I’ve had Long COVID (LC) since September 2020. Well, that’s when I noticed various changes and was told that it was all down to LC.
I decided to consult two of my cousins who are GPs. I shared how I was feeling and asked them if they had any ideas about what I was experiencing.
I explained the following:
- my loss of taste and smell returned to normal but this was followed by a change in how I experience food e.g. certain foods taste foul and I can’t liken it to anything but I can’t stomach the smell or taste of them
- that multiple things taste bitter
- I felt like parts of the body were producing a smell that I can’t describe but it’s strong and unpleasant
- that I can walk for 3 hours that includes hiking and not eat much without feeling deprived of energy or needing to eat
- that it takes ages to fall asleep
- I have vivid dreams
- I struggle to make decisions, retain stuff or remember things correctly
Being diagnosed with Long COVID (LC)
One of my cousins explained that there was a phenomenon that people are calling ‘Long COVID’. He said:
“It’s where a number of people seem to be getting ongoing symptoms for weeks and months after they’ve recovered from the initial infection. The symptoms often related to the initial symptoms they had during the acute infection. For example, if they lost taste/smell then they have ongoing issues with changed taste smell. If they had respiratory problems they had ongoing breathlessness. However, the main problem that people with long Covid talk about seems to be persistent tiredness, lethargy and aching. Sleep problems and poor concentration also seems to be fairly common.”
He continued to explain that they thought that the virus was triggering something similar to chronic fatigue syndrome in some people and that nobody really knows why yet.
Of course, it was too soon to know how long the symptoms might go on. Some of his patients who got COVID at the beginning had further (new) symptoms which resolved within 3 months but others still had ongoing symptoms after 6 months.
The NHS has set up a support website which has some further information
My other cousin said “Patients who have had COVID experience a vast array of weird symptoms similar to the ones youâ€™ve mentioned. This is known as â€˜Long COVIDâ€™ and can last for up to several months after the infection resolves.”
I started experiencing symptoms in September 2020.
I have been struggling to fall asleep since before September 2020. I’ve been having vivid dreams and I wake up feeling tired because I don’t stay asleep for long and I don’t get into a deep, restful sleep either.
I read a few articles about it in February 2021 and found them refreshingly positive and reassuring. I read stories about what others were experiencing, how it was affecting them, how they were trying to manage it and so on. Suddenly, I didn’t feel alone, I knew I wasn’t imagining it and these articles helped me make sense of and articulate what I was going through.
One Doctor talks about taking an antihistamine to help him sleep, so I did a bit of investigating and started taking drowsy effect antihistamines before going to sleep. I don’t know if they helped or not, but the sleep tracker on the Oura ring, which measures deep sleep, REM sleep, light sleep, sleep timing, and heart rate kept telling me that my overall sleep quality was awful and that I needed to ‘pay attention’
I tried using lavender oil which didn’t seem to work and have now started combining taking an antihistamine with using an oil blend by doTERRA. It definitely relaxes me and the sleep is better but it’s still not good.
My appetite has been interesting! There’s been a combination of the following:
- I’ve been able to exert myself without needing or wanting to eat
- After taking the vaccine, for a couple of weeks, I would suddenly feel famished without any notice, on a daily basis, (if not more) and would then need to eat ASAP
- I’ve only been able to eat little and often
Usually, when people see me, it’s on a good day. I’ve been told that I look normal and they can’t tell that I’m enduring anything etc.
I’ve heard others talking about LC and saying that it’s in the mind and caused by the hype in the media. I hadn’t heard about LC when I was told that I had it, nor had I been following the news about COVID, as I was fed up of hearing about it, so I can be sure that wasn’t the case with me.
Someone else told me that the symptoms I had when I had COVID and those I am experiencing due to LC, don’t sound like the flu. It isn’t the flu but how do you explain that to someone who believes that COVID is a strain of the flu and no big deal?
I’m not going to get someone to take a recording of me when I’m not having a good day, to prove how debilitating this condition can be and how it has reduced me to tears, made me freeze, unable to function, struggle to speak, unable to process things and more.
However, I’m fully aware that some people think it is like ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome) and that it’s not real. Apparently, medics have been known to say that ME stands for Might Exist. I was talking to someone in the family about CFS way before I had LC and she didn’t think twice before saying “it’s all in their head.”
Appearing consistent and trustworthy
I have discovered that I associate consistency with trust. If I am consistent, then it shows that I’m reliable and trustworthy. LC is making this impossible.
I clearly don’t have my s**t together on many days during the week. I start things and forget that I’ve started them. I forget what I’ve said and I don’t express myself well at all. This is all when I’m not having a good day and there are many of them each week.
