How on earth do I still feel rough? Is this all in my head? Am I making it all up? Am I fraud of the entire healthcare system and should I just be cracking on with life?
I question myself daily, but the truth is, no. In fact, absolutely not.
With an extremely high pain threshold, a previously active and healthy lifestyle and a desire to be back teaching so badly that my family & Drs have to be very blunt with me, I have to remember that I am actually quite unwell. Whether I like it or not, sometimes you have no option other than to listen to your body because it’ll stop for you if you don’t first.
Testing positive for Covid-19 on the 13th November 2020 has changed things for me more than I could of ever imagined. I’m now heading towards 6 months sick off work and that alone is unlike me — the kind who needs forcing out the door to go home and rest. Even when a colleague asked me if I was okay the day I just felt a bit run down on that day in November — I definitely ugly cried but then we laughed. Meanwhile, even with a positive PCR and having been unwell, I’m still in denial that ‘long covid’ has, temporarily, changed my life. I could bore you with the symptoms of my initial infection and isolation but the reality is, as you’ve probably read in the media, that it’s ‘just like the flu’. That’s for another day but trust me when I tell you, it is NOT just like the flu. I wish it was!
Similar to the flu yes you need bed rest and fluids, but normally you’d bounce back after a few days and maybe after a week or two of recovery you’d feel back to yourself again. With Covid, it is different. This is only my account but I’ve read plenty others if you don’t believe mine. Amongst the fevers, loss of taste & smell, headaches, exhaustion, gastro issues and the many, many more symptoms, you don’t always bounce back to normality after the two week isolation (it was still two weeks when I was unwell). I lost my taste and smell on the second day I tested positive and it didn’t come back for months. In fact, it is still distorted now — some smells aren’t as strong, other’s are just off and I often get a sense that I can smell burning, even though there’s nothing around. I have been exhausted since testing positive and I’m talking utterly fatigued, sleep isn’t refreshing and I have to sit/lie down/nap every single day between activities. That’s not bouncing back like the flu.
Fast forward to the end of January, approximately 7–8 weeks after testing positive, I’d been back at work for Spring term 1. Looking back I’ve no idea and neither do my close family & friends know, how I managed to work for that long — given it was also remote learning on top of the normal hecticness of teaching and that we’d only been informed a short 12 hours before (Thanks Boris for that). I love my job and if you know me well you’ll know I’d do anything for it. But short walks on duty at playtime and around the block at lunchtime with friends, were both leaving me breathless and with unexpected chest pains. That’s not the flu.
I made it to February half term but since then my body crashed, I’ve not been able to work since.
Since the beginning of February I have now trialled a blue inhaler and a brown steroid inhaler, I’ve had a chest x-ray, a resting ECG, a 24 hour ECG monitor, my blood pressure taken too many times to remember, 3 hefty lots of bloods taken, another resting ECG, an Echocardiogram, a course of anti-inflammatory tablets and a CT pulmonary angiogram scan. I’m awaiting appointments with the chronic fatigue service and local physiotherapists and also need pulmonary function tests. All of this and months later I’m no further forward in how I feel. No one’s fault, research takes time.
I’ve tried slow yoga, breath work, apple cider vinegar, steam inhalations, hot water bottles, I’ve eliminated caffeine and maintained a balanced diet but really I am just desperate to get dressed up and head out for a million espresso martinis! I’ve had 22 sessions of Hyperbaric Oxygen Therapy, acupuncture, taken B12 supplements to support my iron levels and to be honest I have pretty much exhausted all routes of these kind. I’ve read and listened to enough research to build my own library and my Mum is basically my medical PA. I’m the first to tell the Drs that I’m not the expert, but when long covid is still so new it has paid off more times than not, to have my research ready to discuss and back up my questions. Most professionals have been interested in the evolving crisis of long covid and I’m extremely grateful to the support groups online and those people who’ve shared their stories already.
Drs don’t know when I will be able to return to work. I know it will be one day in the future but when you’re used to routine, were able to exercise before work if I fancied it and was non-stop socialising, to say it is a slight change to what I know is a huge understatement. When you love your job like I do, that is scary. I know work isn’t everything but when I’m so physically restricted it is heartbreaking for many reasons. My new (and hopefully temporary lifestyle) is the opposite — much more sedentary and I’ve had to learn to appreciate the smaller things in life. I’m very lucky to be supported in so many ways that I shouldn’t be worrying about anything that this impacts in my life, but I’m human so I do.
I am a spontaneous person who often was told to slow down and look after myself (Oh, the irony now! A post for another day…) as I would be too busy in one hour/day/weekend. This has been my biggest change and challenge - pacing. I am physically limited by my body at the moment. I am lucky in that this hasn’t ever been something I’ve had to contend with long term, but now I’m planning my days around resting in order to be able to get through the day.
An extremely slow walk down the road or going up the stairs to the toilet is enough to trigger intense heart palpitations and chest pains alongside the breathlessness during any movement. Being so out of breath even when resting has been scary at times but I use what I know to try to remain calm. The fatigue I’m experience is debilitating. You know when you take a nap and it either makes or breaks you? Mine break me every time. Sleep isn’t refreshing at all, it’s mostly uncomfortable for my body but when I do sleep, I wake feeling rough. Every single day for a very long time now. To shower in the morning I have to check I’ve got enough energy to wash my hair and deal with it afterwards. I often need to rest between showering/dressing/doing hair. Not that I was a fan of make up anyway but now it is just way too much bother. Not forgetting that I have to have eaten breakfast and drunk enough water before I shower… and obviously making and eating breakfast is an event between rest periods either side. No wonder everything takes so long as it is all like this — rest, short activity, rest, rest some more. I plan to have one main activity a day as that’s plenty for me. Throughout the week I need at least two days where I don’t leave the house.
Everything planned around my fatigue levels and need to rest — driving, I can handle about 15 minutes without feeling exhausted, socialising with my favourite people I get 1 good hour but I’m building this up because this serves me well but it is truly enjoyable when someone else can drive me so I don’t have to think about the energy for getting home. Most importantly I have to save any energy I do have for the best things in life — family & friends, sea air, ice cream with a view (so grateful for Cornwall!).
One of the most fatiguing parts of all that? The planning itself. Pacing isn’t easy as it takes a lot of practice to know when to rest, before you tire. That’s difficult to judge when you’re constantly fatigued. But you learn to understand when you need to schedule rest in amongst certain activities which require your energy — this may be mental, emotional or physical. You’d be surprised how much mental energy a 1 to 1 conversation zaps from you when you’re limited each day.
Some days you don’t gauge it correctly and you suffer, but if you’ve enjoyed yourself at the time — is it better to be wiped and enjoyed yourself or wiped anyway and maybe feeling flat? Who knows but I have to ask myself this daily as I have to prioritise what I need. Sometimes you just need a laugh with your girls and you’ll pay for it but rest for longer the next day. Ups and downs, twists and turns — it’s a roller-coaster and I’m clinging on to the ride with everything I can. This too shall pass.
Hopefully many lessons are being learnt through all of this and there will be elements that I can carry on with. It’s an ongoing process, I’m trying my best to go with the flow.