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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Still…

I’m doing well. I really am. When I compare with my previous self there is no doubt that I’m in a much better place. Still, no matter how well I become, the devil on my shoulder remains.

That devil is destruction. Self destruction. Sometimes just flashes; a momentary thought of blood or blades. Other times I experience the deepest longing to ravage my skin. My reaction to pain is still, more often that I would like, the desire for more pain. Not the same kind of pain. A pain I can control. I have worked at working myself out. Learning healthy coping strategies, questioning myself, pinning down what I feel and why have been an ongoing process for decades. I am better. I haven’t self harmed in a very long time. I still want to, though.

Not everyday. Not in the compulsive ‘can’t think about anything else until it is done way’. I don’t berate myself for not cutting or create a mandatory timetable. That is gone. I have conquered that aspect of my demon. My problem is, the underlying urge never really goes away. In times of trouble my mind thinks it knows what will ‘help’. I suppose it’s like being an alcoholic. There will always be days when one really wants a drink, except in my case it’s a scalpel, not a bottle I want to reach for. The weird bit is that these thoughts aren’t reserved for awful days. Occasionally, for no reason whatsoever, a wave of craving will hit me. Honestly, my toolbox isn’t particularly helpful in those instances. It is very difficult to reason with a nonsensical ghost in your head. I’m left with sheer determination & an awareness of how slippery the slope is.

Strangely, I rarely hear anyone talk about this. There is much discussion about the warning signs for self harm, the damage it causes and how to stop. There is even information on how to treat wounds and hide scars. It’s all very much a before and after narrative. People are sick and then they recover. As I’m sure you’re aware, very few things are ever that simple. We generally understand the complex nature of addiction and mental illness. For example, much work has been done to educate people on eating disorders. Most people know how difficult they are to manage and recover from. It’s generally understood that people are not concretely cured. It is a process that involves relapses and continuous effort. Disordered eating becomes compulsive and corrupts thought patterns. Often nothing is as important as maintaining the disease. Likewise substance abuse takes over a person. The priority becomes obtaining the substance of choice. Whilst no one thinks that’s good or healthy, we do understand that people don’t want to be controlled by an illness. These are topics that are commonly discussed; we have compassion and celebrate those who have worked towards recovery. Not so for self harm.

Self harm is still taboo. There isn’t really any mainstream discourse of its realities. No one is making serious documentaries or accurate media portrayals. Celebrities aren’t telling stories of how they won their battle with self harm in the way they regularly do regarding addiction, eating disorders or issues like anxiety. The latter are viewed as brave and inspiring, self harm is still seen as disturbing. Even talk of relapse or the ongoing nature of recovery are received positively, but discussions like I had above is very much in the ‘crazy’ category for most. Despite the fact that statistics show the prevalence of ED & SH are fairly similar and that they share many commonalities, the public perception is very different. Even years into ‘recovery’ it frustrates me. The stigma sticks. I can carry the weight of other people’s judgement now. That wasn’t always the case and it won’t be for many still in the throes of illness. The fear of the judgement creates an impediment to seeking help. That delay is extremely dangerous. So, yes, I’m still talking about this because hardly anyone else is. I don’t believe people get better in silence and I think it helps to be prepared for what better might actually look like.

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My favourite work of art…

Can you believe it? The sun has finally come out. It’s felt like winter has been with us forever. I am so glad to feel a bit of sun on my skin and perfectly timed for the school holidays.

With an adventure planned I was excited to finally wear this dress. I bought it from Vinted, but it was originally from a dreaded fast fashion brand. I wouldn’t buy directly, but I feel better about pre owned items being on my body rather than in landfill. This ode to Van Gogh is the perfect summer dress. It is so easy to wear, but looks fantastic. The pretty location and my sister’s photography skills definitely helped. I felt absolutely gorgeous.

I added a little sheer top as this dress is on the booby side. Since I was off to explore the beautiful park at Dumfries House with little ones I didn’t want to be worrying about cleavage overkill. We had a lot of fun in the maze and enjoyed our picnic in the sun. Yeah for frolicking in a pretty dress.

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Somewhere beyond the sea…

During the school holidays we took a little trip. It was a belated birthday getaway for my sister, who turned 40 in December. We also both needed a bit of a break. What better way to relax than to take a 7yr and 6mth old to a blustery island?

Believe it not or it was bliss. I go away with my sister and the boys fairly often. In fact I start to yearn for round the clock auntie time if we leave it too long. Pleasingly big nephew also clammers for our next holiday. This was our first go with the new edition and it was wonderful.

Arran was, as expected, stunning. By pure chance I always seem to visit Scottish islands off season. Honestly, I think I like it that way. The rugged beauty in Scotland lends itself to the wilder aspects of our climate. If you’ve never stood in the middle of Scottish nowhere on a cold blustery day, you really should try it. There is something wonderful about wrapping up warm and venturing into the wilderness.

Anyway, back to this trip. We stayed at Auchrannie Resort which is genius combination of spa retreat and family focused. We were obviously taking advantage of the kid friendly aspects, but it would make a fabulous grown up escape too.

I had an absolute ball with my sister and nephews. We did a lot of swimming, explored the island and even a bit of archery. Turns out that for some reason I’m a pretty good archer. A fact that annoyed my competitive little sis. Come the apocalypse my chances of survival have increased, as long as I can get hold of a bow and arrow.

