Tag: long Covid

  • There Is A Whole Person Behind The Line

    There Is A Whole Person Behind The Line

    Some days sadness can cast a shadow out of the blue, as easily as a letter landing on the doormat.

    Today was one of those days.

    I hadn’t planned on writing for a couple of days. I have a blog scheduled for Wednesday, already written and waiting. But this afternoon, when I collected the post, there was one letter I opened straight away. NHS, in big letters across the front.

    I am ashamed to admit I do not always open my post immediately. It fills me with hopeless anxiety. There is so much stress attached to envelopes and official words and unknown outcomes, and some days we have to pick our battles. But I sat on my bed and opened it, wondering what it could possibly be.

    It only took a few lines for my heart to sink.

    Dejection filled the very veins that, only moments earlier, had felt calmer than usual. For the last two days, I have had a small reprieve from the constant, 24/7 anxiety. It has still been there, sitting heavily in the background, but there have been brief glimpses of what life could look like if I wasn’t living inside severe panic all the time.

    The letter was from a clinical psychologist within the ME/CFS rehabilitation and management team. My Long Covid referral had obviously been sent through. I had hoped, perhaps foolishly, that I might finally see someone who could help me begin to break down the walls of fear around medical tests. Someone who could help me work out what has been happening to my body since my Covid infection at Christmas 2022.

    It has been over three years now.

    Three years of daily symptoms that are, at times, so hard to bear. I am as certain as I can be that something changed in my nervous system during that infection. My vagus nerve, my body, my sense of safety, something was altered. And whatever the cause, the impact on my quality of life has been severe.

    But as I read on, the letter painted a picture that became harder and harder to sit with.

    The team had declined to see me because I am currently receiving treatment from NTAR, the local treatment and recovery team supporting me with my alcohol use. Their guidelines state that I need twelve months of stability after treatment before another referral can be made.

    And today, that broke me.

    It broke me into a million pieces when I already feel like I am struggling to hold the existing pieces together.

    Please do not misunderstand me. I can see why the decision was made. I understand that services have guidelines. I understand that alcohol can complicate treatment, recovery, assessment and therapy. I understand that professionals have to look at risk, capacity, timing and stability.

    I accept the decision.

    But accepting something does not mean it does not hurt.

    It does not mean the situation is simple.

    It does not mean there is not a whole person behind the black and white line printed on the page.

    I do not drink for pleasure. I do not drink to be big or clever. I do not drink because it feels like a free choice. I drink because I am trying to quieten emotional pain that, at times, feels too overwhelming to survive.

    I hate that.

    I hate that I rely on a substance to help me cope. I hate that alcohol has become a form of medication for pain it was never designed to treat.

    But this is where the vicious circle lives.

    I need extensive therapy to help heal some of what has happened to me, but therapy is not easily given when you are drinking. Yet part of the reason you drink is because you cannot cope without the very help that is being withheld until you stop.

    Somewhere, a chain has to be broken.

    And I know I have to play my part in that. I know I have to stop. I know I have to move away from needing alcohol to soften the pain that threatens to swallow me whole.

    But I wish, sometimes, the question was less, “What is wrong with you?” and more, “What happened to you?”

    Because trauma is not erased by diagnosis. It is not neatly filed away with a prescription. I take my medication every day, but it does not remove the visual flashbacks that arrive several times a day. My melatonin may help my body edge closer to sleep, but it does not take away the nightmares that come four, five, six times a night.

    For years now, I have lived with flashbacks and horrific nightmares. Sleepless nights have stacked on top of each other because I am frightened of closing my eyes. Frightened of seeing the same things play out again, in different rooms, through different versions of myself.

    Education does not eliminate those experiences.

    Understanding does not numb them.

    And alcohol, for all the damage it causes, has become the thing that makes the flashbacks quieter. The thing that makes the nightmares a little more bearable. The thing that gives my nervous system a pause, even while I know it is also keeping me trapped.

    I am not someone who wants to tear systems apart for the sake of it. I do understand that services are stretched. I understand there are rules, limits, thresholds and risks. I understand that professionals are working within structures they did not personally create.

    But still, parts of the system are broken.

    I once had a psychiatrist tell me I had been failed my whole life. And while I do not say that as a defence for every choice I have made, I do think there is truth in it.

    You are given therapy, and wherever you are when the timer runs out, it stops. There are no exceptions. No matter what has been opened. No matter what is still bleeding. No matter what has been stirred up and left floating around inside you.

