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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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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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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And just like that, I’m not ok…

I have just finished the first episodes of the much awaited And Just Like That. I was excited for the return of the S&TC girls (I know). I loved the original. I even liked the slightly dodgy films. I was so happy to see them all again. And now, I am not ok.

Poster for and just like that featuring Sarah Jessica Parker , Cynthia Nixon & Kristin Davies

If you’re planning to watch & don’t want me to spoil it, stop reading now. If you’re still here, how are you doing? Did you survive that first episode? I was so unprepared. Not until Lily started playing those foreboding notes did I suspect that Big was in danger. Those sneaky fuckers got me. As soon as the scenes started cutting from big on the bike to Lily on the piano; I knew. I didn’t want to accept it though.

I was really enjoying happily ever after with Carrie & Big. He’s still hot. Still colouring outside the lines. Still an old school romantic. Carrie is still Carrie. The writing is good. The shoes are better. It was all working until they broke my heart. This is not the forever I was looking for. How can Mr Big be dead? Why on earth did the writers think we could cope with this storyline?

Still from and just like that. Carrie cradling Big in her arms

I can’t stop crying! Listen, I always cry at the sad bits. Books, films, tv shows, life. If it’s sad, I cry. However, I think after 2yrs of a pandemic and all it brought maybe everyone’s emotions are a little raw. I find it increasingly difficult to view a whole range of media. The news is obviously a very rough watch. Fiction isn’t really much easier. The stress, fear, anger, grief has been turned up so high in real life that I really struggle not to absorb those emotions from fiction. I start feeling sad about a storyline and before I know it I’m flooded with a million real things to be sad about. Repeat for anger and so on. I’m beginning to think that Covid has left even more of a mark on me than I realised.

I’m wondering if others aren’t feeling the same. We’re all aware of the trauma covid brought. Huge losses & life altering changes. I’m not sure we have properly thought about the long term impact on our collective psyche. Lots of us were lucky enough not to lose a loved one. Many careers have not crashed and homes are maintained. A significant amount of people didn’t even get sick. Nonetheless, everything feels different. Also, the same. Is this chiming with anyone?

I feel like the world should have changed. So much of it hasn’t and that feels incompatible with where we are now. It’s hard to climb out of all those extreme emotions we’ve been swimming in. It’s even harder not to feel the need to revolt against those who still can’t bring themselves to care. I can’t articulate it perfectly, but I feel something has shifted. It could be wishful thinking. I hope not. It’s like the other shoe is just dangling from a single toe now. The people who least expect it might be about to get squashed.

ly wearing tortoiseshell glasses leaning her head on one hand and looking fed up

Well, that was quite the leap. From a 90’s reboot to revolution in less than a 1000 words. I think that might actually prove my point; there’s a lot bubbling right under the surface. Anyway, in brief, whether you’re sad about John James Preston, the damage a global pandemic has wreaked or the craven shower we are governed by, I feel you. It’s hard to keep it in. You’re not the only one. Be gentle with yourself.

I was lost…

It’s 2.35am. I’ve been alerted via social media posts that it’s World Mental Health Day. I feel bound to write something on the topic. However, I’m a little stuck on exactly what that should be.

We’re probably all feeling stuck in one way or another. Nearly 2 years into a pandemic that has changed everything and nothing at the same time. It is surreal to learn that global crisis is status quo for the capitalist monster. It shouldn’t really have been a surprise, but somehow I thought perhaps we might find a way to rise. We haven’t. The incredibly rich continue to suck the (literal) life out of almost everyone else. Those already in the worst positions suffer the most. The rest of us get sick, grieve, sacrifice, struggle and still find ways to pay the rent. It’s A LOT. Even folk with the most robust mental health have floundered. Anyone who was shaky pre Covid probably found the rigours of a plague made them increasingly sinkable.

I’ve found myself in and out of a strange no man’s land. Not ok, but entirely unable to properly articulate the details of that not okness. I’m generally a bit lost. I feel like the world is crumbling around me. We’re witnessing tragedy after tragedy. Death & destruction abound. Our leaders seemingly with no more clue than the rest of us. Politicians still scrambling for money & power as the bodies pile up. Your boss still wants their 35hrs, tabloids still print trash & people are still sleeping on the streets. None of it makes sense.

