feel foolish having called out an ambulance, but the paramedic is very reassuring and supportive, and tells me I did the right thing). Symptoms persist throughout following week but day on day improvements noted. Mild night sweats begin, mild insomnia persists, but sleeping improving and overall well-being improves.

15^th April – feeling well enough to do a light 10K walk with family. Symptoms lightening a little. Condition improving slowly.

DAY 42: 19^th April – still feel unwell, but well enough to do a light 10K bike ride with the family. No repercussions. Chest pain very mild, breathing improved, claustrophobia and anxiety reduced, headaches reduced. Sleeping well. Decide to go back to work

20^th April – return to work

21^st April – by afternoon, all symptoms have returned at a severe level.

22^nd April – take sick leave from work. Chest / Sternum pain sharper, breathing restricted, heavy headache at back of head, insomnia, anxiety, claustrophobia, extreme fatigue, pins and needles and weird joint pain in fingers (new symptoms). SATS and temperature normal – 97 / 98 and 36.5C respectively. Resting in bed. Sleep apnoea is an issue.

DAY 50: 27^th April – symptoms persist, breathing becoming harder, still off work, call local GP surgery for advice. Chest pain predominantly on sternum and left side. Request X-Ray, ECG and blood tests. Declined. Prescribed Salbutamol inhaler, ibuprofen (gel rub) and amoxicillin through telephone appointment. Advised again by GP that recovery will likely be 6 – 8 weeks from first wave of severe symptoms (which were assumed to be at the beginning of March). Begin course of Amoxicillin in case of secondary bacterial infection. Take inhaler, little impact, other than making me feel shaky and weird. Resting in bed. Ibuprofen gel rub seems to have little impact. Begin taking Vitamin D (25mcg) for immune system (not suggested by doctor, but a friend who is an A&E doctor). Sleep apnoea like symptom persists. Horrible symptom. Signed off work for May.

28^th April – symptoms persist, chest pain easing slightly by end of day, all vitals normal SATs of 97 / 98. Resting in bed.

29^th April – symptoms easing a little, chest pain easing off, breathing clearer, irritation in throat and chest relieving, headache reducing. Claustrophobia and anxiety reducing, still suffering extreme fatigue and insomnia. All vitals within acceptable range (SATs 97 – 98, temperature 36.5 – 37). Is Amoxicillin working? (surprised at this as Doctor said this would only work if there was a secondary bacterial infection, which she strongly doubted due to the continued absence of fever)

30^th April – night chills and sweats, some awakening in the night, but a decent night sleep for once. Feel washed out today, extreme fatigue, some minor chest pain, although this is improving. Breathing not as clear as yesterday but still better than it has been – claustrophobia and anxiety reducing as a result. Headache reducing. Direction of travel is reasonable, hope this continues. Discussion with GP, feeding back on progress with Amoxicillin. Doctor warned to look out for chest pain that gets worse on breathing (clots / Pulmonary Embolism), worsening cough / fever and breathlessness (plus descent in SATs readings)

01 May – heavy night sweats, but relatively unbroken nights sleep, woke up feeling slightly better. Chest pain reduced, breathing slightly clearer, anxiety and claustrophobia are lessening. Headache has gone (first headache free day since late Feb). Direction of travel is reasonable.

2^nd May – relapse overnight, chest pain returned quite severely, shortness of breath acute again. All stats (temp, HR, SpO2) are OK. Requested telephone appointment with doctor. Got a clinic appointment at local Covid clinic (did not know there is one? Why have I not been previously advised of this?). Doctor carried out variety of tests including stethoscope for heart and lungs, heart rate, SATs, BP and other physical checks. All seemed to be OK (although SATs unusually low around 94% – 95%, which is strange given every reading I have taken at home is 96% – 99%). Advice from Doctor is that this is recovering Covid-19 and to readjust recovery expectations from weeks to months. Frustrating, but very pleased that we are talking about recovery now (even though it does not feel like I am recovering).

