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

If you enjoy my writing you can support me on Ko-Fi

Why am I like this?

If you are a regular reader you will know that I have been going through a process of diagnosis related to Long Covid complications. I had hoped that I would have definitive answers by now, but alas, my body is being a dick.

When last we spoke I was awaiting tests to confirm or rule out POTS. Well, after it seemed unsafe to continue with the first part of that test, the second was scrapped. Now I have more waiting to do. The consultant will decide our next move. I’m really disappointed as I had thought we were close to diagnosis. I know the idea of hoping for positive tests might sound strange to most, but the sooner my condition is labelled, the sooner it can be treated. Being chronically involves so much limbo. Waiting to see drs, waiting for tests, waiting for treatment, waiting to see if you respond. Having someone say this is definitely the problem and here is the plan, is a huge relief.

White women wearing large glasses and a mask is looking at camera
Worn out after test fails.

In the meantime my spoonie adventures continue. Lots of pain, fatigue and dizziness are the norm. Fainting at the drop of a hat and constantly fighting to catch my breath have further restricted my activities. I spend way too much time at hospital appointments, and too little doing what I love. I’m struggling, but trying to remain even a little upbeat. On we go.

Long hospital corridor

If you enjoy my content you can support me on Ko-Fi.

My week in pictures…

The sun is out and I have a had a nice week. Here is what is have been up to.

I had a lovely time with some of my little ones. Everyone was feeling snuggly this week, so auntie ly got all the cuddles.

ly is cuddling baby twins and a four year old

The wildflowers I have planted have come out in force this year and they make me so happy. I have these beautiful Marguerites at my front door that make me smile every time I leave the house. Bees appear to love them and this week ladybirds were also enjoying my blooms.

Marguerites and pink flower bud surrouned by greenery d

On Thursday I met my very favourite man for drinks and some chat. It was crazy hot in Glasgow so I opted for a super floaty and light outfit. It was nice to be out and having some adult conversation. Much fun was had.

ly is standing with one hand on hip wearing sheer black maxi dress
Dress – Primark
Kimono – Simple Be

Unfortunately my body rebelled and Friday was a festival of pain. It’s looking like a weekend of rest and recovery. I hate that there is always a price to pay, but I still really cherish the days I get to do lovely things.

Black and white cat stretched out asleep on a purple sofa
Bronan approves of the plan to rest.

Nails done…

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

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

Two hands showing deep red and silver manicure

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

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

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

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

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

* Brand Ambassador. Not gifted or sponsored.

If you enjoy my content you can support me on Ko-Fi.

Video killed the radio star…

In my usual very late to the party I have lately been getting into YouTube. It is one of my new insomnia coping strategies. Since I am all about sharing, here are the channels I’ve been watching in the wee small hours.

If girl boss/self help influencers drive you crazy, Keyas World is the perfect counter point. It feels like toxic positivity is on the rise. Social media is full of no excuses, manifest it, take some supplements bullshit; it infuriates me. It’s all a con, they always have something to sell you and that product is usually snake oil. They target vulnerable people without the credentials to justify the advice they spew. I love the way Keya’s World debunks these charlatans with humour whilst highlighting the harm this rhetoric can do.

Women with a picture of brain on her head. Brain scan images behind her. The words Brain Scam at the top

On a similar theme there is Okay-ish. This YouTube channel & podcast is the work of Maryellen Dance, a licensed mental health counsellor. She takes on self help influencers who offer unqualified mental health advice. If you have ever watched Rachel Hollis or Mel Robbins and came away feeling shitty, you need to check out Okay-ish.

Pink background with white script okay-ish

I know why I watch true crime content; it makes feel more prepared to know all the insane tactics that dangerous people use. However, I do not know why I tend to consume it in the middle of the night. In any case when I can’t sleep ThatChapter’s non sensationalised take on true crime works for me.

Screen shot from that chapter YouTube

I can’t get The Late Show With Stephen Colbert on any of my streaming in the UK, so I was very pleased to find I could watch most of the show on YouTube. He has good guests, his monologue is funny and he just comes across as a nice man. The fact the I find him yummers doesn’t hinder my enjoyment either.

Stephen Colbert with nyc in the background.  Text says the late show with Stephen colbert

Finally, I have found YouTube to be a great resource for finding gentle Yoga & Pilates. I can’t manage much on the exercise front. Being able to do accessible routines at home has been very helpful. My current favs are Yoga with Uliana and Nhs Pilates for Beginners. Both have wide range of videos for different abilities, the nhs one is great as they have videos for specific problems. Exercise in my living room is excellent for me as getting to a class would likely use up all available spoons!

Women in pink leggings doing crossed legged Pilates stretch . Txt reads nhs Pilates for beginners

If you enjoy my content you can support me on Ko-Fi.

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.

If you enjoy my writing you can support me on Ko-Fi.

Day Tripper…

Life is a bit more of a grind at the moment. My body isn’t giving me the easiest of times and as a result I haven’t been able to get out much. In the last couple of weeks I have managed two excursions and this is what I wore.

Two Fridays ago I took a trip to a fun little farm park called Monty’s with my sis & her boy. The boy loved the place and it was very accessible for Auntie ly too. Loads of places to sit and rest whilst he ran around. Oh & loads of cute farm friends too.

Dress – Asos (very old)
Tights – Snag
Glasses – Where Light

Yesterday I managed a lovely trip over to my bestie’s to have a good carry on with her brood. It felt so good to be out of the house and with people I love. Outfit wise, I went for a super cute jumpsuit. This one is lightweight and loose; perfect for a sore body on a muggy day.

Jumpsuit – Asos
Sports Bra – M&S
Sandals – Pillow Slides

If you enjoy my content you can support me on Ko-Fi.

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

If you enjoy my writing you can support me on Ko-Fi.

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

If you enjoy my writing you can support me on Ko-Fi

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

If you enjoy my writing you can support me on Ko-Fi.