> The Beesley Buzz

Millendreath, Looe, Cornwall 2022

I normally like to do a diary-style write-up when we go away, keeping notes each day which I then match up with photos. But it turns out that we had such a busy time in Cornwall that I didn't get a chance to just sit and relax in the evenings to do my little write-ups. Nor did I get time to read the book or e-book I had prepared especially for my break, nor play the travel backgammon we had taken along. We did manage one round of Uno with the kids but the rest of the time it was busy, busy, busy, without time for Miss T's bedtime story either. 

On Friday 22nd July, we decided to set off super early so we set our alarms for 4am and were ready to head off by 5am. The early start paid off as we missed the worst of the traffic that had been predicted for the weekend. 

On a very clear run Cornwall is 5 to 6 hours away from us but we always allow for a longer journey in case the traffic builds up. We saw a couple of overturned trucks on the way but missed the worst of the traffic that would build up later in the day.

We passed Stonehenge just before 7am and then stopped for breakfast when we reached the services on the M5. After breakfast we entered Cornwall at 10.46am

We knew we couldn't check in until 4pm so we decided to visit a National Trust place en route. Having spotted signs for Cotehele (pronounced "coat-heel") we started to make our way there when we spotted signs for a maize maze.  

Just days before, we had been telling the kids about Maize mazes and so took a detour and followed the signs to the Maize maze down some very narrow lanes. Once we reached it, we realised that it was aimed mainly at younger children although I'm sure the maize itself would be fun for any age. We got out the car to stretch our legs, say hello to the donkey and then carried on to Cotehele. 

There were some lovely grounds and beautiful gardens to explore. We didn't go into the house but instead enjoyed lunch outside the cafe. 

Once it was nearing check-in time, we set off again towards Millendreath beach resort near Looe, where we were going to be staying. We arrived about 15 minutes early and the housekeeping team were still busy cleaning the accomodation but at 4 o'clock it was ready for us as planned. 

The accomodation smelled reassuringly clean. We've had to be extra covid-cautious due to vulnerable family members so we appreciated the no-contact check-in too. 

There were two bedrooms, one with a double bed and one with bunk beds. It is designed to sleep 4 but they'd kindly agreed that we could borrow a z-bed so that all 5 of us would be able to stay there. We set up the z-bed in the living area for D as he's the one who usually gets to bed the latest at the moment. 

I was also excited to see a sign for a laundrette on-site. However, we never did get to the bottom of how to use the launderette (I think it is a case of booking a time with housekeeping and making the payment but by the time we did that, it was Sunday and the launderette was closed on Sundays but it is handy to know that there is a laundrette on site for future reference). 

There was a big airer in the accomodation which is always a plus for hanging out any wet swimsuits or beach towels or for handwashing items of clothing and having somewhere to dry them. The other big plus-point for me (I think more places should do this one simple thing, but it really seems a rarity) was that there were hooks for hanging coats. 

It made such a difference having a dedicated place for coats rather than them taking up precious cupboard space or hanging over chairs or sofas. 

We felt very lucky to have one of the nearest accomodations to the beach. We were in no 5 and from the outdoor terrace, we had an amazing view of the beach. 

Having arrived on such a sunny day, the beach seemed fairly busy and the kayaking and watersports hut was open (it would remain closed with rougher weather for the rest of our stay). We found the beach cafe where we ordered takeaway pizzas to eat in our accomodation for dinner. We even managed a little visit onto the beach, too, to look at the rockpools whilst the tide was out. 

Saturday 23rd July
It was another early-ish start today as J is really into doing parkrun and he didn't want to miss the opportunity to do one in Cornwall. The nearest one was about 40 minutes drive away at Lanhydrock - another beautiful National Trust property in Cornwall. We remembered Lanhydrock well from a previous trip to Cornwall back in 2012 when Miss T was just a baby and the boys were a lot younger. 

Daddy and J did the parkrun (2nd most hilly in the UK it turns out) and I chatted with another family who also had a keen bean runner who had travelled about 5 hours to Cornwall too (not specifically to do parkrun but their son had wanted to do the Lanhydrock parkrun whilst they were there). 

