Category Archives: Sickness

What is more noble.

She came in again yesterday. Once she would have marched into the store, this time she limped painfully and slowly. The hair that she used to so often fuss about is gone, replaced with a small akubra adorned with a floral scarf.

I often find myself sighing when I see my chatty and fussy regular customers heading in, as I cast a glance at the pile of paperwork and orders waiting to be dealt with. I am polite, friendly even, and always helpful; I like to do my job well. But I am normally so eager to return to my errands so that I can gain the satisfaction of simply checking them off my to-do list; so I don’t normally prolong any irrelevant conversations.

But here she was again, dramatically altered by cancer in just a few weeks, and suddenly the paperwork wasn’t so urgent and her complaints not at all irritating. It wasn’t pity that I felt; it was appreciation, for this person, just as she is, and for the fragility of life.

Why is it that we need an acute awareness of our own mortality to wake us up to what is really important? Why do I so quickly forget the same lesson over and over?

This year, I have known three young people pass away tragically. In each case, it wasn’t their achievements I thought of when I remembered their lives, how academically qualified they were or how big their houses were or how efficiently they did their paperwork; instead, all I thought of was how they influenced others lives.

I have always carried a sense of urgency about life with me; however, for me that urgency has translated into ambition and drive. So I now drag behind me a trail of top university marks (2 subjects ahead too!) and checked off to-do lists and savings in the bank and a sense of failure at not being more successful in life (you know, successful as in I should be writing my fourth book while running a multi-billion dollar corporation that I founded that uses its powers to help bring transformation to injustices within the world while leading an active social life, pursuing my interests in music and circus arts by gigging and fire twirling each weekend and then clown doctoring at the children’s hospital at least twice a week followed by. totally realistic).

But given my current energy restrictions (that a part of me still stubbornly refuses to acknowledge), this single-minded drive has also cost me many friendships, evenings spent laughing rather than staring at a computer screen for hours. It’s led to my poor family having to deal with me tired, cranky and antisocial on a regular basis, and it has worsened my health.

Fair trade off? I think not.

Nothing wrong with working hard…I so appreciate the opportunities we have here. But maybe it’s time to finally take the advice that everyone keeps offering, and cut back on work/study (whoa! scary.) and try to enjoy the journey a little more…so that hopefully I can help others enjoy theirs, too, rather than spending the whole time thinking of my stupid to do list until I arrive at the end of my journey with all my paperwork properly filed and my bucketlist unexperienced and no friends in sight.

So forgive me if I take Billy Joel’s advice some time soon and:
“Slow down, you crazy child.
Take the phone off the hook and disappear for a while.
It’s all right you can afford to lose a day or two…”

And to the friends that I have neglected due to my overly zealous commitment to study and work, forgive me. Lets have coffee.

“It is more noble to give yourself completely to one individual than to labor diligently for the salvation of the masses.” – Dag Hammarskjold

Need inspiration?
Read about how Henri Nouwen left his job at Harvard to care for Adam, a severely disabled man
Or Mindfulness – the art of conscious living.
Or how a stranger gave me flowers in Guate just when I needed them
Or ask me about the most incredible, resilient girls I once lived with in Guatemala…

xoxo.

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Acceptance.

[this is a post regarding my life living with ME/CFS – to see more posts regarding this topic, click.]

“I need to know what is causing it! And why it’s worse again!!”

Consoling my close friend, who has sadly just been diagnosed with ME/CFS after several years of ill health, was more difficult than I thought. I watched her grapple with her new limitations after previously living an athletic and energetic life; I watched with concern as she sat so subdued in social settings…vastly different from the vivacious and outgoing person I knew; I watched her as she adjusted her diet to perhaps the healthiest sort that could possibly exist, cut back on her activities and rested extensively, and yet saw no improvements to her health. And I had so few answers for her.

“Why??” She complained, and then stormed off to eat the cake and chocolate she had so long been depriving herself of, as not eating it didn’t seem to make any difference anyway.

And as I watched her emotional upheaval, I started pondering the idea of acceptance.

How with situations such as chronic illness that are so far out of your control, you simply have to get to a point of accepting that you won’t find answers, accepting that this is how it is for now, accepting that you really don’t know what the future holds, and then choosing to make the most of what you’ve got.

Easy, right?

I confess, I suddenly felt a little proud. I’d accepted it. I’d dealt. This was my bitter pill to swallow (sometimes literally…you should smell some of the supplements I’ve tried!). My mountain to climb. And here I was, staying well on top of my uni work, taking loads of rest breaks, sticking to my dietary restrictions, being ‘mindful’, balancing my social life – I was in a good place. A great place. Plus, things were looking up – was feeling the best I had in months; surely, this was just the beginning.

Cos I’d accepted. Hooray, I’d figured life out. On the up and up.

And then came an outbreak of hives (what the hell?? didn’t even know what they were before). And a particularly bad reaction to some new treatment. And a significant relapse.

And bam. I realised, acceptance is a journey. A process. You don’t arrive. It’s continual.

