Hello everyone and happy new year! Once again there’s been quite a delay since my last post — apologies but there just doesn’t seem to be enough hours in the day with all the demands of home schooling, working and having an ongoing health issue… on that note apologies in advance that this post will be a little downbeat but I would like to share some of what I have been going through. It will be hard for me to write, and perhaps not the most uplifting post to read, but I keep this blog to document my experiences and I guess I should feel lucky that most of the time I have quite positive things to share.
As you know, the middle six months of 2020 were full of various lockdown restrictions here in Wales and various health scares related to my digestive system. Luckily, most of the tests came back with “nothing serious” and “no abnormalities detected” with the exception of the endoscopy which showed mild gastritis — inflammation in my stomach lining. Despite getting various “all clears” and “you’re fine” sort of advice from GPs and gastroenterologists, by autumn I could no longer eat many of the foods I have enjoyed for, well about 40 years.
On my birthday in late September I was on a lactose free, gluten free and low acid diet, which meant I couldn’t have cake but was instead treated to a selection of melons and a small dollop of oat-based vegan ice cream (Jude’s salted caramel, it’s quite delicious actually). I had been keeping a food diary for several months and while there were clearly some things that bothered my digestive sytem, there was also a lot of randomness with food reactions, and an ongoing prickling sensation in many parts of my abdomen which persisted no matter what foods I ate.
It was quite restrictive and demoralising to avoid so many foods and beverages — in particular wine!! — but I persevered as best as I could in September and October on what Aled and I called “the super bland” protocol which mostly consisted of rice, eggs, chicken, fish, and lots of fruits and vegetables. If I strayed from this diet, a flare up would ensue — this might be too much information — but in these flare ups, nothing comes out the back, it just feels like a migraine of burning sensations in my abdomen which leaves me bed-ridden and exhausted for a few hours. It’s no surprise that I have developed food anxiety — eat the wrong thing and I’m out of action for at least the afternoon, if not a day or two afterwards.
Despite sticking to the ultra-bland routine, various pains persisted. In early October, an intense stinging in my lower right quadrant resulted in my GP sending me urgently to the Surgical Assessment Unit to ensure it wasn’t appendicitis. Bloods taken, consultants seen, discharged with a disheartening “we don’t think it’s your appendix but we don’t know what’s wrong with you”.
By mid-October, nothing was improving and having essentially been given various “all clears” from my GP after umpteen blood tests (read: abandoned!), I engaged the London Clinic of Nutrition to see if they could lend any further insight. They follow a “functional medicine” approach which takes a more holistic approach to health – considering the physical, mental and emotional well-being of a person. They also seemed to do more sophisticated testing which sounded far more comprehensive and insightful than the basic NHS testing.
I was working with a lovely “nutritional therapist” there who studied my whole life story – the questionnaire took ages to fill in but it was very comprehensive. My first consultation was about 1.5 hours (compared with 10-15 min with a GP) and her initial report came back with a very long list of recommendations, ranging from dietary changes, to supplements, to meditation. The list was overwhelming at first but having paid a fair amount for this advice I threw myself into it whole heartedly: elimination protocols, supplements, protein shakes, veggie smoothies, meditation etc. You know me — let’s make a plan and sort this out!
Here’s just some of the(very expensive!) supplements…
And the Dr. K veggie smoothie…. it looks like a swamp but actually tasted ok — apparently to get my “short chain fatty acids” going. Compared to the vegan “creme brulee” protein shake above, the Dr. K swamp shake was actually a delight!
So this regime continued throughout November and early December, with very limited, if any improvement. I was back at the Surgical Assessment Unit in early December with the same stinging – my 10th bloods taken and discharged again with “we don’t know wht’s wrong with you”. By then results had come back from the London Clinic showing I had “dysbiosis” in my intestinal tract, a possible algae parasite, and high levels of some “mycotoxins”.
These were very alarming results however when I showed them to my GP and another private gastroenterologist they basically discounted them on the basis that the tests had not been validated and/or they didn’t really know how to interpret them and/or they didn’t know how to turn them into a clear treatment plan. The London Clinic suggested another expensive list of natural supplements to rid myself of the various toxins, a few of which I tried but found they had little effect. By then I had turned into a serial googler to try and make any sense of the information and frankly tied myself up in knots as well as gave myself lots of additional anxiety. It turns out there’s a huge number of websites, blogs and clinics springing up all over the world to try and address gut issues which gastroenterologists worldwide seem incapable of resolving. And lots of conflicting, irrelevant, and non-scientific advice from a wide range of people — some of whom may be legitimate and some of whom well, who knows what their credentials actually are?