The weather began to drizzle and then rain so we sat in the car whilst deciding whether to spend some time at Lanhydrock once it opened or to head off somewhere else. By the time J and daddy had changed into spare (non-sweaty) clothes, the weather was looking better and it was nearing lunchtime so we decided to grab lunch at the cafe there. 

It felt a little stressful eating indoors and having to take our masks off as we'd made sure we'd eaten outdoors the day before but thankfully the doors were open so it was well ventilated. 

Then we went for a look around the beautiful grounds of Lanhydrock house where we met a very friendly baby robin! 

Stopped at Aldi on the way back to grab some food for breakfast and meals the next day. Also witnessed something I found amusing when the lady in front of us at the checkout needed to run back into the store for something urgent she'd forgotten and emerged with a bottle of vodka. D nodded his head about her return and mumbled "valid". Might have been one of those things you needed to be there for but it did give me a giggle. 

Dinner was leftover pizza from the night before supplemented with some frozen peas to make sure we got some veggies in us. 

The evening called for another beach visit to look at the baby crabs and skim a few pebbles. 

Sunday 24th July

Today was our last full day staying at Millendreath so we decided to get a closer look at some of the beautiful coastline in the area. We drove to a National Trust car park where we could access a coastal path and enjoy stunning scenery. 

We headed back to our accomodation for a late lunch where I cooked a simple meal of pasta, meatballs and peas. 

Then for the evening we drove into Looe to see the harbour (and lots of jellyfish in the harbour!) We grabbed some sandwiches for our journey the next day and some takeaway chips to have with our pasta dinner leftovers. 

The sky was a beautiful pink at sunset.

We packed ready to check-out by 10am the next day. 

I'd been struggling to sleep away from home even though the bed was thankfully very lovely and firm and comfy for my back. So on the last night, we slept with the window open and I could hear the sea all night which I found so soothing and comforting to listen to. 

That was the end of our time at Millendreath beach resort - such a wonderful location - so close to the beach! 


JIA versus RA - why having the right diagnosis matters!

Many of my friends now know that I was diagnosed with Juvenile Idiopathic Arthritis at the age of 10. It was known as Juvenile Chronic Arthritis* in those days. In fact, it has been known by various names over time including, rather unhelpfully, JRA (Juvenile Rheumatoid Arthritis). 

RA or Rheumatoid Arthritis is a different condition from JIA. Whilst treatments for both conditions these days are generally similar, it is important to know that the two conditions are different as disease progression and outcomes can vary. 

Yet, for many many years, I was led to believe that I had RA once I reached adulthood. Back in the days when I was diagnosed with JIA, there were no paediatric rheumatologists. I believe Paediatric Rheumatology became a separate discipline in the UK in 2006. 

It was after a long spell of being in excrutiating levels of pain in my left hip, many visits to the GP and two hospital stays, LOADS of x-rays, and a hip biopsy operation, that an adult rheumatologist eventually diagnosed me as having Juvenile Arthritis. I have recently managed to get hold of my notes from that time and the rheumatologist has also queried whether I may have Enthesitis-related arthritis which would certainly go some way to explain my ongoing back pain and how, even after a hip replacement, my hip hasn't improved in the way it was supposed to. 

I dropped out of the medical system for my JIA at around the age of 15 after being told there was little more that could be done for me. The joint damage was severe by that point as the only medications available to me were paracetamol and ibuprofen. Sadly, DMARDS (disease-modifying anti-rheumatic drugs) and Biologics that are available to those with JIA these days were not widely in use back then and were never offered to me then or since. I knew at that point that I would have to have a hip replacement (by the age of 20 they had said, though I struggled on for two more decades before my hip was replaced).

I learnt to self-manage my own pain and continue to use over the counter drugs as needed. I did ask to see a rheumatologist when at university - but that was a one-off appointment, there was no follow-up. Looking back at the letters, I was described as having "arthritis" and the doctor was having to deduce my history from what he could see going on with my hip at that time (by that point the damage done to my hip was akin to Osteoarthritis damage and so described as such). I was on my own again having to self-manage my pain for another decade. 

