It’s the October week holidays here. Of course that means some fun adventures & more spooky nails. It’s getting chilly out there, so I’ve been getting into the cosy looks.
I went a bit horror on the nails and tried out some chuckyish stitched wounds. I didn’t want them to be too gruesome, so nothing realistic here.
On Wednesday we decided to introduce my nephew to a place my sis & I have loved since childhood. The Burrell Collection is an art gallery/museum in Glasgow that has recently reopened after a refurb and shake up of exhibits. The exhibits are presented in the most incredible building surrounded by woodlands, but in the middle of the city. It is one of my very favourite places and it was wonderful to see the boy enjoy it too.
The revamp is great. They have maintained the heart of the collection whilst adding excellent interactive aspects. The boy loved playing the games & puzzles, all of which helped him better understand the exhibits. The cafe has a great vegan & child friendly menu. The Burrell also ticks the accessibility box. Lots of space to manoeuvre, lifts to all exhibits, loads of places to sit down when you need to rest.
After The Burrell we checked out the also revamped swing park. Thus I needed to be both cosy and waterproof. I opted for this lovely jumper dress & light weight rain jacket; both presents from my Mum.
I chipped my Chucky nails, necessitating a premature change. I went for some creepy trees and sparkly bats. Let’s hope I can manage not to wreck this design right away.
My nephew has recently developed a love for golf; crazy golf in particular. Today we indulged that new found passion with a trip to Paradise Golf. He loved it, claiming two hole in ones & ultimately the game. Auntie ly struggled a little, but luckily I had my perfect little man to play for me when I needed a sit down.
We had a little sushi for lunch, picked up some shark wellies & grabbed a doughnut before heading home. It’s always too hot at Xscape and I kept that in mind when choosing my outfit. I wore a bunch of old favs today including my comfy shoes & a skirt with pockets!
I just lit the first pumpkin shaped candle of the season. It is rainy, windy and cold. The timing is right.
Today did not bring my favourite autumnal weather. The gloom did, however suit my mood. I had the long awaited appointment with the consultant this week & she had no good news for me. PoTs ✔️ Treatment to improve symptoms ✖️. I can’t take beta blockers & I’m already doing everything that is supposed to help. She also thinks I need to see someone else about the extreme breathlessness. So, it’s status quo with the passing out every two seconds. Oh and back to square one on referrals & tests re breathlessness. I’m very tired and exceptionally fed up. This is what happens when I pin all my hopes on one Dr.
On the bright side I live in Glasgow and it’s nearly October. I am certain I will have many opportunities to wallow in gloomy weather. I also know a very annoying man. No doubt he will frustrate me so much that I will occasionally forgot almost no part of my body works.
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If you are a regular reader you will know that I have been going through a process of diagnosis related to Long Covid complications. I had hoped that I would have definitive answers by now, but alas, my body is being a dick.
When last we spoke I was awaiting tests to confirm or rule out POTS. Well, after it seemed unsafe to continue with the first part of that test, the second was scrapped. Now I have more waiting to do. The consultant will decide our next move. I’m really disappointed as I had thought we were close to diagnosis. I know the idea of hoping for positive tests might sound strange to most, but the sooner my condition is labelled, the sooner it can be treated. Being chronically involves so much limbo. Waiting to see drs, waiting for tests, waiting for treatment, waiting to see if you respond. Having someone say this is definitely the problem and here is the plan, is a huge relief.
In the meantime my spoonie adventures continue. Lots of pain, fatigue and dizziness are the norm. Fainting at the drop of a hat and constantly fighting to catch my breath have further restricted my activities. I spend way too much time at hospital appointments, and too little doing what I love. I’m struggling, but trying to remain even a little upbeat. On we go.
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Yesterday I did a thing that I thought I could no longer do. Let me tell you, it felt fucking awesome. For the first time in more than a decade I hit a festival and I am going to tell you all about it.
Trnsmt Festival takes place on Glasgow Green in the centre of my dear home town. Back in my day the Glasgow fest to be at was Gig on the Green. In my youth I saw Feeder, Pulp, the Chilli Peppers, Foo Fighters, Travis and so many more on this big patch of green in the middle of the city. I loved those days of dancing, drinking and screaming out lyrics. Unfortunately, festivals had been added to the list of the things chronic illness made impossible.
