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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I’m still not getting out much, but I did wear two cute outfits & have a little fun this week. I used my auntie time to try out some new thrift finds. I’m quite pleased with the results.
First up was some time with my littlest niblings. The babas are walking now and so much fun. I tried my new twirly skirt and it was perfect for sitting on the floor and wrangling babies. Getting back up was a bit of a challenge, but hey ho.
On Saturday I had my first big day out in quite a while. We headed to The Hot Air Balloon festival in my Mum’s village. It was wonderful. I have always wanted to go up in a hot air balloon, but watching them take off was a close second best. My nephew was crazy excited watching them launch. He also had a lot of fun on various rides & bouncy castles. He even managed to convince his Mummy to let him have green hair. For this outing I wore another of my 2nd hand finds; an amazing cat print skirt. I went full crazy auntie & teamed it with a petticoat and nirvana vest. Then finished the whole look with a deeply hippie dippie shawl. I got some looks, but I loved it!
Today I am in recovery mode. I expect it’ll be jammies for the foreseeable. Bronan approves.
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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Last week I ran away to the seaside. My sister found a little hotel so close to the beach that when the tide comes in it splashes on your window. It was perfect.
I always feel better by the sea. Staying at The Crusoe was exactly what I needed. It’s a small hotel in Lower Largo. Right on the beach with its own restaurant and bar; the staff are so friendly and facilities are gorgeous. Lower Largo has links to Robinson Cruseo as the birth place of Alexander Selkirk (the basis of the Cruseo story). The hotel has taken its inspiration from seafaring adventures, which made it the ideal place for my pirate obsessed nephew. The staff couldn’t do enough to accommodate us (even giving the little one loads of beach toys). Our stay was a delight.
Lower Largo is a quint little town with really lovely locals. The beach is idyllic, especially when your visit falls mid heatwave. I set up camp on our picnic rug while my sister & her boy ran around digging holes and jumping waves. Being able to step off the beach and straight into out hotel was ideal. There was one flight of stairs to our room, which definitely took me a while to navigate. Thankfully waiting at top was a beautiful room. Filled with the little touches that really make your stay; Tunnocks Teacakes, fancy coffee machine, gorgeous local toiletries and a copy of Robinson Crusoe. With cool seaside decor and excellent shower they ticked all boutique boxes. The star of the show is still undoubtedly the view. Outside your window is miles of sea. You fall asleep listening to the waves lapping against building. For me, that’s bliss.
We took advantage of our location and also costed Elie. Another pretty seaside town with the most glorious beach. As before the boy and his Mummy had all the beach carry on. Auntie ly participated whilst sat on her bum. I was so relaxed that on one of their trips down to sea I actually fell asleep.
I was in need of a break and this trip fit bill. Blue skies, gentle tides and stargazing as night definitely helped my burnout. Who needs to go abroad when heaven is just over an hour away?
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I got an email from photobucket. Actually, I got several that I had ignore because I had more pressing issues. I should have continued pressing because opening the 12th email and clicking that link was a mistake.
Amongst page after page of self harm photos I found pictures of a girl I don’t fully remember. I don’t know why I say a girl, I was a woman. I seem more like a lost girl, though. I look like someone who wants to disappear. I was someone in the process of vanishing. Looking at those photos hurt. It’s painful to see how desperately Ill and unhappy I was. Even more agonising to realise how much the world approves of that version of me. A person who hated themselves so much they wouldn’t eat properly & spilling their blood felt reasonable. But hey, look how I thin I was.
I lost ridiculous amounts of weight in a very short time. I started with what I believed to be a very reasonable calorie restriction. A nice round number that I saw in magazines & tv shows. The weight came off quickly. People around me were pleased. I enjoyed the positive reinforcement. Everything else in my life was a disaster, I liked doing something that everyone was happy about. I also liked my discipline; how strict I could be. I began to relish the hunger pangs and how good I was at ignoring them. When the weight loss slowed I reduced the calories. I limited how many each meal could contain. I couldn’t eat before or after certain times. I filled up on Diet Coke. I had ‘fast’ days and just eat veg days. Rules piled up and weight fell off.
I did this more than once. The weight loss was never maintainable. Each time I started again I believed I would just follow a ‘healthy’ diet. Every attempt at lifestyle change descended into extreme behaviour. The only people who questioned this were the few who’d had their own food issues. I assured them I was ok. This weight loss was good for me. I wasn’t doing anything crazy, in fact I felt so much healthier. I’m sure the believed (or almost did) me because I didn’t think I was lying. I honestly thought the means justified the ends. Being fat was horrible. I was disgusting, I ate too much and it was terrible for me. Having some restraint was improving my body inside and out. I knew I was fudging the details a little, but I really didn’t think I was doing anything dangerous. I did eat. I very rarely threw up. The things left in my diet were all ‘good’ foods. The congratulations rolled in. Besides, I wasn’t even very thin.
I don’t even blame the people who did all the high fiving. They knew I had been unhappy with my bigger body. Those close to me knew how appalling my mental health was. It looked to the outside world like I was doing something good for myself. I seemed more confident, more at peace with my body. Of course we all live in diet culture. Thinner bodies are better. I understand why my weight loss was something to celebrate.
The professionals are another story. They should have known better. I was so very Ill. I was in regular contact with all manner of Drs. My self harm was out of control. I was getting stitched up multiple times a week. The blood loss was wreaking havoc. I had angina attacks, constantly passed out. No sooner was a blood transfusion in than I was working on getting it back out. I had already started to experience the problems that led to pancreatitis. They watched my weight rapidly drop. Climb back up. Then fall off again. Not a single medical professional ever thought to question that. They were the opposite of worried. I was praised. They loved seeing the change on the scale. I was explicitly told how good this shrinking was for me. I didn’t even lie about how I was doing it. I’d joke with nurses about ‘just not eating’. I explained my calorie restrictions and the extent of my diet to Drs. It was all excellent. Keep up the good work. Well, done you!
