Parallels between CFS and a Pandemic

Who would have thought that there were parallels between getting Ross River Fever and then Chronic Fatigue Syndrome, and the COVID-19 Pandemic? I didn't...but I'm seeing so many things I've experienced before.

When I had Ross River, I had to give up work, socialising, going out, drinking alcohol... it felt like life. I was confined to a bed or couch for months. Having a shower claimed almost all of my energy for the day. Going to the loo was such an effort that I'd wait until I had to go...but need to give myself enough time to take the slow, exhausting steps to get there. Sometimes I'd have to sleep for a few hours after a bathroom visit - and I got no choice about that, my body would just konk out.

So life became whatever I could manage to do inside the confines of my home. And I grieved the loss of everything I had and was. But giving words to that loss was impossible. How do you explain that?

Fifteen years later, enter COVID-19 and lockdown. I've lost a little bit of freedom but overall my life is unchanged. My lockdown happened years ago with a different virus.

For those of you struggling this year, I understand your loss of life. I understand your grief at having the things you love taken away from you. I understand how your freedom has been curtailed. I know how much your heart aches at the loss of life as you knew it.

Viruses are sneaky little bastards. They sneak in unseen, and cause absolute mayhem and chaos. You don't get to see them - just the havoc they cause.

If you're struggling with the impacts of Covid, can I suggest you check out some of the wisdom offered by anyone suffering a chronic illness? They've negotiated these kind of restrictions and have found ways to live when living is changed.

Here are some sites that have helped me:

http://www.cfsselfhelp.org/library

https://www.psychologytoday.com/au/experts/toni-bernhard-jd

Loss of life and the things you have always done is a real loss. It causes grief. It hurts your heart and your mind. The uncertainty around when it may end, or if it will ever end, does dreadful things to your psyche. Depression, anguish, grief, sadness, overwhelm, anger...these emotions and more are all completely valid.

I wish I could give you an easy answer for carrying on. I can't. It's been a struggle to reinvent myself over the last 15 years, and I'm still working on that.

I've decided that life is about living in the best way I can, taking into account whatever has been thrown in my path. So, I'm on an ever evolving quest to bring joy to my life, fill myself with purpose each day...even if that's just taking a photo daily!

I hope you can find some joy and peace in this crazy crazy time.

Cath xo

CFS and the Dentist

Not my teeth! Giant Toadfish

This week's been tough. Unexpectedly tough...even though I should have expected it. And that's the nuisance of Chronic Fatigue Syndrome (CFS), sometimes the most mundane thing will knock you, unexpectedly, for six.

I went to the dentist a couple of weeks ago for a check up and clean - except they couldn't do a clean yet due to COVID-19 restrictions, so it was just a check up. Dentists in Australia had been shut for 8 weeks during the strictest part of the COVID-19 lockdown, and hadn't been open all that long.

I had a 'soft' part of one tooth, which the dentist filled there and then. No needle, just a 10 or 15 minute job. I came away perfectly okay, with a booking for this week when I could have a clean and he wanted to fill a tiny hole that was on the gumline between teeth (or something, some tricky area that needed more time).

I should have realised it would be more difficult and therefore hit me differently to the easy one...but no. It didn't dawn on me.

On Tuesday morning, I went. Had a needle. Spent 30 mins in the chair with way too many things in my mouth. Then another 15 mins for a clean. I came home, face numb, and began working. Of course work was busy. I worked until I noticed I was in a bit of pain. I swallowed some painkillers and kept working.

You know, right there, I should have realised I was pushing my body too hard...but I missed that cue.

At 4 pm, I had to have a nap because I was pushed way too far (pain, struggling to focus, cranky). I napped for about 90 minutes. Did I then take it slowly? Oh no.

Up and cooked dinner. Finished some work, b
efore going to bed.

And I struggled to sleep.

Another CFS overdone it cue.

I wasn't in any pain from my tooth, just messed up.

It's Friday now, and my body is still a total wreck. Sleep is all jangled up. I'm exhausted by walking a short distance. My body is not doing well eating - it's in healing mode. Focus is out the window. My emotions are all over the shop.

