Disabilities

How I’m feeling now…

~ somethinginthewayshemoves

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.

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My head is spinning…

~ somethinginthewayshemoves

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 accustomed to.

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

Supercut of me…

~ somethinginthewayshemoves

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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My week in spooky season pictures…

~ somethinginthewayshemoves

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.

Pale white hands with stitched wound design manicure

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.

Long white corridor leading to huge window looking out to forest

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.

White woman and child playing an interactive game
The Burrell Collection interior
The Burrell Collection interiors

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.

Fat white women with hands on her hips wearing blue jumper dress& khaki rain mac
Dress – In The Style
Rain Max – Marks & Spencer
Tights – Pretty Polly
Glasses – Where Light

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.

Child playing crazy golf

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!

Fat white woman with hands on her hips wearing swing skirt and t shirt
T-Shirt – Curated By Girls
Skirt – Lindy Bop
Tights – Snag
Pillow Slides – Primark

Pale September…

~ somethinginthewayshemoves

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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Why am I like this?

~ somethinginthewayshemoves

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

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Last night…

~ somethinginthewayshemoves

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.

Necklace – Topple and Burn
Sunnies – Where Light

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.

Dress – Simply Be

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!

My week in pictures…

~ somethinginthewayshemoves

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.

ly is cuddling baby twins and a four year old

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.

Marguerites and pink flower bud surrouned by greenery d

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.

ly is standing with one hand on hip wearing sheer black maxi dress
Dress – Primark
Kimono – Simple Be

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.

Black and white cat stretched out asleep on a purple sofa
Bronan approves of the plan to rest.

Video killed the radio star…

~ somethinginthewayshemoves

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.

Women with a picture of brain on her head. Brain scan images behind her. The words Brain Scam at the top

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.

Pink background with white script 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.

Screen shot from that chapter YouTube

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.

Stephen Colbert with nyc in the background. Text says the late show with Stephen colbert

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!

Women in pink leggings doing crossed legged Pilates stretch . Txt reads nhs Pilates for beginners

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