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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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.

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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.

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My week in pictures…

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.

Nails done…

What do I do when I feel crap all the time? My nails!

Absolutely love this deep red colour. I fell in love with Chanel Rouge Noir many years ago, but now go for the more ethical Barry M vegan polish. I love a bit of negative space on a manicure; it’s an easy way to accomplish a cool effect.

Two hands showing deep red and silver manicure

Last week I fancied some really bright cheery colours. This mani was fitting for Pride month. Unfortunately they didn’t survive long after a trip to the pool. Good whilst it lasted.

Two hands one with rainbow stripesd manicure, the other with rainbow polka dots

Finally, my attempt at impressionist type floral design. I don’t think I quite hit the water lily look, but they are lovely.

And talking of that trip to the pool, it was wonderful. My sister, my bestie and I took the little ones swimming. I am much more mobile in the water. I love being able to chase them and have a proper carry on. This time I was a shark, kraken and an octopus. Much fun was had. Outfit wise I went for cute and comfy. My beloved Pockets and Sedition palazzo pants*, slouchy tee and ‘sorry not sorry’ my old saggy boobs sans underwiring.

Fat white woman with walking stick is wearing palazzo pants and t shirt
Palazzo Pants – Pockets and Sedition
Tee – Primark
Glasses – Where Light

* Brand Ambassador. Not gifted or sponsored.

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Video killed the radio star…

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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Caught in a trap…

I’m stuck. Chronically stuck, you could say. My body has been refusing to behave for months. I’m operating at minimum capacity & maximum exasperation.

My pain levels are high and brain fog is impenetrable, but I also have a variety of ‘bonus’ complaints. This is a thing my body seems to do when I am particularly run down. A change in medication from injectable to oral about 18mths ago resulted in some messed up test results late last year (I had been against the change, but hey, what do I know?). Around the same time I had a bad cold that would not shift (definitely wasn’t covid) and culminated in Labyrinthitis. I was fairly lucky with that as I didn’t have pain, but the vertigo & nausea stuck around for ages. Into the new year the impact of that med change has made all my Long Covid symptoms more pronounced. The fatigue was never ending, a few steps left my heart rattling & my lungs crying out for air. Add a uti that quickly turned into a kidney infection. Then the three weeks of treatment required to correct the impact of changing the delivery of that medication left me vomiting all day & unable to eat. That of course messed up my electrolytes and landed me in hospital hooked up to a drip to get me back in shape. All in all it has been rough and I have struggled to get anything at all done.

That’s where feeling stuck comes in. There are so many things I want to get done. From big career moves (finish the book) to everyday task (mop the floors) it feels like everything is on hold. I am so exhausted and sore and foggy brained that it really is baby steps all the way. I write to do lists that are never completed. Every task takes a ridiculous amount of time. Proof reading each email you send three times cuts into available working time. If I put some washing in the machine, I need to rest. Some days a shower will be all I can manage. Spend a day out of the house and I need two or three days to recover. The ‘to dos’ get longer, the ideas go unexamined and I am trapped by all the unfinished everything.

It’s impossible to break free. There are things that could make my life easier, but they are of course costly. Usually a person could take on extra work, get a side hustle, but I can’t keep up with the bare minimum. If one has a deadline they could work all night. However, I can barely get through an afternoon without a lie down. Pushing myself to keep going not only results in less than my best work, but also puts me out of work entirely for days. Chronic illness pens me in. I can’t afford to buy the services & items that would make my life easier. The lack of those things contributes to worsening symptoms and limiting my ability to earn. See how it goes around & around?

I also feel welded to the spot. There are jobs I would love to accept, projects I badly want to complete, but I just don’t have the capacity at the moment. Thus, my career feels stagnant, it is heart wrenching to so badly underperform. My life is similarly entrenched. I want to see more people, have nights out, try new things. Of course, I can’t. My body simply will not allow it. I am so tired of saying no or rescheduling. It’s a no win situation my mental health suffers from being home alone so much. My physical health declines if I do too much. Again, the balance seems impossible to get right.

Finally, there is the mundane. I’d really like to have an empty washing basket. I want to be able to spend a day tidying the spare room. Instead, I do ten minutes a day for weeks and never quite get it done. It would be lovely to go out spur of the moment; but having a shower and putting on clothes can wipe me out. I never thought I would long to walk to the corner shop for cat food. Yet, here I am stuck in my house unless I can get a taxi or a lift. It is exhausting and demoralising. There is no easy way out. All I can do is wait and hope that I feel a bit better soon. I ran out of patience a long time ago.

An hour glass with iron filings

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Be running up that hill…

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

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Sit in the green garden…

Outfit posts are still thin on the ground because I hardly ever leave the house. When I do I rarely have the energy to put a look together. Now the sun is out I’m spending my days in the garden hoping the heat will work its magic on my joints & looking decidedly unglamorous.

So it’s all down to the nails to keep me in the style game. I’ve leaning into the summery manicures and liking the results.

Green manicure with pink peonies
It’s peony season & they’re my favourite flower, so why not paint some on.
Blue manicure with fox on ring finger.
Our nocturnal garden visitors inspired this design.
Orange manicure with sunflower design
A burst of sunflowers always cheers me up.
Bright manicure with smiley face, rainbow &  cherries
And a little 90’s doodle themed mani.

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