What can I do?

It's taken me about 15 years to know this, and I'm not sure it's right, but all I can do is sleep, forgive myself, rest, let my body tell me what it needs.

I'm a little desperate for acupuncture, but I think I have to wait for that. Hopefully it'll open next week but I'll have to check. Acupuncture seems to send a message to my body that I'm looking after it, that I care, that it can settle down and relax. I've no clue how it does that, but I'm not questioning when something works!

So... two trips to the dentist, with two vastly different reactions. And that's CFS. Sometimes it kicks you in the hardest way when you didn't plan for it.

CFS: chronic fatigue vs tired

I'm on an upswing in the CFS journey and so I thought I'd try to document it - in case I need inspiring later on!

All of 2017 I was low. I had no voice, ear issues (right ear muffled, left ear sharp), complete exhaustion, so many things seemed to be wrong with me - and yet no one could help. I spent ages at Dr and specialists and then I gave up - I had no energy and I wasn't wasting it on hopeless attempts to be well, and many times, feeling worse due to doctors' senseless comments (like, "do you overly worry about your health?").

Towards the end of 2017 I dragged myself to an acupuncturist I picked out of Google. I picked her because she dealt with women's fertility issues...and I figured menopause was messing with my CFS. Not exactly the same thing, but it felt better than going to the acupuncturist who specialised in geriatrics (even if that was how I was feeling!).

I had my voice back in a few weeks. I also had the muck that had been on my chest for months and months (maybe years) clear up.

Muck on your chest should be something western medicine should fix - or at least I thought so. But if it's yellow or green, antibiotics work. If it's white (like mine was) antibiotics do nothing. I know because after some time of just believing the doctor, I insisted on proving that antibiotics did nothing. He was right. I insisted on trying puffers - they helped me breathe but didn't fix the problem. In Chinese medicine, white muck is old infection. There's a herb to clear it up, plus some acupuncture points to use - they worked. Not just on me, but dad too.

So, I've been going to her for about 14 months now (the same time as I had no voice) and I keep improving. It's such a shock.

The other day, I thought I'd done it. I thought I'd set myself back. See, I went to Sydney on Monday, by train, but still it's a big trip (3 hours each way on the train) and I had a sore hip. I pulled a muscle in it a week earlier. So sitting in the train, and walking, wasn't the smartest thing, but I went anyway. Then Wednesday I went to my classics book group and did the groceries afterwards. This is another day out without exercising my hip or doing the ice/heat thing, plus lots of sitting. Add to this I have work to do (that I've just skipped 2 days of) and a book to launch, and more writing I want to do. So I'm worried that I've pushed too far outside my energy envelope. That I've chucked pacing out the window - again - and I'm going to pay with the CFS crash/relapse.

I came home with the groceries, and I put them away. I didn't think, I just did it. I cooked dinner. I had a cold drink. I did a bit of work, and hip exercises, and ice/heat. When Pete got home I told him how tired I was and that I'd overdone it. I sat up for a bit, and then at 8.30 pm, I went off to bed.

I got up the next morning and as part of my morning ritual, I journal about the previous day. I wrote all this, and as I did, I realised something.

I HAD BEEN TIRED. BUT I HAD NOT BEEN CFS TIRED.

Sleep rejuvenated me.
I had put away the groceries.
I had cooked dinner.
I had functioned even when I was tired.

OMG!

When I'm CFS tired, I can't do anything more. Or if I do, I drag myself to do the barest minimum. So, in the past, I would come home with the groceries and I'd be exhausted. The cold things woudl get put into fridge/freezer, and that would be it. I'd sit down, have a cold drink and a rest. Maybe I'd tackle the rest later, maybe it would wait until tomorrow. I had never, ever, had a cold drink while I put things away. I had never backed up by cooking dinner too. And I'd never done work and exercise and health things. And I had never woken up rejuvenated.

I'm tired, meant just that.

So far, I haven't had to pay the price for doing things.