6^th May – significant improvements in symptoms following an incredibly deep sleep (one of the deepest nights sleep I have had in years, like being under anaesthetic)

Day 60: 7^th May – continued recovery, send a message to a friend that this sudden reduction in symptoms is “like coming out from underneath a heavy, dusty, suffocating old rug, blinking into glorious fresh air and bright sunlight”

8^th May – relapse; burning sensation returns to sternum and lungs, pain in chest, shortness of breath and breathlessness. Extreme fatigue. Pain in chest is predominantly left side, seems to move around, plus weird cramps in chest. New symptoms with stomach cramps, stomach pain. Not had this before. No clear catalyst for relapse. Incredibly frustrating and concerning. I read a fascinating article by Professor Garner from the Liverpool school of Tropical Health (For the past 7 weeks I have been through a roller-coaster) and discover that there are a significant minority of people going through exactly the same experience as me. I find at least two facebook groups with thousands of people sharing their stories. This is weirdly reassuring.

9^th May – symptoms continue. Determined to get some fresh air and exercise, able to walk about 5K with family but feel giddy throughout and very tired.

11^th May – symptoms persist. Stomach cramps reducing slightly. Use Voltarol gel rub on chest / sternum to see if there is an impact on chest pain. Insomnia returns at night, difficult to fall asleep, despite feeling exhausted.

Day 65: 12^th May – woken up and chest pain has reduced, but breathing is still difficult. Feeling of claustrophobia has lessened. Is this as a result of using Voltarol? Still feel groggy, unwell, tired, claustrophobic. Have tried taking over the counter anti-histamine to see if that helps. Still taking Vitamin D. At a loss for what to do next.

13^th May – woke up feeling really awful. Chest pain returned, new symptom of very loud tinnitus, shortness of breath, claustrophobic. Another new symptom appears, a very concerning pain, like lung cramps that get worse on breathing, only very short lived but quite frightening. I contact GP who refers me to GP surgery who refers me to the COVID Clinic who refers me to hospital. Clots / Pulmonary Embolism are the main concern. By 13:00 I am sitting in a hospital ward. The ward I am in is full of people with respiratory problems. I realise I am in relatively good shape. I spend a full half day from 13:00 to 19:00 at the hospital with the following tests and results

Full blood (red and white) – all within normal range
Renal / Liver function – all normal
Troponin – 2 (Good)
D-Dimer – 131 (Good)
C-Reactive Protein (CRP) – 0.5 (Good)
X-Ray – Clear
ECG – Good
COVID Swab test (nasal and throat) – negative (strange test to conduct this one, given time that has elapsed since onset of symptoms. Would have thought anti-body test would have been more appropriate)
BP – 111/71 (ideal)
SATs – 99% (good)
Temperature – 36.6C (normal)

The consultant concludes that I have probably had Covid and that I am now in a Post Viral Syndrome phase (like ME or Chronic Fatigue Syndrome). Told to go home, be reassured and rest. Told to expect long haul recovery. She wont be drawn on what this means.

15th May: feeling slightly better today. Called GP to discuss test outcomes. Looking at test results he also concurred with hospital conclusion. He also diagnosed chest pain as severe Costochondritis, apparently a common secondary infection following Covid-19 or other viruses. Never heard of this. Doctor also advised rest, recovery and advised to expect long recovery period.

DAY 69 – 16th May: Woke up today feeling slightly better.

19th May – Shortness of breath persists, decide to do postural drainage, steam inhalation and percussion therapy, morning and evening.

20th May – After a few days of improvement, the insomnia is creeping back again. Waking at 03:00hrs due to shortness of breath and then unable to get back to sleep due to adrenaline surge. Received confirmation in the post of negative Covid-19 test. Was expecting nothing else.

