Five Years Later: Reflections on Life with Chronic Illness

Last month marked a rather momentous occasion in my life: the five year anniversary of the onset of my chronic fatigue syndrome (CFS). That’s right everybody. I have survived five years of living with a frequently debilitating illness. I have struggled through five years of debilitating chronic illness. Can you tell that I have some mixed feelings about this?

So many of the narratives about chronic illness that I grew up with seem to fall into one of three categories:
a) miraculous recovery
b) bitter crone
c) angelic martyr
Can you guess which category my story falls into?

That’s right! (Drum roll, please) Option d! None of the above.

I am still sick. As is evidenced by the fact that I cooked dinner on Friday, baked a dessert on Saturday, and proceeded to spend most of Sunday, Monday, and Tuesday in bed. Maybe recovery is somewhere in my future, but it isn’t in my present, and there are no guarantees.

I am not, I don’t think, a bitter crone. Certainly, people still seem to like being around me, and I have yet to get the sense that they only put up with my presence because they pity me. I still laugh, dance, and sing. I write notes, give gifts, and play with my nephew. I enjoy life.

And I am most definitely not the angelic martyr. My illness has yet to transform me into the sweet, selfless being who spends her days in bed writing letters and knitting socks. And I certainly haven’t transformed the life of a rough and tumble boy who falls in love with me, only to be devastated by the knowledge that I have an incurable disease, pushing him to go out into the world as a better man, while I waste away and die. More seriously, I get angry and anxious. I cry, complain, swear, and think about giving up. I’m human.

What I am trying to say is: life is hard and messy, and having a chronic illness only makes it harder and messier. However, that doesn’t mean that life is all bad. Some of the things in my life now are really good. I have lost a lot, but I have also gained a lot. There is much of my life before CFS that I grieve, but here’s a dirty little secret for you: I think my life now is better. And these things can all be true. It doesn’t have to be one of the other.

Let’s break it down, shall we?

The Bad

• I had to quit my psychology degree, and this continues to be an ongoing source of grief for me. I love psychology, I love helping people, and I was set on becoming a clinical psychologist specialising in trauma. And I’m just not. Maybe one day I will be, but right now it feels out of reach. It is a dream that sits in a box under my bed, that I sometimes I pull out to wonder over, or to cry over.

• I lost my health. This should perhaps be obvious, but I need to say it. It can be easy for me to forget that there was a time when I could cook a dinner, bake a dessert and not spend three or more days recovering. But I could, and even though I sometimes forget that, I can’t ever forget how exhausting and painful things are for me now. There is no escape. And it hurts.

• I’ve lost friends. People who didn’t understand how impossibly hard it became for me to spend time with people, or to show up to events, and who didn’t make the effort to meet me where I was at. Everyone has their own struggles, and no one can maintain every relationship in their lives, so I’m not angry or hurt, just sad. I lost people I loved this way.

• Life is incredibly uncertain now. Every time I think I’ve got a handle on my capacity and my ability to engage with my life, I’m proven wrong. And each time I am, I have to let go of goals, of hopes, of dreams, of plans. And that’s a lot of grief. It’s discouraging. I can’t count the number of times I’ve had to ask myself if getting back up is worth it. Are the the steps forward worth it when they are always followed by a backwards tumble?

The Good

• I always get back up. I believe the Japanese have a proverb that translates to “fall down seven times, stand up eight”. Well, so far I have fallen down more than seven times, but I’ve stood up that number of times plus one. I have learnt that I am pretty damn strong. I mean, I’m back here right now, aren’t I?

• On that note, I know myself better now. I have a greater understanding of what I value in life, what my passions are, how I enjoy spending my time and energy. After all, when energy is a limited resource, your priorities become pretty apparent. And because I know myself and my passions better, I am able to focus on learning, growing, and developing the skills I truly value. I have been freed up to embrace a lifestyle that suits me far better than the one I was chasing before.

• The friendship that I have been able to maintain are deeper, stronger, and more resilient. These are people I know will stick with me through everything, and who know I value them. I’ve also developed a greater empathy for the pains and struggles of life, as well as stricter boundaries. I have always been empathic, but I have historically struggled not to be overwhelmed by that empathy. Now I know how to recognise when I am overwhelmed, and how to respond, making me a better friend and person. I understand that not everyone can understand my struggles, and I can’t understand all of other peoples’ struggles, but I also know how to show up in those times.

• My understanding of God and my relationship with him has grown and matured. It looks nothing like what I thought it should look like, but it’s better now. I’m no longer in a rush to reach some nebulous finish line. Instead, I know that the joy and the growth is in the journey, and neither God nor I are interested in rushing it. If we are to be like trees planted by springs of water, we’re going to have to remember that it takes trees decades, sometimes centuries, to fully mature.

The Before

Before I got sick, I was living in a city that felt like a home, with people I adored (and still do). I was studying a subject I am passionate about, at a university that I loved, on track to do the work of my dreams. However, when ever I asked what I’d do if I had exactly one years left to live, my answer was always “not this”. So much of what I was doing only had value if I had a future. My uni days were something I needed to do in order to get to the life I actually wanted.

I loved many of the things I was doing, but the hustle of it all was exhausting. I think I was trying to become the kind of adult I thought I had to be, rather than allowing myself to grow into the kind of adult I am.

The same can be said of my faith. I was trying to become the “right kind of Christian” rather than giving my relationship with God room to grow and mature in a way that was authentic and vulnerable.

Everything was exhausting

The After

I am exhausted all the time, but, for the most part, it is an exhaustion of the body. Sometimes, okay, frequently, that exhaustion of the body can exhaust my mind and soul as well, but on the whole, I’ve found a style of living, of being, that fits so much better than the one I was trying to fit into. I love having the freedom to learn, to write, to create, to rest, to cook, and to spend time with friends. It’s how I always wanted to live.

But I would like to be well. I want to be able to work in the morning, have a cuppa with a friend in the afternoon, cook dinner in the evening, rest well at night, and be able to get up in the morning and do it all over again. I want to be able to get lost in learning a new language for hours and still be well the next day. I don’t want to have to plan what I do, when, based on how long it’s going to take me to recover. And when I do need to recover, I would like it to not take so long.

In short, I want the life I have now, but with a healthier body.

So… what’s next?

Well, in the immediate future, I finish drinking my tea. I schedule this post for publication, and I don’t look over it again, because I have done my best, and I don’t have the energy to stress about things not being perfect. I brush my teeth, maybe do a bit of crochet, and curl up in bed.

Sometime tomorrow, I will wake up. A few hours later, I’ll get out of bed, and I will do the same thing I did today: I will show up and do the best I can. And I will keep on doing that, on the good days, and the bad days. My best isn’t perfect, it’s not what I once thought it should be, and it always changes, but it is always my best in that moment. And, honestly? No one can say better.

