The Fear…

I planned a really lovely weekend. I was going to visit a friend I haven’t seen since pre pandemic. She lives by sea and always makes me giggle like a maniac. I was so looking forward to it, but my body had other ideas.

ly is in a hospital bed wearing a face mask and hospital gown. She has leads attached to her chest

On Friday evening my chest pain got really bad. Then I had a fainting spell. As soon as I managed to get on my feet I would faint again. Sitting on my hall floor with my head spinning and heart pounding I felt scared.

I wasn’t scared of one particular thing; the fear was in the uncertainty. Not knowing how bad this is. Not even knowing what exactly this is or if it will ever go away. I have felt so fragile and vulnerable in these last few months. I haven’t been able to trust my body at all.

I have gotten used to my body failing me, but this has been on a whole new level. Every time I stand up my head spins and my whole body tingles. I can’t catch my breath, I don’t know if I will be able to stay on my feet. I have always prized my self sufficiency and it feels as though it has been slipping away.

My weekend in hospital hasn’t changed anything. Drs gathered some more information, but they couldn’t solve the problem. I await appointments with specialist consultants. Hopefully they can get to root of my long covid complications. The truth is I don’t even want to consider living like this permanently. It’s just too terrifying to think about.

For the moment I am happy to be home with my furry little nurse. I’m trying to rest and not stress about all the things that I am not getting done.

Black cat snuggling on blankets being petted

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A week(ish) in pictures…

It’s been a while since I did a week in pictures. Mainly because I have not been doing anything all that exciting. I have had a few family dos of late, so I’m doing a share.

First up was my youngest nibling’s first birthday party. The first year of these baba’s life has gone at lightening speed. They have been an absolute delight from day one and continue to be wee darlings. They are now very much on the move, starting to find words and full of fun. Their party was lovely. The babies enjoyed their new toys, grown ups enjoyed a cuddle and bigger kids loved running riot.

Dress – New Look
Tights – Pretty Polly
T-Shirt – Gift
Glasses – Where Light
Is there anything cuter than babies in tiny party hats?

Following on the family fun theme I had a gorgeous Easter lunch with my Mum, Sister & her boys. My sis made a superhero afternoon tea with plenty of vegan friendly options for me. The boy opened some Easter gifts and then we set off to his swing park for a bit of carry on.

After all that activity, I required a wee bit of rest. I had a quiet few days at home. Wore my comfies, tried to finish some work and painted my nails. I also had some yummy comfort food & bought Bronan some new catnip, which went down well. Strangely it also increased his paper fascination.

Nail Polish – Barry M High Vis

Thursday brought some Auntie time. My sister needed me to watch the boy for a few hours in the morning. This worked out perfectly as it gave him an opportunity to try out the blocks that Geomag* kindly sent me. I had intended to get a few of my littles to try them out, but this boy fell in love with them. He played all morning, took them home to play all afternoon too. The Magicubes are magnetic blocks that connect and hold on all six sides, meaning kids can build anything with them. I’ll definitely be buying more for the rest of my nibling gang.

Very pleased with his dog and dinosaur

I finished off the week with blood boost. A transfusion can be a nuisance, but necessary. Ultimately I am very grateful to have access to the medical care I need. Plus it gives you a good excuse to stay still and listen to a podcast all afternoon. I came home to huffy cat (annoyed that his dinner was late) & a lovely sunset. Not the wildest Friday night, but I’ll take it.

Big thanks to blood donors!

* GIFTED

Make me feel…

Of late I have been bothered by much of the therapy speak I see cropping up everywhere. I’ve always been slightly irritated by the therapy buzz words, but it used be reserved to certain arenas. Now it feels impossible to get away from it. Some are impenetrable, some misapplied and some a little stupid. So, come with me in a little therapy rant.

Sit with it.

