Sunday, 11 October 2009

Eleni-fest: this week and CFS

Before I get into my topic of the week - CFS (Chronic Fatigue Syndrome), I'm just going to run over the schedule for this week.

Special Guests

On the 12th October, my special guest will be Mel Teshco, an Ellora's Cave (erotic romance) author. She has a choice of either  copy of her debut release Stone Cold Lover or a critique of your first chapter as a giveaway.

On the 13th, Sexy Sensation (Modern Heat) author Anne Oliver will be my special guest. She is giving away a copy her latest release, Memoirs of a Millionaire's Mistress or a copy of a title from her backlist. 

Urban Fantasy author Tracey O'hara is my special guest on the 15th. She has NCK promo pack (tote bag, T-shirt & hat) as a giveaway, and in honour of Tracey's book, Night's Cold Kiss helping Eleni-fest kick into gear, I'm adding in a wizard shaped pen too (see website competition for your chance to win a copy of NCK).  

R*BY nominated Claire Baxter will be my special guest on the 16th She will be giving away a copy of The Best Love Stories of 2009 (which has 6 of the short category nominations including Claire's The Single Dad's Patchwork Family). 

R*BY award winner and historical romance author Anne Gracie will be my special guest on the 17th. She will be giving away a copy of her R*BY award winning book, The Stolen Princess
What a fantastic line up eh?!

Blogs visiting

I will be at the Romance Writers of Australia's blog on the 14th, so pop over there for your chance to win a writer's pack & souvenir pack.

Now to the topic at hand - 
Chronic Fatigue Syndrome (CFS)

You know those days when you feel so tired, you just want to crawl into bed and sleep for a year? Yep, I get many of those days on a regular basis. Some weeks  more than others, sometimes less than other days. It's not just the fatigue, it's the aching pains of the body, the headaches, the feeling as if you are drudging waste deep in mud, your head is twirling, the emotions, and the lack of mental and physical energy. The overall sluggish feeling.

CFS is an umbrella term for those conditions where someone has had constant fatigue for more than 6 months that can't be explained by another diagnosis, does not get a huge amount of relief from resting, energy levels diminish, and there is no extra exertion to explain. Basically it is not known what the exact cause of CFS nor is there a one stop cure. You can read a fact sheet and an overview of CFS (opens a pdf document) from the ME/CFS Australia (SA) site. They can put it into words much better than I can. Yes I know I'm a writer but these folks have a better way of conveying the right information the right way. 

And here's a snippet taken from on their website -
"Well known people who are or have suffered CFS (or CFS-like illness) include: 

Charles Darwin (naturalist)

Florence Nightingale (nurse, writer, statistician)

Andrew Lloyd Webber (composer)

The Duchess of Kent (British Royal)

Linley Frame (Australian Olympic swimmer)

Barry Sheen (World Champion motorcycle rider)

Tottie Goldsmith (Australian media personality)

Johanna Griggs (Australian media personality)

Richie Richardson (former West Indies cricket captain)

Alastair Lynch (former AFL footballer)

James McDonald (AFL footballer)"

I wanted to shed light on this subject even though luckily in the last few years more and more people understand that this not a made up illness. It's real. And I live it along with many many other people.

I've had CFS for about 9-10 years (mine being largely inflammatory). But I was one of the lucky ones that initially I was able to go to work. I basically worked hard all day (in one job, I managed to grab a nap during lunch time) but I crashed as soon as I got home. I hardly saw my friends or extended family. I did eventually go to part time which helped me out. And seemed to find a balance for a little while. My work was not affected and until it did, I wouldn't give up my job. Another thing was that my employers didn't know. Again unless it interfered, I just went about doing my job.

That worked until 3 and half years ago. My CFS flared up and so did anxiety and it affected my work in a huge way. My work mates were fantastic and surprised to learn of the CFS and were a huge support to me when I tried to decide how to tackle it. I tried to keep going but my body just had enough. I was not only fatigued physically, but mentally, emotionally and even spiritually. It was a very difficult time. My family were amazing, as were my health care professionals. 

I haven't worked since that time. I didn't do anything for a very long. Reading was hard going. TV helped some. About 2 years ago, I started slowly to get back into writing and reading. Baby steps. Then the Bootcamp came along and that opened more up for me. Still more baby steps than others. I've made progress since then, but again it has to be balanced

Oh I do help out with things in RWAus, write/edit, studying very part time, and have been looking for work the last 18 months, but finding the right job has not been easy. And at the moment, my job case manager and I have decided to take a little break from job hunting.

Writing to me is the perfect job - I can write with my night owl tendencies (despite trying to break this cycle) and take breaks when I need them to balance out the day. It's still not perfect as I tend to still be a person who pushes themselves. There's pushing and there's over-pushing. I tend to fall in the latter group.

