Ordinary pain…

Pain is a curious beast. Its purpose is to protect us. Our own built in warning system; something that compels us to take our hand out of the fire or call a doctor. The whole point of pain is to give us a message that we don’t ignore. That is until something goes wrong. Then ignoring pain becomes your life mission. 

Chronic pain is impossible to accurately describe. If you haven’t experienced it, you can never understand. All our lives we’re taught to report pain. The expectation being that you find the problem and there will be a solution. You graze your knee, your mum puts germolene on & kisses it better. You break a bone, you get a cast & it heals. Now with vigilance we can even hope to survive life threatening illness. We are a society awash with information; what foods we should eat, how often & how to move our bodies, how much sleep, water, sunlight are optimal. Our collective consciousness is set to believe that if we do the right things we can prevent illness and if something still goes wrong we can fix it. When that doesn’t happen, you’re stuck in a void. Physically, you are ill, but psychologically you must find a way to override it. 

 I am awoken most mornings by pain. I average about 4hrs sleep and rising from my bed is a fainting hazard. Every step I take hurts. My digestive system is best described as erratic and my autonomic processes are haywire. Thus I spend my days dizzy, sore, nauseated, exhausted and unable to regulate my temperature. That combination would bring most people to a standstill. You’d call the Dr, take the day off and you’d be right. But it’s everyday for me and Drs can’t help. I can’t ‘call in sick’ from life. I’m left with the challenge of learning how to turn off my body’s alarm system. 

Unfortunately, you can’t. It isn’t possible to stop the pain. Chronically ill people just have to do it anyway. The only alternative to missing my entire life is to do as much as I can despite the pain. It takes a lot of work to rewire one’s natural responses. Then even more work to decipher how far you can push. A huge amount of planning is involved. There are calculations required for every single thing I want to do. Firstly the practical: 

I always try to schedule my days. I estimate in advance how much impact each activity will have on my body. Then aportion rest days accordingly. Not just big days, but daily essentials like housework or showering. I attempt to judge how much I can handle and how long a recovery period I will require. 

The next step is planning. Before I go anywhere I check various things. Will there be places I can sit down, do they have disabled toilets, can I access water & food I can eat? Then I figure out my condition that particular day. Is my stomach behaving? Will it be safe to eat when I am out or am I likely to vomit. Am I especially dizzy? How safe is the location if I faint? Can I physically manage the walking distances involved?  And so on and so forth. 

The last stage of practicalities is symptom management. Medication selection, will I require more than meds for pain relief, do I need to take food or water. What clothes will keep me most comfortable? Items that won’t increase pain, will be cool enough if I overheat, but easy to carry layers to guard against the cold if necessary. Maybe I need cooling spray or my tens machine. How many of these things can I actually carry? All must be weighed up before I step foot out of the house.

Preparations complete, now comes the really tricky bit. It’s time to manage my mind. This part is entirely in my hands. There are no guaranteed techniques. One can see pain specialists, psychologists and research til the cows come home, but you can only know what works via trial and error. One of my conditions, Fibromyalgia, impacts the way the central nervous system processes pain. Sometimes my nerves send pain signals to my brain that are way out of proportion. I can have pain anywhere or everywhere for no discernible reason. The only way to function is to override that pain. I can’t stop feeling it, but I can attempt to alter how I react to it. 

My first line of defence is what I call ‘mind over matter’. I focus only on the very next thing to be done. Nothing else exists. For example, I must get to the seat up ahead. I don’t think about which parts of me hurt. No lingering on the sensations I am experiencing. I do not consider what comes after the seat. I keep my eyes on my target, keep moving and tell myself I can rest when the task is complete. This theory can be applied to anything. Brush my teeth, finish the paragraph, get to the end of the driveway. The reward of rest awaits me. 

In bouts of extreme pain I opt for deception. When I have tried every pain relief method at my disposal to no avail, I lie to myself. I close my eyes and repeat ‘I’m ok’. It doesn’t lessen the pain, but it can con my body out of panic. Panic makes pain worse. The body tenses & heart races. Calmly telling myself that I am ok repeatedly can override the fear coursing through my body. The pain may be unbearable, but I won’t stop the repetition. I will bear it. 

Distraction can be of use in various forms. Really loud music is a rudimentary diversion. As is cold water/ice or projected light. Basically I bombard my brain with stimuli in the hope of distracting from the pain. It’s a trick, sometimes it offers temporary relief. My other interruption tactic requires the help of others. I need someone to talk to me. A steady stream of words without my participation. Don’t ask me questions or wait for a response, simply give me a voice & a narrative to focus on. I’m not sure why but it has a calming effect. I don’t take in everything that is being said. I merely zone in on the voice and try not to think about anything else. It doesn’t stop the pain, but it somehow helps me manage it. 

