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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Care a little…

About a week ago I had a telephone appointment with one of the Gps from my practice. I haven’t had much interaction with this Dr and it did not go well.

After a brief conversation about the symptoms concerning me, she suggested we start with some basic tests and swiftly moved on to checking my weight. I asked why she wanted my weight and explained if not medically necessary I did not want to be weighed. The Dr replied that she would like to calculate my BMI. I told the Dr that BMI wasn’t scientifically sound and I didn’t want to discuss it. I’m sure you can guess how the appointment went from there.

It was the usual gaslighting and time wasting. According to the GP she would be negligent if she did not assess my BMI. I reiterated my objections to her weight focused approach, all of which were dismissed. The appointment was taken up with this back & forth instead of actually discussing my actual problems. I have informed various practitioners at the surgery about my preferences with regards to being weighed, discussing weight loss etc. I have disclosed my history of disordered eating and how intentional weight loss is detrimental to my mental health. I’ve also discussed the harm caused to me by weight stigma, which includes near fatal misdiagnosis and long term health implications. All of these conversations should be recorded in my notes as per my request. Yet still, I find myself regularly having these interactions whilst trying to access medical care.

A blue bathroom scale that reads doesn’t matter

Given our in-depth conversation about why I wouldn’t be weighed without solid medical reason, I had hoped that might be the end of it. I was fairly surprised when I saw the nurse yesterday for bloods and she asked me to ‘hop on the scale’. I gave her my standard, I don’t do weighing unless medically necessary. The nurse then told me that the Dr had specifically noted that she must makes sure she weighs me. I was internally furious, but calmly explained to her that I had already told the Dr I wouldn’t be doing that. Luckily, she left at that.

I am chronically ill. I have lots of interactions with medical folk. I am flat out exhausted before we get to the fat phobia. I often don’t have the fight in me, but I’m forced into battle. There is no let up. If I don’t assert myself I will not get the care I need. I know from bitter experience just how dangerous that is. The problem remains that even when I do stand my ground, the medical profession is want to shove back. Either I am entirely ignored or I am labelled difficult. It’s endless and wearing.

The persistence of these attitudes feels like a war of attrition on the patient side. It’s draining. No matter how many times I make my wishes known, they are ignored. Coming to appointments armed with facts, evidence and clear description of how this weight stigma harms me, makes no difference. Today was a classic example of this. I wasted my time discussing very personal & traumatic experiences with a Dr in order to justify declining to be weighed. She simply set it all aside and took action that she knew would harm me. I shouldn’t have to justify not wanting to do things that are not necessary or helpful to my treatment in the first place. However, it is clear regardless of how much time & energy I invest in explaining why intentional weight loss talk is detrimental to me, medical professionals will not listen. The stress of always having to be prepared for a fight is immense.

I will of course take steps to address this latest event with my practice. I can only hope they take action to protect me. It won’t bring the discussion of my weight to a close. There will still be another specialist, nurse or hospital consultant who views me as first fat and second a person in need of medical care. Right now the knowledge of that is way too overwhelming.

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

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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Let’s talk about…

Let’s talk about breasts. Boobs, titties, knockers, baps. Whatever you want to call them. Just a human body part. So, what is all the fuss?

For a long time I thought I hated my breasts. I resented the attention they brought, the assumptions & limitations they imposed. I even looked into a surgical reduction to be rid of their weight. It’s only in recent years that I have realised that there is actually lots I enjoy about breasts. I didn’t hate them, they had just been weaponised against me.

Boobs are great. They feel nice. Breasts can be comforting. Nipples can have incredible sensation. They add lovely curves to the body. Mine look great in lots of things. They can sustain new life. Sure I wish my own didn’t give me back ache but they’re part of me and I like me.

Why all the hate, then? Well, we live in a world that projects so much onto these mounds of tissue. It starts so young. If you are a late bloomer, you are free game for mocking. Develop fast or bountifully and you will be Objectified. I managed to combine both. I was flat as a pancake and then between 14-15 years old my breasts went into overdrive. There’s years of being sexualised. Your peers will do it and you’re told ‘boys will be boys’. Then it somehow becomes a teenage girl’s fault that adult teachers are uncomfortable that they can see bra lines through a white school shirt or that her breasts bounce in P.E. Strange adults on the street will shout gross comments at a child in a school uniform. The bus driver will come onto you every day on the way home from school. Friends Mum’s will view you suspiciously because your body means you are not a ‘nice girl’. All along assumptions are made about who you are and how you can be treated purely by the fact that the tissue on your chest grew bigger than other girls your age.