Ultimately, I feel pretty disappointed and unimpressed by these highly paid gastroenterologists — it doesn’t take a genius to shove a camera down my throat and “identify” gastritis does it? The million dollar question is what can we do to FIX IT (other than prescribe the acid-reducing proton pump inhibitors which I am pretty sure caused most of the problems I am now enduring!?)?
I saw another private gastro just before Christmas who came highly recommended and does research on inflammatory bowel disease (Crohn’s etc). He spoke to me for an hour and then reviewed my NHS case notes in great detail, finally diagnosing me with “centrally mediated abdominal pain syndrome” or “visceral hypersensitivity”. Apparently this means that my brain now interprets normal digestion as a painful experience. He recommended a low level antidepressant for pain management and/or hypnotherapy. He then sent me to an immunologist to check for food allergies as an explanation for the flare ups — none of which turned up. …. so 10 months later I am still in a lot of discomfort, have to avoid a large number of foods, and have no real treatment plan other than doing my 15 minute “gut focused hypnotherapy meditation” every morning. I am sticking to the low FODMAP diet for the time being which seems to help me avoid flare ups. And finally, I am refusing any pharmaceuticals at this point as I have tried a few over 2020 and they seem to mess me up completely.
Yoga breathing definitely required.
So that is my long sob story — thanks to everyone who has reached out to me with kind words and emails and emotional support during this incredibly challenging time! I can’t tell you how much I have appreciated it. I’ve also been amazed by how many people have had digestive issues which they shared with me once I told them what I was going through. I’ve learned a lot about the body and the interconnectivity between the brain and the gut. It’s a bit of a buzzword lately so there’s no lack of articles about the brain gut axis, the microbiome, and how it relates to the nervous system all over the internet. There continues to be no straghtforward path to resolution though which is really frustrating… I persevere nonetheless and am off to try acupuncture this afternoon. I don’t really love needles so this will be “interesting”.
I will pause this part of the narrative to share the bigger picture events – and with more pics 🙂 … With Morgy back at school from mid-September, Aled and I continued to work from home. Whilst working from home certainly makes the school pick ups and drop offs really easy, after 7-8 months of it I was really starting to find it monotonous, isolating, and at times really demotivating. Here is one upside of working from home — making my “bone broth, broccoli and carrot soup” whilst listening to an all staff briefing.
The autumn itself was quite lovely, with lots of walks in the local parks — our closest park just 150m down the road pictured here.
And here are the boys at Roath Park Lake which has a really impressive range of different trees.
By mid-October though, with Covid cases rising once again, Wales went back into a “firebreak” lockdown for three weeks and any hopes of getting away for the half term were dashed (whilst England was allowed out and about!!). Halloween was essentially cancelled…
…but we still did some carving…
The Wales firebreak lockdown was lifted on 9 Nov 2020, and we rushed out to see Nanna and Taidi for a long weekend. We had some lovely weather so were out and about near Dinas.
Here we are down at Pwyll Gwaelod in the sun:
And me and Morgy making a mountain chain on the beach.
We also took an outing over to St. David’s — I love the cathedral there.
And given that it was our only excursion for ages, we took Morgy for a horse ride at Havard Stables which he really enjoyed. Sorry photo a bit blurry.
December saw a lot of lights coming out in the neighbourhood to spread the holiday cheer and Penylan really looked lovely.
Another key milestone in early December was finally getting my British citizenship. That will be my third nationality if you can believe it! Here I am at Cardiff City Hall where I attended the ceremony (on my own). Admittedly I got quite emotional at this ceremony as I reflected on what it means to become a citizen of another country, to pledge allegiance to a Queen and a country which my ancestors had wholeheartedly rejected…! Meanwhile when I compare it to my experience in New Zealand, the journey to becoming a British citizen has been expensive, stressful, and really bureaucratic. The tears were a mixture of joy and relief in knowing that I never have to submit another immigration application in the United Kingdom and that I can’t be legally separated from my son who is a British citizen. I am so glad that 6 year ordeal is over!
Just a few weeks later I got my British passport and I must give high praise for how well streamlined that process was! Honestly, what an easy process and well done to my brother-in-law William who manages the team which prints the new British passports!
In the lead up to Christmas, cases were rising fast in Wales and the rest of the UK, with several classes at Morgan’s school being chucked out after any positive case in that class bubble. Morgy’s class made it til the very end (19 Dec 2020) but we took Morgy out from the 11th as we didn’t want to risk it being brought home, especially because we had planned on driving out to Pembrokeshire again on the 19th to see Nanna and Taidi. We have been following the rules more conservatively than the vast majority of parents and families in our area (most of whom were still going to swimming lessons, karate, football, the gym, restaurants, etc), as well as taking Morgy to get tested occasionally as he is prone to colds.
