Had a run of 3 good days, but just tried doing *some* of the things my lungs had allowed me to do over the weekend & over-did it by fixing the ball-cock in the toilet cistern! Lowered my guard; lungs are tight again (first time in 10 days) & I'm lightheaded. #PulmonaryEmbolism
2.5 hours later and my heartrate is still up at 100bpm. Been lying in bed ever since. All I did was take the lid off the cistern and adjust the ball-cock screw, then flush the toilet to check that it worked.
#PulmonaryEmbolism recovery update, as I enter my 9th week since #COVID19 onset. A week since my visit from the O.T. & I have more than doubled my daily activities. A mini trip out at lunchtime didn't go entirely to plan, but at least I did get out. 1 week to Lung Function Test.
60 days now since my initial #COVID19 symptoms and approaching 7 weeks since the resulting #PulmonaryEmbolism.
Just heard of someone local, younger than me, who had a similar experience, but wasn't as fortunate as I was; she died following her post-Covid blood clots.
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...Puts things into perspective 😑
Had phone call with #physiotherapist this afternoon. Main takeaways:
- Keep pacing the physical exertion
- Pause and lean if necessary
- Gradual incremental increase
At last I understand why basic arm/hand movements were enough to send me...
...lightheaded: muscles at the top of our chests assist with our breathing, so simple extra arm movements, such as I've repeatedly mentioned in this thread, can still quickly exhaust me.
My reduced mental capacity appears to be #COVID19-related.
1. On conserving energy during recovery from a debilitating viral illness such as #COVID19 and/or from #PulmonaryEmbolism, by #Planning (by week, by day, by task):
2. I have generally avoided the Boom-Bust Cycle over the last few weeks of recovery, but without strict instructions from my partner it would have been very easy, on a 'good day' to attempt to run before I could walk... #BoomBustCycle
3. I have become adept at #pacing myself over the last couple of months; it hasn't come easily to me, as I'm used to rushing through everyday activities. Rushing has been a habit. I've lost count of the number of family & friends who repeated the #PaceYourself mantra since Day 1.
Since Day 20 of my #COVID19/#PulmonaryEmbolism experience I've wondered why small arm movements caused rapid oxygen desaturation in my body, leading to severe lightheadedness.
7 weeks since my #COVID19-induced #PulmonaryEmbolism and, having worked-up to this point very gradually, I just headed the 250m down my road to sit by the River Dart for half an hour!
Carried a camping chair with me & rested every 50m there & back 😄
..I'm trying not to get too excited; previous 'big steps' have resulted in 'crashes' (my lungs tightening-up, heart issues & palpitations, & SpO2 levels dropping from the tiniest exertion).
But for the first time in 2022 I just got to the river under my own steam. Pretty elated!
Yes, I know how privileged I am to live in such a beautiful part of the World. Now I seem to have an approach that works, & with warmer, sunny days ahead, this should hopefully be a new beginning 🤞
Day 50 since my #PulmonaryEmbolism & awoke with seemingly boundless energy: that's the danger with PE recovery and indeed #LongCovid symptoms. Paced myself, but still did many things, the most difficult still involving my hands & arms! Putting on cushion covers was incredibly...
...challenging. Since that, I'm getting lightheaded within a few seconds of simple tasks, incl. chopping cucumber & using a spoon. Chest is now tight & SpO2 as measured by my #oximeter drops into low 80s with minor exertion; 93 at rest. With deep breathing, high 90s within 30s 👍
Interesting day. Spent much of this morning organising my phased return to teaching after Easter. This is my own choice, for various reasons, including sustained progress in my recovery and a hope that this will continue over the next two and a half weeks. By lunch time I was...
...exhausted. Whether it was the mental strain of a phone call and subsequent follow-up email, or perhaps the last few days of walking to the river caught-up with me, I'm not sure. Anyway, I slept-off the worst of it. But now my stamina is way down: just chopping garlic caused...
