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Fáinche: It wasn’t my fault that I wasn’t getting better.

Updated: Apr 28

A selfie of Fáinche, a long covid Ireland member

My Story I believe I started showing symptoms of Covid-19 on April Fools' Day, 2020. As if it couldn’t have been any more of a joke. My boyfriend, who I live with, had a migraine and had to take a half day off, so that was the first sign. Then the next day I woke up with intense body aches, and what I now know as fatigue. I remember trying to brush it off as my period or Mercury in Retrograde. If only! The next day, the cough started. I panicked and called my Drs, who told me to self-isolate with my boyfriend and to not leave the house. As we were both young (I was 24 at the time), fit and healthy, and had no underlying health conditions, we could not receive the Covid-19 test. Remember that? We didn’t even have enough tests at the time in the country. What followed was a week and a half of staring at the TV and not comprehending anything. I can barely remember it. I found it hard to speak, I was completely delirious. Thankfully, I didn’t need to go to A&E, so I just got through it at home. To be honest, I generally felt much better by May. I had to take almost 4 weeks off work at this point, and I was getting bored of it. Then in May, I decided I felt well enough to return to work and also to work-out. Before getting Covid-19, I was extremely fit, I was in the gym at least 3 days a week after losing a bit of weight the previous year. The day after I did a 30 min at home HIIT workout, I knew something was wrong. I couldn’t get out of bed, it was like my skin was melting into the mattress, like I was weighed down by cement blocks. Everything hurt, even my eyeballs. Like so many others, I didn’t know what was happening to me. This is the first time in my life that I have been ill for a considerable amount of time. I kept resorting back to my default, which is ‘just push through and get through today.’ I truly believed that a night of good sleep and a LOT of lemsip sachets would cure me. It’s what I usually did when I was sick! What followed was a routine of being in work for a couple of weeks, being off sick for a couple of weeks from pure exhaustion, and then repeat. I hated being off work. I felt completely useless, and it was making my mental health decline. I wasn’t in my job for too long at that point, and I was deathly afraid that they might have thought I was taking the piss with my attendance. And how was I supposed to explain what was happening to them, when I didn’t know myself?

Finally, in September, almost exactly a Year from the day I am writing this, I had my BIG CRASH. I was bedridden for the guts of two months. The past few months of trying everything in my power to be able to work, including just working and then sleeping the rest of the day to try to make up for it, came to a head. I was in training for a new role, and I found that my concentration disappeared. My eyesight was getting blurry. I was extremely short of breath, I couldn’t handle the stairs. I needed help getting up from sitting. I needed help drying my hair. I was constantly sleeping. I couldn’t even communicate to my boyfriend how I was feeling because I couldn’t turn my thoughts into words. It was the most terrifying part of this journey. I lost my independence completely. I was referred to the Covid Clinic in the Mater Hospital, and I had to take an extended sick leave from work. That was when I found the Long Covid Cases Ireland Facebook group. Finally, I had some shred of hope! I wasn’t crazy! I wasn’t alone! I finally knew that I wasn’t inherently broken. It wasn’t my fault that I wasn’t getting better. No amount of willpower and vitamins would make the fatigue or brain fog go away, and being self-critical about it certainly wasn’t helping. Thanks to the support from the group (and counselling!), I found the strength to accept my situation and my poor health and began using the knowledge I gained from trial and error to help others. It is a brilliant community, no question is too big or too small. We hold each other up when we are down and need to vent, and we cheer each other on when one of us hits a milestone of progress. We all just want to get better. We just want to be able to do normal everyday activities, without being terrified of being bedridden afterwards. This time last year, a shower was sometimes too much for me. Now, a year on, I can have a shower, moisturize, and do my makeup before I need to rest. It’s all about increasing your baseline. I really miss being able to work out, though. I have just about gotten to the stage where I can walk 10k steps and not worry about a crash. But a 10 min ab-crunch? Forget about it. I have gained weight due to this, and that also has a knock-on effect on my confidence since getting sick. Long Covid strips away your identity. You don’t just have to fight every day to remain positive and hopeful, you also have to rehabilitate yourself and prove your illness to employers and doctors. Currently, I’m struggling through a phased-return back to work, and it’s been really aggravating my symptoms. For those out there that doesn’t believe this is real, I hope you never have to find out. I wouldn’t wish this torture on anyone. Most Challenging Aspect Having to accept help from others, and get over the denial of being so sick. Financial problems have also been a huge factor. Even with support from work, there are some months when I worry that I won't have enough money to pay for rent. And I never got the Covid Illness Benefit because I didn't have a test when I first got ill. We need more support for people who are unable to work.

Most Positive Aspect The people I have met online through the FB community with Long Covid. My relationship has improved with myself. Being bedridden and alone with your thoughts for too many hours has a way of making you look at past traumas and find healing. I have found this experience, as hard as it has been, extremely therapeutic.

Hopes for the Future I hope they understand it better. That the world's researchers unite and share the information instead of having hundreds of independent studies doing the same thing and no one being any the wiser. I hope that this sheds light on all those who have suffered with Chronic Illnesses before Long Covid. This isn't a new thing, people go through this every day. There needs to be more support for them, finances-wise and health-wise.

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