I know a few months back that I noted I was enjoying life again. I felt joy, happiness, hope. These were things I hadn't felt for a very long time.

Now, I felt tired, I went to bed and I woke up refreshed.

These might sound so ordinary...but to me, they're life changing. They're worth writing about. Worth celebrating. Worth shouting to the rooftops - except I don't want to jinx it, so I'll just blog quietly! And I'll keep my fingers crossed that this isn't just a fly-by-night occurrence and that I might have some time of this joyful recharging living.

Cure A Journey into the Science of Mind over Body

I've had a rough 12 months, health-wise, and a lovely friend from my Book Club loaned me this book.

I'm not adverse to alternate therapies, even with my science background. I've had more 'success' from some practices than I've had from conventional medicine. I've been sporadically truing to find something to get my out of my recent quagmire, but it takes energy and effort to 'research' it and see what I think might help. I had just finished reading Jon Kabat-Zin's Beginner's Guide to Mindfulness (his work is quoted in this book) so this was a timely read.

Marchant states right up front that she's skeptical of alternate therapies and this is evident throughout, but she has given time, space and a hearing to many practices a lot of people wouldn't have considered.

If you're 100% behind alternate therapies, or conventional medicine, then I think this book may disappoint (or upset) you. I thought Marchant walked quite a good line to show how mind science and physical body science could be complementary.

Marchant clearly showed the problems faced trying to 'prove' mind science using the traditional double-blind trials favoured by conventional medicine. I thought she gave many and varied examples of scientific experiments, using as much scientific rigour as possible, to show the effects of the mind on the body and on health.

There was a lot of information presented in a very readable format, suitable for most people. However, if you're a sufferer of a particular illness looking for a 'cure', then I don;t think this book delivers - and I don;t think that was Marchant's purpose in writing this.

For myself, as a CFS sufferer, I've come away with more of an understanding of the mind-body interaction. I believe I contracted Ross River Fever and Glandular Fever and have been unable to recover, because of stress. For the 2 years before I collapsed, I had 6 of the top 10 stress events occur - 3 of them within the same month. On page 174, "Over time, stress physically rewires our brains."

Over the past 12 years, I've completely changed my life and have been on an unrelenting hunt to find things that will 'improve' my health. These have included changing the way I think, the way I work, the way I interact with people. These changes have included my daily routines, exercise routines, almost every single aspect of my life.

I'm a bit fussy about what I try. I like to do my 'research' before spending my hard-earned money on something. I want some kind of 'proof' that something has a hope of working. I belong to a wider society where we all share our health experiments and their results. We discuss what we find when researching cutting-edge treatments. This has been a godsend to me. It's shown me I'm not alone.

This book, Cure, seemed to be a good summary of some of the medical trials and alternate therapies that I've tried/been following/heard about. Although, most of the Italian work was new to me, and exciting.

I'm concerned that so much of the mind research in Cure, seemed to indicate that the society we're so quickly developing, is detrimental to our health.
I liked that Cure gave me hope - that the world may change, that medicine may not be so drug-dependent, and that chronic conditions may get some recognition, belief and assistance.

Achievements and CFS

A mixed thoughts post today about writing and health.

I've been battling health issues since last November. I have CFS, so my immune system struggles at the best of times, but I'm of the age where hormonal fluctuations (peri-menopause and menopause) are also occurring. I don't know that the two go together very well. I have had a constant stream of viral attacks since November (often affecting my sinuses - voice and ears especially).

My GP keeps smiling and telling me I have another virus - get plenty of fluids and rest. But when I became overly concerned, I did a round of specialists to rule out anything sinister. They were ruled out - thankfully.

Autoimmune issues are rife in my extended family with almost every autoimmune illness covered by at least one relation, if not more. This doesn't say a lot for my genes, does it!!

So, I'm battling through each day. Luckily, I can manage my day job because I work from home at the hours I can manage. I've been in the same day job since just after I contracted Ross River...because I needed a job where I could manage my health first. Income drops when I'm not well, as my hours drop. But I usually manage to keep my head above water by doing what I can - and ignoring the rest of the world.

