My #1 DifferenceM@ker

Given the lack of scientific evidence, and the continued confusion over the causes (and therefore possible cures) for CFS/ME, there is a myriad of different approaches to CFS/ME management out there.

It seems that some of these approaches take great pride in discounting other approaches, but the reality is that nobody knows what causes CFS/ME, its symptoms are broad and varied, and each person’s experience appears to differ. Until science has caught up with this illness, I honestly don’t think we are in a position to discredit any source of potential relief, and whilst there appears to be some bogus claims out there, I think it’s important to analyse and weigh things up before you turn your shoulder to them.

In saying this, if you search online for CFS/ME treatment, you will literally be bombarded with a million and one different treatment options and claims. It is very easy to become disillusioned and overwhelmed by this. It’s also very easy to become caught in the trap of shelling out literally thousands and thousands of dollars on that treatment that promises to take away your suffering.  I know, because I fell into that trap.

Ultimately however, I am able to share – with the grace of hindsight – the two best steps that I took in my recovery thus far. I cannot and will not say that they solely have led me this far in my recovery – nor can I say that they will definitely assist you in your own recovery. In all honesty, the level of recovery I have experienced to this point seems to have just ‘happened’. And strangely enough, the two most helpful treatments are those that I kind of ‘fell’ into, not really knowing what it meant for me and the management/recovery from my CFS/ME symptoms.

My #1 DifferenceM@ker – Therapy. 

Before you think any further, I am 100% adamant and science shows that CFS/ME is NOT A PSYCHOLOGICAL ILLNESS. That’s not what made the difference. But a chronic illness seeps its way into every facet of your life, and it doesn’t take long to be lost in the darkness and depths of anxiety, depression, and suffering. I find it almost comical now, that my original reason for seeking psychological services, was for assessment to see if I was ‘crazy’ and if I was somehow making this all up in my head. I didn’t want to believe it, and I’d surely read plenty of information that said it was not a psychological illness, but the stigma and the reactions of people in my environment were contradicting this very heavily. And I came to a point that I just needed to know. It’s better to know your devil – whatever it may be. Here’s what I have gained through engaging in therapy:

1. Validation. Finally, amidst all of my confusion, all of my pain and suffering and fear, and with all of the controversy and at times downright ignorance of other people in my life towards my situation, somebody was able to stand by me and say “You are not crazy. This is real. And you are suffering, and it’s ok.” 

2. An Unconditional ‘Friend’.  I use the word friend cautiously in this sense as your therapist is not your friend in a usual sense, but I think it is truly the best word to describe what can be obtained in the right therapeutic relationship. In a time when I felt very isolated, very alone, and like the world was against me, this one person was standing there – a foundation that I could lean on in confidence that they would not turn their back on me. I can’t even put into words what that meant for me, and what that provided me with. In some of my saddest and darkest moments, that unwavering support was what kept the embers burning – because it offered me hope.

3. Courage to Make a Change. I’m changing my life. It has had to change. I can’t perform my old work anymore – and to be completely honest – I’ve changed a lot since I became ill. I can’t live the way I used to, because my health no longer allows me to abuse and take my life for granted. In truth, I’m not sorry about that. Not now (although it has take a lot of work to get to that point). You see, I feel like an entirely different person; my heart has changed and so have my passions. Being able to sort through all of the ‘stuff’ – the emotions, the cognitions, the limiting beliefs, whatever else can be lurking in the depths of your psyche – has granted me the grace to find out more about who I am, what I want, and where I want to be. And this, along with the support provided, has given me the courage to take steps that I was always too scared to take, even if I somehow knew deep down I wanted to or should.

4. A Non-Biased Sounding Board. No personal motives, no connection to the people or places involved. No gain or loss from the results. A person whose pure purpose is to help YOU make the decisions and take the actions that will create a better life for YOU. Don’t underestimate its power.

5. Gratitude. I know, it sounds completely ridiculous. How could someone possibly be grateful for a chronic illness that almost destroyed them physically, mentally, spiritually and emotionally? In my own experience, it really has happened though. I didn’t have a ‘perfect’ life prior to my illness. Sure it took a while (and numerous occasions where I felt like I was being plagued by some form of mental illness), but eventually I was able to cope a little more with the grief of having lost all I had and to actually say “Well, why was it so wonderful? What was it that made it so great that I miss it so much, and how can I recreate those bits that I love?”. [You may insert the lightbulb moment here]. Ping! Light flicks on! Life wasn’t all that grand and amazing – the pain is at having lost what I DID have – fair call. But then I realized, that starting from scratch didn’t necessarily have to be a bad thing either. Sure it’s not easy, and sometimes I just wish none of this ever happened, but I was also presented with an opportunity to assess my life and decide what I liked and what I didn’t like about it. I could find a way to reestablish what I did like, and work on ways to improve or change what I didn’t like. Perhaps its total measure will be of greater value than the total measure of suffering I’ll have endured when I come out of the other end of this illness.  