When Miss T was born, my back pain flared hugely and led to me seeing the doctor again. I was referred to our local rheumatology team but despite my requests to see a rheumatologist, I never got to see one. I was placed under the care of a "GP with an interest in Rheumatology". He was a caring doctor but looking back now, I can see that with my long and complex history of arthritis, I really should have been seen by a core member of the rheumatology team. Someone who has knowledge of JIA and adults with JIA. 

Throughout these years, my JIA was described as RA by the GPs and any other doctors I saw for any reason. I didn't know any better to correct them as I had no idea then that a condition that included the term "juvenile" would still apply to adults. I was even featured in magazines and publications where I myself would describe my condition as "Well I suppose it is called RA now I'm an adult". How wrong I was! 

It was only when my own daughter was diagnosed and the volunteering I do with Juvenile Arthritis Research that I learnt that my own diagnosis is still JIA. I am, and always will be, an "adult with JIA."

Some might argue that the label of what the condition is called does not matter as much getting the right treatment. But it does matter. Had I known and understood the correct name for my diagnosis, I could have asked to see the right doctors when I needed to.  Perhaps that would have then opened up different treatment routes for me instead of the lifetime of pain that I have lived with. 

If this inaccuracy in mis-labelling JIA as RA in adulthood is happening on a larger scale, which I believe it is, then that distorts research and analysis being done into finding out long-term outcomes for those with JIA making it harder to find the answers to the questions I have as a parent of a child with JIA. 

Yes children can get arthritis. If symptoms start before the age of 16, it is JIA. 

Yes adults can have JIA, but they can't "get" JIA - remembering that symptom onset has to be before the age of 16 for it to be JIA. 

It is technically possible for someone to also get a second condition such as RA in adulthood but it is far more likely that it is a flare of their existing JIA if their original symptoms were under the age of 16. 

It is also possible to have JIA and then get osteoarthritis, either later in life as anyone else might do with the "wear and tear" of joints, or as a result of joint damage caused by JIA as happened in my case. 

As I come across other adults who describe themselves as having RA "since the age of 5" or "since the age of 13" - I know that it is actually JIA that they have but it is a difficult conversation to have to correct them. Having a chronic condition can become part of our identities as much as we may try not to let it. I believe it really needs to come from the medical profession with doctors (particularly frontline health professionals such as GPs) to be better educated in recognising and understanding JIA. That would help more people receive the right treatment throughout their lives and for those under the age of 16 to get that initial diagnosis of JIA more promptly - which I know makes a huge difference to outcomes for them and could prevent lifelong joint damage and disability. That's before I've even mentioned the risk of uveitis (inflammation of part of the eye which can happen in 1 in 5 children with JIA - left untreated can lead to loss of sight). 

So getting the diagnosis and "label" right is vital!  

* There are some very small differences in the classification of JIA, JCA and JRA, but in the majority of cases JIA, JCA and JRA have been used to describe what is now known as JIA. 

You can read more blogposts about mine and Miss T's JIA journey here

If you are concerned about a child or young person you know who is struggling with pain or inflammation of their joints or struggling to do something they could do previously, please see www.thinkJIA.org for signs and symptoms of JIA. 


Miss T's tooth trauma 3 years on

I reckon most people spend Father's day thinking about their dads or other family members but for me, Father's day reminds me of the awful day that poor Miss T suffered a horrible tooth trauma resulting in one of the front adult teeth being knocked out. 

It was 3 years ago in 2019 on Father's day that we were due to meet up with some other JIA families. Looking back, the signs were there to perhaps not attend as the weather hadn't been great but I have never been one to let others down and as the organisation concerned had created an official "event" on Facebook for the meet-up, I felt that we would be letting others down if we didn't go to the park that day. 

I wrote up about what happened to Miss T's tooth at the time as we were shocked by the lack of knowledge by the emergency services about what to do. 