...a tight chest, lightheadedness, & my heart-pain to return. Checked my #oximeter and my SpO2 had plummeted into the 70s. The last time I had the heart pain was 3 days ago, after chopping cucumber - There's a pattern!
Recovery is fast - within 2 minutes - but I'll take it easy.
Still getting the occasional anonymous account/bot diving into my timeline saying the vaccine gave me my #PulmonaryEmbolism despite clear evidence to contrary 🤪
Update: Just a week ago, I was mostly bed-ridden. Then I started short daily walks; first in short 50m sections (using a camping chair!) and now using a combination of leaning and sitting every few metres to get about more. This week I have walked into and around two hospitals...
...#Torbay for a #LungFunctionTest and, today #Exeter's RD&E Hospital for an #Echocardiogram. Still exhausted each afternoon, but planning a slow phased return to my teaching after Easter.
Let's hope my test results identify 'recoverable' #PE conditions rather than #LongCovid 😑
...and I also note from the @IndependentSage briefing that I have been one of Tens Of Thousands of UK teachers off work due to #COVID19 in these two #Omicron waves. Such a burden on colleagues in school and a massive impact on our students.
I am not alone. Strangely consoling...
3000 steps before breakfast. Very slow plod along the River Dart at Dawn. Unthinkable a week ago, but pretty confident that this recovery is sustainable. My #oximeter has been invaluable for early-warning of #hypoxia before any symptoms begin.
This morning I've also used my #oximeter as an 'early warning' signaller of dipping SpO2 whilst hanging out the washing. 8 weeks on, my #PulmonaryEmbolism symptoms now seem to be mostly avoidable as long as I don't let my blood oxygen dip too low for too long. Dropped my guard...
...leaning against the garden fence just now, catching-up with my neighbour. Immediately afterwards checked my SpO2: low 50s. But recovery came within a minute from sitting down and breathing quite deeply.
The importance of #pacing remains uppermost in my mind; easily forgotten!
5000 steps today. Managing to walk further, with fewer rest-breaks - and they're becoming 'leans' more often than 'sits.'
Pushed myself a little this afternoon, as the Sun's out and there are plenty of benches and grass areas to sit down on. Made it across the river Dart to the @southdevonrly station. The café at the far (Rare Breeds Farm) end of the platform is a good place to aim for - next time!
Oops. Must listen to my body more carefully. Safely home now, but pushing-on to the steam railway station meant that my kilometre home just took 90 minutes 😯 Heart was racing, even from simply standing, & I was quickly lightheaded (SpO2 crashing). V. quick recovery & no pain 🤞
Heart pain returned this evening. After a reviving visit to @DartingtonTrust Gardens I'd rested all afternoon. The trigger was simply *setting foot outside* around 5pm. HR⬆️⬆️ SpO2⬇️⬇️.
Been added to a waiting list for a respiratory consultant appointment. Could wait a while 😡
Two days later and a successful 'there & back' 2km walk to Totnes Steam Railway station. 2500 steps: Progress! 60 days since my #PulmonaryEmbolism.
Rucksack on my back. Picnic rug for as many pit-stops as I need. Let's do this!
As might be expected following yesterday's Giant Leap (and too much housework this morning) today's attempted walk only reached as far as the garden gate. So, to celebrate my 9-week #Clotiversary I'll be soaking-up some rays instead.
Short riverside stroll with seal feeding and fish jumping at high tide. Met a few neighbours who'd wondered where I'd been for 11 weeks... #COVID19#PulmonaryEmbolism#CovidIsNotOver
Spent Easter Sunday morning doing jobs around the house as I'm now quite energised in the mornings. But then my SATs dropped and I had to lie down pretty much all afternoon. Frustrating 😑
Surprised to find reclining in a garden chair made my SpO2 worse. Wondering why this is...
...but managed a walk down to the river at Dusk, to watch two seals feasting on fish in the Spring High Tide.
Back on track. Two walks already today. 8000 steps and counting. Getting my heartrate up for sustained exercise at last - including on some slight hills. Feels good. #PulmonaryEmbolism#COVID19#Recovery
First day without any bed-rest in 11 weeks!