Sorry to the rest of the world. But I'm especially sorry to family and friends who I cannot keep up with during these times. It breaks my heart to miss things that are important.

However, during all this health upheaval, I was asked if I was interested in working on a book as part of a 3-author linked series. Different to Dulili, with different authors and a different focus...but it was something I'd been thinking about. So without hesitation, I said, "YES!"

And you know that saying about, agreeing to do something, then working out how to do it later, well, that was me! I'd committed, hoping my health would improve, and, well, it wasn't. Not really. Not as I'd hoped.

I had 3 months to write 50K for this story. I didn't have time to panic. I didn't have time to mess it up. I had to pace myself, trust my process, and have faith.

So I set an end of June deadline for myself to have the first draft finished. I was a few days late, and my hero was 'wrong'. Trouble was, I didn't know what was wrong, just that he was wrong.

Cue two writing friends who got in and read quickly for me. Then I did a story breakdown, my process, and between the three of us, I discovered what was wrong.

It's now the 5th of July. I have to submit on the 31st July. I had twenty-something chapters, so I had to do a chapter a day, no matter how badly I was feeling, and on good days, more.

And I didn't manage a chapter every day. But I couldn't beat myself up because I didn't have time, or energy.

So head down, I got through it. (And luckily work was busy but not insane - that bit helps so much!).

I wrote a 50K story in a 3 month window when I wasn't well. I did what I thought was impossible.

It's submitted now...and hopefully it's okay...but if not, then I can rework it in edits (hopefully) and make it better.

And now I have more confidence to go and tackle my never-ending rewrites for my never-ending story. I can do this.

Even with CFS, viral overloads, hormones in crazy freefalls, I can write. I can achieve deadlines. I might need a week to recover afterwards, but it is possible.

And that is an amazing feeling.

How do you manage deadlines, or being out of your depth?

ARRC17

Last Chance Country authors' raffle prize and winner

The Australian Romance Readers Association held a convention in Melbourne recently and I went along. Jennie and Lisa had been to the 2015 one and had had a fabulous time and insisted that I join them at this one. I'm a bit weird in that I like my own company, so I'm perfectly happy at home doing my thing, but I can socialise when I need to and when I do, I'm a joiner. I don't see the point of going to/doing something if you aren't going to put in your all.

The joiner thing clashes with CFS, so after many years of failing spectacularly, I'm beginning to learn where my "all in" limits are. I can help out, talk, do things...but then I need to hide, relax, be alone. And I can't do days of one and then expect to pick up with days of the other - I need to balance that by hours, not days. And I think I did a not too bad job at this balancing act!

Thursday and Monday were travel days. I was a passenger in a car with a 9 hour drive, but it was pleasant company and lots of chatting and hassle-free, so that was a good option.

On Friday I'd planned a day of writing but ended up helping out and this was fantastic because I met people, chatted and laughed, while we worked not too hard. I ended up helping out on the Rego Desk, so I met more people as they checked in. (This forced meeting while doing other things is great for introverts!)

I spent Friday evening having a wander around Exhibition Gardens and the gorgeous building and then got room service. A perfect offset to the busy day.

I was right for Saturday then when I listened to Courtney Milan's keynote speech (she was way younger than her prolific writing made me expect!), then watched the documentary Love Between the Covers. Quiet, peaceful events to stimulate my brain. The afternoon was opposite.

Me at the Book Signing

At lunchtime I participated in a Narratives Project, where I read some of my story, The Healing Season, to be recorded and used for radio purposes if picked up. It was supposed to be 5 minutes but it turned out to be longer. It was a very interesting experience and I was glad that in the past I'd (a) learned to read for church, (b) learned public speaking, (c) read to my nieces, nephews, and various other kids, and (d) done it on the spur of the moment so I had no time to panic!!

Our table for the Awards Dinner

Later in the afternoon I spoke on a panel and then participated in a book signing event, followed by a group photo and then the Awards Dinner. This all happened consecutively and I had no time to think between moving from one thing to the next. I fell into bed exhausted.

