Sweet Little Mystery…

Regular readers might have noticed the downturn in my long form content. There’s a very simple reason for that, chronic illness.

This year has been one thing after another. The last few months in particular have been gruelling. The problem with having chronic conditions is you often find yourself fire fighting. There are so many symptoms, it is impossible to properly deal with everything. You end up addressing the most problematic at any one time. Plus of course it can be hard to get Drs to really investigate many issues. Often they’ll just chalk up to an already diagnosed illness. Sometimes they’ll try to mitigate that symptom & others you are basically told you’ll have to live with it. I always have questions that aren’t answered. Unfortunately I run out of steam to pursue them. When you are always tired & in pain you must pick your battles.

Of course being fat complicates matters. The first response more is usually something about losing weight or questioning my diet. When I fight against that there will be what I call ‘subterfuge tests’. I’ve had more fasting bloods & cholesterol tests than anyone ever needs. After years of Drs refusing to believe anything I tell them, I find it is easier to just go for the bloods & prove myself right.

The last few months have been relentlessly hard. Pain has been consistently more severe. Digestive tract refuses to behave. I’m fainting daily. I’ve had the worst bout of insomnia of recent years, but even when my body eventually gives into the exhaustion; I awake feeling just as tired. Brain fog has punctured my old articulacy. I struggle for words in everyday conversation. I have lists & notes for every little thing. If it isn’t written down, it will never happen. My skin itches, my head hurts, alarming bunches of hair are falling out, I’m breathless, nauseous & anxious. ALL THE TIME.

I have suspected that something was going for a while. I can’t explain except to say that my body didn’t feel like it belonged to me. These ailments have been breaching my outer limits. So, I had some blood tests that revealed elevated numbers. My Gp wanted to test again a few weeks later to rule out a random blip. They came back slightly higher. A new medical mystery was born.

Three blood test bottles

The high numbers are related to my liver function. There isn’t an obvious reason for my liver to be pissed off. I hardly ever drink alcohol, I don’t eat meat or dairy, no signs of diabetes. It doesn’t make much sense. Possible culprits include my missing gallbladder & bile duct complications, covid & no doubt my weight will become a factor too. I await scans & next steps.

All this to say, I am currently operating on a wing & prayer. And I’m not even religious.

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Cut + Run…

When one of the world’s most illusive artists decides to stage a retrospective in your city, you have to go. Banksy said they choose Glasgow because they were drawn to impromptu art often found in the city.

The Front of GoMA. Stone columns with triangular roof. With a Banksy banner hanging down one column.

A prime example being the cone permanently perched upon the Duke of Wellington right outside GoMA. For years Glasgow City Council tried to put a stop to the cone hat. In the end the removing & preventing was costing so much that they had to embrace the cone. The spirit of those folks who just kept climbing on up obviously appealed to Banksy as the cone appears in clever ways throughout the exhibit.

Duke of Wellington on a horse statue with a traffic cone on his head.

Background covered, let’s get down to the art. The show was even better than I hoped. Very clever staging and preventing the use of phones meant there were plenty of surprises. The art itself chimes with many of my takes on the world, so I obviously enjoyed the context. It was interesting to have look at the thoughts behind pieces I had seen before. Also very cool to see the evolution of the artist. As we all had to lock up our phones, the offer of free Polaroids was a nice touch. It’s a big tick from me.

Accessibility wise GoMA itself is good. The set up of the exhibition makes things a little trickier. The very beginning of the exhibit might feel a little tight for wheelchair users. There are also only two places you could sit throughout, which I found hard going. It’s worth calling in advance to ask for accommodations you need.

The graffiti wall as you leave the building is a fun thought. Very cool to let folk release their inner creativity.

Tickets & Info here.

If you like what I do you can support me here or on Patreon.

Care a little…

About a week ago I had a telephone appointment with one of the Gps from my practice. I haven’t had much interaction with this Dr and it did not go well.