The ‘it’ being emotions. I doubt there is anyone who has ever sought mental health treatment who is unfamiliar with this phrase. I have been advised to ‘sit with’ all manner of feelings. I’ve never been entirely sure what this means. Nor has any explanation ever satisfied me. Let yourself feel it makes sense if you are actively avoiding emotions. I used self harm, disordered eating and occasionally alcohol to block emotions that I wasn’t able to deal with. However, when I moved past avoidance it was still the guidance I was given. When I was ready to acknowledge and tackle those feelings I needed more. ‘Let yourself feel it’ is redundant. I am feeling it; that is the problem.

Sit with it in black letters

Don’t Judge it.

Once you are sitting in all that emotion you will often be advised ‘not to judge it’. Just feel it, they’ll say. Well, I’m sorry, that’s impossible. I have already judged it. Judging is a prerequisite for finding something problematic. The judgement is automatic. More than that, it’s involuntary. The minute I find the emotion unpalatable it has been judged. I came to the (sometimes correct) conclusion that perhaps what these therapist meant was don’t judge yourself for having that emotion. That makes sense, I can work on not attaching negative connotation to what I feel or how uncomfortable that makes me. I can even get on board with attempting not to label specific emotions intrinsically negative. I’m not convinced, but I do see how in some cases that could be fruitful. However, removing the intuitive I DO NOT LIKE THIS just doesn’t strike me as a realistic goal. If I were able to control my brain in that way, I wouldn’t have a problem.

Let it go.

Feel it and then let it go is definitely the aim. I’m not sure it actually counts as advice though. I know that getting stuck in difficult emotions is not good for me. What I need is help learning the way out if that. Restating what I should do is not helpful. I know the problem, I am here because I am looking for answers.

Inner Child

Many years ago when I first experienced therapy the inner child thing was kind of a joke. It never came up. Of course therapists talked about childhood experiences & being compassionate to past versions of yourself. However, a psychologist would never say the words ‘inner child’. Now it is everywhere; from woo woo spiritual healers to actual trained therapists. I’m sure it applies to some people, but it’s just not relevant to me. My inner child is a ok. I had a remarkably lovely childhood. I was loved, appreciated, supported, safe and very well taken care of. My ‘inner child’ is probably the healthiest part of me. I’m not carrying any painful scars from childhood. So, I have found it incredibly frustrating that everyone and their granny wants me to get in touch with my inner child and heal her. Even when I proffer my history and explain that my upbringing is not a problem area, I am still pressed to explore it. I don’t know how or why this happened, but I really don’t love it.

Picture of ly  with her hands on her hips and drawing of a child in her belly

Be vulnerable

This is another one that totally has merit in the right situation. There have been times when I have been scared of touching memories and emotions that made me feel vulnerable. I did need to work through that. Being vulnerable can be frightening, but it is also necessary. I would argue that engaging in therapy is already submitting to vulnerability in many ways. The showing up is a great first step. However, the canonisation of vulnerability has gone too far. There is definitely a time and a place for vulnerability. We can’t and shouldn’t always expose weak spots. We live in a fairly brutal capitalist society and being completely honest about your vulnerabilities will not serve you in many situations. People will take advantage, they will bypass you based on their perception of that vulnerability and many folk will judge you. Still I hear professionals who really should know better urge everyone to embrace their vulnerability throughout their life. It drives me crazy; we need to protect ourselves. Let yourself be vulnerable in safe spaces only.

Drawing of hands holding a heart on green background

Am I just jaded? Or do you feel frustrated by these therapy catchphrases? Maybe you have your own therapy pet hates. I would love to know your takes.

Close up of sleeining cat face and paws
Adorable Bronan for rant tax.

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You’re toxic…

If you are at all interested in dismantling diet culture you will be aware that new government legislation regarding calories on menus has now come into force. The legislation is part of the government’s plan to tackle ‘obesity’. Whilst I have a lot to say on that larger topic, I’ll stick to the calorie information for now. It will come as no surprise that I am not in favour of this development.

As a fat woman who spent years of my life embroiled in yo-yo dieting I know how dangerous constant calorie counting can be. In the depths of my disordered eating I was obsessed with calories. They were my enemy and required constant monitoring. I had calorie based rules for everything. Limits for every meal and limits for the entire day. If I was going to drink alcohol I wasn’t allowed any food. I counted the calories burned during exercise in an attempt to cancel out what I had consumed. I knew & counted the calorie content of everything; a smint, a grape, a sip of wine. Calories were omnipresent. It was an exhausting battle against my body’s basic needs and I was miserable. My quest to be thin damaged me, physically & mentally.