Speed dating room

Sunday morning, before the keynote speech from Kylie Scott, I chatted with an author I'd been too nervous to approach. Why? I wish to heck I understood myself. I considered her too good for me to approach, and yet she was gorgeous, fun, and exceptionally easy to talk to. Sometimes I could kick myself for being an idiot!

All I had to do on the Sunday was speed dating, and it was much more fun than I'd expected and by now most of the people coming to chat were friends, and not strangers. I then spent the next few sessions sitting in the audience soaking up the energy of the place, before listening to Kristen Callihan's keynote and then the closing of the convention.

What did I learn?

• If I balance active time with quiet time, I don't wear myself out
• That everyone is human, no matter how high I pop them on a pedestal
• That dreams can come true - you just have to keep working at them
• That the energy from a group of people with a common interest can be addictive
• That readers are accepting, regardless of what I write
• It doesn't matter if I don't fit into a specific niche or group; I can fit into the wider group and mingle
• Even if you think you're an idiot, just do stuff because it can turn out awesome 
• You can be a hermit; but sometimes you need an extraverted recharge
• Readers appreciate authors



Me at speed dating

• Acceptance can soothe your soul

CFS - The Festival of December

December was always my favourite month. It's summer, my birthday and Christmas. The start of holidays. The end of the year. The end of school/activities. It was the biggest month in my year.

When I began working in agriculture, it became even bigger because it was now harvest as well. This was hot, hard work but so rewarding because we were gathering what we'd sown, reaping the results of the whole year's work. I'd come home itchy and filthy, totally exhausted but elated too. And no matter how hard the day was, I still managed my sports and Guides and partying.

December was always fun. I felt like I was on a high for the whole month. Everything was wrapping up. Goodwill seemed to be exchanged by all. There was much thanks for all that had happened all year. 

When I got Ross River Fever it affected me in so many different ways, but one of the biggest impacts has been on my Festival of December. For some reason I'm often sick in December, or just getting better, so there are no longer the parties, the social activities, the fun. I also can't tolerate alcohol, so that's a big issue in December because most parties revolve around alcohol and explaining why you're drinking water gets old. 

This year, I've been sick throughout November and December with a virus that's left me without a voice. So there's been no birthday fun, no visiting family for Christmas, no parties, no activities. And man, that's been depressing. My Festival of December has become the Fizzle of December and that's horrid. I've been out once, to Jimmy Barnes, and that was awesome. I caught up with a work colleague one afternoon. I had a Bowen therapy. I've been to the Post Office, the newsagents and the butchers, the doctors and the chemist. And that's the sum total of my December activities. I've been to the beach twice but haven't swum. It's been a rotten few months.

I'm not sure that I'll ever have the Festival of December that I used to enjoy, but I'd love to have a December when I wasn't battling to be well. That's my plan for 2017 - trying to have a better health year and remaining healthy through those 'relapse' months at the end of the year. Let's see how I go.

And today, I seem to have some voice - FINALLY! It's not 100% (and neither am I) but hopefully a corner has been turned and I might pick up for the rest of the year. Fingers crossed! 

Happy 2017!!!

CFS - with an extra viral attack

I have Chronic Fatigue Syndrome. You can find out more about it here, if you'd like to.

I look normal. I probably act normal too. You'd probably not be able to tell that I'm sick.

Most days, I just feel off-colour, and wish I had my old self and energy back.

But when I have a viral infection, like I do at the moment, on top of the usual feeling, it's not good.

I'm going to try to explain what the viral overload is like. I've had a bad viral infection (and no voice) for just over 5 weeks.

I'm not looking for sympathy or remedies or comments. I'm just documenting this for myself, and anyone who may need it.

After 5 weeks of a viral infection, I still look fine, I'm still trying to act fine so you may not know I'm not well. On the inside, the act of putting one foot in front of the other, of placing one word after the other, one breath after the other is a struggle. I want to sleep but there's only so much sleep you can have when you're trying to live a somewhat meaningful life. I need to do some work each day even if only an hour or so (because bills, etc.). I need to do something for me (for my sanity). I need to eat well (for my health) and interact with my husband (for our relationship). These may seem insignificant things, but achieving them each day can be incredibly exhausting...even after 8, or even 12, hours of sleep!