Then came Trnsmt with its excellent accesible facilities and my beautiful sister with her VIP tickets. All of a sudden 41yr old, mobility impaired and pain inflicted me is back with the band(s). They put the effort in to make the festival as accessible as possible. With accommodations for hearing & sight impaired customers. Disabled viewing platforms with amazing views, accessible toilets that catered to all needs, free water taps to fill up and no queue sections at bars/vendors. There was an area for guide dogs to relax as well as a cool chill out zone for people who needed it. Blue badge parking & disabled entrance which cut the trek to the action was also available on request. Of course their were first aiders and medical assistance points. The accessible passes were easy to apply for. A quick online form, proof of PIP (if in receipt, passes were available with a short explanation of your needs without evidence) and Blue Badge number for parking were all that was required. Free companion tickets were available via the same process. I was able to enjoy the full festival experience whilst also having all my needs met. I can’t speak for everyone, but the organisers get a big round of applause from me.
As good as the accessibility was I was still grateful to have those VIP bands. The VIP area was a great staging ground for our day. We were able to sit down, eat and plan in comfort. The toilets in this area were also a huge step up from any porto loo. Extra bonus of separate VIP entrance & exit to avoid the crowds. All considered, the ticket prices aren’t that much more, I would definitely recommend. With the sun shining, music in the air and our free Prosecco in hand we headed into a day to remember.
First on our list was Wet Leg; a band my sis was dying to see. I thought I didn’t know them, but turns out they are big on Tik Tok and I already loved a few of their songs. My bestie and I thought they sounded a lot like the Riot Grrrls of our youth, but the kids were still loving them. After a cider on the grass and a lot of help getting back up again we headed to the King Tut’s stage. Comfortably seated on the viewing platform we bopped to CMAT and Self Esteem. Self Esteem was bloody good, definitely added to my Spotify likes. We could see the crowd demographic shifting to our age group as Maximo Park hit the stage for an energetic set. The cider continued to flow as we enjoyed Jimmy Eat world and then headed back to the main stage for the headliner.
The Strokes were superb. Classics mixed with newer stuff. An amusing jam whilst an amp was fixed. Some slightly odd banter and even a nod to Monty Python. I had missed the feeling of partying in a field with thousands of other people more than I knew. Watching the sun go down as your favs blast out songs you love is quite the buzz. I have so many amazing memories set to The Strokes, most of them with my sis and Pam. It was incredible to be making more with them.
The vibe at Trnsmt was just like the old days. Friendly, drunk and pleasantly raucous. I particularly loved all the body liberation on show. Folks of all shapes, sizes, genders and ages rocking whatever they wanted. All looking fabulous and giving zero fucks. I was also chuffed to discover that I haven’t lost all my party girl credentials. I can still guzzle the cider without embarrassing myself. Even better several pints and a tonne of water in, I was still able to go the entire day with visiting a loo. Anyone who has ever been to a festival (or whose every step hurts) knows that is the ultimate skill.
The day was all the better for being with my sister and best friend. They always help me without making me feel like a horrible burden. Plus of course, they are the fucking best fun ever. Here’s to accessibility and good times!
The sun is out and I have a had a nice week. Here is what is have been up to.
I had a lovely time with some of my little ones. Everyone was feeling snuggly this week, so auntie ly got all the cuddles.
The wildflowers I have planted have come out in force this year and they make me so happy. I have these beautiful Marguerites at my front door that make me smile every time I leave the house. Bees appear to love them and this week ladybirds were also enjoying my blooms.
On Thursday I met my very favourite man for drinks and some chat. It was crazy hot in Glasgow so I opted for a super floaty and light outfit. It was nice to be out and having some adult conversation. Much fun was had.
Unfortunately my body rebelled and Friday was a festival of pain. It’s looking like a weekend of rest and recovery. I hate that there is always a price to pay, but I still really cherish the days I get to do lovely things.
In my usual very late to the party I have lately been getting into YouTube. It is one of my new insomnia coping strategies. Since I am all about sharing, here are the channels I’ve been watching in the wee small hours.
