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.
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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.
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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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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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.
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