I am emerging from the deep, dark cave that is Long Covid — I hope! But I don’t want to jinx it. The past 7 months have been a living hell – a nightmare in real life. No one wants to know all the details so I’ll just give a short summary and move on to the brighter moments.
I last wrote in early February 2021, about 4 weeks after we had “acute Covid”. At that point I felt like I was actually improving, but I didn’t know what was yet to come. In February I started having lots of awful neurological strangeness — burning sensations in arms and legs, overwhelming fatigue and “brain fog”, and one night I even woke up and couldn’t feel my right leg. It was terrifying. I was also combatting an insane sort of insomnia — not your usual “I’m a little anxious so I couldn’t fall back to sleep at 2am”. I was up at 12, 2, 4, and 6 — sort of like the first 8 weeks of motherhood, minus the infant.
Off I went to the neurologist whose initial examination ruled out “serious” neurological problems. The brain and neck MRI thankfully confirmed I didn’t have MS, a stroke, or brain damage — which was great! — but he didn’t know what it actually was. He concluded I had “post viral syndrome” and basically discharged me. By now, I’m used to this Western medicine practice of excluding the bad stuff but not providing any real answers. It’s fun!
Here I am in some waiting room, can’t remember which. I think it’s the Heath Hospital A&E (Emergency room). Yes, those are real tears and that is real pain. Send me virtual hugs even now.
Symptoms lessened in March, but the fatigue, insomnia and food intolerances persisted. I rejoined Facebook just so I could join the Long Covid Facebook group, where over 40,000 of us swapped horror stories and coping strategies. It was through this group that I realised many of us were suffering from a histamine overload — something to do with an overactive immune system. Most of the people were following a low histamine food protocol plus a bunch of natural supplements in an effort to stabilise mast cells which can overproduce histamine.
It all sounds insane (!) — but since cutting out high histamine foods, I can avoid the burning and prickling sensations I’d been experiencing for months which is well, better than nothing. I have to avoid basically everything comforting and delicious — gluten, dairy, processed sugar, alcohol, caffeine — but it’s worth it to avoid the awful burning and prickling pain all over my body.
It’s been a shocking change to my way of life, to say the least. And it’s been really hard on our little family. I wouldn’t have made it without all the hugs from Aled and Morgy, the chats in the park with friends, the calls and messages from family and friends all over the world. A huge thanks to everyone who has reached out to check up on me — I can’t tell you how much it’s meant to me! I am so sorry I wasn’t able to respond more, or chat for longer, I simply didn’t (and kind of still don’t!) have the capacity to do it. Thank you for all your love and well wishes from the bottom of my heart! I am also extremely grateful for the ongoing support from my employer.
So that’s a glimpse of the first few months of 2021 health-wise. School-wise: we were home schooling until about mid-March which was really hard as I felt so bad. The school provided a few worksheets via Seesaw which we often finished by 10am, so I had another 10 hours to fill until bed time. Aled was was working Tues – Fri so on those days I was on Morgy duty, with Aled giving me a nap break over lunch time. Rachael and I were in the park nearly every day, rain or shine, so Ben and Morgy could play outside. I am so grateful for the camaraderie of the other parents in our class, in particular Mat, Rachael, Beth, Lee and Kate. This is Morgy with his good friend Ben at one of their favourite mud holes by the river.
The mud baths continued even when school started up again in mid-March.
Of course it was Morgy’s 7th birthday on the 14th. He requested lemon meringue pie!
And the big present was a fish tank! The sand sediment has since cleared and Morgy loves his fish.
Over the April break, we were mercifully able to travel out to Pembrokeshire for a much needed change of scene. I cried when I saw the sea and I think it was the salt air that helped me sleep through the night for the first time in about 3 months.
The weather was cold but we had a few nice outings. We explored a section of Pembrokeshire which I had never been to, the peninsula with Dale and Marloes beaches. They were both beautiful. This is Dale beach:
And this is Marloes beach:
Easter day itself was lovely and I roasted a leg of lamb from the amazing Newport butcher. Honestly he’s the best butcher in the world I think! The lamb is always super succulent.
This is the best pic we’ve got of the dinner itself – a lovely sun trap at the back of Maen Gwyn there.
The weather was sunny but very cold. We took a really nice walk around the coastal path by Aber Bach which reminded me exactly of the walks and gales in Wellington. This could easily be my old favourite, the Southern Walkway.
Spring continues to be my favourite season in the UK, with a lot of lovely blossoms blooming.
