“I’ve had to grieve for my old life” – Long Covid is turning people’s lives upside down 18 April 2023 Joanna Laidlaw, 61, lives in Kirknewton, West Lothian. She has been living with the symptoms of Long Covid since February 2021 and has had to give up her job as a pupil support worker in a primary school. Joanna has been supported by Chest Heart & Stroke Scotland through the MyTailoredTalks project and is a member of the CHSS Long Covid Support Group. Life for Joanna Laidlaw was busy. A full-time job as a school pupil support worker. Shopping three times a week for her elderly mum. Visiting her son. Long walks with her sister-in-law. Then those lovely Sundays riding pillion on husband Stuart’s motorbike around the country. Then Joanna got Covid-19 in February 2021. Now, two years on, she can only look back on those busy days and weeks when she was fit and active and, as she puts it, took her health for granted. It’s been two years and I’m not as bad as I was at the start, but I’m nowhere near what I used to be. I don’t think I’ll ever recover that. I’ve had to grieve for my old life. Joanna is living with Long Covid and suffers from fatigue and brain fog. The virus has also affected her ankle and knee joints, meaning she finds it almost impossible to walk the long distances she once covered and often just impossible to walk at all. The 61-year-old, who lives in Kirknewton in West Lothian, said: “Before Covid-19, I was always on the go. I had a completely active lifestyle but not now. “I’ve tried to go back to work a few times when I thought I was feeling better. But covid tricks you into thinking you’re better when you’re not. I went back to work for a day and a half and was floored for three weeks. “It’s been two years and I’m not as bad as I was at the start, but I’m nowhere near what I used to be. I don’t think I’ll ever recover that. I’ve had to grieve for my old life.” Joanna used to enjoy lovely Sundays riding pillion on husband Stuart’s motorbike around the country Joanna has had support through NHS Lothian and Chest Heart & Stroke Scotland’s MyTailoredTalks, a digital program for those with Long Covid. She is also a member of the CHSS Long Covid Support Group, which meets online every week and has become a vital forum for patients with Long Covid. She hasn’t been able to return to work and has applied to retire on medical grounds. The mum of one has learned to manage her condition carefully by resting before and after any activity. …just because you can’t see what’s wrong with me doesn’t me it isn’t there. Long Covid is there. And it’s ruining people’s lives. A chance encounter with a CHSS employee last year signposted her to the Long Covid Support Group, which she says has been very helpful. She said: “It was actually a relief when I joined the group to see so many people like me. People think you are fine when they meet you. I’ve had so many telling me how well I look and when I say ‘I have Long Covid. It’s an illness and I’m not well at all’, they look shocked. But I’ve had to be up front with people because appearances can be deceptive. I’ve experienced that stigma of people not believing I’m really ill. “In fact, having Long Covid has made me much more aware of hidden disabilities. Just because I haven’t got a sling or a stookie, just because you can’t see what’s wrong with me doesn’t me it isn’t there. Long Covid is there. And it’s ruining people’s lives.” The power of poetry Joanna has turned to crafting – sewing and crocheting – to keep herself active. She has also kept a journal of her experiences since contracting covid and, having always written poetry, is also writing poems about the effect of Long Covid on her life. Writing in my journal and writing poems helps me a lot. I can look back and see how much I’ve improved over the months or I can get creative about something I’ve seen. She said: “Sometimes I wish there was a magic pill that could get my life back to normal, but there isn’t. I have to stay upbeat but I still have down days, and when I do, I take myself off to do some sewing and I think that there are people worse off than me to snap myself out of it. “Writing in my journal and writing poems helps me a lot. I can look back and see how much I’ve improved over the months or I can get creative about something I’ve seen. “I’ve had so much support from my husband and my son, and from my extended family and friends. I couldn’t have got here without them or CHSS.” Joanna has shared some of her poetry in the hopes of helping others who are living with Long Covid and to inspire people to do something creative to help them manage their condition. Long covid What’s it like to have long covid, everyday you struggle to get out of bed And although you’ve had a good sleep, you still don’t feel refreshed. You really have to pace yourself; you can’t do the things you did before. I did the washing, struggled to hang it out, then I couldn’t do anymore. You get the odd day when you think ‘wow’ I feel better so you get on with things about the house. Then all of a sudden you’re absolutely shattered, legs ache, dizzy head, energy all gone, you have to go and lie down. There’s days when you have no energy at all and there’s nothing you can do. The only time you leave your bed is for a visit to the loo. It’s really frustrating to adjust to the pace when before your life was full. You have to listen to what the doctor advises; oh this virus is very cruel. Your body is like a wonky battery that needs recharging all the time. For a wee while you have some power but you get drained in no time. Joanna Laidlaw 26/03/21 Time to face facts It’s time to face facts, this awful virus is still in my body After all these months, I’m still struggling to cope. It’s so hard to accept that I’m just not the same I just have to rest, take it easy and have hope. Back at work, I lasted six weeks and that was on reduced hours. I just got worse as the weeks went on, Swollen joints, brain fog, extreme fatigue. My body has completely run out of power. I’m too exhausted to do anything at night or at the weekends. My life is all about sleep and rest. That’s certainly not healthy for anyone. I just seem to do less and less. I had to try; I gave it my best, But work just now I just can’t manage. I have to realise I have an illness Which nobody knows the timescale or the damage? Now is the time to listen to my body and rest as you only have one life. No more trying to push myself to get better, it will happen given the right amount of time. No more feeling guilty because I can’t manage work No more feeling guilty of having to let people down No more feeling guilty when I have the occasional good day NO MORE FEELING GUILTY, that’s all I have to say. Joanna Laidlaw February 2022 A year ago today when I felt I just wasn’t right Didn’t realise then it was going to be such a fight. A whole year and I really haven’t done much A whole year of being completely out of touch. Limited days out, it had to be in the car But before covid I used to travel far. Tried to go back to work, that was an enormous struggle Symptoms all came back, fatigue, body aches, mind in a muddle. I used to be active, I walked, hula hooped, went out on the bike But now if I over do things, then I’m completely wiped out. People look at you, nothing visible and assume you’re alright They don’t see your pain, suffering day and night. Some just don’t understand, they just don’t get it That having long covid makes you so tired and unfit. Others are very kind and wish you all the best All you can do to recover is to rest, rest, rest. First time in my life I’ve actually felt my age, slowing down, sometimes to a complete halt. I took all the precautions but going to work, catching covid, I’ve got to remember, was not my fault. Joanna Laidlaw Find out more about our Long Covid support services and how to access them.