    It can feel like a one-size-fits-all approach to lives that have never been one size.

    But I also understand the complexity.

    How can a brain receive information, process it, and heal while it is continually being altered by alcohol? How can therapy do what it needs to do if the foundations are unstable? I understand why abstinence matters. I understand why safety matters.

    So I am not angry.

    I am not even annoyed.

    I am just devastated.

    Earlier this year, my GP told me to refer myself to Talking Therapies. I did. But because I experience suicidal ideation, they wrote back to my GP to say I could not access their service until those issues had been treated elsewhere. They also said further referrals would not be accepted until I had received the correct support.

    Since then, I have not been referred into anything else. My melatonin has simply been increased.

    And here I am again, standing inside the same repetitive cycle.

    Something happens. I am wounded at the point of impact. The wind is punched out of me. I feel defeated before I have even had time to gather myself.

    And then I want to turn to alcohol.

    Because that is what I have taught myself to do. That is what my body reaches for when the pain is too loud.

    But I know this is where something has to change.

    I need to sit with the discomfort. I need to sit with the anguish that is currently tearing through me. I need to find a way to survive the feeling without immediately reaching for the thing that keeps me stuck.

    That is not easy.

    I am writing this in real time and the discomfort is etched across my face. Tears are rolling down my cheeks. I could text a friend, but the guilt of sharing my endless heaviness feels too much, so I sit here alone instead, letting the words come out because I do not know where else to put them.

    In my last therapy, she begged me to keep reaching out for help.

    She begged me to keep asking. To keep knocking on doors. To not disappear quietly into the belief that I am too much.

    But I am always hesitant.

    I do not want to be a burden to people. I do not want to be a burden to services. I do not want to take up space that I have convinced myself should belong to someone else. That is not me. I would rather shrink myself down, carry it alone, and pretend I am managing, even when I am not.

    And maybe that is part of the problem too.

    Because when you spend your life trying not to be burdensome, you learn to suffer politely. You learn to sit in crisis and call it coping. You learn to make your pain quieter, not because it hurts less, but because you are frightened of what it means to need too much.

    There have been times I have rung the Samaritans. Times when the night has felt too heavy and I have needed another voice at the end of the line. And still, even then, guilt shadows it. The guilt of taking up space. The guilt of being heard. The guilt of placing my pain into another person’s evening, even when that is exactly what the service is there for.

    Being heard is hard.

    That is why I write.

    Because at least here, on the page, I am not forcing myself into anyone’s life. I am not making someone answer the phone. I am not interrupting their day. I am simply placing the truth somewhere outside of myself and allowing people to meet it only if they choose to.

    Writing gives my pain somewhere to go without making me feel quite so guilty for having it.

    I fear I need my heart to be placed somewhere safe, but there never seems to be anywhere safe enough to put it.

    In a perfect world, I would create that safety for myself. I would give myself the love I keep searching for in other places. I would believe I am enough simply because I exist.

    But in my world, I need to believe I am enough before I can find a reason to love myself.

    And that is where the difficulty sits.

    In AA, they often say, “Let us love you until you can love yourself.”

    And I do not think there is a truer set of words.

    Because sometimes people cannot love themselves back to life alone. Sometimes they need to borrow belief from someone else. Sometimes they need another person to hold the light steady until their own hands stop shaking enough to carry it.

    And I will be honest, because this space has always been built on honesty.

    There are times I question whether living is the answer. Not because I want to die. I do not. But because the trajectory of the fight can feel so cruelly difficult. The constant pushing. The constant waiting. The constant being told to access help, only to be told I am too complex, too risky, too unstable, too something.

    It wears you down.

    It makes survival feel less like bravery and more like endurance.

    But then my son will ring me and talk about some ridiculous new TikTok trend, like how many handshakes away from Epstein he is, and suddenly I am dragged back into the ordinary madness of motherhood. Back into laughter. Back into eye rolling. Back into the strange, chaotic little moments that remind me I am still needed.

    And I am.

    I am still needed.

    I am needed to do the job I can, even if I cannot do it perfectly. I am needed to keep showing up for my children. To listen to their nonsense. To laugh at the things they find funny. To be mam, even when I am broken behind the smile.

    So even when I question whether living is the answer, my children answer back in a thousand tiny ways.

    Not loudly.

    Not dramatically.

    Just by needing me here.

    But even this cannot last for long.

    I have children. I have to put a front on. I have to keep it together. I have to smile and pretend, once again, that mam is fine. Destroying their world is not an option.