As you grew older it just becomes more overt. Men in bars will comment on your body and if you complain you’re told it’s your own fault for showing cleavage. Any night out will include at least one random groping from a person you didn’t even say hello to. Getting angry garners insults. You are a slut or you’re ugly because you object to being sexually assaulted. Friends of friends will refer to you as ‘that girl with the huge boobs’. Jokes are made, envy expressed, inappropriate bra size enquiries are never ending. All the while there is an underlying implication that this is your fault. You are judged because of a body that you didn’t choose or have any control over.

It extends way beyond individual experiences. Everyone in possession of a pair is bombarded with messages about our own form. We have all had lists of things we can & cannot do. Don’t show bra straps, but you need a bra to control or enhance your shape. Clothes that aren’t ok for your body. Clothes that are sending a message. Activities we give up because we’re so tired of the attention we attract. We’re shamed if someone can see the outline of a nipple. Censored everywhere because a female presenting chest is sexual; even when it is feeding an infant. We still live in a world where using a breast for its intended purpose can be controversial. It’s all patriarchal bullshit.

ly is wearing a white t shirt with red print saying , if you can see my nipples under this t shirt it’a because i have nipples.
Tee – Curated by Girls

Our bodies are not inherently sexual. Seeing a nipple isn’t provocative. Breasts are just fat and tissue and skin. No more or less obscene than a nose or an armpit. The size and shape of our constituent parts bears no indication of who we are. Neither does how we choose to adorn them.

I feel sad that I ever considered surgically changing my body purely to avoid misogyny in its many forms. I am exhausted that at 41 I still have to explain the same point I was making at 16. None of this new. Yet, there are still umpteen men in my DMs every week talking only about my tits. I still get cat called and disapproving looks. A few years back a GP pointed out that she could see my bra poking out of a vest top and asked what message I thought that sent. This educated, professional woman could not understand my anger or the reason I complained about her comments.

I don’t how or when we bring this to an end. I do know it starts with me (& you) taking back my body. I am not for public consumption. I will continue to wear whatever pleases me. I’ll delete gross comments and if you dare to sexually harass me the very least you can expect is a loud fuck off. My breasts are large, my cleavage exquisite, but most of all they are mine.

ly  is lying in a circular swing wearing black & white print dress ad harness bra

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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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Please don’t wake me…

Today kicks off Sleep Awareness Week, which aims to highlight the importance of good sleep. As a chronic insomniac I am of course acutely aware of how important sleep is. I’m writing this at 4am, so I haven’t found the cure for sleepless nights. I do though have some semi successful strategies.

My relationship with sleep has flipped from one extreme to the other. In my youth I could drop off anytime, anyplace. I loved to snooze and had zero issues dropping off. I was the queen of the long lie. Sleep became a problem when I first experienced mental health problems aged 19. Unfortunately, I have never managed to regain my easy breezy relationship with slumber. Almost twenty years on I have become accustomed to functioning on a few hours a night. Chronic pain has done little to aid a peaceful night, but an inability to calmly shut down is still a major obstacle in my quest for rest.

A decent night’s repose can affect everything from heart health to sex drive. It goes without saying that exhaustion also has a massive impact on mental health. The NHS advises that most of us need around 8hrs sleep to function properly. In fact, lack of sleep can so massively impair cognitive faculties that experts suggest driving after only 5 hours sleep is just as dangerous as driving drunk. Everyone should be mightily relieved that I cannot drive.

The long-term effect of insufficient sleep is grim. The anxiety of going to bed each night knowing achieving sleep will be a battle is wearing. The more you worry about not sleeping the less likely it becomes. Constant fatigue makes getting through daily tasks difficult, which adds to one’s stress levels. This in turn pushes that magical 8 hours even further out of reach. Long sleepless nights are lonely. There’s rarely anyone else awake leaving a busy mind way too much room to mull over worries. Throw pain into mix and you have a recipe for despair. Moving through the world in a worn-out shuffle will grind you down, which is why I offer my extensively tested tips on getting some god damned sleep.
I’m not going to waste your time with milky drinks and lavender under your pillow. Everyone knows the basics and they aren’t going to cure hardcore insomnia. I don’t have a failsafe solution, if I did, I’d snoring now. However, these are the things that I have had some success with over years.