Celebrating Female Friendship

“I didn’t realise harems were such dangerous places,” Legend of Yunxi’s Prince Qin observes with some surprise to his wife, Yunxi, and I can’t help rolling my eyes. Of course harems are dangerous places. Of course these women are going to fight for survival, using whatever means available to them. I stop. Even as I’m berating Prince Qin for not realising women can be cruel to each other, I have been berating the writers for depicting women as vicious, catty and two-faced.

How did we get here? How did we arrive at a point where women are seen as cruel, vindictive and passive aggressive in nature? Why do the stories tell us that women can’t be true friends? Why are female friendships always seen as drama filled?

If you do a Google search of “women are vicious”, you’ll get 11,000,000 results. Yes, that is 11 million - with six zeros. That’s a lot, and this belief comes out in our media and literature in many different ways. Over the past few years, there has been a growing awareness of this stereotype and how it affects women in this day and age, which is something I will look at later. First, I want to dig into how these stereotypes came to be.

The History

The thing about stereotypes is that they come from somewhere, which usually means they have a grain of truth to them. If we accept that it is true that women are, or at least can be, vicious, passive aggressive and cruel, why is that?

I think the answer, at least in part, lies within the reasons I was defending the cruelty of the women Prince Qin was astonished by. Allow me to explain.

In Legend of Yunxi, Prince Qin is brother to the Chinese emperor, who has a large harem. The emperor is depicted as capricious, cruel and selfish, and the very survival of his wives depends entirely on his good will. They have no power, no autonomy, and no prestige outside of being his wives. This sets up something any consumerist will recognise: a demand-supply paradigm.

To elaborate: we have a group of women in demand of something that is in short supply - the good-will of their husband. Gaining this is not a matter of politics for them, few of them have any political designs. It is a matter of survival.

This social structure is not unique. We see it in a story from a completely different time and culture, the ancient Jewish book of Esther. To summarise the pertinent points of the story for those who are unfamiliar with it:

We open to a weeklong royal party thrown by King Xerxes of Persia. He has been showing off his wealth and beneficence as a ruler. On the seventh day, the drunk king decides showing off his material wealth is not enough. He wishes to show off his wife. He sends some men to order her to come wearing her royal crown. For reasons we are never told, Queen Vashti refuses. His Majesty is incensed. “What,” he asks his wise men, “must be done to Queen Vashti?” (Esther 1:15)

Everyone agrees that Queen Vashti must be punished. This rebelliousness can not be tolerated, even in the queen. They strip her of her title and access to the king. But a king must have a queen. So, they decide to gather all the beautiful virgins, give them a year’s worth of beauty treatments, and send them in, one after the other, to be assessed by King Xerxes. After he was finished with them, they joined his concubines and only saw him again if he asked for them by name. I doubt Xerxes knew who half the women in his harem were. Eventually, he chose Esther to be his queen.

We do not know what the conditions were like in the king’s harem. Were the women friends? Enemies? Were there factions? Rivalries? Not one jot of this is recorded. What we do know that there were many of them, and that displeasing the king had dire consequences, including, as Esther points out later in the story, death. Again, we see the same demand-supply paradigm set up for the women: many, possibly even hundreds of them, stripped of all power and autonomy and forced to rely upon the good will of a king who probably did not remember them.

The connection between this social structure and women acting competitively is made clear in the stories of another time and place: the books of Jane Austen.

In Pride and Prejudice, Austen tells us that social security and survival was a primary motivator for women. About Charlotte Lucas marrying Mr. Collins, even though he “was neither sensible nor agreeable; his society was irksome, and his attachment to her must be imaginary”, she tells us that “without thinking highly of men or matrimony, marriage had always been her object; it was the only honourable provision for well-educated young women of small fortune, and however uncertain of giving happiness, must be their pleasantest preservative from want.” In other words, marriage was the best way to avoid poverty.

Unfortunately, marriage was, in and of itself, no guarantee of a good life. Many of the eligible young men were insufferable (Mr. Collins), selfish (Mr. Wickham) or downright cruel (Persuasion’s Mr. Elliot). Once again we see is a group of women without any real power, autonomy or influence forced to compete for that most limited of resources: the approval and protection of a good man with sufficient means to care for them adequately.

Austen makes it clear this resulted in some women behaving in passive aggressive, or outright vicious, way. Take for instance, Miss Caroline Bingley and her hatred of Lizzie Bennet. We are plainly told that “Miss Bingley saw, or suspected enough to be jealous; and her anxiety for the recovery of her dear friend Jane, received some assistance from her great desire of getting rid of Elizabeth.”

This is frequently played as Miss Bingley being a terrible person, but consider her social position: she is sister to a man with wealth, but no land, a precarious situation for a woman to be. In order to secure a future in which she is not tossed about by the whims of her brother, marriage to a man like Mr. Darcy - generous, respectful, with land and wealth in abundance, is ideal. Is it any surprise she should wish to marry him? Can we really condemn her for setting herself against a threat to this hope?

The Present

Authors like Jane Austen wrote stories examining the dynamics of social relationships, both the good and the bad, resulting in characters such as Caroline Bingley who were a reflection of a reality of the time. However, as people are quick to point out, times have changed. Women are no longer socially and financially dependent on men for survival. At least, not in the west. Why then, does this belief, and this behaviour, persist?

They do persist. Consider the TV shows Pretty Little Liars and Gossip Girl. Both feature female friendships as a centrepiece of the show. In both cases, the characters are demonstrably wealthy, with all the security and freedom of white upper class women. Despite this, the plots of both shows are constantly driven by the women being cruel, vindictive, and catty. It is simply accepted that this is how women treat each other, regardless of societal pressures and structures.

It would be remiss of me to argue that there is no longer pressure on women to view each other as competition. Workplace pressure to be the best in order to be recognised exists for women, encouraging competition among them in a way it does not for men. The Reese Witherspoon movie Legally Blonde is an excellent example of how this can work, and how damaging it can be.

Furthermore, celebrity culture is constantly setting women against each other, or presenting them as being in competition with each other. For a recent example of this, look no further than the “love triangle” between Sabrina Carpenter, Olivia Rodrigo and Joshua Bassett. Each released a song within a few months of each other. Some believe these songs are connected, leading to intense media speculation about the relationship between the three young people (Carpenter, at 21, is the eldest). The most common conclusion was that Carpenter and Rodrigo were at odds with each other over Bassett. People persist in believing this conclusion, despite both women making statements to the contrary.

The combination of all this means we are inundated with examples of women behaving in vicious ways due to jealousy and competitiveness. This is especially harmful for young people who do not have the critical thinking skills required to identify, analyse, and disregard or accept such examples as reality.

We see the effects of this most clearly in high schools. The teen years are a tumultuous time for anyone, but especially so for young girls who are trying to figure out who they are and how they fit into the world. Mimicry as a form of learning is commonplace, and what people mimic most is what they see most: tropes found in literature and on film. Teen girls copy behaviours of jealousy, competition, and underhanded viciousness. This is then perceived as the natural way for girls to behave, and people write about them in shows, movies, and books, reinforcing that this is the way we behave. It becomes a type of self-perpetuating cycle: art mimicking life mimicking art. 

