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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I’ve had some good Auntie time this week. Since my non auntie time has been frustrating and energy sapping I did sneaky little outfit repurpose.
My littlest niblings turned two this week, which blows my mind. I still call them the babies, but these little rascals are just determined to keep growing fast! Their birthday party was gorgeous. Fab decorations, adorable little ones, loads of presents and even a special vegan cupcake for me.
The sun was actually shining, so I wore a very cute linen dress with my fav t shirt knotted on top. The dress has pockets, always a plus and perfect for all the things little ones want are constantly handing me. T shirt is a Christmas pressie from the birthday babes and their big sister. I adore it. I will check with their Mummy where they got it from because it fits so well. I often have to cut the necks in t shirts as I don’t like how they sit, but this one is perfect.
Miraculously my t shirt got through the party without a spill, sticky finger or having to be used as a hanky. Thus my spoon deprived self gave it another go for dinner with my big brother and his boys. I came bearing gifts from my recent trip ensuring my auntie score stays high. Since the sun was still shining we were able to eat outside by the restaurant’s play park. We had some good carry on and the boys were happy all round.
This time I teamed the tee with a blue strapless dress. Love the hem and the fit in this one. I am always amazed by how well this jersey dress keeps its shape and holds in place. It is super soft and comfortable, but when it is on I feel completely secure that it’s staying on.
At dinner I finally discover cauliflower wings that weren’t too spicy hot for me. Even my vegan mocking bro agreed they were yum. Plus I caught sight of my reflection and my butt looked great. What more could I want?
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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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Valentine’s Day is my Dad’s birthday, so my plans weren’t remotely romantic. However, I haven’t been properly dressed in weeks and I wanted to look nice for a wee family lunch. After much wardrobe pondering, I plucked out some old favourites.
I haven’t worn this dress in ages, I loved the swish the petticoat added. I’m been very into the double velvet of late. I think I scrubbed up pretty well even if I had to stick with cushioned comfy shoes.
We took Dad out for lunch and then did a little toy shopping. I even managed to finagle a frozen Coke, which I haven’t had since Australia. I love it, the delicious icy goodness was my valentine.
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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.
I was raised Roman Catholic. I went to mass every Sunday, made confessions, took communion. I attended catholic schools. My primary school was flanked by a chapel, a missionary monastery & a convent. By virtue of attending those schools most of my friends were also catholic. We all prayed before lunchtime, sang hymns in assembly and had regular R.E. Classes. What I mean is I understand how organised religion works. I was immersed in dogma throughout my childhood.
That’s not to say I always liked it. Even early on I remember having the distinct feeling that some it was icky. I didn’t like the bullying ways of my school chaplains. Some of the things my teachers hammered home did not fit with the whole peace & love vibe. Mass was never anything other than a thing to be endured. Catholicism always felt too rigid.
It wasn’t until I hit secondary school that I really started to call bullshit. I didn’t believe much of what I was being taught. More importantly I hated the intolerance. Catholic views on sex, sexuality, gender roles, abortion and so much more simply did not align with my own. Neither did they fit with what I had learned at home. I couldn’t bite my tongue in the face of bigotry dressed up as god’s word. Nor could I bring myself to do the cherry picking that many religious folks do. The catholic faith felt like a straight jacket & I would not be restrained.
Thus, I drifted away. I stopped going to mass. I let myself question everything I had absorbed. I dug into the history of the church and its current practices. The more informed I became the less respect I had for any of it. It’s all steeped in atrocities & injustice. Organised religion it seemed was just a way to control the masses. What better way to impose your will than to tell people it was in fact, god’s will. By the time I finished school I no longer considered or described myself catholic at all. I had & have no use for any organised religion. I believe there is a higher power of some description, but not some patriarchal judge in the sky.
Most of my family still belong to the church. I have friends of various faiths & none. I’m very much a live & let live type of person. As long as no one is trying to impose their beliefs upon me or actively do harm in the name of religion; I don’t consider it my business. I do however retain a distrust & distaste for the institutions. I want no part of it.
