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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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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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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Another little bit gets lost…

I am not ok. I’m never really ok, but right now, I am especially not. Long covid is ravaging my life. Six months since testing positive & no improvement in the ‘left over’ symptoms. I’m really scared that I am going to be stuck like this indefinitely.

The breathlessness & tachycardia are relentless. The slightest exertion leaves my heart racing. I can’t stand long enough to brush my teeth. Moving from room to room requires a sit down recovery period. My pain & gastric symptoms have all been intensified. They show no signs of easing. Fatigue is overwhelming. My brain often feels like mush. I lose track of what I am saying mid sentence, I need lists & alarms to remember anything. I cannot get anything done.

Pulse oximeter  with heart rate at 180 & oxygen 95

Keeping up with normal life admin is a constant struggle. Cooking, cleaning, laundry, washing my damn hair have gone from difficult to near impossible tasks. Getting dressed is a mission. Trying to work is a lottery. Maybe today will be the wonderful day my brain & body both allow productivity. More likely, I will spend a week doing ten minute spurts of writing. What used to take a morning now feels like completing my magnum opus. I rarely have the energy to leave the house. A trip to the drs or an afternoon in company takes days to get over. Everything hurts massively all the time. I’m exhausted all the time. My heart pounds & my breath escapes me. Eating more often than it results vomiting. My life is getting smaller & smaller. I’m frightened.

There are no good days. Never an opportunity to catch up. I’m in a continual state of anxiety over all the things that never get taken care of. I feel useless. Stuck. I wasn’t in great shape to begin with. There were always limitations, but now they are endless. I can’t see any solution; there is no one else to do what I can’t. Even if there were, it would decimate my mental health to be that reliant.

Doctors don’t have the answers. Nor do they have the resources for many of the treatments they’d like to offer. Every referral is waiting list. My existing conditions are running riot & symptom flares do not respond to previously effective interventions. It is exceptionally hard not to feel hopeless.

Ly is wearing sunglasses, face mask &  hospital gown and standing in front of x ray sign

I’ve been here before. Each time I’ve reached a new spoonie milestone it has been hard.Realising the pain would never entirely go away, each new diagnosis, having to use a walking stick. They all took time to accept. More time to learn how to manage. Every time I add something to the list of things I simply can’t do anymore it hurts. I’ve grieved so many versions of myself. I have long let go of the idea of a normal life. This feels different. It’s not an adjustment, it is shifting most of my life into the can’t do column. No one can tell me if this will ever get better. Or worse.

It’s testing me on every level. Keeping my mental health afloat is getting harder. I have no control over this. If I push myself I feel worse for longer. I am helpless and useless. My head has no off switch. I fret about the mounting piles of unattended business. My life feels simultaneously hectic and ground to an absolute stop. The stress is too much. The pain is too much. The fatigue is too much. Every inch of living feels too hard.

All the while, life goes on. Bills need to be paid, grass cut, deadlines met. I have responsibilities & commitments. Covid isn’t anyone’s fault. I am acutely aware of how many have lost more. As guilty as I feel, that doesn’t make this any easier. I think maybe I needed to say it out loud. I am no ok. Not even close.

The words I’m not ok on black background

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