On 7th November 2021 it was 19 months since I contracted Covid 19. I honestly can't believe that I have been so unwell for such a long time with no significant improvements!
Living with Long Covid is physically, mentally & emotionally challenging. But I have to say the emotional challenge/burden has been overwhelming for me. I've realised that there are many areas that cause me emotional turmoil which I'm going to explore & hope that some can relate too.
This is not a 'poor me' piece...it is how I feel & hope that it can reassure others that it's OK to feel this way.
I felt an awful sense of guilt initially, when I knew I wasn't recovering, at not being able to go back to work in ED. I felt that I'd somehow let my colleagues down & wasn't helping them through the pandemic. On the flip side, I know that I did work for around 4 weeks in Covid ED & that was where I contracted Covid. But I feel that compared to most of my colleagues I didn't do much. Because I was a Bank Nurse, I had a choice....this haunts me now...I feel so guilty that I put myself at risk without considering the implications on myself & family. Despite this, I think I would make the same decision over again because that's why I became a nurse in the first place!! Potentially nurses put themselves at risk everyday in their jobs so I wasn't doing anything special.
I have felt like a failure, lazy & weak....why haven't I recovered like so many others have? Yet pre Covid, I was super fit, healthy & strong...chronic illness makes you forget the person you used to be & put these horrible doubts in your head. When I can't drive my daughters to school, make them their meals, take them shopping, watch them play sport, go out for a walk, go out for the day, when I have to plan when I rest & plan an activity only to have to postpone because I don't have the energy on the day...it's endless. I feel that I'm constantly letting them down. I feel weak & lazy when my husband has to make the dinner after coming home from a stressful day at work while I've been at home all day but by the time he gets home, I'm completely wiped out. Feeling weak/lazy doesn't sit comfortably with me...I was always a 'doer'...I felt strong by doing things & being in control, providing for my girls & husband, not necessarily financially but physically & emotionally. Now this has been taken away. I feel like I'm a spectator on my life that used to be. At times I've said to my family that it might have been better if I'd died because they could've moved on with their lives rather than deal with me as I am now. I feel such a burden to everyone! My husband's reassurance has always been that he'd rather have me as I am now than not at all. Please don't think that I'm saying losing someone to Covid is easier...I'm absolutely not...it's horrendous & I witnessed first hand while in work the devastation Covid caused in death. I don't want to die but living the life I have now is hard to accept especially with so much uncertainty around recovery.
Which leads me on to guilt....this is something I feel everyday!!! Guilty that I'm not the mum, wife, daughter, sister or friend that I was or want to be. I look at my girls...they're 12 & 14...I should be the one supporting & helping them but instead they are doing this to me. I feel guilty about the impact that this will have on them in the future, they've become more anxious since Covid hit our house & I know that the pandemic has affected children but I see their pain, hurt, frustration & anger at how debilitated I am compared to how I was before. I get it...I would feel the same if it happened to my mum when I was their age. I encourage them to let it out but sometimes their anger & frustration at me is too much to take because it hits all the spots that I already feel guilty about! It's a similar feeling of guilt with my husband. I hate that I can't ease his burden like I used too. I feel guilty that he's tired from work then has to come home to deal with me & the house when really he needs to unwind. I feel guilty that he has to drive me most places & do practically everything around the house. I feel guilty that I can't be the younger wife he married, full of fun & up for anything. I feel guilty that I have put this burden on my parents, sister & her family...I know they worry so much about me & feel helpless that they can't fix me. I feel guilty that they make me dinners or help me when I know that they are busy & tired in their lives without me adding to it. And I feel guilty about not being the friend I once was. I loved going out with friends, loved having a laugh & dance, & never wanted a night out to end. Now I can hardly see a friend for coffee never mind a drink. I can't support them like I used to or respond to their texts or phone calls, go out for dinner or lunch because of the crippling fatigue, physically & mentally. I want too but my body just won't let me & I worry that they think I'm avoiding them but don't have the energy to justify.
I feel guilty that I survived & others didn't.
HOWEVER....despite my guilt I have realised so many things about my family. I have seen how strong & resilient my girls have become. I'm so proud at how they have coped with things & how caring & patient they are. I have realised how thankful & lucky I am to have my husband. He has been & is truly amazing & I couldn't get through this without him. I'm not sure that I would be so understanding if it was the other way round! Our relationship has been tested to its limits but I'd say it has made us stronger thankfully! I've witnessed how loved I am by my parents & sister...they literally would do anything for me. And friends that have stuck by me, are my true friends...they'll take me as I am & I'm grateful for that.
I feel angry & frustrated...at the government for not providing health staff with appropriate PPE from the start of the pandemic...we were literally lambs to the slaughter!! I'm angry & frustrated at myself for getting Long Covid & wonder did I so something wrong to have caused it. I'm angry & frustrated that I can't be the old Rebecca...I miss her so much...I didn't know how much I liked her until she wasn't there. I'm angry & frustrated that I have been left to become so debilitated by this illness because of the lack of support from our health service & government. I'm angry & frustrated for others with Long Covid who've been abandoned. I'm angry & frustrated that people don't understand how torturous it is to live day in day out in this shell & think that I'm putting it on.
At times I feel so sad...sad that our world has completely changed because of a virus. Sad for the pain that the virus has caused to so many globally & for the pain it has caused my family & friends. I'm sad for myself...I go through episodes of grieving for the person I used to be & the life I used to have. I'm sad that our country is in the hands of incompetent leaders & worry how we'll turn everything around for the better.
To finish, I'm also extremely thankful.....thankful for my amazing husband & girls, my parents, sister, brother-in-law & nieces, & friends. I'm thankful for the friendships that I have made since becoming ill with Covid...I've connected with so many people that I never would have if it hadn't been for this illness. I'm thankful for the people who are trying to find a treatment & get to the root cause of this illness & hope that it will help other illnesses like ME. I'm thankful for the health professionals that have tried & continue trying to help me. I'm thankful for the charities that have opened their doors to support me; they have been a lifeline-'NI Chest, Heart & Stroke' & 'Hope 4 ME & Fibro'. I'm thankful for the opportunities that Long Covid has given me...it has certainly given me a voice!
The emotional burden/turmoil associated with Long Covid & the time I've spent alone in bed due to the symptoms has taught me to be kinder to myself & recognise that I'm stronger than I think....in fact after meeting others with chronic illnesses I'd say they are one of the strongest groups of people I have met. Despite weak bodies, their strength of character & determination could knock you over & they're not to be underestimated!!
Note: I receive regularly counselling to help me manage my emotions. I would highly recommend it to anyone suffering. Dealing with distressing emotions uses up so much energy that we can't afford to use so it's worth looking into.
Samaritans 116 123