Summer 2021

Another long overdue blog post! Oh well, I am currently following the motto “Do your best, leave the rest!”. So yes it’s halfway through November and the good news is that I have returned to work on a very slow “phased return”. I am working up to 20 hours by early December, and am up to 12 hours this week. Yup — 12 whole hours — which I spread out over Monday, Tuesday, Thursday and Friday. …I’ve got to push all negative thoughts and comparisons to my previous workload out of my mind, so spare me any sarcastic comments. I am literally climbing a huge mountain to return to my old self…! …it’s been such a crazy and awful time.

I’ve got limited energy and time, but I am determined to get through this post today… so where were we? Morgy and I flew to New Jersey in mid-July — it was an administrative nightmare to fly internationally with lots of additional paperwork, Covid tests, changing rules, etc etc. We got there though and I don’t really have the words to describe how it felt to see my family and get hugs from them. I sobbed and sobbed when I saw them in the airport.

The first week was spent getting a fancy blood test from a virologist (Dr. Bruce Patterson) which showed high levels of immune dysregulation characteristic of Long Covid. I then worked with an internist (Dr. Syed Haider) to get the medications prescribed which thankfully seem to be making a difference. It hasn’t been a miracle cure, but since starting them I have been able to go back to work which is a huge step for me.

The trip to the US was like no other because of my condition – I had to rest just as much as when I was in the UK, so my activities and ability to travel very far were really limited. It was really hard not being able to reach out to more old friends to see you in person — I hope you can understand! The trip was pretty low key and I am incredibly grateful to my family for helping to look after me and Morgy, especially while I was napping every damn afternoon. Huge thanks to Mom and Dad.

Here’s some photos, in no particular order.

Gramma Arizona, Uncle Doug and Aunt Elena with the boys in the backyard:

The cousins get together and our first chance to meet Ethan!

As ever there was so much delicious food — none of which I could really eat this time around… sob sob… (berries are fine of course but I really wanted to eat THE CAKE!)

Here is the next generation of cousins. In the old days, we watched movies after dessert but these guys are on various devices. Morgy doesn’t go on the tablet much, but if it wasn’t for Aled downloading Air Attack 2, I never would have survived the plane rides, sitting in the airports, or drives to and from the shore…!

Here we are at Van Saun Park, with Morgy’s favourites, the budgies.

Turns out I have something in common with the little fellas… my naps are just a little bit longer… (Covid I hate you!!)

And then there were some trips down the shore to hang out with Gramma Arizona, who just turned 91 last week! Her memory is going but thankfully she is still physically fit, and still able to drive to and from the hair dressers! Mom and Dad flew her out to Arizona a few weeks ago.

Here we all are – except Uncle Anthony who I don’t even have one picture of!! Sorry Tony!!

Here’s my Uncle Doug who is so good with Morg, Jack and Joey. Thanks for your watchful eye while I rested on the blanket and for all the moral support!

And my Mom — there’s not enough thanks Mom to you (and Dad!) for all your help and support — thanks for helping me make my “go to lamb stew” and getting me all those lamb chops!

Here’s the boys boogie boarding — they loved it!

And another day hanging out with cousins Vivi and Alejandro. It was so nice to hang out with Sonia (my cousin Chris’s wife) at the beach too — usually we only see these guys at cousins day!

Rarely seen — me in a bikini — first time in a bikini since before Morgy was born — hey I have to find the one upside of being so skinny?! Morgy said “Mom you look too naked”. I love this pic — Sonia you always looks so glamorous!

And here we are with Kim and Daniel, recently engaged — congrats guys!

Other highlights included a day at Turtleback Zoo which has changed SO MUCH since I went there as a child. A great experience for the kids with touch tanks…

Butterfly tunnels…

And giraffe-feeding… nice pic of Mom and Dad!

Also the boys did a ropes course first thing… I love these things too!

Here I am with my sister Karen suiting up for this. I haven’t got many great pics of us together from this trip — she and her husband Anthony are always working so hard, driving back and forth to New York City throughout the pandemic so we see don’t always get to hang out with them as much as we would like to when we come home to visit! Thanks K for calling to check up on me over the 2021! (I think she’s added me to her weekly patient call list — I really appreciated it!)

A couple of kayaking excursions and lake visits, first kayaking with me before it got too hot…

And later some fishing instructions from Grampa who is just fantastic at teaching Morgy various skills.

Here they go on a kayaking and fishing expedition! I really treasure the time they get to spend together during our visits.

And one last pic of Morgy at Lisa’s house – Lisa is one of my oldest friends from high school. Here’s Morg with her daughter Grace — what a riot those two were zooming around in this car. Grace was quite the fearless driver!

So that’s a taste for our time in New Jersey — apologies if I’ve missed anything out! Oh I will just post a few pics of wildlife… the deer population in New Jersey is totally out of control… here’s one in my parent’s backyard (which I hasten to add is bound by 6-7 foot high fences!).

It’s like going on a deer safari down in Toms River where my Gramma lives:

And check out this hawk which landed by the pool one morning…

And then it was back home to Wales where we had to isolate for a few days before doing a day 2 PCR covid test. Aled worked for one more week before taking a much needed holiday. We headed up to North Wales to see Uncle Ceri, Auntie Angela, Kate and Rachel.