If girl boss/self help influencers drive you crazy, Keyas World is the perfect counter point. It feels like toxic positivity is on the rise. Social media is full of no excuses, manifest it, take some supplements bullshit; it infuriates me. It’s all a con, they always have something to sell you and that product is usually snake oil. They target vulnerable people without the credentials to justify the advice they spew. I love the way Keya’s World debunks these charlatans with humour whilst highlighting the harm this rhetoric can do.
On a similar theme there is Okay-ish. This YouTube channel & podcast is the work of Maryellen Dance, a licensed mental health counsellor. She takes on self help influencers who offer unqualified mental health advice. If you have ever watched Rachel Hollis or Mel Robbins and came away feeling shitty, you need to check out Okay-ish.
I know why I watch true crime content; it makes feel more prepared to know all the insane tactics that dangerous people use. However, I do not know why I tend to consume it in the middle of the night. In any case when I can’t sleep ThatChapter’s non sensationalised take on true crime works for me.
I can’t get The Late Show With Stephen Colbert on any of my streaming in the UK, so I was very pleased to find I could watch most of the show on YouTube. He has good guests, his monologue is funny and he just comes across as a nice man. The fact the I find him yummers doesn’t hinder my enjoyment either.
Finally, I have found YouTube to be a great resource for finding gentle Yoga & Pilates. I can’t manage much on the exercise front. Being able to do accessible routines at home has been very helpful. My current favs are Yoga with Uliana and Nhs Pilates for Beginners. Both have wide range of videos for different abilities, the nhs one is great as they have videos for specific problems. Exercise in my living room is excellent for me as getting to a class would likely use up all available spoons!
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If you have been eagerly anticipating the second part of holiday escapades, today is your day. When last I left you I was chugging out of Munich. So, let’s get going on magical Salzburg.
Our trip was a 70th birthday present for my darling Mum. Her favourite film is The Sound of Music. She never tires of Sister Maria and all the Captain’s children. Thus our (& now the grandkid’s) childhoods overflowed with edelweiss & doe a deer. Mum has talked about visiting Salzburg forever, the big 7-0 seemed the perfect opportunity to take her there. Purpose explained it won’t surprise you to discover that we stayed in the hotel where they filmed the movie.
Schloss Leopoldskron was a dream. Everything about the hotel is luxe. The rooms are gorgeous, the views are breathtaking and you have breakfast in a ballroom.
The hotel is gated. When you arrive it feels like you have entered a secret world. Wandering around the grounds I grew up watching on screen was so lovely. Sound of Music aside, it is a beautiful place. The grounds sit right on the river, looking out onto the most picturesque mountain scape. The only sounds are the ducks & geese on water. The air feels fresher. It is a wonderful spot for a complete escape from real life.
The hotel (& Salzburg in general) aren’t big on the film connection. It wasn’t a hit in Austria for various reasons & the hotel is keen to focus on its links with Harvard. That doesn’t take anything away from the experience if you are a fan.
Since we are fans we booked The Sound of Music Tour. As it was a special trip we opted for the private tour. It was expensive, but felt it was worth it. The hotel doesn’t grant access to the tours, so if you aren’t staying you can only see the captain’s house locations from across the river. We were very happy to have had access to those spots, but there is still plenty more to see. Our wonderful guide, Alenka knew everything there was to know about the film & the city. She led sings songs on the drive out to the mountain locations & made the experience a total delight.
All of the locations on the tour were accessible. The group tour is on a coach, which would present accessibility problems. Our hotel had great accessibility; lifts in both buildings, wheelchair accessible entry and adapted bathrooms (on request). On the Covid front I felt pretty safe the entire trip. Masks were mandated indoors and we had to present our vaccine passports to enter any premises.
The final chapter of my holiday saga will be coming soon & it includes a castle.
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If you are at all interested in dismantling diet culture you will be aware that new government legislation regarding calories on menus has now come into force. The legislation is part of the government’s plan to tackle ‘obesity’. Whilst I have a lot to say on that larger topic, I’ll stick to the calorie information for now. It will come as no surprise that I am not in favour of this development.
