Tag Archives: 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?

Advertisements

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.

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.

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.

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.