There are noticeable inconsistencies too. It has come across as me seeming deceitful, which really bothers me! The intention isn’t to deceive anyone but I seem unable to process what I’m thinking and end up saying something that I really don’t mean. For example, I told someone that I needed to meet after a certain time so that I could meditate beforehand. However, that was the truth before LC, whereas now, I can’t meet before a certain time, simply because I can’t wake up at a time that will enable me to meet earlier. I didn’t even realise that my mind was talking about the me before LC, so when I was asked about it, I was really confused about why I said that when the truth was I couldn’t wake up early enough to meet at that time. So it seems that in some cases, my mind drives speech based on previous patterns, abilities and behaviour but these aren’t possible now and this leads to apparent deceit.
I’ve often thought ‘but you said…and it was so clear, how can you say that you didn’t mean it?’ Now I know that it’s possible to do this without the person having any malice, without them being aware of what’s happened and that it’s not as simple as ‘they’re stupid and don’t know what they’re saying.’ I know I’ve felt stupid but that’s a different issue.
A silver lining: it’s made me less judgemental, more forgiving and I’m less insistent about holding onto what people have said as I have a deeper appreciation for how speech and thoughts aren’t always aligned.
Being supported without the ego rearing its ugly head
It’s ironic. When I need the support, I’m really grateful for things being spelt out, being reminded about things and the ‘thinking load’ being reduced for me. However, when I’m my usual self, it feels really patronising and I’ve realised how my ego can play up. Such a contradiction!
I want my nearest and dearest to be aware of this and ask me questions to help remind me about anything and everything but when I’m having a good day, it feels patronising. How are they supposed to know when I need a reminder to turn the hob off and when I don’t? How do they know if I’m aware that I’ve put something in the microwave or not? How do they know if I heard something, acknowledged it and retained it or not?
I don’t envy anyone who’s going through this and by that, I am including the friends and family of those who are experiencing it. It’s made me appreciate those who are supporting me and realise how difficult it must be for them.
Comparing the current me to the previous me
I have recently realised that comparing the current me to the me before I caught COVID, is unfair, unrealistic and causes me pain. Why would I do that to myself? It’s resulted in me feeling like I’m a lesser, inferior version of myself. I need to stop doing that and be more accepting of the version of me that exists today.
It’s natural to compare but unhelpful.
Now you could say that I should assess, analyse, compare and motivate myself to be the old Heena again but for me, it’s not encouraging but deflating and quite sad.
I could compare my current self to how I was ten years ago, rather than, how I was just before getting COVID and I’m sure there’d be a lot to be thankful for. I’d realise how far I’ve come in ten years and appreciate how much I’ve changed as a person but I wasn’t doing that! I was comparing the Heena now to the Heena in 2018 and that felt disempowering and disappointing. So I’m trying to ease off and be kind to myself.
To move forward, I believe that I need to cultivate acceptance and equanimity, especially while this Karma plays out. I have faith that this is temporary but now I need to remember that and remind myself that acceptance isn’t a form of defeat but rather a way to recognise the baseline, be realistic and then grow from there.
Communication in every form has been tricky.
I remember talking to a friend who went into detail about something which was new to me. I felt overwhelmed and had to get off the phone. He understood because he has LC in a milder form himself.
I’ve been sent documents by email, opened them and thought “I can’t handle this” and closed the message.
I’ve had conversations with people and then have no recollection of it.
I remember talking to someone, suddenly being overcome by fatigue and not being able to listen, process or retain what was said. He said he could see that I was shutting down but thought it was because he was boring me.
When I’m struggling, I am unable to handle conversations that go back and forth. I guess it’s because it involves messages that are written or sent, which is followed by a gap before the conversation continues. All of this involves ‘carrying it’ until it’s ‘closed.’ When I use the term carrying, I mean remembering, recalling, replying and then applying all of this when the conversation changes direction and there’s a change of plan, for example. This mental tennis (discussed by Alex Howard, founder of The Optimum Health Clinic) is something I can’t cope with.
I am very aware of how my speech and thoughts are disjointed too. I can start a conversation and not share fully because I get distracted or suddenly feel like there’s too much to process and in effect, shut down.
I’ve had to come to terms with this without feeling bitter. I say this because whenever I’ve heard people use this phrase, they’ve been resentful or bitter about what they’ve had to come to terms with. I don’t want that for myself or anyone else. So I’ve tried to accept it, recognise it as being my current state, remind myself that everything is temporary, put things in place to help me cope with how I am now and hope that people understand that it’s not about them but rather me doing what I need to help me heal.
For as long as I can remember, I’ve been a fast thinker, I do things quickly and I have been told that I speak very fast too.
This is another thing that’s changed with LC. My speech is slower and sometimes muddled. For example, I’ll be thinking of two words, and without intention, I’ll combine them to make a new word and won’t be able to ‘unmuddle’ it and correct myself quickly, or at all.
I can’t think quickly whether this is related to my own internal thoughts, something I’m trying to express or information that I’m trying to hear and process.
Speaking of hearing, I started wondering if I had an issue with my hearing but have now realised that when I feel like I can’t hear what someone’s saying it’s more that I can’t process it or that I struggle to strip away the speed that the person’s speaking at or the accent that they might have or whether they mumble etc. All of these things were done without much effort before but now, each layer or activity makes it harder for me to ‘hear’ what’s being said.