Bedroom Tips

Keep your bedroom cool. Lowering your body temperature helps the body prepare for sleep.

In theory that’s why a hot bath should aid sleep, but I find any sleepiness gained from the temp drop is lost during the process of getting dry and organised for bed. If you do less faffing post bathing it might work better for you.

No tv in the bedroom. This is a definite for me. I find a television to be the opposite of relaxing. I need my bed and bedroom to be a completely chilled out zone. Which sits nicely with my next point.

Try to make your bedroom as pleasant as possible to be in. Obviously, that means different things for different people. For me it’s nice sheets, subtle scents, comfortable mattress.

Black out blinds are your friend. I could not live without mine.

Invest in one of those huge maternity pillows. They give so much support if you have back or joint pain. Plus they’re just super comfortable.

Sound Effects

Rain on window

I use sounds machine apps. I like heavy rain/ thunderstorm type sounds, but experiment and see what works for you. Something about being safe & protected from the elements I’m hearing sometimes helps me drift off.

Soothing music (whatever that means to you) at a low volume can also help. I like to mouth the lyrics and focus on words I enjoy rather than my own thoughts. Getting the volume just right is key for me, so again, you might need to experiment. Select specific songs and make a playlist beforehand. You don’t want anything that unexpectedly bring unpleasant or stimulating associations to mind.

Preparation

I should probably have started here, but lack of sleep melts your brain. So, you’ll have deal with my disjointed thinking.

These are all evident. I’m going over them because sometimes you miss the obvious when you’re knackered.

Don’t eat too close to bedtime.

Don’t watch, read or listen to anything that will bring up stimulating emotions (nothing scary, disturbing, sad, triggering etc).

Avoid arguing or deep conversations right before you hit the hay.

Smoking, caffeine, some meds (check with gp/pharmacist) are no goes before you attempt sleep.

Against Accepted Wisdoms

Sleeping cat

I’ve consulted many Drs, Psych’s and other practitioners over the years and some of the oft repeated advice they’ve given me has turned out to be just plain wrong for me. If you find something that really does or doesn’t help, even if everyone is telling you the opposite, do you. For me this includes:

Looking at my phone in bed. Putting it on night shift mode to alter the light tone to yellowish rather than blue is a must. Otherwise I find aimlessly scrolling can be very helpful in getting me sleepy.

Reading in bed also works for me. I can’t fall asleep without reading. I find that if I just keep going until I literally can’t keep my eyes open, I have a good chance of getting into a proper sleep. I think it’s because my mind is occupied with the content of the book rather than whatever mess is in my head. Clearly, it’s important to choose the reading material with reference to my previous points.

Sharing the bed with pets. So many people have cautioned me against this. I find my petting my cat and hearing his purrs excessively relaxing. Thus, I ignore such warnings.

Hippie Dippie

Constellation lamp

I hate to be that person, but occasionally the esoteric route gets you there.

A constellation lamp in a dark room can offer something uncomplicated to focus your attention on long enough to get to sleep.

Gentle yoga – clears the mind & stretches everything in a pleasing manner.

Desperate Measures

When you’ve been attempting shut eye for hours and are reaching the point of hopelessness; get up. By that point you aren’t going to sleep. Every toss & turn just raises anxiety levels. I find it much more productive to get out of bed and stop forcing it. Do whatever you can manage and if you get drowsy try again.

Medication – You need sleep to operate. There comes a point when discussing medication options with your Gp is the sensible thing to do. I have tried several sleeping pills over the years. Most didn’t work for me. Most are not a suitable for prolonged use due to addictive and/or tolerance building properties. There are some drugs that can be used for longer periods. I have been prescribed one such medication. It doesn’t have a 100% strike rate, but when it does work it knocks me out all night.

Sleep when you can in extreme cases. Often napping is counterproductive when fighting insomnia. However, when you haven’t had more than a couple of consecutive hours sleep in weeks that goes out the window. When my sleeplessness is at its worst, I will get so completely exhausted that my body will crash. That doesn’t always happen at bed time. Take that sleep. You need it. Sleep all day if you must.

Last but Not Least

Oxytocin

Sex and orgasms in general are brilliant for sleep. Sex works on so many fronts. You can tire yourself out, all those feel good hormones chill you out and of course it’s the perfect distraction from any negative bullshit you have going on. Flying solo releases all that lovely oxytocin and melatonin too, so don’t be shy about giving it a try.