The Solution

How do we combat this? How do we break this cycle and empower women of all ages to stop tearing each other down and instead embrace female friendship as a place of unconditional support and love?

I believe the answer lies in switching our focus from women competing with each other, to women supporting each other. As Taylor Swift sings in her 2019 hit single You Need to Calm Down:

Yeah we see you over there on the internet
comparing all the girls who are killing it
but we figured you out
we all know now, we all got crowns
you need to calm down

Female friendship is powerful. In a 2019 article for Forbes Women, Shelley Zalis said: “We need to reverse the stereotype that women don’t support other women. There is research that shows women in particular benefit from collaboration over competition.” Women do better when we can encourage each other to be better, and can help each other along.

To make this change, we need to recognise the social structures and pressures that encourage competition, jealousy and viciousness. We need to examine them critically, but compassionately. We need to refuse to feed into them, approaching women who are caught up in them with understanding instead of condemnation.

We need to teach our girls, and grown women, to see the women around them as friends, supporters and role models, instead of as enemies. We need to celebrate the healthy friendship in our lives and our media, drawing attention to them rather than stories of conflict and competition. The more examples of healthy friendship we see, the more we learn how to engage in them.

What does this look like practically?

1)      Notice your thoughts and behaviours and critically examine them. Are you jealous of your friends? Do you support them unconditionally? What can you change to be a better friend to the women in your lives?

2)      Notice the attitudes and behaviours depicted in the media you are consuming. Where are they coming from? Are they helpful? If you find they aren’t, look for books, movies, and shows that are more helpful.

3)      Talk about these things with your female friends. Call each other out on behaviours or attitudes that tear other people down, but make sure you are doing so from a place of love and desire to see each other grow. Discuss ways in which you can support each other, ask for help and give it freely.

4)      If you have children, especially if you have daughters, make sure you’re having these conversations with them. If they are consuming unhelpful media, talk with them about why it’s unhelpful, and point them in the direction of more helpful stories.

5)      And finally, remember that you are human: fallen and flawed. You will never get this perfectly right 100% of the time. That’s ok. Be gentle with yourself. As long as you apologise and try again, you’re on the right track.

Conclusion

The stereotype that women are vicious and incapable of being true friends is an old one, but it makes sense given the historical reality of women stripped of power and autonomy, being forced to compete for the good will of a small group of menfolk for their survival. This does not, however, justify its continuation in this day and age, nor does it justify the dismissal and condemnation of women who struggle with these things. It is up to us to begin dismantling the social structures that encourage such behaviours and begin building new ones that encourage friendship and support between women.

This is only a short article, and I can not cover everything there is to say on this topic. Other incredible women doing great work in this area are: Jameela Jamil and her I Weigh campaign; Dr. Brené Brown and her work around shame and vulnerability; and Tsh Oxenreider and her podcasts Women’s Work and Simple. YouTube channel The Take provides excellent video essays analysing many of the tropes about women in media. I highly recommend checking out their work. If nothing else, please do give Dr. Roxane Gay’s essay How to be Friends with Another Woman a read.

My female friendships are the most important relationships of my life. It is with them I laugh, cry, and drink tea (and sometimes something stronger). It is them I turn to when I am struggle, and them I call on when I’m celebrating. We challenge each other, inspire each other, and love each other. I yearn to see more of such friendships promoted in media.

Female friendship is as readily available as a phone to call to your best friend, and it is up to us to celebrate it in all its hard, beautiful glory.

A Perspective on COVID-19

Stuck at home because of a disease there’s no cure for? Out of work because leaving home is a bad idea? Struggling to manage school/uni/work from home? Missing spending time on friends? Feeling isolated? Mental health suffering?

These have, unexpectedly, become universal experiences over the last couple of months, and people everywhere are talking about “the new normal”. But here’s the catch: for me, and millions of others around the world who suffer from chronic illnesses and disabilities, this was already our experience of life. To us, this is nothing new. This is just normal.

Today is ME/CFS Awareness day. So I decided to use this rather unique opportunity to connect you all with part of what it means to live with this condition.

It’s hard, isn’t it? Hard to feel trapped? To feel isolated? Alone? To be unable to work, or at least work properly, because of circumstances outside of your control? I don’t envy you, having to adjust to this for the first time.

But at the same time, can I be horribly honest? I do envy you.

Because, you see, the sickness that’s keeping you trapped indoors has teams of people around the world working to find a cure, a vaccine. Governments are focused on finding ways to protect us from it, The sickness that keeps me indoors? No such thing. What research is being done is underfunded, and far too early in the process, despite that fact that ME has been recognised as a neurological disease by WHO for over 50 years.

And, eventually, it will be safe for you to leave your homes again. A vaccine will be discovered. A cure created. The curve will be squashed and life will return to normal. You will be able to return to work, or school, or uni. You’ll be able to go out to meet friends or do your shopping without weighing up whether or not it’s worth the risk to your health. I probably won’t.

And in the meantime, you have schools, unis, workplaces, governments, health services working around the clock to help you through this. I got none of that. I get none of that. People with disabilities and chronic illnesses have to jump through countless hoops to get the support we need, and it’s hard. It takes years.

And you don’t get used to it. Being sick doesn’t make it easy to be housebound, unable to study, work, or spend time with friends. Sure, you can adjust, you can arrange a life that works, but you’re still missing out on so much. And you know it.

We feel the loss of our health. We feel the loss of our dreams. We feel the loss of our friends. We feel the loss of our lives.

So, this ME/CFS Awareness Day, may I ask you to be aware? Be aware that there are people for whom “social distancing” and “self isolation” are just another day? And please, remember us when your life goes back to normal. Because ours won’t be changing.

Myalgic Encephalomyelitis is hard to say, but it’s harder to live with.

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!

Before I Turn 30

Guess who had a birthday last month? That’s right, it was this woman. 24. I have many mixed feelings about this, and I will talk about them in a future post because it’s an aspect of chronic illness that people don’t often acknowledge. But that is not the purpose of my Just 10 Things posts. Today, in honour of my birthday and my need to have some sort of direction amidst my slowed down life, I have decided to share 10 things I would like to have done before I turn 30. Six years is plenty of time, yeah?!

Visit Korea

This is going to come a shock to followers of my blog (ha! I’m funny), but I really love kdramas and kpop. As a result, I have a growing interest in the language, culture and country of Korea. I have already started learning the language. It’s beautiful, and complicated and brain fog makes everything harder, but it’s happening. Slowly. What I would really love to do though is visit, and spend some time exploring the country and immersing myself in the culture. I have already started working towards this goal, and have incredibly tentative plans to go sometime in 2022. Finances and health permitting.

Publish my first novel

Publishing my first collection of poetry last year was a dream come true. But the oldest, longest lived dream is to publish a novel. I have a couple of projects on the go. One is resting before I tackle rewrites, the other is in the early stage of first drafting. Who knows which I’ll be able to get out first. But six years ought to be enough time, right?