I’m not the only one nor am I the most severely impacted. We live in a world that is constantly reinforcing the message that smaller is better. Putting the calorie content of every item in every menu only compounds that. It won’t encourage ‘healthy eating’, everyone already knows what foods are full of saturated fat. What it will encourage is distorted view of what a healthy lifestyle is. It will support the diet culture narrative; fewer calories are better. Looking at the numbers every time we go out to eat will reinforce an unhealthy relationship with food. People will feel guilty for ordering the dish they want. It’ll trigger obsessive thoughts and behaviours in those who are dealing with or have experienced disordered eating. It will cement the connection in the collective mind between health and calorie control.

I posted about this legislation on my Instagram stories today and have already received multiple messages from people who have been distressed by seeing these menu additions. These are people trying to claw back control of their eating. People who have worked hard at ignoring that voice in their head telling them what they can and cannot have. They’re scared. Genuinely frightened of how they feel when they see signs telling them how many calories an adult shout eat in a day. Worried about the thoughts the calorie count on their coffee provokes. This isn’t a surge towards a healthier society, it’s a huge step backwards.

The problem with this move is the thinking from which it stems. Our government is telling us that being fat is a problem. That fat people are a burden we must shift. That isn’t true. There is no proven way to permanently make a fat person thin. Diets do not work; within 5 years 95% of those who intentionally lose weight will regain all they have lost and more. Calorie restriction is not sustainable. More over, it is not good for you. It ignores the intersections between weight and poverty & disabilities. Not to mention the impact of medical weight stigma on the health of fat patients. There are many lifestyle changes a person can explore if they want to improve their health. Focusing entirely on calories and weight loss is not one them. Health and weight are not intrinsically linked. Adding the calorie content to menus is dangerous. It sidesteps the issue of public health and props up stale old diet culture tropes.

I am not a doctor or an expert. I am merely an informed former victim of the diet industry. I am a fat activist and as such I can see that many people may dismiss me as having an agenda. With that in mind I point you towards the following resources.

Dr Asher Larmie

Marquisele Mercedes

Dr Joshua Wolrich

Gillian McCollum

Alishia McCullough

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Something’s gotten hold of my heart…

As I have mentioned, more than once, I having been some extra health issues. Yesterday I saw my GP and she gave me some answers. Unfortunately they were neither want I expected or wanted them to be.

It seems that long covid has become permanent a more of a problem. The tachycardia and breathlessness that I have been experiencing since having covid in Oct 2020 have been significantly worse over the last few months. I am breathless after a few steps. My head spins the minute I stand up. I faint daily. My heart tries to burst out of my body and my chest hurts. All the time. In the past when I felt like this it has been related to aneamia & b12 deficiency. I have had lots of issues with really low haemoglobin and although I never get to ‘normal’ my bloods aren’t dangerously low at the moment. We did a bunch of treatment, but I didn’t feel any different. I had some more tests, kept a symptom diary and recorded my heart rate a few times a day. My GP’s conclusion is that covid has damaged my heart function.

She is fairly certain that I have some kind of heart arrhythmia or PoTS. The prospect of neither fills me with joy; PoTS in particular is very frightening. I have been referred to cardiology and more tests will ensue. I really expected these issues to be related to existing conditions. It was a shock to be presented with a possible new diagnosis. The thought of these symptoms not improving or even worsening is overwhelming. I have enough health problems. I don’t need anymore.