My last ditch effort is comparison. I recall a time when my pain was worse. I remind myself that I got through that. The pain did eventually end. If it passed before, it will pass now. I endeavour to remember all the details. Where I was, what I wore, the smells, sounds, what my eyes rested on, the sensations of needles piercing my skin, the names of medical professionals, were they kind or rude, how long I waited, did I lie down and every other particular. Eventually, reaching the point when the agony began to subside. I strive with all my might to recollect that sensation; the incredible relief of pain beginning to melt. I hold tight to the belief that it will come again.

And there you have it, the tools in my box. Of course none of them actually leave me pain free and they’re all exhausting. It takes enormous energy to pre-empt every move and even more to employ these strategies whilst already in pain. At the worst moments they don’t have any impact at all. There are times when my body is excruciating. The pain so all encompassing that there is no escape. On those days I am beaten. I stay still and hope for it to be over. That’s the real truth of chronic pain; there’s no getting away from it.

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Crazy little world…

I know I promised to write about some of the significant things happening in our crazy world, but my own little crazy world has gotten the better of me. I’ve been struggling with a gastro flare & non stop fainting. Both of which have left me exhausted. So, once I have contended with life’s essentials, I have very little left.

I’ve been using any leftover spoons to see my littles and take care of myself. One of the things I can do that makes me feel a tiny bit better is paint my nails. Of course I have been getting spooky with my nail art.

On Saturday I ventured out to the theatre to see my nephew’s Halloween show. The show was fantastic, I was so proud of him. I also took the opportunity to debut my new glasses. I am utterly in love with them.

Glasses – Where Light
Skirt – Lindy Bop

Bear with me, more insightful content coming soon.

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

Strange & Unusual

The last few days have been a beautiful last gasp of summer. Mother Nature is easing us into spooky season and I love it.

Autumn is my favourite season; I yearn for crisp chilly days, cosy clothes and of course Halloween. Our GlasGlow tickets are already booked and costume pieces have been ordered. This week felt the perfect time to kick off the festivities. My sister, her tiny boy & I all cried Beetlejuice thrice & were transported to Burton world.

I absolutely adored the original. Well, I think I was pretty scared the first time, but I settled into it. Gothy Winona made my little weirdo heart beat faster in the 90’s & I think Beetlejuice may have kick started that. I didn’t have much time, but I really wanted to wear something on theme. My teenage niece used profanities to describe how cute I looked, I consider that a success.

Dress – Forever 21 Skirt & Vest – H&M Kimono – Boohoo

Teenage approval for an old Auntie.

I very much enjoyed wearing those over the knee socks. Having them peak out from under the lace is a look. Luckily I have quite a lot of sheer dresses, expect to see more of them. They are actually compression socks to help with Pots symptoms. Plus Sock miraculously make the only comfortable compression socks I have ever worn. Spoonie boon!

Over the Knee Socks – Plus Socks *

Beetlejuice Beetlejuice was a hit with us. I loved that they kept the style of the OG. No high tech cgi, it felt right. Cast are fab, costumes incredible and lots of dark laughs. The juice is loose and I’m here for it.

* previously gifted.

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

That summer feeling…

The summer holidays are drawing to close in Scotland. Thus, the last few weeks have been filled with nibling adventures. It’s been tricky balancing ebullient days with enough rest, which has caused a few problems. All entirely worth it.

In the biggest and most exciting news, I have a new nibling. My sister had another boy a few weeks ago and he is of course, perfect. Everyone is doing great & my big boy is absolutely loving being a brother. I had my first adventure out with the tiny little man last week. My sis & I plus both boys checked out Beyond Van Gogh. It’s an immersive art exhibit and we loved it. The little man was captivated by all the colour and light. Big boy fascinated by the whole ear thing. I did really enjoy the experience, but I would have liked some smaller rooms for a more immersive feel. I think it would have felt more like stepping into the art in smaller spaces.

I felt like wearing something exuberant to delve into Van Gogh. I plumped for a retro vibe, with this floral dress and petticoat. I always feel very femme & pretty in this shape.