However, we are eternally grateful to our own dental practice who DID know what to do to give that tooth the best chances, however slim they were. It turns out that on a Sunday afternoon there were no NHS emergency dental services available for children and so it resulted in a big emergency call out fee at the dental practice. 

These are photos from the day at the hospital where they didn't know what to do so I attempted to reinsert the tooth myself.  

And then after our wonderful dentist managed to clean-up and splint the tooth in place. 

 It was mushy food and drinking through a straw for a long while after that. 

Yet Miss T showed the most incredible bravery throughout. 

I hope it never happens to you, but if it does, it's worth familiarising yourself beforehand with what to do if an adult tooth gets knocked out because there is no guarantee that the emergency services will give you the advice you need at the time. 

I've written up about the "pick, lick and stick" message that we were told about afterwards on this post I wrote up at the time. 

She was supposed to be monitored on a regular basis by Kings Dental hospital but since the COVID pandemic began, her appointment that was due in June 2020 was cancelled and we haven't had another one through yet despite chasing up on several occasions.

She attends our own dental practice for her routine dental check-ups so I'm hoping that if anything significant was spotted that we'd know about it through the routine check-ups. 

The long-term outlook for that tooth remains very uncertain. They explained to us at the time that once the risk of infection has passed/reduced, the tooth still won't be the same as the others due to the way that it fuses to the bone making it unreceptive to orthodontic treatment and at risk of infraocclusion as she grows.  

I continue to pray for that tooth so that by some miracle it will turn out to have reintegrated back into her mouth in a way that the dentists thought not possible. It seems to have done amazingly well so far given the risks and how the odds were stacked against it and I hope that it continues to amaze us. 

Miss T at 10: Happy Birthday

A couple of months ago,  Miss T turned 10. As this blog was started the year she was born back in 2012 to keep track of all her baby milestones, it seems only right to make  sure that her 10th birthday gets a mention on the blog too!

She had the biggest growth spurt during lockdown and is now nearly as tall as me! She can fit into all my clothes. This used to be my dress at one point! 
I didn't have the energy to bake a cake myself this year but we thought this rainbow cake from Ocado was rather lovely. 
And Miss T was thrilled to have granny and grandad round for her birthday. 
Still making an effort to be socially distanced - so this was the alternative to a hug. 
Big bro helps to light the candles. But the wind kept blowing them out, 

So it was indoors for the candles in the end. 

She was also lucky to have a garden visit from her bestie on her actual birthday too! Her wonderful friend stayed in touch throughout these difficult couple of years whilst Miss T missed a LOT of school. When I compare that to my own childhood, it seemed that as soon as I was away from school for hospital stays and when my JIA (juvenile idiopathic arthritis) was so bad that I couldn't go to school that it was very much a case of "out of sight, out of mind". I remember being visited by school friends for my first hospital stay but I don't remember many, if any, school friends staying in touch beyond that with my second, longer, hospital stay and the rest of the time I was off school. So I'm forever grateful to her wonderful friend for being such a good friend and staying in touch with Miss T. 

Miss T has grown her collection of Maileg mice in recent years. It all started many years ago with Miss Mouse (shown on bottom right of photo). Then there was Amber (sitting next to Miss Mouse) and then her collection grew from there. So her mice along with a couple of new ones that arrived for her birthday got together for a birthday photo for Miss T. 
It goes without saying that we are incredibly proud of the young lady that Miss T is growing into. She shows so much courage and resilience with everything she goes through. It was tough re-starting her injections in March after a break without them but she knew and understood that it was the best way to get her arthritis under control again after it has started to flare in her jaw since last October. 

Thankfully the methotrexate seems to be working again and though she has some damage to her jaw from when her JIA began and possibly more damage from the flare, the pain seems to have subsided with her weekly methotrexate injections. 

We love her passion for the planet and always being conscious of things like her plastic consumption. She adores penguins - one of the core reasons for her eco ways and dreams of being a penguinologist. She already researches facts about penguins and draws pictures of penguins all the time! 

Miss T you are amazing. Your smile lights up our lives. We love you so much!