    And as I had promised myself I would make a TikTok this week, this latest setback will probably impact that small thing too. It will deflect my plans because my resilience is flailing massively.

    And I hate this about myself.

    I have no problem pulling myself down and exposing all my flaws. In fact, it is easier to do that. It is easier to be downtrodden. It is easier to repeat the negative cycles because at least they are familiar.

    And this is where I need to stop.

    I need to wait.

    I need to sit.

    I need to accept the situation. To be understanding. To realise that my need to drink is inhibiting the progress I so desperately want to make.

    It is not easy.

    I am sitting here in real time with tears still on my face, trying to think of a plan. Not a perfect one. Not a dramatic one. Just one I can actually follow.

    Tomorrow, I will message my key worker. I will ask what the next step is. I will ask whether they are willing to support me through detox safely. A psychiatrist has said hospital would be the safest option, but that feels impossible for me right now. And because that feels impossible, the process feels stuck.

    But I cannot let stuck become the end of the story.

    I need support that meets me where I am, not where a guideline wishes I could already be. I need to keep asking. I need to keep pushing. I need to keep telling the truth, even when the truth is messy, uncomfortable and hard to hear.

    Today, a letter landed on my doormat and made my world feel smaller.

    But maybe tomorrow, a message can be sent.

    Maybe one small step can still be taken.

    Maybe acceptance does not have to mean silence.

    Maybe it can mean looking at the black and white line on the page and saying, “I understand the decision, but please do not forget there is a whole person standing behind it.”

    So this evening, I sit with the sunset that messily tinged the horizon.

    It was not perfect or neatly formed. The clouds and sun intertwined to create something beautiful, but edged. Something soft, but not untouched. Something glowing, but still carrying shadow.

    And maybe that is fitting.

    Because I am not ending today with answers. I am not ending it healed, fixed, referred, accepted or magically strong. I am ending it still hurting. Still unsure. Still trying to work out how to move forward from a few lines on a page that managed to knock the air from my chest.

    But now I sit with dusk, my favourite time of day.

    The quieting of the world around me makes me settle a little more. The noise lowers. The edges soften. The day loosens its grip.

    And for now, that is enough.

    Not fixed.

    Not fine.

    But here.

    Still here.

  • I Want To Know But Not At The Cost Of Knowing

    I Want To Know But Not At The Cost Of Knowing

    Friday was a strange day. At short notice, I got an appointment for the long Covid clinic, something I had almost forgotten about. My GP referred me last year.

    I have suffered from the effects of an Omicron Covid infection since December 2022. The infection itself was not bad. Two days and I was over it. But the after effects wreaked havoc on my body. I can only presume it attacked my central nervous system, damaging key regulators such as the vagus nerve.

    But advocating for yourself does not mean you are going to be believed or understood. I always knew it would be a battle if I ever found the courage to face the brutality of the crippling after effects I have been left with.

    My body is not the same. I do not even know where to begin in trying to explain how severe the symptoms are. And yet I know trying to get a doctor to listen might be even harder. Especially when self advocacy is alien to me.

    Initially, for eight months, I was bedbound. I experienced horrific POTS type symptoms, a racing heart when I stood up with no relief, air hunger, adrenaline dumps. I lay on my bed twitching, unable to talk, unable to regulate my breathing, feeling like I was dying, my body reacting to some unseen trigger. The psychological effect of that was horrific. But the symptoms were real. The feelings were real. There was nothing psychological about lying there with no escape from the hell of severe panic triggered by nothing, several times a day, for hours at a time.

    My body forgot how to breathe. I was winded just by sitting up. It was as though my body would no longer let air in the way it used to. And there was so much more. The desperate need to swallow constantly. A numbness in the back of my throat. The feeling that my tongue was too big for my mouth and not knowing where to put it. The sensation that my throat was closing. The constant unconscious, forced need to tighten throat muscles just so the feeling of dying between each breath would subside. Feelings that lasted all day. Not being able to breathe through my nose with any satisfaction. Everything feels different now. My body is not working how it should.

    And then came this appointment, where I had to advocate for myself. I had to tell this doctor that I was not uneducated, that regardless of my complicated mental health difficulties and my alcohol addiction, I am still insightful, accountable and capable of understanding my own health and the things preventing me from feeling normal.

    On Friday I sat with that doctor and he spoke, but he also let me speak, for one hour and twenty minutes. He gave me the time and the space to explain things. To be open and honest about how Covid had damaged my body, and how there were clearly psychological issues at play too.