3rd walk of the day & have exceeded 9000 steps. Went all the way to Totnes weir without stopping and, to top it all, spent 20 mins watching two seals hunting.
SATs seem under control for 1st time since #PulmonaryEmbolism 9 weeks ago🤞
Bats! And a duck at dusk. Sound of a train passing through #Totnes.
Another wake-up call this morning.
I managed to walk 7km yesterday, but can I hang-up a few sheets and pillow cases on the clothes-line?
Reminding me of this advice from the physiotherapist re. muscles used for breathing:
80 days since #COVID19 symptoms began. Almost 10 weeks post-PE.
Now basic fitness is up, so experimented with a 'power walk' to town. Breathing deeply, as if on a run, managed to get over the Dart to Bridgetown, where staff at the #RiversideCafe remain fully masked 👍👍 #Totnes
Got to Steamer Quay #RiversideCafe again, but ended-up using the takeaway hatch. Hordes of unmasked tourists are waiting for the @DartmouthRR boat to arrive, with not a #facemask in sight - apart from the café staff in #FFP2 s.
Successful first drive - to work/school. Sorted a few things, incl. IT access.
I see from @dgurdasani1's @IndependentSage briefing just now that, back in Feb. '22, more than 1 in 3 people awaiting Consultant appointments had waited for over 12 weeks; so I guess I'll just push on!
Back at the #Paignton seaside for the first time since my #PulmonaryEmbolism happened 10 weeks ago. Strong easterly wind, so Surf's Up.
For the record, here at Goodrington you get 3 times as much ice-cream for your money, compared with #Totnes 🍦🍧
Strongly recommend getting hold of a pulse #oximeter if you catch #SARSCoV2.
As I've tweeted previously in this thread, it's been incredibly useful in many ways. Now 12 weeks on from initial #COVID19 symptoms, I'm mainly using my oximeter as an 'early warning' device... [1 of 3]
I'm now symptom-free first thing in the morning. Later, my #oximeter is useful for catching dropping #SATs *before* symptoms start: Its alarm sounds below 93% blood oxygen saturation; then I stop walking/physical exertion & lean forward (sitting or standing) & recover in seconds.
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Later in the day, with walking or other physical exertion, I get increasingly light-headed, my legs weaken & my arms start tingling. This doesn't happen until my Sp02 drops to around 60%, so the #oximeter lets me pre-empt any symptoms.
Prof. Todd Davenport emphasised a variety of approaches to managing my #LongCovid #PostExertionalMalaise symptoms. At the heart of my new understanding is the realisation that, for the past two years since my first Covid infection, I now have an ENERGY-LIMITING DISEASE.
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I have been using my @KiActiv
Smartwatch (provided to me for Free via @NHSDevon following my Long Covid and PEM diagnosis) for many months now, alongside the cost-free features of the @visible_health app. But I now understand how to use these in a more informed way...
It took my legs a few minutes to warm up this morning, but glad to report that long morning walks remain easy, in contrast to later in the day. #Totnes is waking up beautifully ☀️
5 miles walked this morning, with no adverse effects. Then strimmed & mowed a lawn. Great to not be worried about my heart and lungs as I got a real workout from the gardening. However, I'm mindful of the warnings of some with #LongCovid that I should continue to pace myself.
Day 3 of #Omicron symptoms was my worst so far, with fatigue & a very heavy head, alongside sneezing. My tight chest, feeling of reduced lung capacity and tickly lung sensation had subsided slightly, as did the coughing, that had become painful on Day 2 #Oximeter down to 96%...
...so I slept a lot on Day 3.
But now it's 1am on Day 4 and I feel full of life. Fatigue gone. No more headache. Slight wheeze still, Oximeter 96%; no appetite, but sense of smell and taste are fine.
Wonder whether the worst is over, as I'm double AZ-jabbed plus Pfizer-boosted?
I can't find evidence of people relapsing into worsening symptoms post-Day 3, but my lungs are my weakness... Am I good right now because I slept so much over the last 3 days?