Over the faultline…

In a previous post I discussed some developments with my long covid debacle. I had to wait a while to see a specialist and have some tests done, but I am now closer to a diagnosis. I will speak on that later as I have two more tests to under go before that is finalised.

I am feeling deflated. My appointment this week didn’t hold any surprises, but there weren’t answers either. The consultant couldn’t give me any opinion on whether my current symptoms would improve or resolve. She also didn’t have any suggestions to improve symptoms that I am not already doing. Drs still have a lot of ‘don’t knows’ when it comes to long covid. That’s not anyone’s fault, but it is incredibly difficult to deal with. As I have said before, the thought of being stuck in my current condition is terrifying.

Large modern glass and steel hospital building

I am trapped within by body’s limitations. I feel useless and unreliable. In the last two weeks I have had to miss a funeral, reschedule medical appointments & cancel just hanging out at my friend’s house because I was too ill to get out of the house. I can’t keep up with housework or actual work. I am almost always saying no. When I see my niblings I can’t play the way I want to. I can’t help out my Mum friends/family the way I want to and used to. I can’t visit friends I haven’t seen since pre pandemic because the night before I am due to go I end up in hospital. Any outing I can make I constantly interrupt with my need to rest. People always have to ask if I am ok, if I can manage and so on. I hate it. I don’t want the people I love to be worried about me all the time. I make everything harder for everyone.

Women’s legs on a bench with handbag and walking stick

For me this is failing on all fronts. I’m not doing anything well. Doing everything that has been suggested to help and having no improvement is so dispiriting. Gentle exercise might help, but too much will exacerbate symptoms. I struggle to do 5 mins of gentle yoga stretches without getting so dizzy I pass out. Swimming is great, but I’ve been advised not to go alone. I’ve doubled my fluid intake. I’m resting and doing all the recommended exercises when I am sat down. I stand up slowly, clench muscles and don’t stay in the same position too long. I’ve gone for every test and treatment. I’m utilising every trick in my pain relief deck. I’ve cut back, more rest days, meditate, take deep breaths. Nothing works. My pain levels have not reduced. Dizziness & fainting will not abate. My heart continues to race and I can never get a breath. The brain fog is the worst I have ever experienced. No one has any other help to offer me.

California fault line

I don’t know how to adapt to this. It is very hard to see how I live a fulfilling life in this state. I know I have felt this way before and found a way, but my horizons keep shrinking. Hopefully it will get better or I will rise to the challenge. Right at this moment I don’t know how to do that. I am more stuck than I have ever been.

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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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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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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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Red Alert…

The discourse around Sarah Everard’s disappearance has been horribly familiar. The tired victim blaming about where she shouldn’t have walked. The same sinking feeling as the days go by. Duplicate faux shock from men when we recount what life is like for women. The self-same chorus of ‘not all men’. Year after year. Case after case. Victim after victim. It is always the same. None of this is new or surprising. It’s just horribly sad & terribly frightening.

Women aren’t under any illusions about the world we inhabit. We know that we aren’t safe. We’re scared when we walk home alone from the train station. We calculate the threat of each interaction with a man we don’t know. Fashion make shift weapons from handbag contents. The rules are ingrained; no headphones at night, carry your keys, shout fire instead of rape, call me when you’re home! We have been absorbing the message that we are in danger since childhood.

There is no poor decision making. We are simply living our lives. Avoiding all risk isn’t possible. No matter what complex precautions we take, we are exposed. If the journey from my bus stop to my house is along dark, quiet streets then I have no option but to regularly walk alone on dark quiet streets. We don’t have personal escorts, we can’t control who will sit next to us on the train, taking taxis can be cost prohibitive & most cab drivers are men anyway.

Dark,  foggy residential street

We know that ‘not all men’ are dangerous, but we don’t know which ones are. From childhood girls are bombarded with harassment. It never stops. Teachers & drs & bus drivers & our friend’s dad & policemen & strangers on the street & priests & guys in bars & colleagues & friends & lovers. Lots of women aren’t even safe in their own homes. We all have stories of close calls and false alarms. Most is can tell you about the encounters we couldn’t escape too. It is not a revelation that most guys aren’t going to murder us. Knowing that doesn’t change our real fear because often it’s the one you trust who will. The worst case scenario is a reality and we’re reminded of that every single time a man stands too close or lingers too long. We are adding up where this is headed when a creep makes a crude comment or gets aggressive when told no. Here’s the thing that not many men will admit, you know it too. You all know men that you wouldn’t want alone with your sister/daughter/girlfriend. You see those scary men shouting at us on the street and grabbing us in bars. Every time you tell a woman you care about that you’ll see her home or to her car it’s because you are fully cognisant if the threat. The more insidious of you get a kick out knowing you can frighten us without losing plausible deniability. Not all, but definitely enough.

I read a story recently about a guy who got a big cash in hand payment & had to take public transport home with the money. He was on high alert for the whole journey. Everyone looked suspicious. He second guessed his every move. When he relayed how stressful the journey was to his wife, she replied ‘ now you know how I feel everyday’. The solution to this problem isn’t changing female behaviour. Our awareness is at code red. Let’s tackle the predators not prey.

Instead of rushing to shout ‘not me’ men need to listen. They must examine their own complicity & learn what would actually help others feel safer. Challenge your gross friend. Know when your voice is helpful and when it is silencing. Let’s begin to have real conversations about getting more women into key positions. Our criminal justice systems approach to violence against women still needs an overhaul. Perhaps most importantly we all need to think about how we raise our children. The cycle must be broken. Too many women have already been lost.