Dress & Petticoat – Lindy Bop

Summer wouldn’t be complete without a trip to the Glasgow Science Centre (GSC). The kids love being able touch and investigate everything. The twins especially enjoyed a big safe space that they can have free run of. Their big sister really took to the floor that explores the human body. Her sprint time & jump height were extraordinary. The naked body & skeletons also garnered some attention. I met my manager from when I worked at the science centre and was surprised to discover he remembered me. In fact colleagues had recently been talking me. Considering it’s been twenty years, I’m a little concerned about what made me stick in their heads. Past idiosyncrasies aside, we had a fabulous day. Special shout out to gift shop, which bucks the trend of insanely expensive price tags. They have a great range of fun & affordable treats.

GSC is always insanely hot. I suppose that’s bound to happen in building made from concrete and glass. To mitigate this I went for my new little vesty dress. Ten out of ten, so comfortable and light. It is definitely going to be a staple.

Dress – Nobody’s Child. Kimono – Simply Be

On the less fun side the heat has been playing havoc with my Pots. There has been so much dizziness and a few fainting disasters. Air hunger has also been a huge problem. I have upped my water intake, doing electrolyte drinks, lots of sitting down, breathing excerises, fans & so on. All to now avail. I’m really hoping symptoms might diminish as the temperature cools. The new problem is Cubital Tunnel Syndrome. It’s caused by compression of a nerve in the elbow and results in numbness, pain and weakness in the hand. My right pinky & ring finger started getting pins & needles a few months ago and it never went away. Half of my hand is now constantly numb and the remaining half is very weak. I don’t have a lot of pain, but not having full use of my dominant hand is a significant challenge. I’ve had my elbow x rayed & it has mild degenerative changes, which may be the source of the problem. Again I’m doing everything I can and so far no improvement. I have excercises, wear a splint at night, changed my arm position when typing. I’m waiting to see physio. This condition can be reversed, but it frustrating to be stuck with another limitation in the mean time. Fingers crossed that physio helps. Spoonie life is kicking my arse.

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

Life is a rollercoaster…

It’s been a mixed few weeks. The Easter holidays presented lots of opportunities for auntie time. Unfortunately, my body has seized every opportunity to mess with me.

My first Easter adventure was a trip to The Burrell Collection. I spent a lot of time here as a kid and always enjoyed it. It is so nice to share it with the next generation. The boy absolutely loved all the swords and armour. I loved watching him explore.

Dress – Forever 21 Tights – Snag Boots – Air Cloudies

The Burrell is really good on the accessibility front. Wide flat spaces that are easy to manoeuvre. Plenty of places to sit throughout, plus light weight stools you can carry around with you. Spacious lifts to all floors. It is a stunning buildings, with exhibits to entertain all ages.

As you know, I’m big into my glasses. I can never have enough. Thus, I was delighted to collab with Firmoo. These blue beauties have been on my face since the moment they arrived.

Glasses – Firmoo *

Next up was a little dip with my bestie & her brood. Swimming is my favourite, not least because I can properly carry on with kids. In the water I can move with ease. It feels so good not to be in pain every second. It’s even better to play a shark, spin the kids, help them ‘swim’. Much fun was had even if my littlest niece was frustrated that she needed to hold on to me. She was determined that she could do it herself and was not convinced when I explained that she couldn’t swim. Swimming with littles requires clothes that can be easily pulled on whilst squeezed into a tiny changing room with a wiggly child. These wide legs were perfect.

Trousers – Pockets and Sedition Cardigan – Monsoon

A few days later I was back with the treesome for the twin’s birthday. I can’t believe they are three already. It’s a cliche, but kids really do grow too fast! I still call these two babies, which is wishful thinking. They are so smart & funny & full of love. It is an honour to be part of their lives. We had a classic children’s party; balloons, cake & pass the parcel. It was a joy.

On the flip side my insomnia is in full force. Tossing & turning for hours every night is torture. I lie there exhausted, but feeling this horrendous unsettled sensation all over. The more I dwell on this physical embodiment of anxiety, the further away sleep gets. Every day feels like wading through mud. Surviving on minuscule amounts of sleep is the absolute worst.

When my body isn’t refusing to sleep, it’s passing out. Pots is kicking my arse. My latest fainting disaster resulted in two small fractures of my hand. The good news is that the bones are fast healing. The bad is that it is my walking stick hand and weight bearing is not easy. I’m feeling overwhelmed about how this is going to impact my mobility. Fingers crossed the predicted 3 weeks healing time is correct.

I might have to wear an ugly splint, but my nails look great.

Thankfully Bronan is always around for snuggles. A purring cat is a great stress reducer.

* Use my code Kerr50 for up to 80% off.

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

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.

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.

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

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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

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