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.

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.

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

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

If you enjoy my writing you can support me on Ko-Fi

Up in my air balloon…

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.

Skirt – Thrifted
Vest – Primark
Shawl – Gift

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!

Vest – Very Old
Skirt – Thrifted
Petticoat – Lindy Bop
Shawl – Gift

Today I am in recovery mode. I expect it’ll be jammies for the foreseeable. Bronan approves.

Why am I like this?

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.

White women wearing large glasses and a mask is looking at camera
Worn out after test fails.

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.

Long hospital corridor

If you enjoy my content you can support me on Ko-Fi.

I Do This All The Time…

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 sung happily will get me every time.

Prioritise Pleasure Album Cover.  As slim white woman with blonde hair wearing black bodysuit , black hat and black knee high boots. She is posing with her arms in the air

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 in either a 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.

The Split Soundtrack Cover. Four white women of various ages looking sternly at the camera

Cloud 9

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.

Cartoon of a women in shirts and t shirts. Lying in the ground with her legs in the air, holding a bunny in her chest

Worry Bout You

I found Kendra Celise on Tik Tok. 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.

White women with blonde hair sitting on the back of a pick up truck holding a guitar

Bronan isn’t always as delighted with my loud choices, but he does always forgive me.

Slightly grumpy black and white cat.  He is lying on a purple sofa with his paw on a pale arm

If you enjoy my writing you can support me here or on Patreon.