On Having Long Covid

So it's been more than six months now since I caught Covid.  And sadly, I'm still not back to my pre-covid self.  I'm doing much better than I was a few months ago, but for me recovery has been slow and unpredictable.

When I caught Covid I was very sick.  It was the first time I've ever felt I should go to hospital for an illness.  Not because I was freaked out due to the media hype, but because I really struggled to breathe.  The only reason I didn't go was because we caught it during the height of the first wave of Omicron and our healthcare system was slammed.  I didn't want to be waiting around in A&E with a bunch of other sick people whilst feeling so awful and I was worried that other people worse off than me might end up missing out.  So instead, I used my inhalers excessively, threw all the Lemsip and anti-inflammatories I had at it, and didn't sleep for the worst three days.

At the time we caught covid you had to isolate for a minimum of ten days.  I ended up isolating for almost double that.  During the worst of being covid positive my chest felt like there was a huge weight on it - breathing was such an effort I had muscle pain in my chest for weeks.  I was grateful Murray was less sick than I was so he could look after the kids - I spent several days in bed because I was too unwell to do anything.  As a consequence of Covid I got a chest infection.  Because I still had Covid symptoms I could not see a GP in person, so had a phone consult to get antibiotics and Murray picked them up for me.  On my first shift back at work I had to finish early because my thighs started shaking just from the effort of standing up for several hours. 

Being this sick was a bit of a shock. While I've always taken Covid seriously, I never considered myself a high risk person.  While I knew I was the highest risk person in my household due to being asthmatic, I thought due to my age, general health and fitness level I would be ok.  I was much more concerned about my Grandma or Mum catching it*.  My asthma is generally not an issue for me.  Prior to Covid I genuinely can't remember the last time I used my inhaler.  I'm just so glad I erred on the side of caution and updated my script before I got sick.  I don't think I could have avoided hospital if I didn't have inhalers.  

While recovery was slow, I was recovering.  I tried to follow the advice available at the time which was to go easy with exercise and stop when you feel tired.  Prior to getting sick, I was swimming 1200 - 1500 metres three to five days a week plus going for walks and living a generally active life. I had lost 11 kilos over eight months from being active and eating healthier.  After Covid, I stayed out of the pool completely for the first three weeks.  After that, I thought a little swim wouldn't hurt, so I did one slow 600 meter swim.

I felt great while I was swimming - but after I got home I felt wobbly, went to have a nap and woke up three hours later.  After that first swim I waited another week before trying again.  Again, I didn't swim far or fast and didn't feel bad while exercising, but afterward I felt totally wiped out.  So I stopped swimming for a bit, and switched to little bush walks.  Slowly, my energy levels started returning.  I was managing at work ok.
  

A pic from my action packed weekend     

About six weeks after having Covid I had a holiday booked in Warkworth.  I try go away on a holiday by myself at least once a year for some R&R.  These holidays are about getting in some me time and some rest.  It's usually 2 - 3 days spending time in nature, relaxing, eating delicious food and watching crappy motel TV.  

This holiday was no different.  I stayed in a place I'd stayed before and enjoyed the natural landscapes of the Tawharanui Peninsula.  I did go for beach walks, but I did my best to keep each walk under 45 minutes.  While I did go out in the mornings, I spent my afternoons doing Paint-by-numbers in the sunshine of the large bay window in my room.  I was asleep before 10pm each night.  It was by no means a busy time away.  I thought I'd come home refreshed and full of energy.

But when I got home I felt like I'd been dipped in concrete.  I struggled to get out of bed in the mornings.  I needed to use my inhaler after walking short distances.  I ended up taking a week off work because I couldn't stay on my feet for longer than a few hours before getting shaky.  I booked an in-person appointment with a GP.  Because I technically had Covid symptoms, I had to stay in my car for the first part of the consult.  She tested me for all the usual stuff: iron, B12, blood sugars, thyroid and all came back fine.  She put me on a reduced schedule at work for six weeks, gradually easing my hours back to previous levels.