Even the mental health teams I was working with didn’t raise any alarms. We only ever talked about my weight loss in positive terms. They were glad it was helping my self esteem. There was never any in depth conversation about how I really felt, what I was doing or why. There should have been. They knew my history and my problems. There are so many links between self harm & disordered eating. Control being the most obvious. The triggers for the behaviours can be the same; shame, self hatred, feeling a failure, punishment. They can achieve similar results like a feeling of release or a sense of achievement. My self harm was compulsive and so was the weight loss. I was atoning and deleting the parts of me I despised. The only real difference between the two was how acceptable it was to want to be thin.
As I write this I recognise all the signs of an eating disorder. Yet I cannot accept that diagnosis fits. I can admit I had an unhealthy relationship with food. I know I used extreme methods to lose weight, but disordered eating is as far as I can allow myself to go. Intellectually I know why. I was never dangerously thin. In the midst of it I didn’t ever believe I was thin at all. Those old pictures were shocking because I have no recollection of being as slim as that person. I began my diets fat. Eventually I always returned to fat. That’s why no one ever considered an ED a possibility. It remains why I could never accept the label. For all my learning and activism there is an internalised fat phobia that I’m not sure I will ever shake.
I have compassion for my former self. I am angry at the people who should have helped me. I am happier in my fat body than I ever could have dreamed of in my dieting days. I don’t want to go back. Nor do I want to be smaller. I do however still hold this feeling that I have no right to talk about myself in certain ways. I feel fake. Despite knowing all that I know, I still can’t change the feeling that it wasn’t bad enough for an official title.
That realisation is painful. It hurts to know that nothing has really changed. There are people in the same situation right now. The medical community is still exceptionally fat phobic. If you are fat, disordered eating is encouraged. Prescribed, even. We’re still insisting people fall below a certain BMI before they can be referred for treatment. The fact that Drs are even using BMI is in itself horrendous. People are hurting themselves and the world loves it.
This is why body liberation is essential. It is so much deeper than loving one’s body. Weight stigma is systemic. Built right into the places we are supposed to turn to for help. Fat phobia is in us all. It is insidious and deadly. We all deserve better.
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It’s been a very hard month(?). Hard to be sure how long because my brain is utterly scrambled. In any case, there has been a lot of medical bullshit and I have not been taking care of business. I have been indulging in therapeutical level loud music, these are the songs that have been on repeat.
I Do This All The Time
Since seeing Self Esteem at Trnsmt. I have been a tiny bit obsessed with this song. Self Esteem is awesome in general, but this song really hit home. Its a cool uplifting anthem, with a ‘you got this’ message. This song has summer has hit written all over it. I suspect its success might be in part because of how well Self Esteem understands her audience. The lyrics really get into the thoughts and concerns of so many women. Our tendency to believe we’re not making the right choices, picking the right people or being good enough at all. Some of these lyrics felt like they were written just for me, especially the ‘you’re a stocky girl’ & ‘it was really rather miserable trying to love you’ lines. It is reassuring to hear someone get that and dispel it all in one upbeat banger. You didn’t think you’d live this long sun happily will get me every time.
I Am Not Ready
I discovered Olivia Broadfield via The Split. This soundtrack made the series even more heartbreaking. She is a lyrical genius. I feel these words in my bones. I am a sucker for a sad song and this entire album is perfect. I Am Not Ready works for either grieving someone who has died or lost relationship sense. Oh man, if you’ve experienced either, this one cuts deep. Broadfield’s beautiful voice begging to know if it ever gets easier is a killer. Let’s face it, we’re never ready to say goodbye to the people we want to keep.
I can’t even remember where I heard this song. I don’t know anything about Beach Bunny nor have I checked out their other music yet. I just find joy in this song. It’s a dreamy, lovey dovey, summer tune. It makes me smile when I’m stuck in a stifling waiting room. That’s good enough for me.
Worry Bout You
I found Kendra Celise on Tik Tik. She is a singer/songwriter with a kick arse country vibe. She was inspired to write this song after a phone call from her ex husband’s new girlfriend. I have to say I think this is the coolest way to deal with some daft bitch bothering you. Her lyrics are clever and this song is so good when it’s blasting all through the house.
Bronan isn’t always as delighted with my loud choices, but he does always forgive me.
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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.
What do I do when I feel crap all the time? My nails!
Absolutely love this deep red colour. I fell in love with Chanel Rouge Noir many years ago, but now go for the more ethical Barry M vegan polish. I love a bit of negative space on a manicure; it’s an easy way to accomplish a cool effect.
Last week I fancied some really bright cheery colours. This mani was fitting for Pride month. Unfortunately they didn’t survive long after a trip to the pool. Good whilst it lasted.
Finally, my attempt at impressionist type floral design. I don’t think I quite hit the water lily look, but they are lovely.
And talking of that trip to the pool, it was wonderful. My sister, my bestie and I took the little ones swimming. I am much more mobile in the water. I love being able to chase them and have a proper carry on. This time I was a shark, kraken and an octopus. Much fun was had. Outfit wise I went for cute and comfy. My beloved Pockets and Sedition palazzo pants*, slouchy tee and ‘sorry not sorry’ my old saggy boobs sans underwiring.
* Brand Ambassador. Not gifted or sponsored.
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