After a brief conversation about the symptoms concerning me, she suggested we start with some basic tests and swiftly moved on to checking my weight. I asked why she wanted my weight and explained if not medically necessary I did not want to be weighed. The Dr replied that she would like to calculate my BMI. I told the Dr that BMI wasn’t scientifically sound and I didn’t want to discuss it. I’m sure you can guess how the appointment went from there.

It was the usual gaslighting and time wasting. According to the GP she would be negligent if she did not assess my BMI. I reiterated my objections to her weight focused approach, all of which were dismissed. The appointment was taken up with this back & forth instead of actually discussing my actual problems. I have informed various practitioners at the surgery about my preferences with regards to being weighed, discussing weight loss etc. I have disclosed my history of disordered eating and how intentional weight loss is detrimental to my mental health. I’ve also discussed the harm caused to me by weight stigma, which includes near fatal misdiagnosis and long term health implications. All of these conversations should be recorded in my notes as per my request. Yet still, I find myself regularly having these interactions whilst trying to access medical care.

A blue bathroom scale that reads doesn’t matter

Given our in-depth conversation about why I wouldn’t be weighed without solid medical reason, I had hoped that might be the end of it. I was fairly surprised when I saw the nurse yesterday for bloods and she asked me to ‘hop on the scale’. I gave her my standard, I don’t do weighing unless medically necessary. The nurse then told me that the Dr had specifically noted that she must makes sure she weighs me. I was internally furious, but calmly explained to her that I had already told the Dr I wouldn’t be doing that. Luckily, she left at that.

I am chronically ill. I have lots of interactions with medical folk. I am flat out exhausted before we get to the fat phobia. I often don’t have the fight in me, but I’m forced into battle. There is no let up. If I don’t assert myself I will not get the care I need. I know from bitter experience just how dangerous that is. The problem remains that even when I do stand my ground, the medical profession is want to shove back. Either I am entirely ignored or I am labelled difficult. It’s endless and wearing.

The persistence of these attitudes feels like a war of attrition on the patient side. It’s draining. No matter how many times I make my wishes known, they are ignored. Coming to appointments armed with facts, evidence and clear description of how this weight stigma harms me, makes no difference. Today was a classic example of this. I wasted my time discussing very personal & traumatic experiences with a Dr in order to justify declining to be weighed. She simply set it all aside and took action that she knew would harm me. I shouldn’t have to justify not wanting to do things that are not necessary or helpful to my treatment in the first place. However, it is clear regardless of how much time & energy I invest in explaining why intentional weight loss talk is detrimental to me, medical professionals will not listen. The stress of always having to be prepared for a fight is immense.

I will of course take steps to address this latest event with my practice. I can only hope they take action to protect me. It won’t bring the discussion of my weight to a close. There will still be another specialist, nurse or hospital consultant who views me as first fat and second a person in need of medical care. Right now the knowledge of that is way too overwhelming.

If you enjoy what I do you can support me here or on Patreon.

How I’m feeling now…

I have been somewhat absent here. Anxiety has engulfed me. There is a very specific reason for the anxiety, unfortunately it is not a thing that I control or fix.

Theoretically being able to pinpoint the trigger means it I should have a definite end point. However, since resolution is not within power the uncertainty persists. I can’t even begin to address the issue until next week, which leaves me endlessly playing out scenarios in my head. It is sickeningly stressful. The fear that has been sitting on my chest for a week feels like it’s attempting to climb up & grab for my throat.

I’ve tried every calming weapon in my arsenal to little effect. When I managed to leave the house every sensation was painfully amplified. I was both submerged in sound & every noise was taking place inside my body. Likewise, every living being in my approximate vicinity seemed claustrophobically close. I felt dangerously on display & incapable of making a quick retreat. Sitting still was impossible, but moving left me gasping for breath. I couldn’t decipher if it was Pots or anxiety related. The more I worried about it, the less able I was to catch my breath.