Aled had to work the second week of the Easter break so I took Morgy on a day trip to Tenby. Keeping in mind I hadn’t been awake for a full day since Christmas 2020, this would be a really big day for me. I packed a low-histamine lunch — white rice, two boiled eggs, and cucumbers — and off we went. We had a really nice day down the beach, and then walked around towards the harbour before heading back to Glan y Mor.
Ceri, Angela and the girls also came down nearer the end of the break, and it was so nice to see the cousins playing together. Here they are on Dinas Mountain — it was actually so cold up there it snowed on the way down!
When we got back to Cardiff, we were called for our vaccines, which was kind of exciting. We both got the Pfizer jab at the Splott mass vaccination centre. There we were on these school assembly chairs in a big gymnasium with basketball hoops on the side. It was a bit surreal and I got quite emotional when we finally got the vaccine. When I first went in they steered me towards a chair labelled with the number 13 — I flat out refused to sit in it!
Spring had truly sprung when we got back and we went into town for a walk around a different park. This was the first time we had been to Cardiff City centre for months!
May is a bit of a blur — by then I had been signed off work for about 4 months, and while some symptoms were improving, I was starting to get really bad headaches, brain fog, and constant fatigue. I started taking an anti-histamine which really seemed to help with the sleep and the burning/prickling in my arms and legs, but I basically lost the ability to work on the computer without my eyes and brain seizing up. This was of course absolutely terrifying so I went the eye doctor who did all sorts of tests and told me “it wasn’t an eye problem”. Thankfully, my ability to work on screens without getting a migraine has improved in the past month. But I still have to limit it. I am testing myself right now with this long overdue blog post!
This is a hilarious pic from May — a picnic with Paul and Anurag. We are showcasing two of Nanna’s blanket creations:
Perhaps the major highlight of the first half of 2021 has been the canal boat trip we took over the late May bank holiday (and Aled’s birthday!). We’ve been dying to do a canal boat holiday for years and booked it way back in February 2021 as something to look forward to. We had no idea whether we would be allowed to travel then, or if I would be well enough, so opted for a 4 day taster — boarding on Friday at 4pm, disembarking on Monday at 9am.
As it came nearer, we felt I was up to it, but still had to take it really easy. And of course bring along a lot of chicken, rice and eggs. Here we are on the “Red Finch” on the Monmouthshire & Brecon Canal.
This is a tiny, picturesque canal only an hour north of Cardiff and it’s absolutely beautiful!
It was a really beautiful place, very tranquil and serene.
We celebrated Aled’s birthday on the boat.
We all had a go steering…
…which at times was quite challenging through the low and narrow bridges…
Despite my previous boating experience, the tendencies of a long boat took a while to get used to and I think we were all grateful for the fenders alongside…!
Morg had a blast jumping on and off occasionally to explore the canal banks. Here he is on a big redwood…
It was a super fun holiday! The only complaint is that the bunks were really, really small, so by morning 4 I was totally exhausted. My bunk was under Morgy’s and had about a foot clearance so it wasn’t the most comfortable. I’m a bad sleeper though!
In June the kids were back at school and we were all on a countdown to school holidays. It felt like everyone — parents, teachers, kids — were ready for another chaotic school year to be DONE.
There were a few nice trips to the beach with friends on the weekends — here is Morgy with Zeke (thanks Mat for this awesome photo).
A fun morning at St. Fagan’s on the high ropes course with Ben and Milo…
A lovely walk in the hills near Cowbridge with Paul and Anurag…
A potential for the xmas card…
And a visit from Charlotte and Pete who live in Arizona. It was lovely to see them albeit very briefly! They are British expats living in the US, so it’s always interesting to swap stories and experiences on immigration, life in each other’s countries, etc. A huge thanks to Pete for his tips on plane travel in the time of coronavirus.
And well that’s all I’ve got energy for. Apologies if I have missed any key pics — my brain is fried and as I say it’s been a strange and awful time. Here’s praying for better days ahead — for me and for everyone, in particular for those who have lost loved ones. If you are reading this, take a moment to be grateful to be alive, and to have your health. Huge hugs to everyone — stay safe amongst the viruses, the hurricanes, the fires, the tornadoes, the terrorists, the earthquakes! As they say in NZ, Kia Kaha. Stay strong. XOXOXO
PS — please keep in mind that the pics I’ve shared show the nicest moments in a dark, dark time. I’ve spent countless hours in my bed feeling really awful, resting to make it possible to partake now and again in the nice things that I’ve posted here. Coronavirus is an evil virus, and Long Covid is very, very real and very, very miserable. You just don’t know who it’s going to impact or how. Please be careful — you don’t want Long Covid. And you don’t want your kids to get Long Covid.