Go skydiving

I’ve been indoor skydiving, but that’s not really the same thing, is it? I wanna jump out of a plane!

Weekend away with my friends

Where did those movies and TV shows get the idea that it was easy to go away for a weekend with your adult friends?? Between marriages, kids and moving interstate, I haven’t been able to go away with my closest friends for a weekend of games, food and pampering since, well, schoolies. Also known as the end of high school. This is something I would love to do before I turn 30. Even if it ends up being, “Hey! I’m turning 30. Let’s celebrate by spending a couple of days together somewhere without husbands/kids/work.” Ha.

Design my own home

Let’s be honest, actually getting to build my own home is extremely unlikely. But in the event that I do end up in the position to be able to do that, my dream is a to build a simple home that is also ecologically sustainable. So, over the next few years, I want to be studying sustainable design and architecture, and creating some basic plans for a home that fits with my needs and values.

Transition wardrobe from fast fashion to thrifted or self-made

Yeah, I really want to be more ecologically conscious in my life, and phasing out fast fashion is something I can do with relative ease. So, I’m going to start. I’ve been learning to sew, I’ve been learning more about fashion, historical dress and my personal style has been evolving. All of this is working together to make now a good time to start introducing pieces I’ve made or thrifted (op-shopped, Aussie friends) into my wardrobe. As with the home thing, I really want the clothes I wear to reflect my needs, interests and values.

Take up gardening

This again fits with the desire to have a more ecologically conscious lifestyle. Also, over the summer, I was able to use vegetables grown in my mum’s garden in my cooking and let me tell you, it felt amazing to be able track every step of the process. Fresh, home grown food for the win. This is, in some ways, one of the more challenging goals on this list. Gardening requires a certain level of energy and engagement that I may not (definitely won’t) have consistently. CFS for the win.

But I want to try.

Try pole dancing

Pole dancing fascinates me, and I really want to try it at least once in my life. I can’t imagine myself being able to pole dance regularly, because, again, CFS, and it’s a really high energy sport, but you have to try the things that intrigue you at least once, right?

Take up beekeeping

This will be dependent on a lot of factors external to myself, but I have grown to love bees and would love to keep a hive. I doubt I’ll be able to keep honeybees as long as I share a living space with my allergic mother, but the bee native to Australia is stingless. Maybe she can be talked into it? We’ll see.

Climb the Sydney Harbour Bridge

I’m pretty sure this was on my “Before Year’s End” list, but it didn’t happen. So, here’s a little bit of insight into life with CFS: it’s all about goal revision. Yeah, people talk about goal setting, but really, with CFS, there is no way of controlling whether or not you’re going to be up to achieving something. So, expectation management and goal revision is the order of the day. I’ve decided that instead of giving myself a few months to do this, I should give myself a few years. Hopefully it’ll happen.

What I'm Grateful for in 2019

I’m going to keep this short and sweet, but I wanted to share 10 things I have been grateful for this year.

1. My friends.

   I am so glad that I have been able to spend time with them, celebrating the great things that have happened and supporting each other through the difficult things.

2. My closest friend’s baby

   I won’t share any details in such a public place, but he is gorgeous and always brings a smile to my face.I love you so much, little one.

3. Picking up new hobbies

   I have particularly enjoyed by baby steps into sewing, painting and gardening. I look forward to developing them more going forward. I have also been grateful for the opportunity to continue practicing old hobbies, including cooking, baking and crocheting.

4. Nail polish

   It’s all so colourful and fun, and I love having something beautiful on me at all times. It’s a simple thing, but it’s really important to me.

5. Studio Ghibli

   I only started getting into Studio Ghibli movies this time last year, and I have fallen in love with them. They are so comforting and cosy, and I love curling up with them and a cup of tea or hot chocolate.

6. Publishing “Amidst The Ash”

   Honestly, publishing a book has been a huge step for me. And was the fulfillment of a lifelong dream. I have a long way to go on my writing journey, and it can be easy to get discouraged, but I am very grateful I was able to publish this book. I am also very grateful for all the support I have received in this endeavour.

7. Finding new authors to love

   I love, love, love books. And finding new (or new to me) authors whose work I love is so exciting to me. Plus, if there’s one thing I’m not short on, it’s time. And good books are always welcome.

8. Getting to spend time with family

   Both my sisters moved out of home this year, which has meant that spending time with them has been a special treat. We also had a number of family events happen, which were wonderful opportunities to catch up with aunts, uncles, cousins and grandparents. I have particular enjoyed getting to know my newest aunt as she has come to visit with my uncle a number of times this year.

9. Blogging

   As challenging as it can sometimes be to get blog posts written and published on time, I am so graetful that I have been able to get back into blogging and that I have been able to maintain a somewhat regular publishing schedule. I am looking forward to this next month off, but will also be glad to get back into it in February. I have exciting ideas I am looking forward to exploring. I am also very grateful for you, dear reader. Thank you for your support of this blog and of me.

10. The fact that I am still alive

    Yeah, probably not something most people think about much, but with two of my dearest friends’ mourning the loss of loved ones, the tragedy of the bushfires around Australia and my own chronic mental and physical health issues, I am reminded both of how precious life is, and how amazing it is to still be alive. I may not always want to be alive, but I am grateful for this gift that has been given to me. I try not to take it for granted.

And with that, I close out 2019.

See you all in 2020.

Laura Dee

An Update: Christmas, New Years and Plans for 2020

I’m going to keep this brief. Mostly, because I am fatigued.

Christmas has been hard, and as well as struggling with the fatigue, I feel defeated and discouraged. All I wanted was to enjoy a few days with my family, celebrating the birth of Jesus, eating good food and playing some games. And, whilst I did get to enjoy some time with extended family on Christmas day, I ended it slumped on the floor of my aunt’s house unable to move. It has been four days, and I am still recovering.

When I started this blog, I penciled in January and July as months off, but hoped it wouldn’t be necessary. The amount of strain my body has been under and the ways my CFS and anxiety have all been affected over the last few weeks has convinced me that I do need the time off.

So, here is the plan: I will publish one more post on the 31st to round out my year, and then will take January to focus on rest and recuperation.

Anyway, I hope you all get good rest and enjoy your holidays.

See you all in February.

Names of Jesus: Son of David

“This is the genealogy of Jesus, the Messiah, the son of David, the son of Abraham.”

Matthew 1:1

The name “Son of David” appears in the very first sentence of the book of Matthew. It is immediately followed by a record of Jesus’s ancestors, an official genealogy.

Perhaps it may seem strange to open a religious text with a genealogy (a family tree, essentially), but it is important to remember that the Book of Matthew is not just a religious text - it is also a historical record. Whatever your beliefs regarding the spiritual aspects of this text, Matthew is recording events that happened to people he knew. And, as with most biographers, there was information he felt important to include. Including this genealogy.

So what is so important about this genealogy? Why does Matthew feel the need to stress that Jesus really is a direct descendant of David’s?

What does this name mean?

