It's Not Always So Complicated (Even Though We Think It Is)...

I've had a tough few days - the culminating result of doing a little too much somewhere along the line. Two nights ago I woke up at approximately 12 am, covered in sweat and burning up. I haven’t had a night of fevers in quite a while – and this was one of the most prominent features of my CFS/ME symptoms in the early days. It scared me somewhat, as it's almost an instantaneous reaction to think that you're going to end up right back where you were in your worst moments. Like most of you, my worst CFS/ME times are not ones that I would like to relive... ever.

I suppose what scares me the most about it, is that – at least at the moment – I feel okay. I mean, the headaches are back, the heavy limbs, the unrefreshing sleep, the night time fevers and sweats, the ‘tingling’ in my body, and today, a little of that inflamed feeling I mentioned in an earlier post. But I still consider myself okay. Is that because I’m used to these types of symptoms and have hardened up to them, or is it because they’re not that bad? I haven’t felt like I’ve pushed myself too far – so my question to myself is, am I pushing too hard and not even recognizing it because I’ve become accustomed to the CFS/ME symptoms?

I did as I had planned. I stayed in bed. I didn’t exercise. I tried to chill out. It was a long, boring day. And it didn’t help my spirits very much.  The following day, I could feel my spirit wavering as I began to acknowledge that just one day was not going to make this go away – I was kidding myself. 

The thing about times like these, is that they are often a time for reflection. We begin to think about what went wrong, and what we need to do to make it better. It's almost like a forced recalculation on a flight path. And this is something that everyone should be doing on a regular basis, but it's easy in our everyday lives to forget about it, and to forget its significance.

So there I sat in my bed once again, with my breakfast of boiled eggs and gluten free toast, and a teacup of green tea with jasmine… two reference books and a laptop at my side… waiting for my aha moment, my revelation, to hit me. I exhausted myself thinking, and then finally - when I felt like my brain was jelly and was considering going to sleep for a bit - I understood. It was but a whisper in my mind, so quiet that I couldn't have possibly heard it for all my 'thinking'. 

So what did I learn from this? 

Sometimes the answers don't come from indepth, emotionally & cognitively draining contemplation - sometimes they're not as complicated as we tend to think they are. Sometimes you just have to be quiet and the answer will come to you. We try so hard to seek answers all the time - to know all the why's, and all the how's... 

What I believe is my 'answer', was so much more simple, and so much less draining. You see, I sat there, driving my way through my schedule, thinking about every action, every meeting, every bit of work or play that I had participated in. I analysed it over and over, looking for that moment that I could pinpoint as being the cause of my minor relapse. And by doing that - by getting so caught up in the minutia of my days - I completely missed the bigger picture. Just before I fell asleep, my final thought was "it was all too much". 

I woke up a good couple of hours later, having had time to digest this in my sleep. I asked myself "what does that even mean? I mean... duh!... of course I did too much!"... [insert the type of silence that would allow you to hear a pin drop]. It was that simple. It was all too much. It was't that any one activity had been too demanding, or that I overdid any one activity. It was that the culmination of what I had done was too much in and of itself. Between work, holiday goals that I had, trying to catch up with friends, preparing for an upcoming trip, getting myself organised and ready for the upcoming new semester, spending a lot of time with my beautiful Godchildren... it was all just simply too much in sheer quantity. 

My usual self-assigned "Offline Days" (which I will explain in a future post) had fallen to the wayside, and whilst I was balancing physical activity and physical rest, the volume of work I felt I had to get done meant that those physical rests were rarely mental rests. Notice I said "the volume of work I felt I had to get done"? My list for my holiday break from university is pathetic. It has 24 items, ranging from washing the car to complete reorganisation of my home, to technology 'clean ups'. And although I told myself I wasn't forcing myself to do all of them, it was just a 'desire' list, I had actually been doing all I could to power through it and get as much of it done as possible. In fact, I'd managed to complete 16 of those items. Then go ahead and add the fact that I'd embarked on an exercise regime.

Sounds ridiculous doesn't it? I've read so much recently on using your time to the best that you can - not necessarily filling it up entirely so that you burn out, but doing things with your time that mean something to you, and will give you a sense of satisfaction. The whole point of this train of thought, is that people have more time available to do the things they want than they actually realise. Nobody should really be saying "I don't have time for that".

