To Do When Housebound (tips from a chronically ill woman for those caught out by COVID-19)

Damn this pandemic has come out of no where and hit us all hard, hasn’t it? Even I’m feeling the effects of it, and it’s made approximately no difference to my lifestyle. But that tells me that healthy people, or at least, more able bodied people than me, must really be struggling.

So, I thought, why not duck in and talk about 10 things you can do at home with all this time you’ve suddenly got on your hands? And, hey, you’ve got one up on me: you’ve still got energy!

Have a structure in place

Look, I don’t expect you to have a rigid, minute-by-minute schedule in place for your day, but I have found it is good to have at the very least a loose structure for how your day will be spent. And make sure to switch things up a bit. It may seem like a good idea to get sucked into something for hours on end, but too much of that, for too many days at a time, can really wear on your mental health. So, if you can, aim to have a healthy mix of things you do each day. This will help keep things from becoming too tedious, and if you’re smart about it, may minimise some of the stir-craziness that comes from also being at home.

That project you’ve always wanted to do, but never had time for

Fortunately for us, a lot of places are still open for business online, which means that project you’ve putting off for “some day”? Now is the day. Spend some time planning, researching and putting in orders for whatever materials you need. It may take some time, but hey, you’ve got it now!

Read a book (or maybe two or three)

Seriously, I find very little more comforting than getting lost in a book when I need to leave behind the stressors of life. Is it escapism? Maybe, but I think we could all benefit for a little bit of escapist reading! Especially at the moment.

Pick up a new hobby

YouTube is a housebound person’s best friend. Want to learn how to cook? YouTube. Want to learn about dress history? YouTube. Want to know what to know why tumbleweeds tumble? YouTube (no, seriously, it’s on there!) What I’m saying is, it’s never been easier to pick up a new hobby, or learn a new skill, than it is now. Take advantage of that! And if you have kids, maybe you can try learning something together? I don’t know. I don’t have children.

Begin learning a new language

If you dedicate even just half an hour a day to learning a language that interests you, you’ll probably amaze yourself with how far you get. I can’t do that (yay brain fog!), but you probably can. So, why not give it a try? Whatever language it is, there are probably plenty of resources. YouTube, Skillshare and Duolingo are all good places to look.

Redecorate

Seriously, it doesn’t have to be a big paint job, but taking time to plan out a redecoration or rearrangement of your home or room, and then actually doing it, is a fun way to spend your time. Plus, it may force you to sort out that pile of rubbish you’ve been ignoring for the last two years. And, in the end, you get a nice, clean space that feels new and looks pretty.

Research!

I don’t mean academia level research for the purpose of writing a paper (although, if that floats your boat, you should definitely do it). But there is a wealth of information out there on a wide range of topics, most of which we don’t get time to explore when we’re running around between work and activities and all the other things that keep us busy. So, why not use this time to explore some of it? Who knows? You may even find something that really ignites your interest and passion.

Clean your house

I don’t know about you, but I found cleaning so easy to overlook when I was busy with other stuff. Now, I still can’t clean regularly, but you can. Take the time to properly scrub those floors, wash those windows and polish the furniture (or whatever cleaning entails for you). The physical activity will help, plus, you’ll get to live in a cleaner environment. And a cleaner environment is a considerably less stressful one.

Watch a TV show (or many)

Don’t be afraid to step outside your comfort zone! Try watching shows in other languages, watch that murder mystery, dive into sci-fi, try period drama. I don’t know. I’ve seen a lot of people complaining about needing new content. As someone who has spent four years housebound to varying degrees, I can assure you: we are not lacking in content. Just be willing to give stuff a try. You might surprise yourself. And you’d be amazed what you can learn from TV shows.

Organise video calls with your friends

Honestly, do it. The isolation is one of the hardest parts about being housebound, but at the moment everyone else is in the same boat. So make use of that! Don’t be afraid to organise a time to sit down with a friend (or group of friends) with some tea and coffee and spend time together over video call. Facebook Messenger, Zoom and Skype are all wonderful platforms you can do that on, and I, for one, am so grateful this tech is available.

So, there you have it! 10 things you can do at home to help keep yourself sane!

A Quick Check In

Hey all,

I know I’ve been quiet for a while. Unfortunately, I have really been struggling with my mental and physical health this year. However, I am back, and will take things as they come. Hopefully, that will mean being able to get back on a regular upload schedule, but if not, well, c’est la vie. I do, however, have things lined up for the next couple of weeks, so I hope you’ll check those out as they come.

These are insane times, and I hope everyone is staying safe and well. To the healthcare workers, supermarket staff and other essential workers: thanks for working so hard to keep the rest of us safe and society functioning!

For now, adieu,

Laura Dee

What is CFS?

So, I keep talking about CFS. I’ve told you that I have it, I’ve told you when it’s affected me and I’ve even shared a day in my life with it, but one thing I haven’t done is explain what exactly it is. That is my goal with this post. Here, I will explain what CFS is, clear up some potential confusions and explain important terms. That way, when I talk about my CFS, I can send you back here if you need any clarification.