Outside was brutal. Inside is merely a more measured torment. The slow drip of water torture rather than the ripping out of finger nails. I remain on high alert. For what I don’t know; there is no physical threat. My mind stubbornly refuses to divert course. If I pull it astray thoughts quickly revert to dissecting worse case situations. This is very much a wait and see kind of issue. Strategising & replaying every possible outcome cannot help me.

Still, I lie awake at night with my heart pounding. When I finally dip into sleep my subconscious conjures catastrophes that aren’t even feasible. I awake in a panic that fades to dread. An awful gnawing fear the dark summons in the certain absence of slumber. I never feel more inclined to screaming than when imprisoned in insomnia. 3am worries are no one’s friend.

Of course I reassure myself that I can survive subpar outcomes. I do know that this extreme horror level of anxiety will not last forever. I’ve coped with worse & there will be much better days. My mind simply doesn’t care. We’re hyped up to life or death threat defence and it has no intention backing down. If I had a bunker, I would be in it.

If you like what a do you can support me here or on Patreon.

This week I was mostly…

Taking it easy. I’ve been trying to write, trying to sleep and listening to these tunes.

Open up Your Door by Richard Hawley was playing in a waiting room. It’s pretty good waiting room music. The gentle jingly instruments swelling into smooth waves has a soothing effect. Hawley’s smooth easy listening, but cooler voice pleasantly washes over you. The lyrics are almost unimportant, the overall sound is the appeal.

I can’t work out where I first heard I Think I Like it When it Rains, but it immediately stuck in my brain. A little Googling later I discovered it was by Willis and promptly added it to a playlist. It gives me a Lennon, Don’t Let Down vibes. I love the hopeful melancholy. It encapsulates the feeling of one of those thinky rainy days.

If I were a fish corook (feat Olivia Barton) is the catchiest, feel good Tik Tok hit. I can’t resist the cheery message and choiry chorus. If you need a little sing a long pick me up this is the one.

I am of course loving all of Lewis Capaldi’s new releases. I am dying for the new album, How I’m Feeling Now in particular struck a chord. I respect his openness with regards to mental health and his ability to capture the experience in his music. The desperate frustration of battling yourself comes through. Anyone who has dealt with depression or anxiety will feel it when he sings,

‘I’m always stuck inside my fucking head’

I hadn’t heard of Eloise until three days ago and now Friends Who Kiss is on my repeats. I like her gentle take on the break up genre. Stripped back and bitter sweet; ‘love is not in love’.

Bronan has been helping with the resting.

If you like what I do you can support me here or on Patreon.

My head is spinning…

It has been a week. Sometimes this chronic illness business is depressingly predictable. Others it throws you a delightfully new problem. The past week has combined both. Lucky me.

Let’s start with the spoonie admin. Apparently because I have Pots the airline requires proof from a Dr that I am fit to fly. I am fit to fly. I flew last year with no issues. I don’t require oxygen and I can follow the safety instructions should the worst happen. None of which makes any difference to the airline people. This letter has to be signed no more than 30 days before departure. Months ago I made an appointment and explained what it was for. So, imagine my surprise when I turned up at the prearranged time only to be told that their policies have changed; my GP surgery can no longer provide this service. They suggested I contact a private clinic. Since I would dearly like to go on my long awaited holiday, I did just that. After quite a few no can dos, I found a practice who could help. Huge sigh of relief. Right up until they emailed the cost. Oh, what I would give for a body that behaves.

The week then steered into familiar territory. A night of unmanageable pain culminating in a disastrous faint. My glasses were knocked off & one lens shattered in the fall. I of course landed face first in the mess, then proceeded to repeat the passing out & smash my head. Cue a day of blood tests, butterfly stitches and feeling appalling. Oh and obviously more cancelled plans.

I tire of discovering new hurdles and stumbling over the old ones. The week ahead will be mostly conducted from the safety of home. I intend to sit still, get some writing done and try very hard not to be so much trouble. Health is wealth in more ways than one. Bronan is relying on me to keep him in the luxury he is accustomed to.

If you enjoy what I do you can support me here or on Patreon.