The name, Son of David, means exactly what it sounds like it means: that Jesus is a son - descendant - of David. It is, however, important to note, Jesus is not just descended from some random David on the street. He is descended from King David, Israel’s greatest and most famous, handpicked by God himself.

Why does this name matter?

So, why does it matter so much that Jesus is a descendant of King David’s?

At the time of Jesus’s birth, Israel was no longer an independent monarchy. In fact, it hadn’t been for nearly 600 years, with Judah, the southern kingdom of Israel, falling to Babylon around 580-590BC. From that point on, Judah never truly regained her status as a self-ruling state. Zedekiah, who died in Babylon, was the last of King David’s descendants to actually be king. This was, even by 1st century AD standards, ancient history.

Which, again, brings us to the question: why is it so important that Jesus is descended from King David?

As with last week, and the name Immanuel, this name is linked with prophecy. Many, many prophecies - that is to say, messages and promises from God. There are two in particular I want to bring to your attention.

“The Lord declares to you that the Lord himself will establish a house for you: when your days are over and you rest with your ancestors, I will raise up your offspring to succeed you, your own flesh and blood, and I will establish his kingdom. He is the one who will build a house for my Name, and I will establish the throne of his kingdom forever.”

2 Samuel 7: 11-13

This promise was given to David through a prophet (messenger of God) named Nathan. This is part of a longer message, all of which you can read in the seventh chapter of the second book of Samuel. At the time, David thought this promise referred to his son Solomon. But Solomon died, and his son Rehoboam managed to lose five-sixths of the kingdom in an uprising. So, you know, not so forever.

This, however, meant that this promise had yet to be fulfilled. In stressing that Jesus is the Son of David, that he belongs to Israel’s ancient, and longest lasting, royal family, Matthew is saying that Jesus is the promised son. He is the offspring whose Kingdom will exist forever.

“A shoot will come up from the stump of Jesse;
from his roots a Branch will bear fruit.
The Spirit of the Lord will rest on him -
the Spirit of Wisdom and understanding,
the Spirit of Counsel and of might,
the Spirit of the knowledge and fear of the Lord -
and he will delight in the fear of the Lord.

Isaiah 11:1-3

This is part of a much longer promise communicated to the Israelites through Isaiah, who you may remember from last week’s post about the name Immanuel. It may seem odd to reference this in a post about the name Son of David given that the phrase itself does not appear. However, Jesse was David’s father, and the genealogy Matthew gives us shows that Jesus was descended from Jesse as well as David. Because, well, that’s how it works.

By calling Jesus “Son of David”, Matthew links him not just to the historical King David and the prophecies regarding his son, but also to this prophecy.

Here, “a shoot will come up from the stump of Jesse” and he will preside over the world as judge. Thanks to his justice, righteousness and faithfulness, the world will know peace and harmony like never before, with wolves, lambs, lions, leopards, goats, calves, cobras and children all living together without harming one another.

As we know, however, this is not the case in the world right now. Matthew knew this as well, he wrote this book after Jesus had left the world. So, in calling him Son of David, in linking him to these prophecies, Matthew was not just saying “this is who Jesus is”, he was saying “and these are the thing he will bring about.”

So, in summary, why does the name “Son of David” matter?

It matters because it links Jesus directly to Israel’s great King David.

It matters because it makes clear that Jesus is the “offspring”, “the son”, the “shoot” of this family that was promised.

And it matters because it is a promise of things still to come: Jesus, presiding over the world as the righteous judge, resulting in a peace we have never known since the Garden of Eden.

Other posts in this series

Part 1: Immanuel

https://www.claphamcorner.com/blog/2019/12/4/the-names-of-jesus-immanuel

Names of Jesus: Immanuel

It’s December! And that means Christmas, which means Advent. Perhaps not all of my readers are Christians, but I am. Which means that for me, Christmas is not just a nice holiday, but an important religious and spiritual celebration. Christmas is the time of year wherein we specifically focus on celebrating the birth of Jesus. Because of that, I have decided to publish a special, four part Advent series each Wednesday this December. This year, I will be exploring his four names as found in Matthew chapter 1.

All this took place to fulfill what the Lord had said through the prophet: “The Virgin will conceive and give birth to a son, and they will call him Immanuel.”

Matthew 1:22

Those of you who are familiar with Matthew chapter 1 will know that “Immanuel” is the last name that comes up for Jesus. So why am I starting with it?

Well, of the four names Jesus is called throughout this chapter, this one is unique. This name is unique because it was spoken in reference to Jesus several hundred years before he was actually born. It was spoken as part of a prophecy by a man named Isaiah, during the time when Ahaz, son of Jotham, was king of Judah. In fact, we have a record of what was happening when this prophecy was given. We find it in Isaiah chapter 7.

Therefore, the Lord himself will give you a sign: The virgin will conceive and give birth to a son, and they will call him Immanuel.

Isaiah 7:14

So… what does this name mean and why does it matter?

What does “Immanuel” mean?

Every name has a meaning. My name, for instance, means “victorious”. Immanuel is no exception.

Literally, Immanuel means “God with us”. As I reflected on this name earlier, I was intrigued by the fact that it is not “God is with us”. A small grammatical difference, but it makes a big difference.

In essence, the man Jesus is not “God is with us” but he is “God with us”.

Why does the name “Immanuel” matter?

For the significance of this name, I decided to dig into the context in which is first appeared. That is to say, I decided to read what the historical record (the book of Isaiah) had to say was going on when the prophecy this name was part of was given.

I would highly recommend you go and read this document for yourself, it is very readily available. If you don’t want to read all 66 chapters of it, though, chapter 7 is where you want to go.

In summary though, Ahaz is the king of Judah, based in the capital city of Jerusalem. Meanwhile over to the northeast in Aram (part of what is now Syria) a guy by the name of Rezin is king. He decides he wants to team up with Pekah. Pekah is son of Remaliah. Remaliah is the king of Israel, Judah’s neighbours to the north.

So, you have Pekah and Rezin working together. And what are they doing? They are marching south and attacking Jerusalem, which has everybody more than a little bit terrified. In fact, they “were shaken, as the trees of the forest are shaken by the wind” (Isaiah 7:2).

Enter Isaiah. Now, Isaiah has a special relationship with God. Namely, he is God’s personal messenger. And he’s here because God has a message for Ahaz. This message basically boils down to “don’t worry about Pekah and Rezin, I’ll deal with them”.

In the middle of the message, God stops and is like “hey, hey, ask me for a sign.”

To which Ahaz replies “No, I don’t want to test you.”

Which has God all “seriously? I just told you to ask. You know what, Imma give you a sign anyway. A virgin will get pregnant and give birth to boy. He’s gonna be known as Immanuel. That means “God with us”, btw. And before he is born, these guys will have been dealt with.”

Or, in other words, Judah was in a desperate situation, and God was like “hey, don’t worry. One day I’m going to do this incredible, impossible thing and there’s going to be a baby, born to a literal virgin, and he is going to be God with you.”