What I learned from that consult was not only that I likely had Long Covid, but that what I considered rest was not what Drs mean by rest.  Walking on the beach was too much exercise.  What they considered to be exercise was walking to the mailbox and back.  While I had slowed down, proper rest wasn't feasible given my usual life.  I work in a very active job where I'm on my feet all day, often running around and sometimes doing heavy lifting.  As a working parent, things are busy.  There's school drop offs, pick ups, play dates, after school activities as well as the cooking and cleaning.  My life isn't conducive to rest.  Regardless of how early my bedtime is, regardless of cutting out exercise and trying to take naps, my life was too active to aid in my recovery.  She said things may have been better had I completely rested for the first month after getting sick which is nigh on impossible as a primary caregiver.

Common impacts of Post-Covid 19 - the random bruising is real!

Post Covid-19, more commonly known as Long Covid, is defined as chronic fatigue, shortness of breath and cognitive dysfunction unexplainable by other causes, 12 weeks post infection. While it is similar to post-viral infection it is far more common.  Where around 2% of viruses will result in post-viral fatigue about 10% of covid cases result in Long Covid.

As this is a fairly new medical diagnosis, there are still a lot of unknowns around how to treat it besides rest.  However, research can tell us what risk factors make us more likely to get it.  Here are the more common ones:

• People over 70 are twice as likely to get it than folk aged 18 - 49
• Women in general.  And women aged 40 - 50 twice as likely to get it than men in the same age bracket
  
• Folk with pre-existing mental health issues are 50% more likely than their more mentally well peers, and asthmatics have a 32% greater likelihood of getting Long Covid.
  
• Those who experience 5 or more different symptoms in the first week of illness are 3 1/2 times more likely to get Long Covid.
  
• For people who have previously had Epstein Barr Virus (Glandular fever) a Covid infection often reactivates EBV leading to Long Covid symptoms.
• Those who are not vaccinated are 59% more likely to get long Covid than their vaccinated friends and whanau.
  

Other than being under 70 and fully vaccinated, I meet all of these criteria.  So Long Covid was always a likelihood for me.

It does feel a lot like how I felt when recovering from EBV.  My primary symptoms have been fatigue and brain fog, but I also get muscle fatigue and very sore eyes.  What is most frustrating for me about this is the inconsistency.  I might have a fairly good couple of days where I feel almost normal, then one day I'll wake up and my limbs are heavy lumps again.  Now I am well enough that I can walk to school pick up and back without using my inhaler - but if I do that whilst carrying the kids school bags I need my inhaler and a rest when we get home to be able to cope with looking after the kids.

I go to bed by 9.30pm most nights.  I can't focus for long periods of time.  I struggle to find energy to be social with friends and whanau.  My short-term memory is shot.  I can't exercise like I used to and I've gained back half the weight I lost last year.  It's frustrating.  And there's no time frame on when I'll start to feel better.

I've had another unusual symptom: hair loss.  While it's not often talked it isn't that uncommon.  Any stressful event can trigger hair loss including viral infections.

My hair at similar lengths before and after Covid.

Having experienced hair loss before***, this aspect of things hasn't been too upsetting for me.  As someone with very thick hair I know that to most my hair loss isn't noticeable.  But to those who have known me for more than a few years the complete change in my hair texture is hard to miss.  While my hair has never exactly been straight, it hasn't been this curly since I was a toddler.  This is because I have wavy hair, and now there is less of it it is light enough to embrace its natural wave.  I hope it stays like this.  It's 100% the only good thing that's come from me having Covid.  I've totally embraced my post-Covid curls.

A cute baby pic of me to brighten this downer post

There's not much advice I can give for those who find themselves in a similar position.  The easiest way to avoid this is to do your best to avoid Covid.  Wear masks.  Wash your hands.  Get vaccinated.  If you do get Covid - rest.  If you are an active person like me, that means NO exercise for the first month after infection.  If you are not feeling great a month after getting Covid, talk to your GP.  Come up with a plan.  Make changes to your work/home responsibilities/routines to facilitate actual sitting-on-the-couch level rest. 

I've used this stuff a lot over the years
and found it to be gold for aiding energy levels

Aside from rest, I've amped up the vitamins.  Since having Covid, even a little illness really knocks me.  I take Vitamin C every day.  I take probiotics and drink turmeric tea to help my gut bacteria get back on track****.  I take Clinicians Stress and Energy support to aid in energy levels and sleep (this does seem to help with my tummy trouble as well).  It took a few months, but my physical resilience seems to be getting back on track - I managed to get through the last kids-bug-from-school relatively unscathed.  That's the first time in the last six months.

