Tag Archives: CFS/ME

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?

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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.

What is ME/CFS?

This is a sweet-as video presentation of the quick facts of CFS/ME.

And if you’re after a quick run-down of XMRV/MLV differences check this.

Exciting, hopeful (and scary) times, CFS/ME sufferers.

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… 🙂 )

CFS/ME Doco

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. 🙂


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