You might say that you could achieve all of this on your own – and you may very well be right. For me, I don’t think I could have gotten as far as I have alone. At least not to the extent I have managed thus far. Each to their own. But I maintain that, for me personally, the decision to seek and continue therapy has been a very strong player on my team. Perhaps the strongest. The fact that it has not directly made me physically better is of little consideration. The fact that it has given me the emotional support to cope is its true value. And that leaks into other areas of your life aswell.

Hang tight for My #2 DifferenceM@ker, coming soon.

Welcome to DifferenceM@kers

So, I have toyed with the idea of blogging for some time now. It has been one of those things that I considered would be fun to do, but which I was not in a position to make a priority in my life.  And there’s a reason for that.

Three and a half years ago,  I was diagnosed with CFS/ME, and it turned my life upside down. Everything I knew and everything I believed about myself changed, literally overnight. I was no elite athlete, nor did I lead a perfect life, but I was pretty healthy and pretty happy.

After 8 months of trying to keep going, trying to keep pushing, working 2 days and being ill for 2 weeks thereafter – and trying to survive like this – I just couldn’t do it anymore. I lost my savings, trying to cover financially for what I could no longer work. I lost trust from my students and co-workers that I could be relied upon, to be there and to be “functioning”. I lost many of my friends – friends who couldn’t see or accept that I was on a downward spiral for which I had very little control, and that I could no longer keep up the activities and commitments I had previously taken on. But worse than any of that – I lost my hope. I lost my hope that things would ever get better for me, that I would ever regain my health, that I would ever “live” again, in the broader sense.

This blog will focus on “life” – everything in life – because that’s what having a chronic illness affects… everything. But in some ways, this is a different approach. Generally I find there are two main approaches to chronic illness:

     1. The literal view – By this I mean focusing on “survival”.

     2. The philosophical view – Trying to see everything metaphorically.

I believe that both of these approaches are merely ways of coping. And I too have taken each of those paths at various stages throughout my experience with CFS/ME. But the view I have chosen to take is what I call the “whole” view. Parts of it are literal, parts are philosophical, practical, reflective… and who is to know what other direction. However, the whole aim is to MOVE FORWARD.

We have to face the hard, cold reality. Some people recover from CFS/ME (or any other chronic illness), some do not. Some can manage it and lead a somewhat ‘normal’ life, some are not so lucky. Regardless of where you lay on that continuum, you suffer in your own way. It’s not easy to live with a chronic illness. Nor is it easy to have people, in their attempts to ‘help’ you, tell you that others have it worse. Suffering is suffering, no matter the degree. Just because one is in a worse position than you, doesn’t mean that you don’t feel pain, and you don’t suffer.  Your greater purpose though, has to become creating a wonderful life REGARDLESS of the adversity you face.

It’s so important that we all get to that point where we stop seeing only the suffering, and we find a way to etch out a new path in life – one that uses what we have to it’s maximum – no matter how little or how much we actually have. I’ve found one of the keys to “getting through” to be finding a purpose. Finding meaning in my life. Finding myself, and finding what it is that really makes me happy, and focusing on those things. It’s been a rough ride – and I’m still continuing along that bumpy old track (are we ever done?) – but slowly I’m learning more about myself, my illness, and how to deal with it in a way that allows me to progress in my life. I am rebuilding my life – right from the foundations. And I’m planning on creating solid foundations; foundations that will support me if – God forbid – I find myself spiraling downward again into the mess and haze that is a relapse in CFS/ME.

My hope is that by sharing my experiences, somebody out there will find even the smallest amount of comfort in knowing that somebody understands what they are experiencing. I also hope that by sharing in this blog, somebody may find that little spark again and be able to refocus and create a great life for themselves, despite their chronic illness.

Am I recovered? No. Is my life perfect? Nope. But I’m doing what I can, and I’m slowly learning that great things can still be available to me – it’s just my approach that will differ! I hope that in some way, my blog becomes a place of love and support in the darkness of  your suffering, and inspires you to step into the light of a better day!