What is CFS?

CFS, or Chronic Fatigue Syndrome, is a condition characterised by extreme fatigue that has lasted longer than 6 months. It is not a well understood disease. We don’t know what causes it, why things exacerbate it or why it sometimes just disappears. This means that while we can treat it and learn how to manage the symptoms, there is no known cure. For some people, it seems to resolve itself. For others, it is lifelong.

It is important to note that fatigue is not tiredness. Tiredness is what you feel after a long day at work. Fatigue is what you feel after a month with a newborn who refuses to sleep. Except, with CFS, there is no newborn, we just feel that way all the time. And sleep doesn’t solve it. In fact, unrefreshing sleep is actually a symptom of CFS.

CF vs CFS vs ME

If you’ve Googled CFS, you’ll recognise these terms. The differences are confusing, so let me clarify.

Chronic fatigue refers to chronic fatigue in general. This can be a symptom of another disease, such as fibromyalgia, insomnia, sleep apnea or even depression and anxiety.

CFS refers to the health condition entirely defined by chronic fatigue, particularly in the absence of any other known cause. It can exist alongside other conditions. For instance, I also have depression and anxiety, but my CFS is unrelated to them.

ME stands for myalgic encephalomyelitis. This is the British term for CFS, so you may see it referred to as CFS/ME. The two names for the same condition came about as they were being observed in the mid-1900s in both the USA and the UK. The two countries both named the disease, and then compared notes.

Symptoms

CFS has various symptoms and differs between people. However, there are two defining symptoms experienced across the board: post-exertional malaise (PEM) and brain fog.

PEM

PEM stands for Post Extertional Malaise. It refers to the worsening of symptoms triggered by activity.

Most people with CFS can engage in some level of activity.l However, how much we can do before we trigger our PEM varies from person to person and even over time. We refer to the amount of activity we can manage as our “thresholds of activity”, or simply thresholds. By being aware of our thresholds and taking breaks before we cross them, we can usually manage our condition relatively well.

NOTE: PEM is why exercise is not actually helpful for us. Unless we are careful, exercise makes things worse.

Brain Fog

Brain fog describes the cognitive impact of CFS. This includes forgetfulness and difficulty concentrating. For most of us, thinking feels like swimming through molasses, or peering through fog – hence the term! Brain fog tends to be the aspect I struggle with the most: I love being able to read and write and think, and when I can’t do those things, I feel bereft.

Pain

Unlike with PEM and brain fog, pain is not experienced universally, nor is it experienced in the same way. Still, a fair portion of people with CFS experience some pain. There are different types of pain: joint pain; muscle pain; headaches; sore throats; and lymphatic pain.

I experience muscle and joint pain, headaches and sore throats. I have found no pattern in what triggers the sore throats or headaches, but my muscle and joint pain are usually triggered by standing or sitting for too long. Just yesterday, I had to stand on a train for about 20 minutes, and spent the rest of the afternoon and evening in severe pain. In order to be able to sleep, I had to ask Mum to massage the painful muscles and then followed it up with heat packs for about an hour.

Unrefreshing Sleep

I mentioned this one in passing earlier, but it is worth explaining a bit more. This symptom does not mean that we never wake up feeling refreshed. Sometimes, we do. But I have found, in general, that it takes at least an hour, usually two, between me waking up and me feeling ready to start engaging with life in some way. I have also found that the mornings I do wake up feel rested, I end up experiencing more fatigue later in the day.

Flares

Flare is the term for periods when our symptoms are more debilitating than usual. It is different from PEM in that PEM is specifically triggered by activity and rarely last longer than a few days. A flare, on the other hand, is an extended period wherein all of our symptoms are worse. For instance, my CFS has been flaring for the last couple of months. As a result, I have experienced more pain and brain fog, and my PEM has been more easily triggered and more debilitating. This is, of course, in comparison to the few months of relative health I enjoyed earlier in the year.

Over to you

I hope that this has helped you develop a greater understanding of what exactly CFS is and how it works. The better you understand the condition, the better you will be able to understand and support those in your life who have it. There are probably more than you realise.

Also, do you have any questions? If so, please ask! Asking questions is the only way to get answers, and is one of the best ways to learn. So ask away, and I’ll be sure to answer!

Bibliography

Of course, I have not compiled the information in this article purely from my own experiences. I have learnt a fair bit from my time with the specialists at the Fatigue Centre in Newtown and from my own researches on the interwebs. Whilst I have not included all the sources I have read over the last few years, I have included the ones that may be the most accessible to you, the reader.

If any of what I am talking about here seems uncomfortably familiar, please talk to your GP. My journey towards diagnosis was (partially) triggered by my recognising symptoms in articles or talks like this one. Please don’t self diagnose, but if you are seriously concerned, begin an honest conversation with your GP about the possibility.

For now though, adieu!

http://www.fatiguecentre.com.au/

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

https://www.healthline.com/health/chronic-fatigue-syndrome

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/