At least I’m trying…

In the latest of my body’s ridiculous tricks, I have shingles. When I’m run down I often succumb to random bonus infections. Shingles is also brought on my stress, which makes sense because January was a shit show.

I think I’ve had some lucky for once as I don’t seem to have a really severe case. The rash is painful (although not as bad as I’ve heard others describe it), but all the cold/fluey symptoms were short lived. It feels like a burn and if anything even slightly touches my skin the sensation is akin to a shock. My GP has added some pain killers to my usual lot, which are making it all manageable. They’re also making me super tired and a little spacey, which is having an effect on my creative output. I hope you’ll bear with me as I try to get back to match fitness.

ly is wearing heart shaped glasses and looking a little dazed.

Supercut of me…

Last year was tough. Long covid/Pots really did a number on my already subpar health. It was hard to keep on top of even basic daily tasks. All aspects of my life suffered. In an effort to shake that not quite enough feeling I’ve raided the brain for my 2022 highlights.

I contributed to the book Rebel Bodies by Sarah Graham. It’s an incredible piece of work about the gender gap in healthcare. Sarah covers the intersections of gender, weight, age & disability whilst deconstructing the barriers women & non binary people face when trying to access appropriate medical care. I am so proud to share my story of medical weight stigma and be part of this book.

In April we took my Mum on a birthday trip to Salzburg. She had a big birthday at the end of 2021 & we wanted to do something special. Mum loves The Sound of Music & has always talked about going to Salzburg. This year, she finally got there and it was magical. We stayed at Schloss Leopoldskron, where the movie was filmed, took a private Sound of Music tour and had a generally amazing time. Salzburg is incredibly beautiful and taking Mum on her dream holiday was wonderful.

At the very beginning of ‘22 I was a guest on the Anti Diet Club podcast. The pod creators Gillian Wilson and Tamsin Broster are dedicated to helping others divest from diet culture. I love the work they do and was honoured that they considered my voice worth hearing. It is such a pleasure to connect with others who are committed to fighting fat phobia.

This summer I got to revive a love from my youth. I thought festivals were a thing of the past for me, but thank to TRNSMT’s comprehensive accessibility accommodations I was back in the game. Watching bands, whilst sipping cider in the sun with my bestie & sister made me feel 22 again. Screaming along with The Strokes as the the sun went down was such a highlight.

This one might seem small, but felt significant to me. The Guardian journalist Martin Belam recommended me in his Friday Reads. Having a writer I respect enjoy my work enough to share it felt good. Especially in a year when my health has interfered with my creative output.

Last, but never least is of course being an Auntie. It is my biggest joy. I am so excited to watch all of my niblings grow. Last year they continued to surprise & impress. I am endlessly grateful to be part of their lives.

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A very big house in the country…

It was my birthday last week. I have reached the enormous age of 42 and it was a chill affair. I spent the actual day with my wonderful bestie and her little monkeys. Then at the weekend I was whisked off for a lovely surprise. I was instructed to pack a bag and bring a swimsuit. No further information was forthcoming.

We set off early on rainy Saturday morning and four ish hours later we arrived at Thainstone House. The sun was shining up north and our destination was perfect. A beautiful country house hotel set in gorgeous grounds. Complete with swimming pool & spa; I was in heaven.

Country house hotel covered in Ivy
Thainstone House

My Mum & Sister were behind the treat. Of course my nephew was along for the ride. We had a weekend of fine dining, swimming and carry on in luxury setting. It was a gorgeous birthday present.

Is it a hotel stay without a pic in my pants?

After dinner and late swim on Saturday we introduced the boy to Monopoly. He had been dying to try it and it turns out he is a shark. He showed no mercy as he bought up streets and flung hotels on them. His absolute glee every time I landed in jail was hilarious.

On our way home we stopped in Inverurie for a little shopping and outfit photos. The boy managed to leave with a monster truck & Gran stocked up on enough expensive scarfs to last a good few winters. All in all a successful weekend.

Not bad for an old bird.

Pale September…

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.

Gold pumpkin candle holder on bookcase with picture frames

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