Living with Long COVID for Nearly Four Years
I’m living with long COVID, and it’s coming up to four years now. I’ve lost so much during this journey, including a career I spent 25 years building. My relationship broke down after my partner cheated on me for 15 months and then blamed my illness.
My health seems to bring new concerns every month rather than getting better, and I’d now consider myself to be 86% disabled.
“I live with pain 24/7, 365 days a year, and it’s horrendous.”
Before COVID, I was always on the go. I’d work anything up to 80 hours a week, and when I wasn’t at work, I’d be out walking my dog or socialising with friends. I was really enjoying life. Then I became ill, and my whole world stopped.
I became isolated from my friends. They were booking holidays and getting on with their lives, and I felt like I was being left behind. It was hard watching everyone else carry on while I was struggling just to get through the day.
Losing the Career I Loved
When I lost my career, I was devastated. I’d worked so hard to get where I was, and I absolutely loved my job as a senior care assistant in a dementia home. My job meant the world to me, and it was a big part of what allowed me to enjoy my life.
“Losing it put me in a really dark place. I felt like I wasn’t living anymore; I was just existing.”
Before I became ill, I was independent and never relied on anybody. Now, I can’t even cook for myself. I have to rely on microwave meals and protein shakes to make sure I’m getting some goodness into my body. I need help with showering, which is embarrassing when I’m only 48 and never imagined I’d be living like this.
I’ve got disability aids around my home to help me with everyday tasks, and I even had to get an automatic car with a push-pull lever so I could continue driving.
I need help opening bottles and jars, and there are so many little things that people take for granted that I can no longer do for myself. Even after nearly four years, I’m still struggling to come to terms with how much my life has changed.
The Pain Never Stops
I’m on a lot of medication every day just to try and function. I take morphine four times a day, but it only really takes the edge off the pain. I also take amitriptyline at night to help me sleep.
Living with constant pain is exhausting, physically and mentally. It’s hard to explain what it’s like when you’re never really free from it. I never know whether I’m going to get better, or if this is how life is going to be from now on.
I just take each day as it comes, but it really upsets me because I want nothing more than to get my life back. I want to work again, enjoy the things I used to do and just be the old me.
Losing the Person I Thought Would Be There for Me
On top of everything I was already battling with my health, my relationship ended. I was broken when I found out my partner had been cheating on me for 15 months. I genuinely thought we were strong, and he was my everything.
After everything came out, my body went into a big crash. I felt sick every day and suffered headaches that felt like having a hangover, even though I don’t drink because of my medication.
“I genuinely thought we were strong, and he was my everything.”
It felt like my whole life had come crashing down. I was already trying to cope with an illness that had taken so much from me, and then I had to deal with the heartbreak as well.
I cry constantly and feel so low. Some days it’s hard to know how to keep dealing with everything that’s happened. I’ve had some really dark thoughts along the way, and there have been times when I’ve struggled to see a way through it all.
My Grandson Gives Me a Reason to Keep Going
My grandson is my everything. Before he was born, I was in a really dark place and couldn’t seem to get out of it. Now he’s here, he’s given me a reason to keep going. I want to watch him grow up and be there for him.
We have a great bond, and he gives the best cuddles. He’s only two, so he’s full of life, and I love him to bits. But it upsets me that he doesn’t understand why Nanny can’t get down on the floor and play with him or do certain things with him.
“… he’s given me a reason to keep going.”
I want to be able to do all those things. I want to run around with him, play with him and make memories without having to think about what my body will allow me to do.
It’s heartbreaking when you want to do something so simple with someone you love, but your illness stops you.
I’m also incredibly grateful for my son, daughter, son-in-law and my best mate. They’re a great support to me, and without those four people, I’d be completely stuck and lost. I honestly don’t know what I’d do without them.
I Wish People Understood What Long COVID Really Does
One of the hardest things is feeling like people don’t understand. I wish more people knew about long COVID and what it can do to someone’s life. There are still people who think it’s made up or doesn’t exist.
The amount of times I’ve been told to stop being lazy and relying on other people, as if I just need to get on with it and I’ll be better. People can make it sound as though it’s just the flu, but it isn’t. They don’t see the pain, the exhaustion, the medication or the things I’ve lost. They don’t see how much of a fight everyday life can be.
I also belong to a Facebook group for people living with long COVID. Checking in with them three or four times a day brings me comfort because they’re the people who really understand what we’re going through and how it feels. Sometimes, just knowing there are other people who understand makes me feel less alone.
I’m Still Hoping to Get My Life Back
I still don’t know if I’ll ever get better. I don’t know if I’ll get my old life back, and that’s something I struggle with every day. All I want is my life back. I want to work, to be independent, to enjoy life and to be the person I was before all of this happened.
For now, I’m taking each day as it comes and holding on to the people I love. I just hope that one day things will be different.