We’ve already started packaging the accumulated trauma of Covid as ‘burn out’. People write peppy pieces on how to beat burnout with an aim of getting everyone back to bloody work. Back to the commute & the offices even though people are still dying every day. Why? Because despite working from home actually proving to be more productive the higher ups want you back where they can see you. No comfort for the workers. The Tory government continues to grind their boots on our necks too. Cut universal credit amongst Covid & Brexit insanity. Carry on fucking the NHS and refugees and hungry children. Then they film the PM doing puns of their ridiculous slogan and pretend that’s a solution. I’m surprised anyone is still sane.

It’s not over. No definite end in sight. Always another calamity over the next hill & zero provision for help. No extra money for mental health services. Accessing even the most basic support is more difficult than ever. All the people who were already living on a knife edge haven’t gone anywhere. The problem has just multiplied.

*

So, this year I’ll repeat what I’ve been saying forever. Awareness is great, but to treat mental illness we need money and a different ideology. I can’t see any change in NHS mental health funding or direction until there is a huge change in Downing St. Not merely a change of party, but a shift in the will of power. My heart sinks when I think about how long that could take.

* Buy here.

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On the inside…

Dear Son,

It’s been another insane blur of year. The pandemic has given me lots of time & motivation to do big picture thinking. There’s been so much talk of the impact on parents & kids. The decisions to be made about keeping children safe, healthy & happy get trickier in times like this. You’re not here. Neither are your siblings. Being forced to stay home alone for extended periods really rams that fact home. I still think about what I would do. How I would make sure my children would be ok. I don’t think that will ever stop. I’ve thought through how I’d handle every stage of your lives; agonised over choices that are entirely theoretical. I can’t help it. I’m always going to be your Mum on the inside.

This year I will be spending your day doing something joyful. It came about purely by chance. Pandemic rescheduling dropped an activity unexpectedly. It feels strange. It’s not a thing I would have planned, but I think it is good. I’m trying to see it as a celebration of you. Of the tiny amount of time we had & all the wonderful that could have been. I know you would have given me so much to rejoice in.

Love Always,

Mum

Xxx

Oxygen for India…

Covid 19 has been hell. We’ve made sacrifices. We got ill, lost people, missed people, missed life. We have suffered, but we have almost made it through. Even in our worst times we have privilege. So much privilege.

Throughout this nightmare we have had access to excellent medical care & now vaccines. Many of us have had safe houses to lockdown in. Food, clean water, the ability to stay in touch with our loved ones. It doesn’t negate the bad, but it does make us incredibly lucky.

Now that we are close to escaping this pandemic we cannot abandon those still being ravaged. We have to help. India is in dire straits. We, in the west are good at taking what we want from other cultures without asking & without giving anything in return. It is past time for us all to do what we can to fight Covid in India. Please give whatever you can.

Oxfam India Covid Appeal

British Red Cross

Action Aid

Oxygen for India

Charity of the month…

It’s been another weird lockdown month & i’m only just catching up with myself. I’m getting round to my charity of the month at the last minute (again).

For March I have chosen to support the PDSA. As animal lover I’ve always thought the PDSA do excellent work, but recent months have shown me just how essential they can be. Bronan, my cat, was diagnosed with Diabetes about 8wks ago & man alive are those vet bills adding up.

PDSA in green & pink letters. Help a vet help a pet in green letters

I’m lucky to have pet insurance, even with what I thought was a comprehensive policy, there is so much that isn’t covered. It’s really highlighted just how much an ill pet can cost. With insulin, needles, sharps disposal, regular blood tests & examinations I can easily see how it could quickly become unaffordable. I am so glad the PDSA are able to step in for those in financial need. I can’t imagine being forced to make treatment decisions for a much loved pet based purely on finances. Given covid & all its implications so many more people are likely to be in this position. Hence, the PDSA are feeling the strain. Please give whatever you can spare.

Black & white cat sleeping on purple sofa

Since we’re talking about my beautiful boy I’m want to share the symptoms that first raised the alarm. The problems he had were fairly minor & I would never in a million years of thought they indicated such a serious issue. The first thing I noticed was him limping on his back right leg. Next he began to go outside much less & was just not quite himself. My first though was that he had injured himself. When he didn’t improve after a couple of days I thought perhaps it was wear & tear on his joints. I consulted my vet mainly thinking he needed some pain relief. I am so glad I acted quickly. The longer it takes to diagnose diabetes the more damage can be done. So, here are some signs to look out for.

Limping, unsteadiness particularly in hind legs.

Increased appetite & thirst.

Issues passes urine/ unusual toilet behaviours.

Sleeping more often than usual.

Confusion.

Take care of your four legged friends & if you can make a donation to help the PDSA look after lots more.

Black and white cat with his paw holding women’s arm