It’s a lovely part of the world, especially when the weather is good! We had a nice hike up to a hidden campsite in the woods:

Even a short hike is tiring for me… here I am finding ways to nap while the kids played…

There was a very frightening moment here when Morg fell off the rope swing. He seemed to be holding his arm funny so we feared a broken wrist — then he fainted which was terrifying. Aled scooped him up and ran him down the mountain. We monitored him closely that day/evening and the next days and he was luckily totally fine. But it was very scary! Three new grey hairs at least.

Here we are at the pub later — no beer for me but I can eat the ham, egg and chips at British pubs so eating out is at least…possible.

Here’s a beautiful view of the mountains on the way home that evening — beautiful light:

The weather was amazing in North Wales for us — here we are the next day at Caenarfon Castle.

And then off to a beach in the afternoon where I rested while the kids played:

No trip to North Wales is complete without this lovely walk just off the A5:

Here’s Morg with Kate and Rachel in the lake — these guys play so nice together!

And of course a fire pit in the backyard — the next generation of Evan’s pyromaniacs in action:

Thanks Ceri, Ang and girls for such a lovely visit! And then it was off down to Pembrokeshire to visit Nanna and Taidi, with a stop at Cadair Idris on the way. Here is Morgy practicing his climbing skills on an outcropping:

In the old days, Aled and I would have hiked up and around the lake on the peaks above but I had to go so slowly we could really only make it up to the lake. The doctors in the US advised me not to do any exercise that would make me sweaty or get my heart rate over 100BPM and indeed I have noticed that pushing my body even mildly results in more nerve jolts/tingling in my limbs. I have never walked so painfully slowly in all my life — but I was so determined to do SOMETHING (ANYTHING!) I love and enjoy so I just went super slowly as Aled and Morgy zoomed up ahead.

It was an absolutely beautiful day for it, honestly we were so lucky to be there on a day so amazing!

Down in Pembrokeshire we did our best to help out Nanna and Taidi at Glan y Mor. My poor mother in law has been having a heck of a time in 2021, exhibiting signs of a stroke since about April… but no evidence of a stroke was found on the various scans, MRIs, etc. We have our suspicions that she has been impacted by the Covid vaccine. We are not anti-vaxxers but she had her booster a few weeks ago and seems to have seriously relapsed — so it’s hard not to wonder.

In any case, we are devastated to see her in such a state and did our best to help out in any way we could when we visited, as Glan y Mor is in its peak seasonal workload, with honey extraction, fruit picking, and managing the last few weeks of the holiday rentals next door. (read: lots of linen to wash and iron). It’s hard for both Ann and me to sit still as we’re used to doing so much all the time — it’s really not our style!

Here’s Morg learning some honey extraction techniques with Taidi:

And now the spinning:

…Aled and Morgy went for some bigger hikes — I only joined them for one slow walk up Dinas Head:

A pic of me and Aled:

A real highlight of the trip to Pembs was the dolphin boat trip near Cardigan. We’ve been meaning to do this for years but never managed so finally organised it this time around. We were really lucky in spotting two different groups of bottlenose dolphins (some of my favourite marine creatures!).

There’s also some amazing geology on the coast:

Check out this fantastic fold by a beach with lots of grey seals:

And that brings me near the end of this post… thanks for reading, and thanks again for all the messages, calls and general kindness during this challenging and scary time. It’s strange even to me to look back over this post. I look ok in these photos — healthy even! But I’ve never been so unwell in all my life!

I guess I’ve had my own eyes opened to “invisible disease” and frankly, the horror of having a condition that is hard to understand, to define, and to treat. Unbelievable and totally bizarre things have happened to me over the past 18 months – sudden new food intolerances, strange sensations in my abdominal organs, burning nerve pains and jolts in my arms, legs and torso, inability to think straight at times. Yet most of the diagnostics come back with “no abnormalities detected”. The mainstream doctors and consultants have provided little useful advice, and several have been quick to dismiss my symptoms as “anxiety”.

I know it’s very difficult for healthy people to understand this so all I’m asking (or suggesting!) is to be as empathetic as possible towards people with long covid or other similar plights. I have come to learn that there are lots of autoimmune and neurological conditions which may not be immediately apparent in someone’s physical appearance. But lots of people are suffering. Prior to getting long Covid, I literally had no idea what any of this meant in the day to day, or how significantly these conditions could impact a person — or their families who try so hard to help and support them.

I guess all I’m asking is to just try and walk a day in our shoes and understand the true impact. It is hard to imagine the suffering we keep to ourselves, or the amount of effort we are putting into stuff you may not even have to consider — like ordering food at a restaurant that won’t result in serious pain or physical damage to body parts. The amount of careful management of these conditions to even function at a basic level is astounding — the amount of joy that it robs from the every day unfathomable. It’s a totally different world and way of life, and it’s really crappy and frustrating to be putting so much effort into trying to just exist like a “normal person”.

The last thing I’ll say is that I’m going to carry on fighting, and putting every spare ounce of my energy and efforts into my recovery. I don’t know if I’ll ever be the same person again — in fact, after enduring this for so long, I’m not sure anyone could be the same person they were before this happened. One thing is for sure though, I’m not giving up until I can eat a cinnamon raisin bagel with butter again — or go to ballet without getting nerve jolts the next day. Wish me luck and keep me in your thoughts. XOXOXOXO

Here I am – doing my best to keep smiling! Apparently the body releases all the same feel good chemicals even if you’re faking it.