Tag Archives: chronic fatigue syndrome

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.


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.


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.


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.

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

I choose faith.

Her Diamonds – Hang in there, Mum.

CFS/ME is a nasty, nasty, horrible, nasty illness.

I have just spent the morning sitting on the floor of my mothers bedroom while she lay collapsed, semi-conscious and unable to move on the bed.

I had hooked her up to oxygen, taken her blood pressure, given her heat packs, fed her meds. Yet nothing can pull her out of these horrible dizzying and painful collapses except time…she must simply suffer and wait them out.

And yet they keep coming, regularly at the moment, and every slight change in her treatment seems to trigger another.

And yet she never complains. She just lies there apologising (when she can talk). She even apologised to the ambos once.

Such a kind, selfless, brave soul.

So for her:

And I don’t know what I’m supposed to do
But if she feels bad then I do too
So I let her be

And she says ooh I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can’t help her now

She’s down in it
She tried her best but now she can’t win
It’s hard to see them on the ground
Her diamonds falling down, way down

And I don’t know what I’m supposed to do
So I sit down and I cry too
But don’t let her see

I can’t take these diamonds falling down

Rob Thomas – Her Diamonds (written for his ill wife)

I hope they figure out this stupid CFS/ME thing properly soon.

Embarking on a journey…CFS/ME style

[this is another post for the CFS/ME readers so feel free to tune out if you’re not interested]

Since being diagnosed with ‘aspects’ of CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) when I was 17 I have lived in a pretty decent amount of denial.

I basically just stuck my head in the sand, ostrich style, assuming that the less I looked at it the less impact it would have on my life. I avoided telling people about it at all costs.

I have seen the severity of it; my mother is bed ridden from it and my sister has been extremely ill with it for ten years. I always cared about them and have done what I could, but have never taken the time to actually learn about the illness.

When I had to go to the doctor, his scribbled diagrams explaining cell function and digestion would just fly right over my head and I would just take whatever meds or supplements that were promised to help, until I decided they really didn’t do anything and would stop taking them.

But now that i find myself not with ‘aspects’ of CFS/ME but with the full blown version, I have decided to pull my head out of the sand and take responsibility for my own health. I have pulled out my old biology book so I can begin to understand cell function and those crazy diagrams from the doctor; I am now following some decent CFS/ME blogs to keep up with the latest research and reading pages and pages of journal articles and findings to acquaint myself with the world of CFS/ME and treatment. I am learning why I am taking each supplement and drug and deciding for myself to stick with it or not.

And its fascinating. And validating. like this:

“In CFS sufferers the drop [of cardiac output] may be from 5 litres lying down to 3.5 litres standing up. At this level the sufferer has a cardiac output which causes borderline organ failure.CFS – Mitochondrial failure

Yes. Borderline organ failure. No wonder I feel like passing out so often. Nice to remind myself I’m not just crazy.

Anyway. For you CFS/ME readers out there, will keep you posted with any interesting finds along my journey. Will start a series of posts related to particular symptoms, my experience, and research I can find regarding suggested causes and treatments for those symptoms (although chances are, you probably already know way more than me… πŸ™‚ )


The uncertainty surrounding CFS/ME (chronic fatigue syndrome) regarding its cause can make it very difficult to explain (especially when you have no energy to do so).

Found this promo to what looks like could be an interesting doco (hasn’t actually been made yet..). Great watch for CFS/ME sufferers and anyone interested in the illness.

It looks like it will tackle the issues of misdiagnosis and depression and also contain interesting information regarding the latest research, relating to the discovery of the retrovirus XMRV and its possible link to CFS/ME (scary…yes…and so far unproven; but anything that has the potential to validate the severity of the illness and leads to a potential cause is exciting! this discovery is the reason the Australian Red Cross has banned CFS/ME sufferers from donating blood…)

Have a watch. πŸ™‚

a longer and different promo is available here – What About M.E.

Whispering hope

random rambling:So I committed myself to a self-imposed hermit-like existence this week in the hope of getting my assignments and exam study done.

The frustrating thing about feeling so sick all the time is having such limited energy and having to choose between things….say…people, or passing uni.

And it’s got me a little frustrated.

Because if people…relationships, caring, laughing, reaching out, connecting, all that jazz…really are the most important thing in life…than isn’t that worth investing more time and energy into than anything else?

So much brokenness. Everywhere. So much need.

As Mother Teresa said, β€œThere is more hunger for love and appreciation in this world than for bread.”

So if I’m sick….and only have limited strength…am I really investing that energy and effort into what matters in terms of living a life that counts?

Sure I want a uni degree and I want to be able to help people in useful ways. And writing essay after essay would be fine if it didn’t take everything that i have at the moment…but I just end up with nothing left for people…hmm….man I want my health back.

I leave you with this picture. I like it. My heart….is to find the people that need it….and gently whisper hope.

new treatment. scary. exciting.

I try not to talk about being sick too much ‘cos it’s a drag to hear about all the time. Even I get sick of hearing about it.

But the fact is ill health is having a very significant impact (negatively…) on my life at the moment (I mean how many people have to use oxygen while they do their assigments? makes me feel like a little old person).

But this is exciting. I have officially started a new treatment to deal with my CFS/ME after seeing a specialist from Belgium.

It involves a truckload (and moneyload) of supplements and cycles of antibiotics.


  • …because apparently it has a good chance of making me worse before I get better…something to do with releasing nasty bacteria from cells and therefore increasing the load on my already under-functioning immune system.
  • …because there is no promise that this will work.
  • …because it involves having to inject myself daily. ew.

However, exciting:

  • …because it feels good to be doing something; to be giving myself a significant chance of fixing the root of all this chronic pain, nausea, exhaustion, constant flu like symptoms, and to dream of one day feeling like a normal person….

So far: have completed one week of this treatment. Have survived. However have had a dreadful weekend and have nearly fainted several times and managed to get very little study done. but hey at least it’s doing something. feeling positive.

3 weeks of semester left. just need to hang in there 3 weeks more…then 5 sweet weeks of holidays. apart from work. but still. yay!