One of the activities involved looking at your week in terms of hours, and then dedicating set hours to each activity that you felt deserved your precious time. And here's where I failed. I allowed a decent amount of hours to sleep, and then I assigned times to each of my personally qualified activities (study, some form of exercise, cooking/housework, work, reading for enjoyment, spending time with family/friends, etc). But what I didn't do, was think about the fact that, even though I'd allocated ample time to perform/complete the activity... I still need my downtime... and I still have to account for a slower pace than the average person. 

As an example, as part of my 168 hours, I allotted 35 hours per week to my studies, which is all well and good... EXCEPT 35 hours is what I realistically need to keep up with the demands of university - that's the amount of WORKING TIME I need. What I failed to consider, is that I can't just sit down for 35 hours in the week. I will need rest breaks (even for short study sessions of 2 hours). Taking this into consideration, my 35 hours, should realistically be somewhere around 44 hours (giving myself a 30 min break for every 2 hours of study). My hopeful 2 hours of weekly exercise (30 mins x 3-4) needs to be assigned probably an extra hour for each session in order to allow me ample rest. All of a sudden, my mere 2 hour allotment  becomes more realistically 6 hours. It's with this realisation that I can now see the pressure that I've put myself under, and it's reasonable to conclude that this could very well be the underlying cause of my recent downturn (of course with other factors involved aswell).

So, I ask, how often do you reflect on your life, your actions, your plans and how they impact on your CFS/ME or other chronic illness management? Is it time to take a closer look?

Do You Hear What I Hear?

Life living on a fine line is not really much fun. As I’ve mentioned, I will forever be grateful for the incredible strides I have made in my health – in terms of recovery, I have made steps that even I didn’t think would be possible again.

But every now and then I am reminded that I am still far from recovered, and that I have to continue to be careful and to monitor my health carefully. This morning I woke up with the first tell-tale sign that things are not going according to MY plans… the feeling that you didn’t sleep. I hate that feeling, but it’s one of those experiences that it probably pays to remember. It’s not as severe today as compared to previous times, I’m ok – but there is a marked difference between how I have been feeling and how I feel today.

We tend to question why when something like this happens. That’s natural, and in my opinion – when you have CFS/ME – necessary. In the last 3-4 weeks, I’ve begun integrating exercise and general activity back into my life. I haven’t been able to do this for the last 3.5 years, so I’ve been taking advantage of the opportunity, and working hard to re-establish some positive, healthy habits into my day-to-day life. Unfortunately, old habits die hard – and even with my careful approach, I may have allowed myself to overdo it.

Now, when I say “overdo it”, I am not saying that I have completely crashed. Over the years I have become very attuned to my body and can notice the slightest changes. So whilst I don’t feel very well today, I am grateful that I can recognize it and step into action NOW to avoid a crash later. What I do notice are the following signs:

* Yesterday I woke up with a searing headache. I had to take pain killers and go back to sleep in order to get rid of it

* I felt on edge, stressed and ‘frazzled’ yesterday, like my nerves were tingling all through my body. This included having a panic attack, and having a very short temper

* Today I woke up feeling unrefreshed from my sleep, even though I know I had enough. When I checked my stats from my Jawbone UP, it appears I had a very large percentage of light sleep and very little deep sleep. I recall reading that this is a common problem for people with CFS/ME.

* My inner ‘thermostat’ is feeling a little haywire – that feeling between cold and a fever – like your body doesn’t know which way to go

* Some nausea and generally feeling ‘unwell’ has returned

* I have some returned heaviness to my limbs, beyond the normal exercising reactions. I especially notice this when my arms become heavy & tired.

Because of the stress/nerves yesterday, I decided (even though I hadn’t planned on it) to go for a walk. I didn’t push, it was more a stroll, and I only went as far as I felt like – even stopping short of my usual distance. I thought, at the time, that it was just a low intensity walk, not for the purposes of exercise… (which in hindsight, is essentially how you would classify ALL of my ‘workouts’ at the moment – but I’d justified it that way in my head), and that the fresh air and sunshine would do me good.  But I can see now, that I was clearly ignoring markers that my body gave me – a message telling me to take it easy. Thank God I’ve picked up on it before things get worse and I do more damage!

