Long-COVID written over a background of disposable face masks

Long-COVID

COVID-19 has changed the world in a whole lot of ways. After a year of Lockdowns and the vaccination roll-out many of us can now see the light at the end of the tunnel. Not long after the first few cases of COVID-19 were confirmed in the UK I remember having a couple of discussions. These discussions were around the likelihood of ‘post-viral’ illness hanging around long after COVID-19 has been vaccinated into oblivion.

Oh how I wish I’d been wrong about that. Unfortunately for many people, beating the COVID-19 virus has not been the end of the story. There are reports of a whole range of long-term symptoms and medical complications popping up in the post-COVID population. Since we’re still in the early days there hasn’t been a whole lot of research into what’s going on or how to cope with it. For now, those with long-term health changes post-COVID are all standing under a giant umbrella simply labelled, ‘Long-COVID’. Healthcare services are putting together specialist clinics but there’s a whole lot of people to get through these clinics.

Long-COVID shares a lot of similarities with bits of conditions I’ve been working with for years. Because of this, I’ve already starting working with some individuals as they get to grips with their Long-COVID.

With those experiences in mind. I’ve crammed together my best Occupational Therapy advice for those dealing with Long-COVID into this handy article. Just click on the hyperlinks to see specific advice on that topic.

The range of symptoms being reported is frankly massive. Everything from hair-loss to muscle weakness is popping up on the radar. I’ve tried to focus on the symptoms I have the most experience with. As with any condition, everyone will need to develop their own ‘Tool kit’ of strategies, equipment and support in order to cope with their individual symptoms.

Fatigue

One of the most common symptoms seems to be fatigue. Not just ‘I had a long day, I’m a bit tired’. But ‘if my house was on fire I would struggle to get off the sofa’. Fatigue is a really sucky symptom to live with. I say that as both an OT and as someone living with chronic fatigue. Interestingly, it’s one of my favourite things to work on as an OT. I absolutely love teaching fatigue management skills. I’m a firm believer in the fact that proper Pacing, Prioritisation and Planning are life-changing. I’ve written a little bit on Pacing but I also offer a Pacing Masterclass. It’s a 30 minute appointment with handouts designed to explain the key elements of pacing and how to apply them.

Sleep

Alongside fatigue often comes insomnia. I know, it sounds odd. You’re tired all day then as soon as you turn off the lights at night you’re wide awake until 4am. Many people with chronic conditions find they struggle with un-refreshing and restless sleep. Part of my advice for coping with this is following good Sleep Hygiene practices. I do also offer a Sleep Hygiene Masterclass. In addition to sleep hygiene, relaxation can be a fantastic addition to your night-time routine. A good friend / colleague of mine, Kim Clayden Online Psychotherapist has a free relaxation recording on her website. You can download and play as you drift off to sleep (hopefully). Insomnia can often cause serious anxiety. It helps to keep in mind that you will sleep at some point. You might end up with a thoroughly ridiculous sleep cycle for a while but you ARE STILL SLEEPING. Don’t let the 4am doom and gloom thoughts convince you otherwise.

Pain

Chronic pain, particularly muscle aches are often reported by those living with Long-COVID. Pain management is a complex and often multi-method issue. The most effective approach is often a combination approach of medication and non-medication based methods. Strategies like pacing will also help hugely. For those struggling with muscle weakness. (Or limbs that periodically stop co-operating). Mobility Aids might be a useful way to keep active and engaged with the world. There’s often a lot of hesitancy around using mobility aids when your own mobility is sometimes OK. But having aids on hand for bad days then not using them on good ones is much more effective than not having them when you need them. Intermittent use of assistive aids is common, sensible and totally acceptable.

Fitness

One of the somewhat surprising factors with Long-COVID is the sudden onset. For the majority of chronic conditions there’s a period of gradual onset where ill health sort-of sneaks up on you. There’s no definitive start date, you just look back one day and realise that your life is totally unrecognisable. Although this sucks it does mean that the majority of folks naturally acquire coping strategies as they go. Dealing with one or two symptoms at a time. Long-COVID is a little different. Plenty of previously fit and healthy people are developing a whole host of symptoms over the course of days or weeks. Not months or years.

For those of you who were marathon runners, gym-goers and cross-fitters the sudden inability to exercise without days of ‘pay back’ is probably giving you the illness equivalent of cabin fever. I watched this happen when my Parkour-obsessed partner spent 6 weeks with his arm in a plaster cast. Bouncing off the walls and trying to learn to exercise one handed.

It is possible to exercise when chronically ill but you might have to re-frame what exercise means to you. If you’ve been on bed-rest for 6 weeks, your first bit of exercise is going to be ‘sitting up’. It usually takes a lot longer to re-gain fitness that it does to lose it. If you’ve been unwell for 6 months, plan for a 6 month+ ‘re-conditioning’ phase. Pacing is key, take lots of regular breaks. Find ways to smoosh exercise into your daily life rather than having specific exercise sessions. You can find out more about that here. Exercise can be particularly difficult if you’re struggling with Postural Tachycardia. (Racing heart, dizziness, palpitations, fainting and other elements of Autonomic Dysfunction). Many also struggle to regulate their body temperature.

Relationships

The impacts of long-term illness are not all physical. Medical procedures are traumatic, feeling like your body is falling apart is traumatic. There is no dividing line between your physical health and your mental health. They’re intrinsically linked and intertwined. Don’t be afraid to ask for help and support with your mental health as much as your physical health.

Personal Relationships can change dramatically with a sudden change in health. Suddenly finding that your significant other(s) are now carers too can make it difficult to keep the relationship side of things alive. Open communication is super important here. If you’re struggling with something, chances are your partner wants to know about that. Recognise a struggle, then work on a solution.

Your personal relationships might not be the only ones that change. If you’ve gone from ‘one GP appointment every 4 years’ to ‘Hospital Frequent Flier’ you’re probably struggling with a lot of frustration about how slowly things can work. 8 weeks for an outpatient appointment might seem speedy for the doctor but it’ll drag for those stuck waiting for help. Believe me, I get it. 18 months waiting for a Tilt Table Test taught me that patience is essential. Healthcare is a marathon not a sprint. It’s important to have good Therapeutic Relationships with your healthcare team. You might be seeing them a lot and they’ll be a key part of you learning to live with whatever symptoms modern medicine can’t fix yet.

Summary

I want to finish by saying that there is no direct link between health and happiness. Sure, it helps to have a body and mind in tip top shape but it is possible to be chronically ill and happy.

Over the last 10 years my health has been fairly plateaued. I have chronic pain and fatigue, my mobility is a million miles away from what it used to be but I’m mostly able to leave the house when needed. Thanks in part to a LOT of different mobility aids). The important part here is that over those 10 years my quality of life has fairly consistently gotten better. I work longer hours, I’ve expanded my services and I’m teaching students. I have hobbies, a social life and I’m growing a lot of my own fruit and veg. In short, despite my wonky health and ongoing medical dramas, I’m happy. A big old chunk of what got me there is the advice I’ve shared in this article.

I really hope this has been useful. Please do feel free to comment with questions or simply share your own experiences.

JBOT

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