I of course indulged in one of my favourite hotel experiences, the buffet breakfast. I rarely eat breakfast. The luxury of having anything I could want prepared and ready tickles me. I don’t choose anything fancy, but I still love it. Toast, cornflakes & potato scones also happen to be the best fuel for a day in the great outdoors.

On our first day we set out in search of some standing stones. Unfortunately the big daddy stones were a trek too far for me. I did manage to reach a smaller stone circle, which was just as atmospheric. My sister and the boys headed on to the big stone circle whilst I enjoyed a little alone time. There is something magical about being amongst all that wild beauty and feeling completely alone. I live in big city and am never very far from other people. Don’t get me wrong, I love the hustle. There is however a part of me that longs for that fresh cold air in my lungs and no people.

We also managed to take in a few of the islands beaches. It rained on our last day, but that didn’t stop us. I prefer a gloomy beach, wind & rain feel like the real personality of the sea.

All in all it was the perfect trip. Now to buckle back down the drudge of daily life.

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I walk the line…

I’ve needed my walking stick for quite a long time. Maybe 7 or 8 years and I’ve only just become properly comfortable with it. Using a mobility aid, especially earlier in life, is very strange. Everyone has an opinion. No one is shy about sharing it.

All the questions and reactions definitely had an impact on me. I feel self conscious more often than one might expect. I hate when strangers want my medical history. Staring makes me feel shit or angry; sometimes both. I am so fed up with being told I’m so young for a walking stick. I find it really difficult to need accommodations. I feel like a real pain in the arse more often than anyone else is bothered. Likewise, I’m sure I sense judgement more than it actually exists. All of which messes with the confidence.

Then of course there is a sense of loss. Accepting all the things you can no longer do is hard. I struggled on without a stick for longer than I should have because I had this ridiculous idea that I was giving in. I’ve always felt a certain amount of pressure to be stoic in the face of my health issues. A walking stick felt like capitulation. It also forced me across the line in my head of admitting that I was permanently disabled. Before that I was hanging on to the idea that my knee could get better. That was silly considering I’d been assured by more than one Dr that it absolutely would not. Degenerative conditions aren’t known for improvement.

All told, it’s been trickier than I’ve let on. I’ve finally found peace. How do I know? I have personalised my stick. The idea of making it in any way decorative used to make me feel queasy. I have concluded that my subconscious attached styling the stick with it being part of my identity. The way I dress has always reflected my personality. Until very recently including my walking stick in that was a frightening prospect.

Klimt Style

I’m over the line again. If I’m taking the bloody thing every where it might as well be a bit funky. Keep your eyes peeled for new incarnations. Knowing me, I’ll be mixing up it.

Moo Style

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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.

Birthday Bitch…

September is a bumper birthday month around here. My own slips in right at the end, so I am now 44yrs old. How did that happen?

Anyway, I think I’m doing ok for an old bird. On Sunday we had a big lunch with cake, presents and the whole shebang. Obviously I had to smash it with my outfit and I did! Perhaps you’re not supposed to blow your on trumpet, I do not care. I looked gooooood. You’d never guess I’m middle aged.

I’m feeling pretty strange about this whole mid 40’s thing. I don’t know how I got here so fast. I need someone to catch up the ly in my head. She still feels like her twenties were five minutes ago. Except they also feel a lifetime ago too. It’s very confusing in here. Reckoning with mortality and all the things that are behind me is tough. It’s just as well I’m such a hottie; takes the sting out of it.

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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.

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Oh, sit down…

Yesterday was one of those ugh days. I had a couple of medical appointments and a few errands to run. I was tired and sore, but it was a sunny day, so off I set.

My mood took the first knock when my taxi driver has a rant about how short my journey was. Granted I wasn’t going far, but I can’t get about on foot. If I want to go somewhere, I need a taxi. Next up was a rude & unhelpful woman in the chemist. She made it very clear that finding my prescription was an inconvenience. Much huffing, puffing and snarky comments ensued, which drew stares from other customers. The final nail in the coffin of my day was the hospital receptionist who would not source a chair for me, but also got angry when I sat on the floor. Sitting on the floor is hazard, but passing out because I cannot stand apparently is not.

Rubbish day, but not the end of the world, right? If these were isolated incidents I would probably just brush them off. The problem is, it happens all the time. Being a disabled person out in the world can be a challenge. Accessibility is a problem, but even requests for basic accommodations can be met with irritation. On some level, I understand that. Work can be exhausting, maybe you’re having a bad day and being asked for something extra could just tip you over. However, most of my life is exhausting. I don’t make these requests to be awkward, I need them.

The result is I get apologetic. I begin my request with ‘I’m sorry, but’ or ‘I don’t want to be pest, but’. I feel like an inconvenience for asking. I anticipate that my accessibility request may not be well received. Listen, inside I often feel like getting arsey. My natural demeanour is not push over. I just know it won’t help. I also rarely have the energy for the fight. Thus, I find myself simultaneously pissed off at being made to feel bothersome & apologising for the perceived trouble.

I don’t need any help on the guilt front. I already feel like a burden to people that matter. Is it too much to ask that strangers don’t make me feel like shit? My needs are very straightforward; a seat mainly. I dread to think how anyone with a more complex requirement fares. All I’d ask is that before you roll your eyes or have a moan consider that this a moment of inconvenience for you is a lifetime of fuckery for us. Maybe you could just zip your lips and grab a chair after all?

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.

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