21st May – Bad relapse, pain in chest is back along with compression feeling. Shortness of breath is back to April levels. Fatigue is bad, unable to do much, other than simple tasks around house.

22nd May – Shortness of breath is much worse, probably the worst it has been, chest pain has eased slightly, but I now feel completely whacked. Attempt a short walk to get some sunshine but it wipes me out. By evening headache and tinnitus are very disruptive and shortness of breath is making me feel anxious and claustrophobic. My heart is pounding fast (80 – 90BPM) and I feel dizzy on standing. SATs are quite low around 94% but also temporarily going down to 90% – 91% which is a concern as this is the first time they have dropped below 95% (could be the new monitor?). Temperature is normal and blood pressure is in the ideal range. By night time I feel a mixture of extreme jet lag, altitude sickness and glandular fever. I am really concerned about what is happening.

23rd May – Sleep the whole night in an almost unconscious state and awake feeling incredibly well. Breathing is clearer, energy has returned, no headache, minor chest pain. Only tinnitus and pins and needles remains. Breathing deteriorates later in the day, but not as bad as yesterday.

24th May – Feeling much better again. Breathing is clearer. Compression and pain in chest is only minor. Still only tinnitus and pins and needles remain. Headaches gone.

Day 80 – 27th May – Now on fourth day of feeling better. So much more energy, able to complete normal tasks around house, and tolerating short bike rides, short walks and mild to moderate gardening. Able to notice when my body wants me to stop and taking regular rests is helping loads. Have started drinking Lucozade to see if electrolytes help. Still taking Vit E, Cod Liver Oil, Vit D and Evening Primrose supplements. Shortness of breath and chest pain is still there but so much more in the background than previously. Some arthritic pain in the fingers. This could be the last mile. Have received antibody test in the post, but UKs MHRA has just ordered suspension of private testing due to question marks about claims on accuracy and finger prick methodology. Have binned test and will wait for NHS mass roll out.

29^th May – Direction of travel is still good. Some insomnia at night, generally waking around 04:00 due to shortness of breath, adrenaline surge kicks in. Sometimes able to fall back to sleep again around 06:30. Pain in chest has returned following light activity in the park yesterday. SATs OK around 94% – 95% (on the new monitor). Still a little light headed on movement and bending over, and tinnitus is at annoying levels. Still shortness of breath persists, struggle to get a decent breath, but without the horrendous chest compression of previous weeks this doesn’t seem quite as terrifying. Some arthritic pain in fingers. Hold a conversation with Occupational Health at work. We agree a phased return to work plan – 4 hours a day for the first week, with Wednesday’s off as a buffer, with gradual hourly increases over the month of June each week. I am a little nervous as I am walking straight back into a change process, and 50% job losses. I know that cognitive as well as physical exertion can cause relapses.

3^rd June – really positive progress, 11 full days of minor symptoms. I am taking this as a victory. Minor chest pain, minor shortness of breath, some dizziness, and annoying tinnitus plus fatigue, but all in all really positive. Energy and mood is generally good. New symptoms are appearing on the Corona Carousel – Gastro issues are now coming in. Nausea, bloating, heartburn and stomach cramps. Fairly mild but noticeable on a day to day basis. Insomnia persists, but getting around 4hrs of sleep per night which is just about enough. Some arthritic pain in fingers. Have noticed a few Covid Brain Fog moments at work, but colleagues are thankfully understanding. Did some heavy lifting in the garden today. Nice to be outside and returning to physical labour.