All of this to say two things. Covid is no joke. Even if you get through the initial illness ok, there is no telling what it will do to your body. Please don’t pretend this pandemic is over. There are still huge communities that of sick and disabled people who are high risk. Even healthy people can be really badly effected. Wear a mask, keep your distance, wash your hands! None of these things are hard to do. And, I am feeling scrambled. I don’t know how to process this new information. Physically I am a mess. I’m very apprehensive of what is to come & my head is all over the place. So, please bear with me if things get inconsistent around here.

close up of ly’s  face wearing brightly coloured mas and thick black glasses

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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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Comfortable…

We’re all familiar with those comfort zone quotes, yes? Basically the message being you have to step out of your comfort zone to achieve success. There’s a grain of truth. Sometimes you have to try new, scary things. There are certainly times when you must push yourself. What happens to that wisdom when comfort isn’t exactly part of your repertoire?

Magic is on the other side of your comfort zone in blue letters on cloudy sky background

Perhaps I bring my own hang ups to this, but I’ve all read this kind of advice as a dig. To me it feels like being told I’m not brave or ambitious or working hard enough. Long before I had physical health issues I struggled with mental illness. As a result, comfort has been hard to come by. When your head is making you feel that everything is wrong, you’re never very comfortable. The world is an assault. Every decision is fraught, navigating daily life can be arduous. Living in that state makes running away from comfort the antithesis of healthy.

Jump to now, when I am somewhat healthier mentally, but much more unwell physically and it seems more nonsensical. I’m not sure I remember what real comfort feels like. I wake up in pain, I go through my day in pain and I lie down at night still in pain. My mind is continually balancing what I can do against what needs to be done. Even in moments when I am physically resting my thoughts are rarely in repose. When washing ones hair or making a phone call is ‘out of the comfort zone’ is doesn’t feel like the magic lies there.

In fact, I’d go so far as to say my best work comes when I can create as much ease as possible. I have a tiny office in my home with a desk etc, but I do much of my writing with my laptop on the sofa. I rebel against traditional work clothes and wear what I feel like me in. I say no to projects that I know will be too much. I give realistic timescales and I guard my boundaries. When my body/mind or both are screaming, I stop. I do so because I know what lies beyond that line is breaking point. I am aware that this may go against much of hustle culture, but I believe I produce magic when I am whole.

A line of matches.  Going from unspent to cmpletelt burnt out o

This doesn’t mean I don’t stretch myself. I give talks when public speaking is absolutely not my strength. I do so in ways that are safe for me. I spread them out, I’ll talk only on topics that I feel passionate about & to groups that I think are worthwhile. I lay myself bare in articles, but only on my terms. I have undertaken things that I doubted I was capable of; I did them when I was up for the challenge. I have never found bulldozing my limits to be productive.

I live in a world where comfort is rare and precious. Almost everything involves some kind wrestling with myself. I do not enjoy it. I am not prepared to make that a virtue. What’s more, I contend that this applies to most. You shouldn’t have to go to war to succeed. Your level best is good enough. We all need a hard no in our vocabulary. My best lives in a cocoon of measures that help me feel my best. I’d suggest that yours might too.

Ly  is wearing an aqua dress with floral leggings leaing against a post with a hand on her hip n

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Boost a booster…

Since the emergence of omicron I have been increasingly relieved that I have had acesss to two vaccines & a booster. As a chronically ill person I can’t afford to be blasé about any variant. It also leads to me think about those who don’t have free access to these life saving jabs.

As a result this month I have decided to support Care International’s campaign to fund the cost of covid vaccines for the world’s poorest & most vulnerable families. Care put the cost at £22, but you can donate more or less. It is disgusting that the most vulnerable people do not have access to these vital vaccinations. If we are in a position to make a donation I really feel we have a responsibility to do so.

Please give of your can.

Don’t leave me this way…

Since we seem to be heading full steam into SUCK IT territory for the disabled & chronically ill I wanted to talk about my experience of covid. There has been an overarching theme of those with existing health conditions being dispensable from the start, but now it’s pretty much being explicitly stated by our leaders. I want everyone to know how frightening this is for those of us that so many are happy to sacrifice.