And be kind.  Be kind to yourself if you are slow to recover.  It's not your fault.  Be kind to others if their recovery looks different to your own - it's not their fault.  Long Covid is real, it affects 10 - 20% of us, and it really, really sucks.

* I'm so thankful that they still haven't [touch wood].  If anything, being this sick made me feel much more nervous about others I love catching Covid.

** I have bruised myself by giving myself an arm massage.  Like, LOTS of bruises all over both my arms.  From a massage.  I gave myself.  It wasn't that hard.  And no, I'm not anaemic.  That's all just Covid fun time.

*** Due to a wonky thyroid which has since righted itself.

**** Like it did with EBV, but gut health has gone down the toilet (literally).  Foods I used to be able to eat without too much drama are now blowing my tummy up like a balloon. 

On Having Covid

My brain is still not great, and I figure if folk are reading this cos they have Covid theirs won't be great either.  So here's an easy Q&A I've put together about my experience with Covid.  Feel free to skip to the parts that are most useful for you.

1) How did you get Covid?

Honestly, we don't know.  We think it's possible that Etta had it before anyone else in our house but she wasn't tested when she was most symptomatic.  It seems unlikely given that everyone else in our household had it, that she managed to avoid it completely, and she did have the 'Covid cough' before anyone else in the house.

We hadn't tested her as she had similar symptoms to what both Murray and I had had the week before and we'd both had PCR tests that came back negative.  The timing also made things tricky.  She got sick at the time that there were huge queues for PCR tests and because we'd read in the news that some tests weren't even being processed due to overloading we didn't want to make her sit in a car for up to five hours for a test when she probably just had the bug we'd just had the week before.  RAT tests were not available at this time.

So it had to come from school.  We've been extremely vigilant with our kids being out in public like, they've only been into my work once and supermarkets not at all.  We haven't even had playdates this year.  Given the number of positive cases at our school, whether it was Etta or Abby that got it first, that's likely where it came from.  Yes the kids have both been wearing masks to school.  Yes the school is trying their best.  It's just what happens in a pandemic.

2) Did you pass it on to anyone else?

Not to our knowledge but quite possibly.  Both of the kids teachers are ok, but there are certainly other kids at school that also got Covid although none of our kids besties have it yet.  Both kids were at school whilst mildly symptomatic - in Etta's case we'd assumed she had the cold we'd had the week prior.  And in Abby's case we had not actually realised anything was off - her teacher mentioned that she'd been a little quieter than usual after I text her when we tested positive.  On the Tuesday I started having a runny nose I was at work, but when I was less well the following day we switched our whanau hui to online just in case something was up.  We definitely didn't behave perfectly but after living with covid in our community this long it's been hard not to.

We could only get two RAT tests initially
so the most symptomatic of us took them

3) How did you feel when you tested positive?

I had an inkling just because Abby was so sick and there were cases at our school, so it wasn't a huge surprise but it was still weird seeing the positive tests.  It was the first RAT tests we've ever had, but my 14th test overall, so after 13 negatives it did seem a bit weird.  Murray was really surprised.  Like, he knew given where we live we were likely to get it but it was still a shock.  I was just really glad that we'd prepped the kids for the likelihood of this happening and that we'd all likely be ok so that they weren't too freaked out by it.  I felt awful we hadn't tested Etta earlier as was quite sure at that point that she'd had Covid. 

 

4) What symptoms did you have?

The first symptom was a runny nose which I honestly just pegged as hayfever only it was more persistent than usual.  Around that time I did also have a little bit of a funny tummy and was just a bit off food.  The day I tested positive was two days after that.  I didn't feel totally awful but had bad congestion and a scratchy throat and everything tasted kinda metallic.  By late afternoon I felt much worse and developed a fever.  The next day I started having a lot of difficulty breathing and was totally wiped out.  The next two nights my breathing was bad enough we considered taking me in to hospital.  I really didn't want to go because I knew how busy it would be and my inhaler helped keep things manageable although I didn't sleep much because of my breathing.  Once my chest settled it was lethargy, fever, body aches and a cough.  I had a few days of bad headaches which I think was due to the swelling through my sinuses.  I've also had bad vertigo which I think was caused by the same thing.
I still have lethargy and a cough and it's 18 days since symptom onset today.

The kids were definitely sick for a shorter time than us.

5) What symptoms did others have?