You see, I’ve found that every day with CFS/ME is kind of a learning curve. Just when you think you’ve got it covered, something happens, or something appears or reappears that changes it all up on you. It stinks, but that’s how it is. I’m on a learning curve right now. I recently (in the last 4-6 weeks) felt like I could handle some form of regular exercise again. Not strenuous, but still… consistent. This is a big change from the past 3 years of nothing. Occasionally I’d try to pull out a walk and end up in bed for 2-3 days afterwards. This felt different. I left it for a couple of weeks, trying to figure out whether it was right, or whether it was just a short-lived stint of more energy. 3.5 weeks ago, I decided to give it a go and start integrating movement and exercise back into my life. My plan looks something like this:

* Once a week, I have been trying to up the intensity slightly by doing some short intervals of a jog (more like a power walk). This is roughly 20-60 seconds of higher intensity (depending on my energy level) followed by 2-3 minutes of low intensity/recovery. I’ve found on average I can manage this interval 3-6 times in the session before I call it a day (6 times has been my record, 3 the worst).

* I have been aiming to go 2-3 more times on top of this (a total of 3-4 sessions per week), just walking, and purely at a pace and for a length of time that suits me on the day. Sometimes it has been 15-20 minutes, a few times it has been 45 minutes. The pace is ridiculously slow, but my focus is on the habit and the consistency.

* I try to take 1 day between these workouts at least.

* In general, I just try to be a little more active in my day-to-day life – not so much sitting or laying and trying to add little bits of movement in. I have become quite sedentary over time.

In normal circumstances, I probably would have started with a goal of 1-2 sessions consistently. I suppose at the moment 2 sessions is my “base line”. I would be ok with not doing the 3^rd or 4^th sessions if my health so called for it. But I’ve been lucky enough that my feeling well has coincided with a 4 week break from university study – and I wanted to take advantage of that opportunity. This has given me a lot more time – to establish those sessions and rest accordingly afterward. It has really worked in my favour to do it this way.

So, what do I do now? It’s a good question, for which I can only guess the answer (and then use the trial and error method to see if I’m right). But right now, my initial plan is this…

·      I have assigned today as what I call a “bed day”. I can achieve the things that need to be done via my bed. The other stuff will have to wait. Perhaps this afternoon I will do a short errand run for the most urgent stuff, if it can’t possibly wait – but ultimately I think it will be ok (and I feel like I should refuse to go on errands merely to make this point to myself!). I have some work related paperwork to do, which I’ll do in small chunks between resting.

·      Some essential oils, some Epsom salts, a candle and a bath… throw on some relaxing music, and maybe a book to read… for me it’s all about creating that environment and space of time where my nerves can relax.

·      I won’t be exercising today – which I feel ho-hum about. I actually WANT to exercise. I have asked myself why I want to and come up with a few different reasons. Some of them – like being active and improving my fitness, and meeting my old attitudes, beliefs and expectations – will have to be put aside for today (& dealt with later!). Others – like fresh air and sunshine – can be achieved in other ways. After my soak later today, I think I’ll go sit outside in the fresh air for a bit. I can still get air and sunshine sitting.

·      Continue eating lots of healthy, fresh foods and avoiding sugar. Also eating meals that are not too heavy and taxing on my system.

So basically, I’m just gonna chill. Take a step back, relax, not stress, get some good rest, and see if I can reverse some of the damage (or at least minimize it) that I’ve managed to do by not listening to my body.

My next question is, what’s your body telling you right now? And are you listening?

My #2 DifferenceM@ker

Thank you for finding your way back to my blog J I sincerely hope that you are enjoying my posts, and I welcome your thoughts and contributions!

In my last post, I talked about the impact I felt therapy had for me personally in my journey along the shadowy paths of CFS/ME. I realize that I chose to touch on one of the touchiest topics in the CFS/ME world straight up – but I did so with honesty and sincerity. We all deserve a better life than what CFS/ME offers, and if the same treatment route is able to help even one other person to gain back a little of their territory, then I will be eternally grateful for the opportunity to express my thoughts.

Without wasting too much time, I wanted to get into details of what I feel has been the #2 DifferenceM@ker in my CFS/ME recovery journey…

My #2 DifferenceM@ker – Gluten/Dairy Free. It was a slow and gradual journey which turned me towards focusing on my dietary options, and to be honest, the reasons I have chosen this lifestyle now goes far beyond what I imagined it would at first. Firstly, if I look back I can see that I always had some problems – specifically with highly processed foods like breads and full cream dairy products. I tended to avoid them about 60-70% of the time purely because they were uncomfortable for me, but I never really paid too much attention to it.