I tell you all this in order for you to understand how I felt when I received this comment on something I wrote on the anniversary of my baby’s due date.
Anger was my main reaction. I removed the comment & blocked the (blank) account. I hated the thought of someone more vulnerable than myself receiving such a comment. I felt angry that this so called church elder was trawling for people they thought they could manipulate. However, I didn’t want to give it anymore time or energy. They were blocked; end of story.
Unfortunately not. A couple of weeks later, on my birthday, I received an email. This time from a church elder named Liam McIntosh. It was more of the same. Insulting & ignorant comments about my life, offers of ‘support’ and that suspicious claim of referral from a concerned friend. There is not a single person in my life who if concerned would ask the Church of Jesus Christ of Latter Day Saints to help me. This contact enraged me. I have an excellent support system, a sense of purpose and lots of joy in my life. However, I am aware that many people do not. I remember how little it took to overwhelm me when I was in the depths of mental illness & grief. I am also cognisant of how easily some people who feel desperate may be manipulated. Both messages utilised abuse tactics; belittle, claim to be doing so for the victim’s benefit and then purport to have all the answers. A church setting out to prey on vulnerable people in this manner sickens me.
This kind of behaviour is exactly why I do not like organised religion. It is predatory. This organisation is clearly seeking out people they believe to be vulnerable in order to manipulate them. I am not that person. I share my experiences in order to dispel stigma. I find the ‘concerned friend’ tactic particularly disturbing as it purposely exploits the guilt & shame that many people in difficult circumstances already feel.
After receiving that email I felt sufficiently angry & concerned to act. I tried to track down both men who contacted me. I could find no trace of either on official church websites etc nor could I find any record of professional training that would qualify them to offer such advice. The only COFLDS that I could find in Hamilton has disbanded. I called Edinburgh & Glasgow branches, but neither wanted to comment. Nor would they provide details of anyone in a senior role to discuss these communications. Some elders though are obviously reading this blog, perhaps they would like explain themselves?
I’m not finished with this. I am worried about the harm these unethical strategies could cause. As a result I am working on a more in depth piece for publication. If you or someone you know has been contacted in this way, I would like to hear from you.
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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.
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.
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.
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.
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.
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!
doing not much. It’s been mostly sedentary activities and background music has been essential. These have been my most played.
Obviously Lewis Capaldi’s new song has been on repeat. Like the rest of the sane population I have been dying for him to release new music. Forget Me doesn’t disappoint. Poignant lyrics and epic remake of a wham video clearly add up to a hit. I even bought the single. The first single I have purchased since the 90’s. It must be good. Factor in the bonus of having him back of social media and the world is a better place.
Reflecting Light wormed it’s way into my play list via Gilmore Girls. I’m currently very annoyed at that stupid show. I started it in a fit of insomnia because a friend told me it was great (you know who you are!). Gilmore Girls is not amazing. It is a sort of ok sitcom with a few really annoying characters and main folk doing occasionally hideous things. I couldn’t stop watching, though because they suckered me in with Lorelai & Luke. I can resist a meant for each other but keep fucking couple. Thus, I had to press on to ensure they ended up together. Amongst my tears & frustration came Sam Phillips singing Reflecting Light.
‘ I rode the pain down, got off and looked up Looked into your eyes The lost open windows, all around My dark heart lit up the skies’
The waltzing and those lines got me. I’ve been humming it all week.
Another Love by Tom Odell is the song you hear in the videos of Iranian protests. An uprising prompted by the death of Mahsa Amini, a 22 yr old woman beaten to death by morality police for not wearing a hijab. The courage of women refusing to submit to these laws is immense. It is incredible to watch people stand up to this totalitarian regime. Their bravery is awe inspiring. I get shivers every time I get this song.
Last but not least we have Harry Styles’ Matilda. It’s just such a beautifully sad song. I can’t relate, my family are wonderful, it’s still making me cry. Something about that reassuring voice saying it’s ok to let go just gets me. Poor Matilda.
Bronan approves of both the tunes and the sitting still.
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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.
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