    We laughed, and I became teary at times. I try to joke about my broken body, about being scared of my own shadow. I mock myself to show humility rather than accept that perhaps things have never been good, and that being gentler with myself might help. But I cannot do it. I cannot accept that I deserve kindness. I cannot accept that I deserve love. I cannot accept that I deserve self love. If I dared to love myself, I think I would break even more, because how do you show yourself tenderness when you have never believed you deserve it?

    I went through my history. My childhood, my poor mental health, and my current health in relation to long Covid. He joked that his job was to catastrophise, and I already believed the catastrophe before it had even happened. He knew his words would cut through me like a screeching child in a silent room.

    He wanted a full panel of bloods, looking further than the basics. He wanted inflammation markers, coagulation tests, hepatitis B, hepatitis C. He reeled them off one by one. Then he wanted a chest X ray and an ECG.

    I am certain he knew what my reaction would be after the long conversation we had just had. I told him I would find it impossible. Which sounds so crazy. In my head I knew there was no chance I would be able to go through with those tests. I want to know, but not at the cost of knowing. Where does that even come from?

    The truth is, I do want to know if I am ‘dying’. But I also feel it is better for me not to know. The doctor felt it would be more harmful to me to have the tests done than not to do them. Instead, he is referring me onto a psychological long Covid pathway, where I will work with a therapist in the hope of slowly reaching a place where I can tolerate the tests I currently cannot bear.

    And this is where my humiliation cuts deep. From the youngest of ages, my parents manipulated a narrative they wanted me to believe and accept. My mam wanted me to know that there was something wrong with me. From as early as I can remember, she would tell me there was something wrong with me. Then she built on it. As a young child I began to get severe headaches, and this was accompanied by severe sickness. She told the doctor she believed I was allergic to chocolate. I believed her. Until after I ran away and decided to test the theory. It took every ounce of resolve to stand in a doorway after eating a Kit Kat, at the age of 18, taking the smallest bites, waiting to see if I would throw up, waiting for my stomach to turn.

    It did not. I was not sick.

    She told me I had a spot on my head and neck and that it meant I had a brain tumour. There was no joking. No playful teasing. She meant every word. I would stand in front of her mirror. She would analyse my body and with each spot she found the escalation of her diagnosis would mount. It became the norm. She would tell me incessantly, yet she would not take me to the doctor.

    But why was I so sick as a child? The answer may never be proven, and it would be dangerous to say fully what I believe. But I was sick for a reason, and my mam was the only person who had access to what I ingested.

    My dad reemphasised the fear around health. I would hear things like if you are nipped you will get cancer and die. If you go outside without me, you will die. My mam would tell me not to eat apple pips because I would get appendicitis and die. If I took medicine I would die. I was suffocated by the words. I was suffocated by fear that lodged itself into every part of my life.

    Eating became immensely hard. My parents diatribe of constant fear. They would make me chew and over chew, they threatened that I’d choke if I didn’t eat so precariously. Each mouthful was painful. I would feel overwhelmingly nauseous, and every attempt to swallow took careful timing and accuracy just to avoid the dread. My mam would cook food and force it upon me that carried further choking hazards. It was as if she readied me for battle. Fish with bones was a favourite. I was sucked into a vacuum of fear, daily, constantly. There was never any sense that I could be fixed. In my world, you were either fine or you died.

    I do not believe that I was or am fixable.

    I cannot face those tests because if there is something wrong, in my head, then to me it means I am dead. And if there is something wrong, it also means my mam was right. It means there was something wrong with me all along. How do I ever recover from knowing she was right after all the heinous things she has done?

    So the shame of carrying what my parents brainwashed into me lies beneath everything I do. The fear never fades. Their words never fade. I am a prisoner to the persistent, constant voices of my parents, the ones you trust because you have to trust them as a child, because at that time they are all you have.

    I know some people will read this and think I am no longer with my parents, so why does it still have such power over me. But that is the point. Trauma like this does not stay politely in the past. It changes the architecture of your mind. It settles into your body, your instincts, your reactions, your beliefs. My parents did not just frighten me. They taught me to distrust my body, to fear illness, to expect catastrophe and to believe I was never safe. I may have left them, but the system they built inside me did not leave with them.

    And whilst there is rational within me. The overbearing, all consuming fact remains that they formed my entire sense of self and only by rebuilding that can my thought process fully be eradicated and rebuilt.

    And maybe that is the cruelest part of all, that even now, their fear still speaks through my body louder than my own voice ever learned to.