With negative Covid tests on the 17th, we headed out to Pembs on the 19th.
Not less than 24 hours after arriving, a national lockdown was called in Wales and we were meant to be back in our house by midnight! Despite the fear of fines, we decided to drive back the next day after lunch (and this lovely walk down to Aber Bach) but the car was making funny clunking noises, so we waited til Monday to call the garage. Turned out it was closed anyways so we drove back to Cardiff in some of the worst weather we have seen for ages on Monday the 20th.
Back at home, we prepared for Christmas:
We were ready for a quiet Christmas but thought of ways to make it fun locally… but then Aled started to feel unwell on the 23rd, and on the 24th seemed to be worse, so we sent him for a Covid test… which came back positive 🙁 Given that we had been so careful, we were flabbergasted — and frustrated. Not to mention a little bit scared as the virus seems to impact everyone so differently and unpredictably. On Christmas, I started to feel cold and shivery and tested positive on the 26th.
We still enjoyed Christmas day, with me abandoning all food restrictions for a couple of days. The chocolate log cake from Marks and Spencers was particularly delicious!
And so began the 10 day self-isolation period which frankly, was torturous. Aled got the coughing version of Covid and luckily did not deteriorate after day 5 or day 6. I didn’t have the “classic” Covid symptoms at first — I had muscle aches, chills, sneezing and overwhelming fatigue for the first few days, then completely lost my sense of taste and smell on day 3 or 4. My taste has mostly returned but it’s a month later and I would estimate I have about 30% of my smelling abilities. (Given I have been blessed with the hypersensitive Morgan nose, this means I probably now have a normal nose’s smelling abilities!)
We were grateful for lots of Christmas Lego (thanks Karen, Anthony, Ceri, Ang, William and Claire!) to get us through this intensely exhausting and worrisome time, when we weren’t even supposed to leave our house for any reason for 10 days of self-isolation. A huge thanks to friends and neighbours for their offers of help, and the fresh milk deliveries from Paul and Anurag!
It took Morgy and me about a week to put together this awesome pirate ship! Loved it!
And then it was back to “school” in the new year… schools are closed again with really high Covid rates so it’s back to the joys of home schooling. Aled went back to work from the 4th — I tried to but was still so tired I took the first week of January off sick. I went back on the 11th and after two weeks basically had a total meltdown as I was still feeling exhausted from Covid, continue to have ongoing abdominal pains, and was juggling work with home schooling.
My organisation is incredibly understanding but ultimately in families where both parents are working from home and have children to home school, it’s an incredibly challenging scenario which is unfair on well, everyone! We attempted to manage it with me blocking out my calendar in the mornings to do schooling with Morg, and then working from about 12 – 5pm solidly, breaking for dinner and then doing a bit more in the evening. Aled would work from 7am – 12pm solidly, break for 2 hours for lunch and home schooling, and then do some more work in the afternoon or in the evening.
This doesn’t really work that well in practice though because I often had immovable meetings in the morning, or health appointments with the NHS which I had to attend. Aled is meanwhile in a development role where he needs to be on call for issue resolution so is often called upon to urgently resolve issues between 9 and 5. So any meetings of mine in the morning would wreck Aled’s block of time and so he would be on late into the evening, as was I to just well, do all the work required! … if I were in tip top health, I think this would have been achievable, but as I’m feeling poorly most of the time, and often not sleeping very well, it was just a nightmare. After two weeks I was utterly shattered and have been signed off work for another 4 weeks now. I must admit I feel utterly demoralised, frustrated and overwhelmed by the situation– but I need to listen to my body as it’s just not up to the task right now. 🙁
… To give you an idea of how our days go now with home schooling — I am on Morgy schooling duties in the morning and then Aled comes down to give me a rest at lunchtime. Irrespective the weather, we try to get Morg out of the house in the afternoon to run around in the park. Right now at Alert level 4 it is illegal to organise to meet up with other households — however it is allowed to go to playgrounds as long as you are not “intentionally” meeting up with other households. I honestly can’t see the difference in terms of virus transmission by playing in the mud by the river so this is what happens on many afternoons…
This is Wales in January — it’s very cold, dark, rainy and muddy! Here is one of friend’s daughters just sitting straight in the puddle as Morgy and her older brother laugh. Hilarious!
The mud gets absolutely everywhere which means we are washing mud trousers and jackets almost daily. But ultimately most of us convening illegally in the park believe it’s so important for them to be getting out, playing, and getting dirty!!
So that is all I have to report for now… will sign off with one last picture of Morgy at the “lake by the tip” which has frozen over a few times in January. It’s a nice place to walk around.
Keep me in your thoughts and prayers everyone — and stay safe in these crazy times. Huge hugs XOXOXO