My brain is foggy, so retrieving information from the depths takes energy, time and patience (and I'm not very patient!). Working requires some amount of brain power, and sometimes too much brainpower. I make more mistakes than usual, a lot more, which is frustrating and annoying and makes me feel useless.

Writing is almost impossible because I need brain power to find words, think of characters, story, events. I need to use the creative part of my brain that is just too exhausted after the day job. I can scribble ideas or short stories, but I can't write a novel.

My body aches. Not all at once, but parts at a time, in no particular order, so I think I'm going crazy. At one moment, my knuckle on the third finger on my left hand throbs so badly I think I've injured it. I touch gently, probe, rub. After a few moments, it eases. Then my shoulder blades pound. Or maybe it's my knee, or hip, or little toe. The aches and pains are in perpetual motion. Never the same place for any length of time. The only pain that's there constantly are headaches. The difference is a matter of how much they pound.

My glands are swollen, some days to the size of golf balls, and they ache. Constantly. Sometimes I can feel them swell, or pulse, and that's a little disconcerting. The ones on my neck and under my arms are the worst.

When I do something extra (like maybe I've committed to something in advance and feel I have to go, or it's an event for someone important, or something I'm keen to do) I rest before hand, and plan rests for afterwards because I know it's going to wipe me. I go, even knowing I shouldn't be going, and while there, I remain quiet and still, using as little energy as possible. I take all the care in the world not to be my 'usual' self and overdo it. I enjoy the event, even if I'm subdued. I think it was worth it. Until then the next day... when every symptom is worse.

I shouldn't have gone, I knew it and I went anyway, and it's the worst feeling ever. I've set myself backwards. Hurt myself. Idiot. Self-recrimination can be almost overwhelming.

Emotions go haywire. I'm angry that I'm ill. Angry that other people get sick and then recover in a week or so, yet for me this same virus drags out for weeks at a time. I'm upset that my life is on hold - I can't do what I want to do, can't speak, can't socialise. I'm trapped and upset and frustrated. So frustrated at life that it's dealt me this cross to bear. I don't like being ill, I don't like not being able to do things or function fully, I hate that I'm trapped. I'm disappointed that somewhere in the last eleven years, I've lost myself - the fun, social, witty, quick, over-achiever who organised crazy things. I'm grieving that loss of self. The death of my career, my social life, my fun, my inability to worry, my ability to bounce back from everything.

Western medicine has proven to be useless in dealing with this weird kind of illness (CFS). When I have an illness on top of CFS, it's even worse.

"It's a virus, drink plenty of fluids and rest." is the usual mantra for normal people with a virus, and it passes within a few days. For me, when the virus hangs around for longer than a few weeks, the concern sets in among friends and family who make me believe I've got some dread disease and so I go to the doctor, who now also panics, and starts sending me for blood tests and other tests, using up energy that I don't have. Setting fear inside me when any emotion eats energy, and it's another strong emotion I don't need, giving me no rest. The blood tests show I have a viral infection, so they do more tests to determine what virus. It's indeterminate but the Glandular Fever and Ross River Fever viruses are detected...yes, from the past, that's what started all of this. And then before they send me for more tests and more worry, I bail. I go back to fluids and rest and trying not to let emotions overwhelm me. For eleven years I've gone through this cycle, and still it happens because 'doctors are gospel', when they're not. Not for me. They can't treat me. There is no 'cure' for a virus and my CFS was set off by viruses.

After the doctor's rounds, I know I'll just have to wait to get better. It takes me longer, I know that. I need to believe that. The more I do. The more I worry. The more I have to justify my illness. The longer that healing takes.

I'd like to sit and cry, rage against the world but that takes energy I just don't have. Besides, there are people worse off than I am. I have to remember that and get through another day.