Everyone was quite different.  Etta had a sore throat and a cough.  Abby was just tired and feverish and had a day of vomiting when her fever was at its worse.  She developed a cough after the fever started to calm down.  Murray had a sore throat, congestion 'the most powerful sneezes of his life' and a cough.



6) Did you have Delta or Omicron?

We have no real way of knowing.  About 5 - 7% of PCR tests came back as Delta around the time we got sick and there were cases of Delta where we live.  There really is very little difference between Omicron and Delta in terms of symptoms other than intensity.  Based solely on numbers, it's more likely we had Omicron but we'll never know for sure.

7) How does having Covid feel different to other illnesses?

The biggest, consistent difference across the household was the taste thing.  While I didn't 'lose' my taste and smell as such stuff just tasted gross and metallic.  All of us were off food for a bit as a consequence.  For me and Murray the congestion was next level.  Lots of sneezing and so much mucous.  Far more than your average cold.  And for me the struggle to breathe.  It was crazy.  I've never had so much trouble breathing before.

This was an absolute must!

8) What medication did you find most useful?

Lemsip Max Cold and Flu with Decongestant without a doubt.  If I had to recommend one thing for your emergency Covid kit it's this.  Without it I could not have functioned at all during the worst days.  For the kids - Pamol.  Pamol, Pamol, Pamol.  They are both fussy and stubborn kids and we had a lot of difficulty getting them to take anything else.   It helped greatly with pain and fever management.  And I would have been in hospital without my inhaler.  The other stuff that helped generally was Vicks Vaporub, wheat packs and anti-inflammatory meds.

Because I was sick for so long we did get in touch with a GP around day 12 who put me on antibiotics to clear what she thinks is a post-covid infection of some kind.  I definitely recommend contacting a Dr if your symptoms haven't cleared after 10 days as most people are only really sick for about seven days and many people even less than that.

9) How have you managed parenting while sick?

Honestly, I didn't.  Murray got sick after me and not as sick so he has literally done most of the parenting stuff over the last few weeks.  There were about four days where I was in bed most of the day because I literally had no energy for more than that.  I had so much trouble breathing there were a few days I couldn't even read the kids their bedtime stories.  That felt so awful.  I am so glad they had someone here who could help them with more than just the basics, because other than cooking toast I was pretty useless.

10) What is the hardest thing about having Covid?

For me it was definitely worrying that I might have made someone else sick.  I was really scared that we'd passed it on to Mum because she had been at our house on the Monday looking after Etta who had a cough and was home from school and we tested positive on the Thursday.  Because Mum has lots of health issues the idea of making her sick was especially scary after I got so sick.  I text her every morning to check in on her and she isolated just in case so if she did have it she wouldn't pass it on to her Mum (Grandma).  I am still so thankful we didn't pass it on to her.

11) What surprised you most about having Covid?

How ill I've been. 

Honestly.  I'm a numbers person.  I find them useful and comforting.  I read things in my own time from many, many sources and use them to prepare myself for multiple scenarios.  They help me during unpredictable times - like being in a Pandemic.

We knew that it was highly likely we would get Covid purely because of where we live.  Every time there have been lockdowns there have been cases at our school.  The only way we could have avoided it was if we'd kept the kids out of school even longer than we did (they were out for six months) and if I'd quit my job.  We prepped the kids for the likelihood of us getting Covid so it wouldn't scare them too much when it happened.  We were as vaxxed and boosted as we could be.  We were very, very prepared.

And I was ok with the idea of getting Covid because we are not a high risk household.  Between us, Murray and I have lost 25kg in the last seven months to improve our heart health.  I swim 5+ km most weeks.  We aren't that old and we eat a fairly healthy diet.  While I have anxiously anticipated other people I care about getting quite ill, never in a million years did I think it would be me.  While I did not end up in hospital it is the closest I've ever been to going to hospital because I was ill.  While I have been to hospital many times, never has it been due to illness*.  It was very scary.  The only pre-existing condition I have is asthma and it is mild as in I rarely use my inhaler.
It's been a real shock.

We now own three of these. 
Two are currently loaned out.

12) What did you not have in your Covid kit that you wish you did?

We had a really good kit because I anticipated that this would be happening pretty soon.  We had frozen pre-made healthy meals, extra groceries and frozen bread, a kit with medication and extra lemonade.  We had also made plans with family and neighbours in advance to help with getting groceries.  I think given how many cases there have been it might be good to ensure there are a few people who can help in case your main support people are also isolating.