5^th June – minor relapse, with return of chest pain and shortness of breath / difficulty breathing. This is not unsurprising given the return to work and heavy lifting carried out on Wednesday 3^rd. Nothing too major though, and by the evening I am starting to feel OK again. Relapses appear to be getting spread further apart, and when they do occur, the symptoms are relatively mild. This is all very positive and I am taking this as a victory. Gastro issues are problematic. Have started taking Magnesium and Turmeric drinks to see if this has an impact on symptoms. I cannot find potassium on the shop shelves which is frustrating as this is meant to help with breathing. Had an excellent conversation with a supportive doctor today who has prescribed Zolpidem for the insomnia for 7 days (although I won’t be taking it unless necessary), plus Gaviscon liquid for the gastro issues. He has also booked me in for an antibody test (June 15^th) plus loads of follow up bloodwork. Depending on the results of the bloodwork he may also ask for a follow up X-Ray. Spoke to a work colleague who suffered ME/CFS following bouts of malaria and then dengue whilst working in Sierra Leone. His symptoms are scarily similar, including patterns of relapse and post exercise malaise and he has been left with chronic arthritis in his hands and feet. It has taken him three years to recover.

DAY 90, week 14 – 6^th June – Woken feeling good today. Annoying gastro issues persists, but Gaviscon seems to be working reasonably well and I have plenty of energy and mood is positive. Quick 15min bike ride this morning, HR reached 120BPM which is relatively high for the distance and speed, but no repercussions yet. Followed this with sourdough bread and pancake baking. Energy remains high. Tinnitus is at annoying levels and arthritic pain in fingers persists. Overall I am pleased with progress. The 30^th June goal – a 10K bike ride followed by a pint of beer (which will be my first since 08 March) – is still looking very doable.

Day 95 11^th June – pretty decent progress over this week. Have been able to get rid of GI issues through mainlining of Gaviscon Dual Action and Rennies, which is a great relief. Annoying pins and needles and tinnitus remain, as does some insomnia and the usual bedfellows of difficulty breathing and chest pain. These are largely in the background though. Have been able to apply a couple of coats of paint to the shed and had long work days and some physical activity, without much in the way of relapse so very pleased

13^th June – woken in the night with chest pain, difficulty breathing, night sweats and general feeling of being unwell, including some pretty severe dizziness. This fits into the pattern of 8 – 10 good days followed by a relapse. Based on previous experience I expect this to resolve by tomorrow evening.

14^th June – relapse reducing by evening as predicted. Have been pretty active throughout the day despite feeling very unwell, and by evening I am feeling better again.

Day 100 – week 15 – 16 June; This feels like a major milestone, to reach 100 days. Chest pain and difficulty breathing have been permanent features since the beginning and I am reflecting that this is having an impact on my mental health. Living in fear for so many months may have some repercussions, whether now or further down the line and I will need to look out for that. More positively I was pleased to have blood and antibody tests yesterday and will await the results tomorrow. I am hoping I can take vitamin supplements which will resolve the breathing, pins and needles and tinnitus. Failing that I will push for a CT scan to get more granularity on what is happening in the lungs. Otherwise I have learnt this is just going to be about time. I am hugely grateful that I am in a relatively positive situation. I am back to work, I can do everything I did before (except the HIIT exercise, weights and sports) the OK days outnumber the relapse days, I am back on my bike, I have energy to converse with friends and colleagues. And I don’t know whether this is because I have learnt to live with this or not, but the symptoms no longer dominate my every third thought. The symptoms are there, as a separate part of me, and they just need to be dealt with, but they no longer define or limit me in the way they have done previously. I can see recovery, it will take time, but I am grateful for that.

17^th June: Antibody test back negative, bloods all within acceptable range except potassium (3.1 (range of 3.5 – 5) so doctor has suggested eating lots of bananas and oranges to help with that. The antibody result was not surprising, and I was quite ready for it. It’s been harder telling everyone else (thankfully I limited the amount of people I told for this very reason) as testing vagaries related to CV19 are still not well understood. From what I understand there are four potential reasons for this result

I never had CV19 (possible but unlikely)
This was a false negative (some estimates suggest the test is 70% accurate) (possible but unlikely)
My body led with a T-Cell response (some estimates suggest that 90% of CV19 sufferers will respond this way) (most likely)
I had antibodies but they were so weak that they dispersed at the point of testing (possible)

Doctor also prescribed olive oil drops to see if that has an impact on the tinnitus which has become really annoying. Most importantly she also agrees to refer me on for a CT scan and further blood work, including minerals, vitamins and thyroid. This is great, and will represent the final set of tests that I will pursue for the time being. General health pretty good this week.