So, in summary, why does matter the name Immanuel matter?

Because it is the promise, the proof and the reminder that God is with us. He had not abandoned Judah to their enemies, nor has he abandoned us.

The name Immanuel is the sign, the proof, of God’s power that he is able to make a virgin pregnant, and for that to result in a son - Jesus.

The name Immanuel is the sign, the proof of God’s goodness. He himself is with us, he himself was born as a baby. And Jesus was that baby.

The name Immanuel is the sign, the proof, of God’s faithfulness. Because Jesus may have been born to a virgin several hundred years after God said he was going to do this, but he was born. God followed through on his word. And that means we can trust him.

Other posts in this series

Part 2: Son of David

www.claphamcorner.com/blog/2019/12/11/names-of-jesus-son-of-david

Books I Loved this Year

So, after sharing ten books that I’m looking forward to reading next year, I figured I should share ten books I read and loved this year. Eight of these are books I read for the first time this year, the other two are books I re-read for the first time in several years. I have also tried to avoid talking about the same books I have already talked about on this blog. Because where’s the fun in just talking about the same things over and over?

The only significance to this order is that this is how someone at some point in history decided this was the order in which our letters should be arranged. Which is to say: these are in no particular order.

Aurora Rising

Amie Kaufman and Jay Kristoff

I had never come across these authors before this year. Now I am obsessed. This is their newest book, and the first in a trilogy. Fortunately, the second book is due to come out in May.

Big Little Lies

Liane Moriarty

I was not expecting to enjoy this book so much. Still, I was curious as to what all the fuss was about, so I picked it up and read it. And I must admit, I am very glad I did. This was cleverly written, and I did not see the twist at the end coming.

Carry On

Rainbow Rowell

Another author I didn’t discover until this year. This book, and it’s sequel, Wayward Son, are so much fun. I love the way Rowell takes the classic “Chosen One” story and explores aspects of it that may not be twisted.

I also appreciate her flat out acceptance that Simon Snow is “an orphaned boy soldier” and that means trauma. She’s not heavy handed with it, but she acknowledges it and explores it.

Dracula

Bram Stoker

This is one of the two books I read before this year. In fact, I gave it an honourable mention in My Favourite Books. Which, if you’re only familiar with how Dracula has been adapted or portrayed in various pop culture contexts, may have confused you. Stoker’s book, however, is absolutely brilliant. And Mina Harker is probably one of my favourite fictional women. She’s incredible.

Fangirl

Rainbow Rowell

Those of you who are familiar with Rainbow Rowell will know that technically this book comes before the Simon Snow books. In fact, the seeds of the Simon Snow books were sown in Fangirl - the books Cath is obsessed with being The Simon Snow Series. This, however, is not a “Chosen One” story, but a coming of age story. One I relate to, being obsessed with books and shows myself.

Howl’s Moving Castle

Diana Wynne Jones

This one is just sheer fun. I love the movie and I love the book. They are different things, but both so good. Also, I relate to Sophie. If I woke up one day to find I’d suddenly become old, I too would be like “yep, this makes sense, better get on with it”.

The Hate U Give

Angie Thomas

This book lent me such great insight into the culture of police brutality and black shootings in the USA. It also got me thinking about the racism and brutality directed at Aboriginal and Torres Strait Islanders (ATSI) here in Australia. Definitely a book to read.

The Illuminae Files

Amie Kaufman and Jay Kristoff

Believe it or not, I picked these books up because of nail polish. Yes, you read that right. Nail polish. I was given a beautiful set of nail polishes for my birthday this year, and one of my favourites was inspired by this trilogy. The cover of Obsidio, more precisely. And I have absolutely no regrets. These books are clever, witty and incredibly interesting.

To Kill a Mockingbird

Harper Lee

A brilliant, brilliant classic. The older I get, the more I appreciate it, and the depths of what Lee is saying with it. What a wonderful exploration of empathy, compassion, justice and growing up.

Written in History: Letters that Changed the World

Simon Sebag Montefiore

I love history, and I love getting into other peoples shoes and seeing the world from their perspective, so a book that allows me to read the letters written by people throughout history was perfect for me. I mean, I’m a little sad that I can’t read the letters in their original languages, but hey - I’ve only got this one lifetime. I can’t learn everything I want to learn. Sadly.

Over to you

What books did you read and love this year?

From the Archives: The Importance of Self Care

Another week of PEM and flaring CFS meant I was not able to write a new post. So I have, once again, reached back into the archives of my old blog and pulled out this post to share with you. Hopefully I’ll be well enough to resume my normal publishing schedule soon. Sadly, the unpredictability of my condition means I can’t make any promises. See you on Friday, I hope.

I haven't been sure what my next blog post would be on. Hence the longer silence. I've toyed around with a few ideas and have a few things in the works. Really though, I just need to be able to sit down and work out a plan for how I'm going to manage the blog so that I can be writing and posting regularly without overloading myself. But, that's for another time.

Right now, though, I wanted to talk about something that had been on my mind a lot. Something that I think Christians can be particularly bad at. And what is that? Self care.

I mean, there are fairly obvious reasons why this has been on my mind. My entire life is currently a process of figuring out how I can effectively look after myself, so that just living is not an exhausting endeavour. And, as a Christian raised to believe that if I'm not serving, if I'm not being active for God one way or another, then something is wrong. I have chaffed against my body; bawled my eyes out over having to pull out of a commitment last minute; and collapsed in bed after leaving a wedding early, heart aching over my physical weakness and mental exhaustion.

And it's odd. The more aware of it I'm forced to be in my own life, the more aware of it I am in the things other people say.

"Oh, I don't want to take time off, it doesn't show a good work ethic." But you're sick?

"I'm so tired and so stressed but I can't pull out of anything. It's all good stuff, God stuff." Sure, but so is rest. Like, it was one of the ten commandments. Heck, God rested Himself after creating the world. So, maybe, just maybe, taking the rest you need is also a God thing? Just throwing it out there.

Now, I'm trying to keep this short, so I'll finished with a little letter direct to anyone and everyone reading this who feels tired, is stressed, struggles to live life with chronic illness or in any other way needs to be encouraged today:

You, my dear, are oh so precious. You were carefully, lovingly made by the Creator of all things. He walked this earth and shed His blood so that He might rescue you: that's how precious you are to Him. He loves you. He knows you. He understands you. Trust in Him and rest in the knowledge that He had got this.

And, dear one, so feels exhausted and weak, here's something I'm learning: as long as we remain faithfully putting one foot  front of the other, trusting in God for your daily bread, you are serving Him. You are serving others. You are showing that He is trustworthy. You are encouraging others to trust in Him.

And to finish, I'll share this wonderfully encouraging thing a friend shared with me yesterday: God created our bodies, our minds, our emotions, our souls. As with all the rest of Creation, they are not our own to do with as we please. They are God's and we are merely stewards. Therefore, it is our job to look after them, to tend to them they need tending to. To give ourselves both the work and the rest they require. There is no shame in being ill or exhausted or stressed. There is no shame of taking care of ourselves. To do so is to take part the job God had given to all of humanity: the care for His Creation.