If I were doing over though I would have bought more Lemsip and Pamol than I had as we did run out fairly quickly.  I would have more lemonade and iceblocks and more simple foods.  I hadn't anticipated being really off eating food so while we had a lot of healthy meals, we didn't have enough crackers and bread which is all I really felt like eating early on.  Also just more food generally.  I forgot that Murray gets REALLY hungry when he's sick so he ate far more than I had planned for.  I should have had more cup of soups and noodles in the kit.

And I'd definitely make sure I could access a pulse oximeter.  While I thought this an extreme measure before I got sick, it actually would have been helpful at the peak of being sick.  Consequently, I've actually bought several so that if anyone I care about gets really sick I can lend them one because the idea of people I care about getting as sick as I did scares me.

Delicious Magic Soup from a friend

13) What was the most helpful thing other people could do for you when sick?

Honestly, the most helpful thing was Murray looking after the kids as much as possible.  I think getting Covid and being as ill as I have been would be extremely tough for single parents or people without support at home.  For those people I imagine recovery would take even longer. 

The other things that have been really great is having a supportive team at work.  People checking in on me often and making sure things are actually ok without putting pressure on to be back.  That's helped immensely.  And meals.  We have been so lucky to have had a few people drop off meals to us which isn't just practically supportive, but truly makes you feel cared for.

14) Has it been hard isolating for so long?

Not for me, no.  I've been so unwell I haven't really had an energy level which would sustain me going anywhere anyway.  While my brain fog has not been as bad as I thought it might be, it's been at a level where I can't really focus on much.  I haven't really felt bored because I've only had energy to sleep, watch TV or do Paint By Numbers.  I don't feel too much like I'm missing out because I wouldn't enjoy doing stuff at the moment anyway.  I've felt grateful to have this time and space to recover.  I've appreciated the small things - my garden, my pets and my partner.  Social media has helped me feel connected to the wider world.

It was definitely harder for the kids.  They really missed seeing their friends.  We put routines in place and more treats than usual to help them stay sane.  We took turns choosing a movie every afternoon (I couldn't do much more than that with them) and Murray made sure he had some outside time with them each day.  We did send them back to school earlier this week because they've both had it and both isolated for more than ten days and Murray has walked them to school because his 10 days were up on Monday.

15) Any other advice?

If you aren't already, get vaccinated and boosted.  It is the simplest way to ensure you have the best chance against Covid.  Whether it's Delta or Omicron or another variant again, it isn't just another flu and has killed over 6 million people worldwide.  So far, evidence suggests our highly vaccinated elderly population is the main reason we are not seeing more deaths here in Aotearoa.  The reason our household got Covid is the same reason many others I know got Covid - from our partially (or unvaccinated) kids.  Vaccination truly helps slow the spread.

For me, if being vaccinated just increased my immunity by 10% it was worth it.  That 10% was the difference between recovering at home or needing to be hospitalised.  When you think about the broader impacts of this on our health system, you can see how vaccination serves your community.  Me not requiring hospitalisation means there's more space for folk who do.  During a pandemic, that can be the difference between timely care and someone living, or untimely care and someone dying.  It's just that simple.

And if you can refrain from being in high risk environments then do.  Long Covid is real and affects 10 - 30% of people who've had Covid.  These rates are higher for people with multiple symptoms during the first week, people with pre-existing conditions, folk who are overweight and women generally.  These rates are much, much higher than normal post viral fatigue which sits well under 1%.  The best way to avoid long Covid is to avoid Covid.  And if, like us, this is just not a reality because of where you work or live - rest.  Pace your recovery.  Do not rush things.

And have a plan.  Having a plan and having medication, meals and food available truly made everything much easier for us.  I know the extent to which we prepared is just not feasible for everyone.  But every bit counts. Even an extra pack of noodles, an extra loaf of bread in the freezer and paracetamol in the cupboard is helpful.  And having a plan of who can help if you need to isolate helps.  Check which extra local support is available to you.  Know where you can pick up RAT tests if you need them.  Put the number for Healthline in your phone.  These small things can make a big difference when someone in your home is ill.

And don't waste your energy on feeling guilty.  Put that energy toward getting better.

A cute cat pic after all that heavy stuff.  These fur balls really helped with my recovery

* Just lady organs not behaving as they should.  Or because I've injured myself.