22^nd June: Felt really good all weekend and decided to cycle to the hospital for the CT scan. This involved a pretty steep ascent on the way home. I managed it fine and it felt great to get the heart rate elevated. Unfortunately, I felt this in my lungs for a couple of days after and it triggered a small relapse in the form of chest tightness and difficulty breathing for 24hrs. The relapses are much more manageable when they come.

24^th June; Still feeling groggy, not helped by return of insomnia and hot weather, but still well enough to paint an outside wall, the remainder of the shed and do some pretty heavy duty lifting of flagstones and re-turfing. Felt good at the end of the day having done some manual labour and getting the body moving

Day 110 – end of week 16 – 26th June: Tinnitus still with me, but my breathing has improved (although I still have difficulty catching that deep breath) and there is a definite reduction in chest pain so that it is barely noticeable on a day to day basis. Pins and needles only with me when I sit in one position for long periods and even then only in the fingers and hands. Insomnia now every third night. I am back to work full time. The extreme fatigue has gone, I only get tired when the level of exertion that day warrants it. All of this is really positive. Will receive blood test results and CT scan results in the next 7 – 10 days. This will mark the end of my journey with investigative tests. Feeling good, going for a bike ride now.

28th June – lungs have felt raw from the bike ride for two days, fatigue has returned and chest pain is back again. Tinnitus, aching joints and pins and needles are still there. Return of insomnia for the past two nights. It was great to be back on the bike on the Friday, but perhaps it was too much? Am noticing slight brain fog, struggling to find the right words, forgetful. Could be lack of sleep?

31 June – have been doing moderate gardening for a couple of weeks now, with no real payback so decide to undertake a re-turfing, graveling and flagstone laying project that has been pending for months. This requires some heavy lifting. It feels fabulous to spend the day doing this, and the weather is good.

01 July – Severe pain in chest is back and breathing is difficult. All symptoms back with a bang. The previous days manual labour has caused a nasty relapse.

5^th July – Insomnia is back for the past three nights, pain in chest is back with a vengeance, predominantly on the left-hand side, but also now noticeable under the rib cage and at the sides. Difficulty breathing is back. I am also feeling extremely fatigued for the past three days and find simple things quite difficult. I feel really unwell, very flu like symptoms, but no fever. Slight improvement in tinnitus come the evening. Perhaps olive oil drops are working? Brain fog is still noticeable.

Day 122 – 8^th July – chest pain is reducing slightly, not as bad as previous days but much worse than it has been since mid-May. Insomnia still persists, finding it hard to fall asleep now which has not really been an issue previously (previously it has been waking up around 04:00 and finding it impossible to get back to sleep). Difficulty breathing is still there. Tinnitus is slightly better of an evening, but still persistent in the background. Pins and needles residing a little. Tried doing some light sawing today, to install water butt and connector kit, and this caused me to feel slightly out of breath. Really unusual. Other activities (such as climbing stairs, cooking etc) are all fine, so is this deconditioning after 4 months of inactivity? Pain in back and chest.

