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

Visiting Friends

I've been visiting the blogs of some friends lately. If you're interested in popping in and reading my thoughts, please do.

Kim Petersen

Kim is a local author who I've been doing some work with. It's nice to have a 'running mate' to do author talks and workshops with, and to chat and brainstorm over a cuppa.

In one of our chats, Kim invited me to write something for her blog. Her blog posts are all brutally honest and I was a bit hesitant about what I could/should write. In the end I went with something that's been bugging me and I wanted to be clear about.

This is my post on Becoming Whole.

https://whisperinginkpress.com/2019/05/16/becoming-whole/

The Jar Writers Collective

Another invitation came from a writing friend, Jodi Cleghorn. She has a group of writers who are looking at creativity in creative and abstract ways. She invited me to write for the theme "Words As..."

As soon as I read that, "Healing" popped into my head. And then the doubts took over. But I'm working on the doubts, so I took a few deep breaths and thanked the doubts for visiting.

The next day, lying on the lawn in the sunshine, I stopped reading as words poured out onto a page. Words that talked about healing. Spoke of my life with books and words. Talked about stories.

Here is Words As Healing:

http://thejarwriterscollective.com/2019/05/24/words-as-healing/



 

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.

On The Improve - doing things!

I'm improving - I can't believe it and I'm so incredibly happy!

Acupuncture and Chinese herbs seems to have kick started my immune system and I'm on the mend. My chest is clearing, ears almost fully functioning and throat fully working! I can talk!

In case you're into alternative therapies, I found a great place for acupuncture and Chinese herbs: Red Orchid Wellness Clinic in Nowra.

I just had visitors who were here this time last year and they kept remarking on my health, surprised by what I could do now. It's amazing when other people notice. It makes that zinging in your heart more real! Below are some photos from the last few weeks.

So, with my health on the restoration pathway, it's time to get back to writing. Sadly, it was neglected last year.

I have a release next month, Long Game, but I need to write to get a few more in the pipeline.



Thanks for hanging around with me. I appreciate your support.

Cath xo

Me in the surf, taking the photo

The Tower at the Illawarra Fly Tree Tops Walk

The sign at the top of that tower - I made it up those stairs!

View from the top of the tower

Tree Fern from the walkway at Illawarra Fly

A roll cloud at the beach - such an awesome storm to be walking in!

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.

Male role models

Recently, it was Fathers Day in Australia, which is a tough day for my Dad because 14 years ago, my Mum died right after Father's Day so it has a bad association for him. We keep it low key but this week in September is tough.

And it's been tougher because a man I've called a pseudo-parent since I met him, unexpectedly passed away leaving behind his gorgeous wife who he cared for. My heart breaks for her, their family, and for the loss of him in all our lives.

I've been truly blessed to know some wonderful male figures in my life, many who've played father-like roles and/or have been great friends. I know it's an odd thing for a female to say, but I'm an odd female, plus my career was working predominantly with men so I guess it's not unusual.

Growing up, I was surrounded by women being the eldest of four girls but I was always a tomboy and hung out with Dad because we liked similar things. I loved sport, fishing, the outdoors. Pre-5th class, I was friends with most of the boys in my class, and then they left the school and from then, I went to all girls school and never really fitted in. So my best childhood memories are playing sport with the boys. Most of my friends' dads were referred to as Uncle, and at most gatherings, I'd be playing sport with the men. It sounds dreadful, and I can't think of a way to write it where it doesn't sound wrong so I'll just spell it out. Nothing was creepy, or sexual, or predatory. Looking back, I think it's odd, but at the time I was never uncomfortable. Being with blokes was where I fitted in most.

Throughout high school, I struggled. Looking back, there's a real scarcity of males in those years. But in the last years of high school I joined a mixed youth group, and again, my best times were when I was with the guys. One day I remember coming home from a day at the beach and when Mum asked questions (like why didn't someone put sunscreen on my back), it dawned on me that I'd been on a trip with the guys. There hadn't been any other girls. I hadn't noticed.

I was never attractive, suffering from extreme cystic acne and rosacea ensured that, and so I didn't flirt, didn't try to play games, I was just me. I think this is why I had so many male friends. (Thanks to a girlfriend for pointing that out to me, after it had baffled me for years).

I worked with men all my adult life, comfortably. A couple of guys flirted with me when drunk at Christmas parties, but aside from that, I never felt like a different gender. I was just a mate.

And I had a range of age groups among my mates, not just guys my age. I had male colleagues, who'd mentor me, who had retired or were close to retiring. I had bosses who were like working with Dad (I also had bosses I struggled to work with, so it wasn't all smooth sailing!). I chat to people, and I used to be able to drink alcohol, so I'd be privy to some quite personal conversations with men, sometimes without them realising that I was female. 

The friend we lost over the weekend I first met when he was the local butcher and I used to get dog bones and dinner. We chatted, he was always polite and sweet. Then he was gone. Retired they told me. Some months later, I met my now husband, and his neighbours were away when we began seeing each other. When they returned, I worried about meeting them because they were his pseudo-parents and very good friends. When I got in there for the first meeting (a Friday beers night), it was my mate the butcher and he remembered me! He and his wife were the nicest people you could ever meet. They welcomed me like a daughter. They treated Pete like their son. We regularly had Friday meals together, sometimes Sunday morning teas. Tom knew everyone, knew all the connections in the small town, and I loved hearing his tales. We'd shoot pool, drink beers, move to (CS)Cowboys (Baileys and Butterscotch schnapps), laugh, talk sport, eat, laugh, talk. 

From Day 1, I was part of his family and I was incredibly blessed to know him. He supported us, always. He supported me. He had the patience of a saint and encouraged me to learn golf, to which I have no aptitude, but he cajoled me around those damn holes many a time, even when my 10 000 hits of the ball caused me no end of frustration and anger. He made me laugh. He calmly gave tips. He'd cheat so I didn't lose my mind. He'd side with me. He'd side with Pete. He'd make us both laugh. When his wife was ill, his unceasing love and care for her was incredible to witness. When his daughter was ill and then died, his grief was raw, he shared his emotions and his stories and his love. He allowed people to be. He accepted you as you were, allowed you to live your life, and supported you as an individual. He was a man I've been honoured to know.

And thinking about him made me realise how many of these sort of men have been a part of my life. Strong male role models and friends have always featured. I could name almost a dozen without any thought, and without counting family.

My Dad is a fabulous bloke, and I've been blessed to have him as my Dad, but I've also had a lot of other 'dads' who have touched my life and I've been very lucky to have known them all.

(Just so you know, I have had some amazing women in my life too, often the wives of these men, but my mind was on 'fathers' since it's September).

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.