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/

A Day in A Life

Everything is exhausting.

Let me get that out there first. Everything - and I do mean everything - is exhausting. Showering, eating, standing up, getting out of bed - you know, the things people don’t think about taking energy? Yeah, they are all exhausting. And that is the thing that most effects my day to day life with CFS. Every step of my day, every move I make has to be considered. I’m constantly asking myself “Am I able to do this? Is it necessary? Is it worth it?”

But what does that look like? What does that actually mean for me, living with CFS? Well, follow along with me as I give you a run down of a day in my life.

Note: This is just my life. CFS affects different people differently, some people have higher thresholds of activity to me. Others have lower thresholds. If you know someone with CFS, don’t assume my experiences and theirs will match. However, I do get the impression that mine are generally relatable to people with CFS.

Mornings

Morning are hard. They are probably the time of day with the greatest variability, making them difficult to predict, as well as it just being hard to get going with fatigue.

Generally, I wake up at about 8, but it will usually take me a couple of hours to get up. 10 is usually the earliest I can expect to be able to get up, and even then it’s only for short periods of time, often driven by physical needs like food, water and full bladders. If I need to get up earlier, I usually can with the help of my trusty anxiety, but that typically means I’m more fatigued later in the day, and it’s not sustainable.

Sometimes, though, I wake up early and, as a result, am able to get out of bed earlier. Again, though, this is compensated for by being more fatigued later in the day.

The worst, and one of the most alarming signs of slipping health, are when I miss the morning entirely and don’t wake up until 11 or later. I have been known not to wake up until mid afternoon during severe flares, and have even slept for 24 hours straight on more than one occasion.

And here is the cat, curled stretched out against my back.

Afternoons

Typically my most active time of day. This is the time of day I am most able to be up and moving about. There are a few things I like to do during this time. These include, but are not limited to:

• Crafting - typically knitting or crocheting

• Reading

• Writing

• Cooking/baking

• Exercising - typically walking around the back garden, sometimes dancing, when I have the energy

If I have chores to do, this is the time I am most likely to be able to do them. These usually include light things like vacuuming my room and doing my laundry. If I am experiencing more severe fatigue, I will probably watch TV or YouTube.

I feel like it’s important for me to say, at this point, that I can in no way do all these things in one day. Sometimes I can do more things, but I’m generally limited to maybe three things. And TV. Because TV doesn’t require much from me.

Evening

Honestly, this time of the day varies from day to day, depending on how much fatigue I’m experiencing and how much I’ve done during the day. I can typically do dinner with my family, but how engaged I am and how much I stick around after I finish eating differs each day. But it’s typically not very long. Sometimes, I am able to go out with a friend for an hour, which is usually nice and often much needed. Sometimes, I play card games with my family. Although, again, an hour tends to be my upper limit.

Still, I am most likely to watch TV during this time. I generally enjoy having something I can focus on, without having to be very mentally or physically active.

Night

Nights are also a difficult time of day for me. I like to have a drink of tea in the evenings, and I don’t like drinking anything after I’ve brushed my teeth. Unfortunately, by the time I’ve had my tea, I am exhausted as well as fatigued, and getting up from my bed or my chair to get ready for bed is frequently an overwhelmingly difficult task for me.

As well as this, I struggle with falling asleep, and it can take me half an hour or more each night - not something that’s pleasant when you’re exhausted or fatigued. Sure, sleep won’t cure my CFS, but it’s still awfully needed to keep me functioning. Sleep deprivation on top of CFS is absolutely horrid.

Fortunately for me, I am generally a deep sleeper, and typically won’t wake up until morning. I like that. The nights when I dream are difficult to manage. Anxiety related dreams can be… interesting…

And, this is a day in my life. Other people with CFS are more limited with what they can do, and yet others are more able than I am. This is in no way representative of day to day life with CFS as a whole. But I hope it’s given you some insight into how difficult living with CFS can be.

What's in a Name - Clapham Corner

It’s been two months since my website went live, so now’s a good time to talk about the name, right?

I’m sure people have some questions - I’ve definitely already been asked a couple of times!

Now, history savvy readers may already have made the link to William Wilberforce and the Clapham Circle. If you have - well done. Give yourself a pat on the back. If you haven’t, that’s fine, I wouldn’t have expected you too.

Anyway, William Wilberforce has long been a personal hero of mine, ever since I watched Amazing Grace back in 2008. If you ever asked me who I’d want to invite for dinner, my answer was probably William Wilberforce.

I admire Wilberforce for many reasons. I primarily admire him for being a man who didn’t let the social and economic norms of his culture blind him to the atrocities that were occurring. This applies to his fight against slavery, but also his fight for better public education, his fight against cruelty to animals and the many, many other causes he dedicated his life to.

I also admire Wilberforce for the way he refused to separate his Christian faith from his job as a politician, instead letting his faith inform his policies and actions. I admire his persistence in fighting for abolition, despite the many setbacks he and his friends faced. I admire the way he didn’t allow his chronic ill health to define him or prevent him from doing the work he loved and felt called to do.

As I said: he is a personal hero of mine.

Unfortunately, for many people, the older they get and the more they find out about their heroes, the more disillusioned they become. So far, that has not been the case for me with Wilberforce.

Last year, I read Eric Metaxas’ Amazing Grace: William Wilberforce and the Heroic Campaign to End Slavery. As well as growing in me a deeper appreciation of Wilberforce and his accomplishments, this book properly introduced me to the Clapham Circle (also known as the Clapham Sect).

These were a number of WIlberforce’s close friends and contemporaries who, along with Wilberforce and his family, bought land and established homes together in Clapham. Together, they and their homes became a centre for hospitality, Christian thinking and the home base for many of the time’s most prominent and influential social justice movements.

Which brings me to why I named my website and blog Clapham Corner.

As I was thinking about my long term hopes and dreams for my life and this blog, I realised I also wanted my home (both physically and virtually) to be a place of hospitality, Christian thinking and a space for matters of social justice to be discussed and acted on. Because of this, and my long lasting admiration for Wilberforce, I decided I wanted the name of my blog to reflect this by being a less than subtle nod to his home and circle of friends.

After brainstorming a few ideas and figuring out what domains were available (because practical matters are just as important) I settled on the name you see today: Clapham Corner.

So, welcome to Clapham Corner. Come in, settle down and grab yourself a cup of something hot. Or cold, if it’s summer where you are. Let’s go on this journey together.

What Actually is Self Care

You know, if I’m going to be talking about self care, it’s probably a good idea for me to clarify what I am talking about when I say self care. So, in this post, I am going to do just that.

I am going to define what self care is, give a brief overview of different areas of self, define some other important terms that will come up, and give you a little bit of insight into what self care looks like for me, personally.

Let’s dig in!

“Self Care” Defined

I personally feel that this is a fairly self explanatory term. Still, I want to pick apart what the words mean, and what the phrase means all together.