Got results back from Doctor today for various tests. All good, including nothing on the CT scan which is a relief (including no PE, no lung clots, no thoracic lymph nodes, normal upper abdomen, no bone lesions, no fibrosis)

HBAIC (Diabetes) (34)
Vitamin D (86)
Folate (10.7)
B12 (317)
TSH (thyroid) 1.57
Kidney Function EGSR (Normal)
Calcium (2.25)
Sodium (144)
Potassium (3.9)
Liver function (46)
Alkaline Phosphatase (Normal)
Albumen Protein (liver) (Normal)
Haemoglobin (141)
White Blood Cells (5.78)

Have agreed with doctor to undertake another antibody test, and to seek referral for lung function / spirometry test once clinics have this service back up and running. Will also look into referral to new NHS Covid service once up and running at the end of this month. Will also have a follow up conversation in one months-time regarding exploring the connection between exertion and relapse, possible disconnect between increased heart rate and low blood pressure and consider possibility of dysautonomia. Will try Salbutamol inhaler again (previous use made no difference to symptoms). In the meantime, I am going to try and learn to breathe again – doctor has sent through a breathing leaflet.

I feel dreadful and yet medically, on all counts, and in every test I have had done (and there have been a lot), I am fine and healthy. This illness, whatever it is, is like a poltergeist; I can really feel it, and yet it is not there; it is incredibly disruptive and worrisome and yet I cannot see it. And when I tell people about it, there is scepticism in their countenance.

Day 136 – July 22^nd

The last fortnight has been up and down emotionally and physically. Some good days and some bad days. I went camping at the weekend. I was extremely nervous before going because of the physical exertion required, the risk of fire-smoke getting into my lungs and the danger of damp, cold and wet air at night. But I felt that on balance I had to get out for my mental health as I have pretty much been in my house for 4 months now and starting to go a bit bonkers. It was a fabulous experience to be out in the fresh air and I came back on the Sunday feeling good and energised. Today though I have woken up feeling down and unwell again. This was not helped by having to take a quick bike ride into town for an acupuncture appointment. Unfortunately, it was the only way to get there. It is a 5K round trip and does involve a steep hill (which I walked up) but I am pretty sure that, with the effort of the camping trip, this has sparked a mini-relapse.

July 26^th – Feeling a little better, recovering from the mini-relapse. Well enough to go for a big picnic in the park with school parents and kids. Tiring but enjoyable day. Tinnitus, fatigue, chest pain, difficulty breathing, joint pain in the hands all persist. Insomnia is improving however. Diaphragm release techniques are bringing some relief to the chest tightness / difficulty breathing.

July 28^th – first acupuncture session. Interesting, although no real immediate feeling of relief

August 1^st – Camping weekend in Wales. Tough week at work followed by a 10hr round road trip. It’s cold and wet on arrival and our airbed collapses in the night with me waking up on the cold hard floor. There can only be one outcome of this trip. The days on the beach are lovely, but the kids demand to play football and it is becoming unbearable to keep turning them down. It is nice to play, and I feel good while playing but I am sure there will be consequences to this.

August 4^th – Second acupuncture visit. No immediate relief.

August 5^th – in the middle of a mini-relapse caused by the camping trip. Lungs are hot and breathing is compromised. Wake up burning in the night (but no fever) and unable to get back to sleep. I am hoping I improve in time for the next camping trip. Diaphragm release techniques offer relief from the difficulty breathing.

August 10^th – Camping trip to North Norfolk. Weather is exceptional and the sea air is fresh and clean and the water warm enough to swim in. I am reluctant initially but decide to bite the bullet. It feels amazing to be in the cold, fresh water and I have a brilliant afternoon with the kids.

August 12^th – feeling incredible after a few glorious, sunny and relaxing days on the beach. This is as close to feeling normal as I have come since early March. It is a fantastic feeling. Tinnitus is dissipating, I am sleeping well, waking up refreshed, chest pain is minimal, breathing is strong, joint pain is reduced.

August 14^th – Have blood taken for second antibody test (first was negative). Will find out results on 24^th August.

August 15^h – went on a 7K walk with the family. Felt tired at the end of it but it went well.