As a fat woman who spent years of my life embroiled in yo-yo dieting I know how dangerous constant calorie counting can be. In the depths of my disordered eating I was obsessed with calories. They were my enemy and required constant monitoring. I had calorie based rules for everything. Limits for every meal and limits for the entire day. If I was going to drink alcohol I wasn’t allowed any food. I counted the calories burned during exercise in an attempt to cancel out what I had consumed. I knew & counted the calorie content of everything; a smint, a grape, a sip of wine. Calories were omnipresent. It was an exhausting battle against my body’s basic needs and I was miserable. My quest to be thin damaged me, physically & mentally.
I’m not the only one nor am I the most severely impacted. We live in a world that is constantly reinforcing the message that smaller is better. Putting the calorie content of every item in every menu only compounds that. It won’t encourage ‘healthy eating’, everyone already knows what foods are full of saturated fat. What it will encourage is distorted view of what a healthy lifestyle is. It will support the diet culture narrative; fewer calories are better. Looking at the numbers every time we go out to eat will reinforce an unhealthy relationship with food. People will feel guilty for ordering the dish they want. It’ll trigger obsessive thoughts and behaviours in those who are dealing with or have experienced disordered eating. It will cement the connection in the collective mind between health and calorie control.
I posted about this legislation on my Instagram stories today and have already received multiple messages from people who have been distressed by seeing these menu additions. These are people trying to claw back control of their eating. People who have worked hard at ignoring that voice in their head telling them what they can and cannot have. They’re scared. Genuinely frightened of how they feel when they see signs telling them how many calories an adult shout eat in a day. Worried about the thoughts the calorie count on their coffee provokes. This isn’t a surge towards a healthier society, it’s a huge step backwards.
The problem with this move is the thinking from which it stems. Our government is telling us that being fat is a problem. That fat people are a burden we must shift. That isn’t true. There is no proven way to permanently make a fat person thin. Diets do not work; within 5 years 95% of those who intentionally lose weight will regain all they have lost and more. Calorie restriction is not sustainable. More over, it is not good for you. It ignores the intersections between weight and poverty & disabilities. Not to mention the impact of medical weight stigma on the health of fat patients. There are many lifestyle changes a person can explore if they want to improve their health. Focusing entirely on calories and weight loss is not one them. Health and weight are not intrinsically linked. Adding the calorie content to menus is dangerous. It sidesteps the issue of public health and props up stale old diet culture tropes.
I am not a doctor or an expert. I am merely an informed former victim of the diet industry. I am a fat activist and as such I can see that many people may dismiss me as having an agenda. With that in mind I point you towards the following resources.
As I have mentioned, more than once, I having been some extra health issues. Yesterday I saw my GP and she gave me some answers. Unfortunately they were neither want I expected or wanted them to be.
It seems that long covid has become permanent a more of a problem. The tachycardia and breathlessness that I have been experiencing since having covid in Oct 2020 have been significantly worse over the last few months. I am breathless after a few steps. My head spins the minute I stand up. I faint daily. My heart tries to burst out of my body and my chest hurts. All the time. In the past when I felt like this it has been related to aneamia & b12 deficiency. I have had lots of issues with really low haemoglobin and although I never get to ‘normal’ my bloods aren’t dangerously low at the moment. We did a bunch of treatment, but I didn’t feel any different. I had some more tests, kept a symptom diary and recorded my heart rate a few times a day. My GP’s conclusion is that covid has damaged my heart function.
She is fairly certain that I have some kind of heart arrhythmia or PoTS. The prospect of neither fills me with joy; PoTS in particular is very frightening. I have been referred to cardiology and more tests will ensue. I really expected these issues to be related to existing conditions. It was a shock to be presented with a possible new diagnosis. The thought of these symptoms not improving or even worsening is overwhelming. I have enough health problems. I don’t need anymore.
All of this to say two things. Covid is no joke. Even if you get through the initial illness ok, there is no telling what it will do to your body. Please don’t pretend this pandemic is over. There are still huge communities that of sick and disabled people who are high risk. Even healthy people can be really badly effected. Wear a mask, keep your distance, wash your hands! None of these things are hard to do. And, I am feeling scrambled. I don’t know how to process this new information. Physically I am a mess. I’m very apprehensive of what is to come & my head is all over the place. So, please bear with me if things get inconsistent around here.
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