I’ll start with the easier word. Care.

Now, when you Google the meaning of the word “care” a number of different definitions comes up. These variations are based on the form and context of the word usage, but they all have a a similar idea at heart.

The Cambridge Dictionary, however, provides the clearest and most pertinent definition for this use of the word “care”. It defines “care” as

The process of protecting someone or something and providing what that person or thing needs.

Then, the second word in this phrase is “self”. Now, the concept of self is a massive, complicated philosophical question. However, here, in this context, self means yourself. Or myself. Also relevant is this definition of the word as provided by the Cambridge Dictionary:

The set of someone’s characteristics, such as personality and ability, that are not physical and make that person different from other people

Take these two things together, and we see that “self care” means to protect and provide for (look after) oneself (yourself). And because each person is different, that means what they need for self care will also be different.

Sure, there are some self care things that are pretty universal. For instance, brushing your teeth everyday constitutes as self care because you are looking after yourself, but it is also something everyone should be doing if they can.

Then there are aspects of self care that varying from person to person. For example, I love to paint my nails. For me, that is an important self care ritual. For my sisters, however, it is stressful and unnecessary. Also, they are studying in medical fields, so it is a hindrance. Therefore, painting their nails is not self care.

Different Types of Self Care

Over time, I will post about each of these areas (and others!) and explore them in depth. Still, I want to show you how broad and all encompassing self care really is. I also want to challenge you now to start thinking about ways you can take better care of yourself in these areas.

Hygiene

This is so important for your physical and mental health. This includes things like showers, brushing your teeth, making sure your clothes and bedding is cleaned regularly, keeping your house/bedroom clean. Just doing those little things, regularly, to make sure that you are keeping your body and your environment as clean and healthy as you can.

For me, this means things like changing my sheets monthly and brushing my teeth daily.

Food

This is something that comes up a lot, and that I think can be a problem for people. Or, if not a problem, something that is really stressful. It is so important to have a healthy relationship with food. Things that can be done as self care in this area can include: cooking, trying new recipes, seeing a dietitian. Really, it’s about making sure that you taking as much care of yourself as you can be with the foods you are eating.

For me, this means sharing the cooking with my parents through the week. We all get a chance to cook, we all cook with fresh, healthy ingredients and we cook a wide variety of food types. This means that we get delicious, healthy, homemade meals every day, but we aren’t overwhelmed with the need to cook daily.

And I’m not afraid to bake a brownie every once in a while!

Finances

Now this isn’t an area people talk about a lot when it comes to self care, but that I have realised is massively important. Money is so important and can be a huge source of stress in people’s lives. Therefore, I have come to believe that it is important to have a system of managing ones finances in place that helps to reduce some of that stress.

For me, this means having a system by which I track all of my spending and all of my income, and a strict budget for where my money goes. Knowing what’s happening with my money has made things so much better for me, and I’ve gone from having regular money induced panic attacks to pretty much none.

Emotional

This one can be so varied, but is so important! I’ll definitely dig into this one more later. For now, I’ll just say that as part of self care, checking in with ones emotional and mental health is important. As is knowing how to take care of yourself when you’re not doing so well. Of course, we don’t just want our self care to be reactive - we want it to be proactive.

Important Terms

Reactive self care

This is the type of self care that reacts to a problem that has arisen. A common type of reactive self care is going to see the doctor when you are sick. You have a problem - you’re sick - so you react by going to a doctor. This is a very short term, in the moment kind of self care. But that does not mean it isn’t important!

Proactive self care

This is the kind of self care that looks much longer term and says “how can I be establishing habits and routines that will help me to take care of myself in the long run?” This is much more about identifying areas that may become problems and making a plan to avoid the problem, or to face it head on. A common example of proactive self care is daily teeth brushing.

Trigger

Aside from the term “self care” itself, this is probably the most important term that I am going to define in this post. I hate the way “trigger” has become a kind of a joke, when actually, triggers and being triggered are very serious things.

In this context, a trigger is a psychological term which mentalhelp.net defines as

external events or circumstances that may produce very uncomfortable emotional or psychiatric symptoms such as anxiety, panic, discouragement, despair or negative self talk

Triggers are most often associated with trauma, and are often unique. When talking about triggers, it is important to realise that everyone experiences trauma differently, and as a result are traumatised by different things and have those traumas triggered - reawoken, poked at - by different things.

So, in this context “trigger” is both a verb and a noun.

The noun is the thing that is causing the trauma response, be that panic, discomfort, despair, anything along those lines.

The verb is the trauma response itself.

So, far instance, I was in a car accident last year. Ever since then, I find being in cars difficult and traumatic. In this case, the triggers (noun) are sudden stops while driving, a car rolling forward, fast driving. What it triggers (verb) are panic attacks.

So, here is a little taste of this wide, wide world of self care, and what sorts of things I will be talking about in more detail in future blog posts.

Self Care: Why it's important and why I'm talking about it

Self care seems to be all the rage these days, with so many people talking about it and posting about it. So, why am I? Am I simply jumping on the bandwagon?

Well, maybe. But I wouldn’t be if I didn’t think that self care is vitally important, and that it is something that needs to be discussed.

So, why do I think self care is important?

Well, for a number of reasons: practical, personal and - believe it or not - Biblical. Let’s take a look at these, huh?

Practical

It is, quite frankly, impractical for people to not look after themselves. Not looking after ourselves, especially in a society that tends to measure our value by our productivity, is a surefire path to burn out.

And burn out sucks!

Still, we generally aren’t taught how to effectively look after ourselves, or even why it’s important. And I want to start doing something to change that.

I want to challenge people to thing about how they can be looking after themselves and to begin practicing regular self care.

Personal

On a personal level, I have a good deal of experience dealing with burn out, mental health issues, chronic illness and a long - and ongoing - struggle to learn how to look after myself.

Now, after probably 10 years of struggling with depression and anxiety, and three years with chronic fatigue, and maybe two years of actively learning how to look after myself, I’ve realised just how important self care is. And how dangerous it is to ignore it.

And the better I get at self care, the more I realise just how bad other people are at it. And it frightens me.

A lack of self care probably won’t result in chronic fatigue syndrome, but it can definitely contribute o teh development of anxiety and depression.And I don’t want that for anyone.

Hence how important this blog is to me.

Biblical

This portion is more directed at my Christian readers, although I hope that my readers who do not believe in the Christian God will also read it.

I think that we, as Christians, are particularly bad at self care, and I think it comes from the notion that to be a Christian we must be serving. And serving often means doing, and putting other people’s needs before our own, all the time.

And I have come to believe that this is an incredibly unhealthy and unbiblical attitude. This post is not the place to go into it, but there will be future posts expanding on this and looking at what I think the Bible, and thereby God, has to say about self care.

I hope that in so doing, I can help challenge my Christian brothers and sisters to think about their attitudes towards ministry and self care, and help demonstrate that God is not the hard taskmaster He may often appear to people.

Until next time!