August 17^th – still riding the mini-break high. Tinnitus has reduced, sleeping really well now, breathing is strong, joint pain is reduced, mild chest pain / compression has reduced. Fatigue is an issue, but this is a “just-returned-from-camping” fatigue, rather than the horrible jet lag / altitude sickness / hangover fatigue of previously. Is this overall improvement related to the acupuncture? Is this just circumstance? Is there anything to be gleaned from fresh sea air, the sea etc? Have been for a 6K bike ride today to pick up some items from the shops. Will be interesting to see the impact in 48hrs time. Six months without exercise and muscle atrophy is becoming an issue for me now. My trousers are falling off my hips and hanging where my butt muscles used to be. Not happy about this.

Looking back at my journey I am feeling pleased as to where I am now. I can do most normal day to day activities now without consequence. I have been able to go camping three times in the past 6 weeks, two trips of which involved me driving at least 10hrs. I am working full weeks since the beginning of June. I am able to go on walks and the difficulty breathing seems to be improving and responds well to diaphragm release techniques prescribed by my acupuncturist. I am looking at this now as a period of consolidation and in the new year I can begin to think about a return to gentle exercise / weights and cardio training.

August 18^th – excellent practice pointer in the British Medical Journal on treatment for post acute Covid in primary care settings. Set up a conversation with my doctor to discuss the recommendations, including referral for patients experiencing persistent symptoms.

August 24^th – Second antibody test negative. Awaiting results back from T-Cell trials.

Day 180 – September 4^th – Overall positive few weeks with a plateauing of symptoms (between 2 and 3, trending toward 3 on the six stages of recovery), but I have just ridden a brief 48hr relapse sparked by a poor diet (what is it with the food in British sea side towns? So much beige!) and getting very cold following sea swimming during a min-break in Kent.

The relapse was light and brief with a return of chest pain, difficulty breathing and extreme fatigue. Feeling better today but noting that with winter coming up, it will be important to stay warm.

I have had my fourth acupuncture session and it seems to be yielding results. Or is my improvement coincidental? I have also tried shiatsu from a friend who is providing sessions pro-bono. Will persist with a few of these to see if they yield results. The first session was very beneficial. At the very least it was, like with the acupuncturist, good to speak to someone who has a different take on wellbeing. Perhaps this is because it is a more holistic approach than Western medicine which is fractured into specialisms and disciplines and frequently does not look at a system level – which is so important for an illness like Covid 19.

On the advice of both practitioners I have ordered some Symprove, liquid live bacteria, for my GI issues and will give that a go. Today I also received notification from my doctor that I have been referred for a consultation with a lung specialist who will conduct lung function tests in October, which I am really happy about. I have also been referred to a local NHS service to support chronic COVID sufferers and have a home visit from a therapist this afternoon. They suspect dysfunctional breathing. This referral is on the back of the BMJ article I shared. Such an excellent tool to have.

Current symptom status: tinnitus (persistent and constant but only mildly annoying) chest compression (mild but lurking), joint pain in hands and fingers (mild and only on significant exertion such as opening a jar), difficulty breathing (mild), brain fog (mild, but concerning nonetheless – struggle for words maybe five or six times a day, frequent but brief forgetfulness in every-day tasks, difficulty in concentrating), fatigue (moderate to severe, trending toward moderate). SATS around 95 – 96 (although the unit I use is calibrated low) and peak flow is consistently 700 which is good. BP is stable 110/70 and within excellent range. RHR is around 65 – 70 during the day and down to 55 – 65 in the evenings. All good and normal.

6 months since onset of symptoms – Day 185 – 9^th September

Today is something of a milestone and a pause for reflection. I am definitely getting better. In fact I am better, and have been for a number of weeks now, discounting minor (and very manageable) relapses. I have hit a plateau for about a month. This is super encouraging and suggests I am moving to stage three in Sarah Myhills recovery pattern. It is certainly a massive relief to move out of the draining boom-bust cycle of recovery and relapse.