My week in pictures…

I am currently an utterly exhausted mess, but for once it’s for good reasons. Last week was busy & wonderful. Comprised of friends, little ones & spontaneous fun. Plus some stunning sights. I have been snapping away like crazy. 

After many calendar conflicts I finally got through to Musselburgh to see friends. Lisa has been enducing hilarity & giving me heart warming hugs for over ten years now. She now comes with the added bonuses of a lovely husband & beautiful son. It doesn’t do any harm that she lives minutes away from this most amazing beaches either. Anyway, I always have the best time when I visit & this trip was no different. 

We went to the most picturesque village for lunch. It had a very Austen vibe & the tea shop served me a delicious vegan sandwich, top marks. Next stop was the perfect beach at Tynningham. Accessed by a short walk through a scenic forresr, I fell in love the moment I saw the sea. Once little James had terrified me with a crab a shell, we settled on a rock to watch the tide come in. I don’t know why, but the sea always soothes me. I left the sunny east coast feeling revitilised & full of love. 

I caught up with my bestie & got to hear all her latest pregnancy news. I also got a wee feel of her bump. I am bursting to meet her little one. I already have so many fun ideas for when this bundle arrives. 

I finished up the week chilling with the toy boy. Or trying to chill until he marched me all over town, I made the worst sushi in the history of the world & we embarked on a spontaneous day at The Fringe.


Highlights of our flying festival visit were Suky Goodfellow’s spoken word show, Political Acid Trip. She blew me away. Her fringe run is finished, but check her Facebook for more events. You will not be disappointed. 


Last stop was high above Princes Street. After years of wanting to take a ride on the Giant Wheel, I finally made it. It exceeded expectations. The views up there are startling. ​​

Blackbirds singing in the dead of night…

It’s 5.07am. There are some very loud birds outside & the light is creeping around the edges of my blackout blind. I haven’t slept, but I do finally feel a little bit sleepy. Do I sleep? If so I might sacrifice the day. After no more than a couple of hours for the last few nights I might conk out big style. I wanted to do something today. Something nice enough to make me feel like I’m participating in normal life whilst still being easy. Sleeping all day does not fit the bill. Although, perhaps I’ll wake up feeling rested & be productive. If I could complete one of the many, many things on my to do list it might relieve a little anxiety. For now I’m stuck in the vicious crazy circle. No motivation + no energy = accomplishing nothing. As the things I have not done pile up so does my anxiety. Until the undone things & the anxiety are so huge that I’m paralysed by their weight. I’m just stuck underneath, stressing & not sleeping & feeling increasingly worthless. So, maybe I should sleep. I’m exhausted. I’m always exhausted because I never get enough sleep. There is always something keeping me awake. Be it pain or fear or coughing or nightmares or vomiting or the terrifying vagueness of insomnia. Right now I feel that illusive part of tiredness that usually escapes me. The fuzzy comforting drowsiness that signals actual sleep is a possibility.

But

If I sleep now, chances of sleeping tonight are slim. I could miss the chance to do a thing that could make me feel something other than grey or jittery. If I close my eyes now I’m risking the dreams. Flashing scenes dripping with all the things I cannot bear to look at again. Flickering images soaked in feelings too potent for consciousness. Then I’ll wake in a mess. Heart pounding, breath hiding & I’ll have to talk myself down. Fool myself into a calmness that’s counterfeit. Either way the day is scuppered. All those hopes for lightness dashed. 

So, I stay awake. I’ll just wait in this cool dark room for the day to really get started. Force myself into the shower. Try to make a plan that doesn’t feel overwhelming. Push down the fatigue & the jangling of every nerve for the possible reward of OK. Reassure myself that this isn’t forever. Repeat that I am not back in the hole. It has been a difficult month. I am allowed to feel bad. Tomorrow or the next day or the day after that will be an easy one. Just keep going. Swing from one pleasant moment to the next & hold my breath through all the rest. 

This will pass

I will write the things that are over due

I will do some god damn washing 

I’ll cook a proper meal 

&

Wash my hair

Peace will be restored 

Life will go on

&

I will live it. 
If only I could get some sleep…

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Pause to breathe…

I had to go into hospital for a little bit for some treatment to complete things. I also have a kidney infection, my body likes to do fun things like this. Anyway, I am physically & emotionally exhausted. So, I’m just going to rest for a while & will be posting things that were completed before this happened.