w/c 24th 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 29th Feb / 1st 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 9th 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 9th March is the beginning of my Covid-like symptoms, so I am counting from here)
15th 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 16th 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.
24th 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 30th March – symptoms continue to gradually worsen, very slow descent though.
2nd 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.
4th 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.
5th 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: 6th 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.
15th April – feeling well enough to do a light 10K walk with family. Symptoms lightening a little. Condition improving slowly.
DAY 42: 19th 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
20th April – return to work
21st April – by afternoon, all symptoms have returned at a severe level.
22nd 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.
DAY 50: 27th 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 April). 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). Signed off work for May.
28th April – symptoms persist, chest pain easing slightly by end of day, all vitals normal SATs of 97 / 98. Resting in bed.
29th 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)
30th 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.
2nd 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).
6th 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: 7th 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”
8th 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.
9th 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.
11th 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: 12th 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.
13th 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.
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 and I feel dizzy on standing. SATs are quite low around 94% but also 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.
29th 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.
3rd 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.
5th 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 3rd. 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 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 15th) 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 – 6th 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 30th 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 11th 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
13th 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.
14th 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.
17th 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. Doctor also prescribed olive oil drops to see if that has an impact on the tinnitus that 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. General health pretty good this week.
22nd 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 though.
24th 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 now when I would expect to get tired. 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.
5th 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 – 8th 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.