One thing about CFS that people don't realise is that even though on the outside you may look okay, on the inside you may feel truly awful. It's not something you can always 'see'. So it's akin to wearing a 'mask'. So even though I feel like my eyes are dragging down and burning, my body ready to collapse and in pain, it didn't always show. And then there are times when it does show through or I go visiting somewhere and can't keep my eyes open. Family are used to me closing my eyes abit on their couches. Some days I sluggishly move along...a snail could beat me!

While more and more people got to know about my CFS, I still held onto my old fear of prospective employers finding out, but seriously after so much time off, they would know something was up. And it was applying for the Arts grant that made me realise not to hide anymore from the wider world. Sure I didn't have to say a thing. But the choice was mine and it was freeing. It's like I 'own' the CFS now. It's why I never joined the ME/CFS association - for fear of discrimination. I was honest in one job interview (pre crash) that I had it, and even though everything had gone smashingly until that point, I think that put a huge cross next to my name, despite at the time feeling well enough to tackle the job. Then again another place offered me a casual job and was very grateful for my honesty. 

With being so mentally drained, I read about CFS in spurts in times when I do have the energy as I just didn't want information overload. I'm lucky I have one hell of understanding physician who helps me in my journey to find the right course for me. I've been along some paths that looked promising but I needed to hack my way through. It's not a static thing - CFS - there are moments you can actually feel almost 'normal' (whatever that is) and then moments when you can't keep your eyes open even though you've only been awake only for a couple of hours, or when mentally you are more awake but physically your body is aching, or vice versa. It's like a jigsaw puzzle that changes its image.

My writing buddy Nikki Logan and I were chatting via IM one day and she made a suggestion of maybe writing a story about it in a fictional setting. I'd been thinking of starting a blog and this resonated with me. I have started the blog but it's different from what I imagined. It's about Lo'EnGee who lives in the world of Fatiguedom. I will work more on the story later but I think these beginning posts are making me think of how I can convey the's experimental... see what you think. Again, despite wanting to keep this up to date - it all comes down to energy.

I once heard a theory about a lady talking about lupus on a blog somewhere (& darned if I can find the link) but can be used to describe CFS. She had to explain to her friend about what it was like living her day. Basically she said you have a set number of spoons each day, say 12. You can not get more spoons and spoons can not be left over from the previous day. It takes say 3 spoons to wake up, crawl out of bed and take a shower. And so she continued to go through the day saying she couldn't do this or that because it would take more spoons than she had and needed to be mindful for the rest of the day.

I agree with the spoon theory though for me I think it is spoonfuls. Some days the spoons are heaped, others they are level, and other days there is very little or nothing there. 

When I was at the conference, you could wonder at me having CFS. I was upbeat and energetic when I was around people (well to my standards). Their positive energy and the buzz from being at a conference helped. But when I was alone and at night, my body reminded me how much it ached and I was taking pain killers every day more than once (I usually try not too have too much). When I crashed some nights I was just drained - mentally, physically, emotionally. I had a wonderful time don't get me wrong. I crammed in as much as I could into 5 days but of course I had to be prepared to rest when I returned home. Luckily for me my chiro, 'Mr Magic Fingers' as a fellow client calls him, saw me the day after I returned so I was able to get a good sleep after my appointment. Whenever I get an adjustment I know that I get the best sleeps. I still crashed but this helped lessen the depth.

The ironic thing about CFS is that you need energy to be sick. I mean you just want to let go and go with the flow, but you have to think about your diet, about going to appointments, about trying this and that, exercise. At times I have to admit I've had to say 'stop' and taken a break of thinking about it all the time. It takes energy.  But I've found that understanding health care professionals, understanding family, friends and co-workers make a very huge difference. I've not sought out support beyond that. Energy reasons and because I am one of the lucky ones who have had support from the start. Others unfortunately don't. You have to do right by you - and that is indeed the part I struggle with. Each day is different. I may think I can do a, b and c and maybe the day I plan them I can. But when I wake the next morning I can only cope with a and b, well that's just part of the package.

For example I'm having a blast with Eleni-fest but I've chipped away at it, stayed at the computer longer than normal, had less naps so far, to get it happening. But I have to keep the balance otherwise I will be headed for a major crash & I especially don't want that happening right now. Hence the chipping away.

Despite all the ups and downs over the years with CFS, I still feel blessed to have the support I do and that I have my writing. It has helped me in more ways than I can count. And so have stories where I have been able to escape too.

I hope you have found this post interesting and informative. 

Now while I know chocolate is not the best for those with CFS, it's okay to have some in moderation (dark preferably). I have a small packet of Haigh's chocolates, a bookmark, a little owl key-ring watch and some fantasy stickers as a giveaway.

Just make a comment below. Comments will be open all week until the end of the 17th October.

Comments now closed. Congratulations Nicky!

Be well all.

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