Cos honestly, right now as I’m spending yet another evening in bed with aching legs and an aching head and a truckload of unfinished uni work that my brain refuses to focus on and a jumble of illness-induced stress and anxiety, I don’t want to accept this.

I’m not where I want to be. Literally.

But I’ll remember that good place I found. Take a breath. Take that step. Grab the hand of my friend and together…we’ll find our peace in this.

CFS/ME readers, what have you found has helped to bring you peace/acceptance on your journeys?

ME/CFS Blue Ribbon Awareness Day/Week

As many as 180,000 Australians directly affected. Around 1 million Americans. Possibly 17 million worldwide. Classified by the World Health Organisation as a neurological disorder. Significant enough that the Red Cross won’t accept blood donations from sufferers. Recently reported in TIME magazine, recently acknowledged by Obama. Recently linked to a retrovirus (XMRV). Can be as debilitating as M.S. or late stage aids. And there is no cure and limited treatment available.

It is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome awareness day (and whole week, actually).

So we already know the facts and the confusing and often conflicting treatments that are available, and we know that the name chronic fatigue syndrome should have been long tossed out the window given that fact that chronic fatigue is a symptom of pretty much every ailment that exists, while ME/CFS is a specific illness that meets a strict criteria.

So rather than rehash all those facts even further, what does this all look like? In reality, in real life?

It means hitting the pause button on life. Indefinitely. And then fading into the background.

Living with someone who suffers from severe ME/CFS, it is easy to lose sight of what’s normal. You forget that it’s not normal for her to collapse on a weekly basis. That it’s not normal for her to be thrilled when she can manage a walk all the way to the letterbox and back. That it’s not normal to see her in constant pain, 24/7. That it’s not normal to have to plan an outing weeks in advance to make sure she will have the strength; and even then, no promises. It’s not normal to see her robbed of things that are normally taken for granted – like ability to eat most foods, socialise, do the things she loves.

When someone else close to me first got the illness, of course I didn’t realise. We didn’t even know what it was. The flu. Of course. She would be better soon. Just 16. Never mind that she could barely eat, and just…didn’t..get..better. And now 11 years later, the flu is still there. But worse. “Just chugging along,” she said, living daily with the aches and fevers and exhaustion, waiting for a long promised treatment that is yet to materialise, yet to bring hope. Life on pause. In limbo.

The courage of these sufferers astounds me. Neither of these people I love complain. Ever. Not even like me, even though they have much more of a right to do so having been robbed of so much; the little everyday things that people take for granted. Like popping down to the shops – just for fun, and without it causing aching legs and a throbbing head and sending your heart rate over 150. Like working full time. Like popping around to see friends for coffee.

As much as I try to ignore what this illness has done to my family and those I love simply because sometimes it’s easier to choose not to see, when I stop and reflect…this illness is real, it’s impacts are hugely significant not just on the sufferer but on their whole family, it is isolating, and most sadly, it is hidden.

So today I am wearing blue. For awareness day. To stop myself from continually ignoring CFS/ME and avoiding questions about why my mother is so ill because it’s simply so hard to explain. In the hopes that finally some real research will be done regarding these recent serious developments that have emerged in the field. That finally the whole ‘yuppy flu’ sterotype can be put behind us and GP’s can realise the reality of this disease, and the thousands who go undiagnosed can find sanity.

If you want to know more, I recommend ME/CFS Association of Australia. Or you can read my previous posts on this issue.

And on a lighter note, this Sunday, I am going to hear someone called Dr Butt speak on Faecal Microbiology in Patients with ME/CFS. Now that, is pretty funny.

BAM! and splat.

You know how I wrote about running into walls once before? (metaphorically, that is.)

Well I found another one. A wall. A big one this time. And it’s been awhile since I whinged about my health so here goes.

After managing my health fairly well for a couple of months, I forgot about the walls. I forget so easily. I think its selective memory.

Anyway.

Last thursday night.

Middle of the night.

The wall.

4am. Awake. fever. nausea. aching. thirsty thirsty thirsty. BAM. I had run into it head first (in the middle of the night? seriously body…why complain when you’re sleeping????)

Since then, I’ve left the house just twice. Moved from bed. to couch. to bed. to couch. Laid awake half of each night with heart palpitations. Failed to have the super-productive get-all-my-assignments done and social easter as I had planned.

I did however, in my stubborn determination to not let this blasted illness win, read 3.5 books (quite a feat in itself when your brain refuses to absorb information. yup I’m awesome. or stupid, to force myself to be productive. not sure which) and watched half a series of the West Wing (at least I can live vicariously through the lives of others).

These walls scare me. Because of their unpredictability. Because I can’t figure out what causes them (is it the flu that’s going around? was it the dancing at my friend’s graduation? was it eating the dairy that I shouldn’t have (and it wasn’t even icecream! fail)? Was it not getting to bed early enough? circles and circles in my head…).

