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

Oompah pah…

I returned from my German speaking adventure a week ago and am only now in possession of the spoons to tell you all about. I had such an amazing time that I wore myself out entirely.

We started with a few days in Munich. We got unbelievably lucky weather wise. The sun shone every single day. It was so warm that I wished I’d brought less cardigans and more floaty items. Don’t worry, I still put together some excellent outfits. We also saw many excellent sights and had a grand old time.

Our first stop was Munich’s old town hall. It is an incredible building located in a square full of beautiful architecture. The boy loved all the gargoyles and crazy creatures sculpted in stone. We enjoyed the sunny square whilst we waited for town hall clock to do its thing. Its thing was worth the wait. At the stroke of noon court characters began to dance and play the organ high above us. Royalty, drummers, jesters and even a joisting match spun above us as the gold clock glinted in the sun.

Munich old town hall and crowded square
He loved the hybrid creatures on this fountain.
ly posing in square wearing black jumpsuit

Just around the corner from the town hall is Munich’s old fruit market. These days the stalls have a variety of wares; hand made crafts, flowers, cheese, fruit and plenty of beer. The market is also home to lots of drinking water fountains and my nephew adored them. You can take a 4 year old anywhere in the world and they will be happiest playing with simplest of things. Thus he spent many a delighted minute emptying & refilling water bottles.

After a wander around the picturesque market, with our handmade delights purchased we found a lovely outdoor cafe to sample some German yums. The boy selected authentic Bavarian sausages and munched the lot. His Mummy & I played it safe with giant pretzels. Gran went for a truly a delicious apple strudel. We were mildly pleased with ourselves for navigating the German menu with the help of google. Even happier to receive what we had intended to order!

Our rooftop lunch spot.

We rounded off the square with stop at the the exquisite St Peter’s chapel. Although I am not Catholicism’s biggest fan, I do enjoy the beautiful architecture. My Mum, who is regular worshipper, took the opportunity to say a prayer. Meanwhile the & boy I lit a candle for our respective Grans. As we waited outside for my Mum the boy was overjoyed to meet a headless busker. Watching him come up with explanations for the man’s lack of head was exceptionally entertaining.

Our final stop in Munich was the Englischer Garten, an awesome oasis in the city. This park is the perfect sunny day outing. As you enter you can see people surfing on the man made river. The water moves so fast, watching folk brave the rapids is amazing. A few steps into the park there is the cutest little cafe, which we took advantage of. Refreshed, we ventured further and discover a fab play park for the boy to rascal. After a little rest for Gran and Auntie ly we continued on to admire ducks, pretty bridges and have a tonne of carry on.

Of course I spread some fat positive vibes.
The boy loved tricking me with the clear cola.

Munich is a handsome city. There was so much more to see, but we only had two days. We ate lots of yummy food and found the people to be really friendly. If you can catch the city in the sun even better. Public transport is abundant. If you’re struggling (like I was) street taxis are all over the place and I got Ubers really quickly when he weren’t near a rank. It’s fairly flat city which makes it easier to walk. I also found most places to have good accessibility. I’d rate it a good city for spoonies to get around.

On day three we were Austria bound on the train. Stay tuned for the next chapter of the adventure.

I was childishly amused.

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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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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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A new one just begun…

I’m not a fan of New Year’s Resolutions. It’s so arbitrary to decide we have to change at this specific time. I feel like folk put too much yucky pressure on themselves. Not to mention resolutions often revolve around unhelpful things like losing weight or forcing yourself to the gym everyday. Thus, I give resolutions a wide berth.

I do have some things I’d like to achieve this year. You will no doubt hear about those as I tackle them. Or as I grumble about how wrong things are going. Things do go wrong and that’s ok!

To do list on a clip board with go gentle printed on it

Which brings me to my main goal this year; be a little nicer to myself. The voice in my head can get harsh. I very much doubt that my inner bitch is helpful. 2022 will hopefully be the year that I give me a tiny little break occasionally. Not so much a physical break as my body pretty much demands them. What I really need to work on is not beating myself up for needing those breaks or getting things wrong. It would be nice not to call myself a useless fuck every time I so much a drop my pen. Work in progress, right?

Anyway, Happy New Year to you all. I hope this year treats you well!

Pink and blue neon gateway with big white 2022

Merry & Bright…

As I said in my previous post, I have been on the struggle bus recently. My stupid body has been making it difficult for me to get a whole bunch of things done. This has left me clinging even tighter to the things that I can master. Since one of things also offers an opportunity to sprinkle a lot festive spirit, I have been diving right into it. Thus, I give you even more xmassy nails.

I did this manicure at around 3am because pain woke me up & couldn’t get to sleep. I was exhausted and so the design is fairly random. Still pretty jolly!

Frosty White – Marks & Spencer
Everything Else – Barry M

Next up was was an icy blue set. I’ve been trying to get snow flakes right for the last two christmases. I think this year I finally nailed it. Do you agree?

Pale blue manicure with the white sparkly snow flakes design
Barry M

I’m currently sporting this lovely glittery design. Another mix & match inspired by various festive bits. I like them, but have managed to break one nail & chip another already. The brushes will be coming out again tomorrow.

Festive manicure. Frosty white nails with glittery red diagonal stripes
Frosty White – Marks & Spencer
Everything Else – Barry M

Bronan remains entirely struggle free. Oh to be a cat.

Black cat with white paws and nose lying belly up  on blankets