Looking back, the early days in March, April and May were terrifying, the physical symptoms – particularly the crushing chest compression and difficulty breathing (The Covid Strangle as I have heard it accurately described) were like nothing I have ever faced before, even with some of the medieval tropical diseases I have picked up during my travels. The insomnia and fatigue were also a major challenge. I have been through sleepless months with two babies / toddlers but this was something else – harder, darker and with no positive feedback or reward that you sometimes get with babies.

The mental and emotional side of things have been dark too. There is something existentially challenging about being seriously unwell, and not having a clue from one day to the next what is going on, and what is going to happen next. The firewall around UK medical services in early March and April was petrifying. At times I felt cast alone in a small canoe in a dark and stormy ocean. I remember during one conversation with NHS111 being told to not call back unless I collapse with hypoxia. I still remember laughing bitterly as I hung up.

There is also something unnerving about no longer being able to trust western medicine, which has, for so many years, been able to provide certainty for me on those rare occasions when my body has failed. And there is something frightening about falling prey to a virus that does not discriminate, and that has left experienced doctors and nurses flailing around, helpless and as baffled as the patient.

And the mental gymnastics that have to be performed to keep shifting recovery expectations are exhausting. The narrative I have received from medical professionals has changed so many times – “you will be fine in a couple of weeks”, to “yeah sorry looks like you will be better in four to six weeks” and then “We are hearing that in some cases this can take three to six months to resolve” and more recently the shake of the head and the blank expression “We really don’t know much about this. In other similar illnesses it can take years to recover”.

Would it have been better to have heard this truth right at the beginning? It’s hard to say. The false peaks are as exhausting as the symptoms themselves. The key struggle was simply not knowing if I was actually ever going to feel like myself again. The question that went around and around in my head on those covid-wired insomnia nights was “Is this it? Is this now me?”

As referenced in the excellent resource pack from the RICOVR Unit at the Advanced Wellness Research Centre, being unwell is a job in itself and actually really hard work. Long haul covid sufferers do not fit into the usual linear recovery expectations of normal illnesses. It’s really hard to explain the boom-bust cycle to friends, colleagues and family. This is not helped by the calcified government line that this is a mild, flu-like illness. This is toxic and needs to change, and fast.

The impact of all of this can be physically and emotionally devastating. I still wake up frequently in the night, a consequence of the strangled shock of sleep apnoea I experienced back in April and May. I still have to tell my kids that I cannot go play football. I still cannot exercise. I still cannot breathe properly and spend most days in a state of hungover, altitude sickness. I still rely too heavily on my wife to pick up my slack. I am irritable and emotional. There is a joylessness to my existence that as a (previously) annoyingly optimistic personality, worries me. I mourn for the loss of my boundless energy. I have grieved for the limited life I have led over this half a year.

And yet there is so much to be grateful for. Looking back over the last few weeks of summer I have done pretty much everything I would have normally done – camping trips, messing about in the sea, long walks, getting back to football coaching and working in a job I enjoy. I am extremely grateful that I now feel well enough for these things.

The grief that I experienced through losing a central part of myself (the vibrancy, positivity, rude health and boundless energy) to this illness, is gradually subsiding to a new hope; that this plateau is the beginning of the building blocks to a full recovery; that the combination of eastern approaches – the acupuncture, the shiatsu, the work with the osteopath, the humming and breathing techniques – and advances in western medicines understanding of this virus will see much better days ahead.

The burglary analogy related to this virus feels very appropriate. For some people the virus was a violent break-in, where the burglar smashed windows, kicked in walls, trashed furniture and emptied draws. My heart goes out to all these people who still suffer terrifying physiological changes to their vital organs, months after the actual illness.

For myself I was witness to a break-in where the burglar took a few things and rearranged the furniture. It was devastating at the time, but its now time to move on and look to the future.

I can see it and feel it, there are much better days to come. I am stronger than I was. I feel better than I have done. I am feeling lighter, more optimistic. I have always believed that I would fully recover. Now I know I will.

Living with Long Covid

The Unwanted Guest

Chronology of an illness

Who am I?