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I can’t get no…

Sunrise is rather pretty this morning. I’m trying to revel in the beauty of nature, but I’d happily skip it for some sleep. I’ve not had more than 3 consecutive hours slumber in an age. I’m tired & sore & grumpy, damn it. I want to do the whole gratitude thing, but I think a big old moan would serve me better. Indulge me.

Pink sunrise through bedroom window

For starters, it’s Sunday. The sabbath has always been my least favourite day. I think it’s probably a remnant from childhood. That weekend’s almost over & I have to go to mass vibe was not a winner. The dreaded Sunday feeling clung on past horribly hungover Monday morning uni lectures & into the days of 9-5 grind. Even now when I can structure my week however I want, the downer remains. Sundays make me blue.

Circular mirror with blue backlighting

The next item on my pointless gripe list is scents that aren’t scents. This one has been getting on my wick this week. Probably because I have too much time on my hands & am seeing tv ads. If you’re naming a product & its smell is a selling point, pick something that actually has an aroma. Diamonds don’t smell. Bright copper kettles do not have recognised scent. Silk is not an olfactory delight and no one wants their bedsheets to smell of secrets. Please stop it.

Another whinge stemming from lack of a stimulating life is my hatred of bangs. Too much social media has resulted in over exposure. Americans are all desperate to cut their own ‘bangs’. Fringes are cool upon many a forehead, calling them bangs is not. It makes no sense. A fringe describes exactly what it is. It’s a wee fringe of hair for your face. Perfect. What the fuck does the word bang have to do with it? And why is it plural? I could almost get over the nonsensical name, but not the pluralisation. One fringe per head! What are you playing at Americans?

I return to you after dealing with the bane of my life; the dishes. I hate washing dishes. It is such a con. Dirty dishes are basically a microcosm of adult life. No matter how many or how quickly you wash them, there will always be more. Fuck those filthy little bastards.

All of which brings me to the biggie, sex. How the hell am I supposed do without a shag for months on end? Sex would mitigate so many of the problems corona has created. Bored, stressed lacking exercise, a vigorous shag is just the trick. An orgasm will defeat your insomnia & improve your immune system. Scared and angry distract yourself with a nice bit of cock (or whatever takes your fancy). Getting it on would take the sting right out of this isolation. Alas quarantine doesn’t permit ‘conjugal’ visits and I would most certainly throttle any man I had to be locked down with. So, in conclusion I definitely won’t be getting any for the foreseeable & I’m a whingeing nightmare as a result.

Plus size arse in black knickers with text,  no sex please, we’re quarantined

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Power to the people…

I’m utterly disgusted at the election results. Beyond that I am saddened & scared. English & Welsh working class voters supporting Tories is incomprehensible. To sell out hungry children, homeless & disabled people for Brexit is vile. The future looks terrifyingly bleak. Our NHS is in real danger & the most vulnerable people in our society are likely to persecuted further. I am grateful for the limited protection being in Scotland offers me. It has never been more clear that we need to be free of this rotten union. My heart goes out to all those who fear what the future brings under another Conservative government. More than ever we have to do what we can for those who will be left in need.

A day in the life…

This morning I was rudely awakened at about 3am. The ill mannered culprit was pain. This time it was intense & centred in my stomach. So, i got up, took my stomach meds, some painkillers & hoped for relief.

Relief was not to come. I lay in the dark for half an hour waiting for the medication to work it’s magic. My body was having none of it, a wave of nausea washed over me & I knew I was going to be sick. I ‘rushed’ to the bathroom where I proceeded to vomit repeatedly. Each violent wretch sent pain shooting down my back. An hour later I’m sweating, dizzy, sore & unable to get off the bathroom floor.

All the throwing up had triggered some hefty heartburn & reflux, but meds weren’t  an option for fear of kicking off more vomiting. I slowly picked myself off the floor & retreated to the living room. Once situated on the sofa, I turned out the lights & put Joni Mitchell on low.  Over the next several hours,

I tried breathing exercises,

put on my tens, 

paced, 

drank mint tea,

curled into ball,

took more medication, 

vommed more medication 

watched the sun come up

& resigned myself to having a rough day. 

That’s exactly what happened. Today was a riot of pain. My stomach continued to be a nightmare. My back ache progressed into agony. I was intermittently sick throughout the day. Thus I had to cancel appointments. Most of the writing scheduled for today wasn’t even attempted. More housework piled up as I struggled to control my pain & rising panic. An acute flare like is this stressful because I never have any idea how long it might last. I could be in better shape tomorrow or I could be in hospital. I live alone & I work freelance; if I don’t do it, it doesn’t get done. I worry. A lot. I grow concerned about 

staying solvent, 

my professional reputation,

keeping my home presentable,

keeping myself presentable,

how I will keep important appointments,

letting my loved ones down, 

losing control of my mental health, 

Basically, I worry about everything, from the state of my kitchen floor to the state of my relationship. Of course all this stress is detrimental to my health. Especially with regards my to stomach problems, stress is the enemy. Likewise, stress is an anathema to sleep. Lack of sleep makes illness more difficult to cope with, but of course pain & illness also make it harder to sleep. If I can’t manage my anxiety it will spiral into panic attacks & depression. Any decline in my mental health reduces my productivity, my ability to leave the house & my chances at engaging with the world positively. Around & around I go. Symptoms exacerbate symptoms all adding up to an almost permanantly exhausted, scared, sick & sore me. 

And this is my life. This level of illness is not rare. My good days are not pain free. I don’t know when the bad times will hit. I wake up every morning with no idea if I’ll be able to get out of bed. Chronic illness is fucking nightmare. It forces you let people down, to miss huge chunks of your own life & to live that life always walking on broken glass.