Because its when I’m sick that I get the best ideas for things I want to do but don’t know whether they’re worth dreaming about. Because when you hit a wall it even feels horrible to lie there and rest, there is no escape. Because they limit my future. Because I am least emotionally capable of dealing with a chronic illness when I feel, well, chronically ill. Because everyone in my family hits them. And I want to make sure I can look after everyone.

So. I have had my whinge. I will move on now. It will pass.

One of the books I read spoke of HIV/AIDS patients in the slums of Nairobi, Kenya. Shunned by their families and society, too ill to work, too poor for treatment, many lie suffering alone in tiny slum shacks with no bed, no sanitation and no food. When I read that, it really put things in perspective. I am so very, very blessed. Ill, but with a bed to lie in. Ill, but a doctor to treat me. Ill, but food to eat. My heart goes out to all people suffering in such horrific conditions…hopefully one day will be able to do more to share the blessings I’ve had through illness.

Simply lovely.

I haven’t had to set my alarm for 2 whole mornings now. Amazing.

Am seriously considering listening to tomorrow’s lecture online so that I can make it three.

Yup.

x

Ever sat down and realised…you just can’t get up again? MmmHmm.

My body is venting its anger at me for working 6 days a week this month and insisting on having some semblance of a social life. Apparently these things are not compatible with CFS/ME, or so the throbbing legs, stinging eyes and brain fog tell me (brain fog = CFS term for cognitive disfunction…you know, when your brain totally freezes…can’t think a complete thought, and you keep rereading the same paragraph over and over and over…).

I still get SOOO FRUSTRATED at not being able to be the driven person that I want to be…achieving things, experiencing things, socialising, living. As sufferer Eric Vought wrote, “It hurts. It hurts to watch while someone does something you love and cannot do.” And yet I know I am still so blessed….not sick at all, compared to many CFS/ME sufferers (many are bedridden). I have lived so much. But still, the frustration of my limitations just makes me want to punch something. But thankfully, I don’t have the strength for that.

So it’s times like these when you like to hear news like this:

“I believe we as a community are closer than ever to a change in the weather, that the bleakest moments of what feels like an eternal winter, will pass. We are uncovering more and more of the underlying mechanisms, painstakingly piecing together a huge medical jigsaw puzzle. Dr Don Lewis has been instrumental in this process [Dr Lewis = my family’s hero!]. This will translate into better care for patients and there is definitely the potential for curative treatments over the next decade. We are watching history in the making. We will feel the comforting warmth of summer and this endless cold, dark winter will pass.” – Dr Nicole Phillips, excerpt from ME/CFS Australia Emerge Journal Summer 2010.

Exciting times. So much unknown, but looks for the first time like questions are going to be answered, and solutions explored.

Brilliant.

PS. looks like I’ll be starting a new IV treatment (GcMAF – as far as I understand, it’s the activator for your macrophages – boosting your immune system) as soon as they can get it into aus. hmmm. For now, just hanging out for fiji…and a week in a hammock.

Walls

You want to know how I feel? I feel like I have hit a wall. Not just hit a wall, but like I have run SMACK INTO a brick wall at FULL SPEED and like I am now lying collapsed in front of it.

NOT COOL.

I get so frustrated because part of me still tends to think that my sickness (ME/CFS) is somewhat mind/over/matter…and as long as I am taking my supplements, eating right, staying positive, and not doing too much then I will be ok.

But apparently this stupid illness doesn’t really care how well you look after yourself and can smack you over the head anytime it feels like it.

But I have issues with this, because I like to be in control…I like to plan my study time, when I will go out, my career, my volunteer work, my travel plans.

But when you have a serious chronic illness it sometimes takes the plans out of your hands.

Like now, when I had a week of planned study and socialising but instead spent most of it in bed trying not to throw up.

Like this summer, when I thought of travelling back to Latin America to source handicrafts for my not-for-profit idea but instead have been told my immune system won’t be up to travelling for months yet.

Or like having to turn down the perfect volunteer/job opportunity that is exactly what you want to end up doing because you simply…can’t…do…it.

It is very easy to feel robbed and to fall into a self-pity funk.

But I am determined not to. This has come as a challenge to my faith.

Do I actually believe that He will cause all things to work together for good? Do I actually believe that my value doesn’t come from what I do/achieve? Do I believe that I have these dreams and passions about assisting street children in Latin America for a reason, and do I have the faith to believe that it will come clear when it’s the right time?

My mum keeps reminding me of the quote…“life is just one crises after another…”…so get used to it!

My head hurts (a lot). My legs hurt. I feel so so tired. I feel emotionally spent. I wish I was anywhere but in bed. I wish I was better prepared for all my exams this week. I wish I was in Guatemala looking after a bunch of children who need it.

But I’m not. And you know, if people in Haiti can find the strength to deal with the devastation of an earthquake and the people of Pakistan can deal with the horrendous destruction of those floods in the midst of intense poverty, then surely I can deal with an illness in a comfortable bed where I don’t have to worry about food or safety.

‎”Let nothing perturb you, nothing frighten you. All things pass. God does not change. Patience achieves everything.” -[mother.teresa]

I choose faith.