As a person with chronic health issues (arthritis, fibromyalgia, stomach disease, anaemia, PCOS) I took covid seriously from the beginning. Lockdown was a complete lockdown for me. I stayed at home. I had no visitors. All my essentials were delivered. The only contact I had with anyone was the occasional driveway visit. My sister or bestie would stand in my drive and I’d sit in my open from door. I didn’t touch another human being or leave my house for months. I had hospital stays without visitors, didn’t celebrate my 40th birthday and spent Xmas 2020 at home on my own. My lockdown stretched on further than the official stay at home orders. Since early 2020 I have spent the majority of my time at home and I have been scared since the beginning. I had no idea what covid might do to me. I’ve experienced catching bugs or viruses that were no biggie for others, but sent me to the hospital. Every time I heard of someone dying being caveated with they had existing health problems, I knew that could be me. This pandemic has always been an emergency situation for me & those like me.

I now regularly see family & one close friend. I wear a mask, sanitise, stay outside as much possible. If I must be inside I go to places that follow all covid precautions and I exercise extreme caution. Doctor appointments aside I leave my home about once a week. I still have everything delivered and avoid contact with those outside my immediate circle. I do home tests before and after I go anywhere. With a couple of exceptions a restricted life has become my normality.

I contracted covid 19 in oct 2020. At that point I was spending 99% of my time alone at home. I was seeing only my sister, mum & nephew and wasn’t visiting anyone indoors. I still managed to catch the virus despite none of the family I was in contact becoming infected. The acute illness was not severe. It lasted about ten days & felt like having a stomach flu. I had more gastric than cold/flu like symptoms. My cough was very mild. I lost my sense of smell & taste. I felt terrible, but I didn’t require any medical attention. In the following weeks I really struggled with breathlessness & racing heart but assumed this would pass. It did not.

15 months later I am still dealing with long covid. My already limited mobility has been massively impacted. I become breathless even moving around my own home. I have to sit even to brush my teeth, make a cup of tea etc. I have overwhelming fatigue, brain fog and widespread pain have markedly intensified since having covid. I experience palpitations and chest pains on the slightest exertion. My heart rate regularly climbs to heights whilst trying to complete the most basic of tasks. I have been hospitalised on 4 occasions because my heart rate would not slow down to an acceptable level. Drs can monitor and treat symptoms, but they know almost nothing about long covid. They can’t tell my why these symptoms persist or if they will ever go away. My chest x rays are clear, my heart is not damaged. The tachycardia & breathlessness are a covid mystery.

A frightening and very real mystery. It is scary to feel as though your heart is going to burst out of your body. Or to be so out of breath that your head spins and chest burns. It’s a million times more terrifying to be told that the experts have no idea why it is happening or how they can make it better. Fear has been common thread. 2021 has been a really hard year for my health. All of my existing symptoms have worsened. The added problems have caused me serious problems and I think I have picked up every cold, stomach bug & infection going. All of which has been alarming. I’m worried that the next illness or flare might be the big one. I’m stressed about all the work I can’t do and the financial repercussions of that. I am chilled at just how little I am now able to do before becoming too exhausted/sore/dizzy/breathless to continue. Most of all I am terrified of what could happen if I get another variant of covid.

I am fully vaccinated (& boosted). I have masks galore, anti bac in every bag & pocket. I still leave parcels & deliveries by the door for an hour before I touch them. I bought a device to sanitise my phone. I’m never in crowds. I rarely go out. I’m acutely aware that I was being even more careful when I caught covid the first time. Every single aspect of my life has been affected by this pandemic. I know I am not alone. Most people have sacrificed. Many are in the same boat as me & others in far more treacherous vessels. I understand that this has been a collective trauma that everyone is eager to put behind them. I just wish more people would understand that this isn’t over yet.

When you justify the need to ‘live with covid’ by saying that most healthy people only experience mild symptoms I am the exception in that sentence. People like me will die or be permanently disabled if we ignore how dangerous covid still is. I understand that you want your life back. You want to stop worrying and missing out. I do too, but if we throw caution to wind now it’s not without consequence. If we pretend that covid is just another part of life we are throwing the sick, disabled, old & vulnerable to the wolves. I believe that those lives are worth as much as any other. Our needs are already ignored in so many ways, please don’t abandon us altogether.

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