This has been a big thorn in my side! I can’t get anywhere near the amount of stuff done compared to what I could do before. There are two main reasons for it. One reason is that my day is shorter because my sleep is so poor and to get a ‘good’ amount of poor sleep takes longer, which means I wake up later. The other reason is that during the day I experience spells of fatigue, brain fog, become overwhelmed and might get into a state of freezing/shutting down, during which I can’t do anything that requires a certain level of thinking.
Also, I recently realised that the template for my weekly plan had my working day beginning at 9:30 am. It used to be earlier but I changed it to 9:30 am because of LC. The thing is, after not sleeping well for over nine months, I’m currently unable to be up and ready to work by 9:30 am. I’m struggling to write what time my day has been starting recently. Simply put, I don’t like it.
Now, I don’t know if there was some sort of subconscious resistance to me changing the time on the template for my weekly plan again or if it didn’t occur to me because of my current disjointed thinking and inability to process information and see things that are quite obvious or if I had some sort of hope that I’d be able to wake up earlier and get going by that time. Either way, I was ending up starting each day with timings being wrong, activities being delayed, tasks not getting done because there weren’t enough hours and me feeling bad about myself.
Again, acceptance has been key. I’ve had to drop the stick that I use to beat myself up with. I’ve learned to expect less from myself without viewing myself as a lesser person and then feeling inferior.
Personality traits, organisation and consequences
I’m a bit of a perfectionist. Earlier, I mentioned that I’m used to having my s**t together, I’m usually on top of things, I get tasks done quickly, I think things through, I do a fair bit of research before making decisions, I’m punctual and generally function well.
Some examples of me not being my ‘usual’ (before Long COVID) self:
- I’ve ended up double-booking myself
- I’ve known that I was meeting someone but getting so muddled with the timings that I’m late
- I changed the account details for a payment and accepted that my credit rating will be impacted because I missed a payment when the fault was theirs. They were supposed to have taken the payment from the old account until the new Direct Debit was in place. I wouldn’t have accepted this before and would have realised that something wasn’t right much quicker than I did. Actually, I’m not even sure if I realised or just stumbled across this when asking how I could have prevented it from happening.
- Pushing myself when I’m feeling productive, overdoing it and then being unable to function
I’ve been snappy when I’ve felt strained. This could be for any of all of these reasons:
- I’m tired
- I feel foggy
- I feel pushed to speak more than I have to
- I’m forgetful and feel unsupported
- I feel like I’m being made to listen to more than I need to
- I sense that I’m being judged for not doing something
- I was doing something, someone distracted me and I lost track of what I was doing
- I’m expected to do something when the other people who are involved are free and they don’t consider my state i.e. whether I can function that time
On some days I’m clumsy and drop things or will be pouring something and miss the utensil and get it all over the worktop.
On other days I’ve walked into things that haven’t moved. For example, we’ve lived in our current home for over 4 years and the structure hasn’t changed, so when I walk into a doorframe, I know that something isn’t right.
Losing my footing. On a number of occasions, I’ve been thinking about something while walking or had two thought processes going on and then been unable to continue walking and have lost my footing and nearly fallen over.
Well, it’s a bit tricky because all of the COVID stuff is new so nobody really knows what to do.
The GP referred me to the Long COVID hub where I was assessed and told that their LC Specialist focuses on respiratory issues because all the patients they’ve had so far have that as their main issue. I don’t have that, so they don’t know what to do with me!
The GP who assessed me said that the warped taste and smell shouldn’t have lasted this long and that I needed to be referred to the Ear Nose and Throat (ENT) clinic. However, he explained that ENT have put a barrier in place, which is that patients need to be seen by an LC specialist before they can be referred for ENT. How does that work when the specialist is for breathing issues and I don’t have any?
Other than that, I’m trying to notice new symptoms, as and when they arise, accept LC as being here for a while, be understanding when others don’t know how to react, accept that there’s no known end date for these symptoms, be kind to myself and try and read myself better so that I avoid doing too much.
It will pass. I have faith in that.
Join The Long COVID Research Community | StuffThatWorksSurviving COVID and the after-effects
NHS: Antibody test to check if youâ€™ve had coronavirus (COVID-19)
BBC News: Parosmia: â€˜Since I had Covid, food makes me want to vomitâ€™
NHS: NHS to offer â€˜long covidâ€™ sufferers help at specialist centres
NIHR: Living with Covid19
NHS: Your COVID Recovery
AbScent: Covid-19 Smell and Taste Loss
NHS: Sleeping Well
NHS: Memory and Concentration
NHS: Musculoskeletal, Shoulder and Back Pain
Which: Long Covid: what is it and what help is available?
NHS: Long-term effects of coronavirus (long COVID)
Lockdown, guidelines, masks and so onâ€¦
Why lockdown has been so SO difficult for some people
Spiritual learnings realised because of the coronavirus