Along with my CFS symptoms, I was consistently experiencing gut troubles and felt a tremendous amount of pain and inflammation in my body. I had frequent fevers, and my body often felt swollen and ‘hot’ on the inside. I apologise if that doesn’t make any sense, but it’s the best words I can put to it. Some days the pain would be to a degree that I felt barely able to move, and I would be teary at even trying to walk or turn my head. It was a truly awful, debilitating feeling that persisted for months on end. I was at a point where I was reliant upon painkillers every day – and even then it didn’t remove the pain, it just made it barely tolerable. I had resigned myself to the fact that I would always feel that awful, that it was my ‘lot’ in life - I highly doubt I will ever forget that feeling.

It was around this time that I began searching away on the internet to try to find a way to ‘treat’ my pain naturally. I did not like that I was reliant upon painkillers, and I did not want to continue on that path. My research led me to the Paleo diet. I won’t go into details of this diet in this post, but it was touted to be especially effective for those with autoimmune disorders and inflammation in the body. I was in enough agony on a daily basis to be willing to give it a try – after all, it couldn’t possibly get much worse in my mind.

I read up as much as I could and began to eliminate processed foods and dairy products. I chose not to go 100% hardcore (my personal experience is if you do this, you set yourself up for failure), but rather to stick to around an 80:20 ratio. In my eyes, there were very few times in my life that I could do things like go out and socialize with others and perhaps have dinner or a movie or something, or even a coffee date. There was no way I was going to limit those times by denying myself whatever I wanted at the time. Within 2 months, I was taking pain killers approximately ½ of the time I was prior to. Furthermore, after attending a social gathering and exposing myself to those foods again, I suffered so badly and saw the effect for days afterwards, that I was pretty much converted. I began planning to cut out processed foods and dairy 100%.

Sadly, Christmas crept up on me, and the lure of those once a year yummies like Christmas Pudding and Rum Balls, pulled me away from my Paleo efforts. I suffered for the month of Christmas – although I did still stick to probably around 60% Paleo, so the inflammation and pain remained slightly more manageable. It wasn’t until early in 2013 that I saw a new GP who suggested I be tested for Coeliac. I learnt that coeliac disease is on a sliding scale/continuum. I had always believed you either were near death from having gluten, or you weren’t coeliac. Apparently this is not true. Sure enough, I fit onto the sliding scale…

THE POINT OF THE LONG STORY… Once I began to adhere more strictly to a gluten and dairy free diet, I saw quite a significant change in my CFS/ME symptoms. It has been around 3-4 months, and I have just begun exercising once again. We’re not talking Olympic standard workouts – just regular, gentle exercise (I have been walking 3-4 times a week and once a week doing a short spell of very light jogs intervalled with recovery walking). But I’ve now maintained this for 3 weeks without crashing – a record! (former record = 1 session, then crash & burn). Taking painkillers is now an occasional thing, rather than the daily requirement it had come to be, I’m waking up a little better, getting a better quality sleep, and emotionally feeling a lot stronger. And of course, the sunshine, fresh air, and endorphins are helping to pick me up and keep me going on my pathway to greatness!

A word of warning with respect to exercise. We all know it, we’ve all heard it a thousand times before – that exercise has great benefits. It does. But I had SO many people, in their efforts to tell me what was wrong with me and how to get better, say “you just need to do some exercise and then you’ll feel better”. I can honestly say, with all the love and respect to those people that I can muster, that they have NO CLUE about CFS/ME. Pushing yourself beyond your limit does NOT give you the positive benefits – it pushes you down, likely for longer. Don’t listen to those people – accept their heart and intent of their message, but not their advice. If I’d taken the well-meaning advice of these people, I’d be crashing and burning and still sick like I was 3 years ago.

I’ve likened my recovery thus far to walking up a set of stairs. But each step has a little gate with a key. First you have to find the right key to open the gate and only THEN can you take the next step – and each step higher that you take creates a little ‘snowball effect’ that gives you enough to keep pressing through the next gate. For me (and I imagine for most CFS/ME sufferers), exercise is on a much higher step. There are more important things first. I had no idea that my diet (which I never considered to be ‘bad’ in the first place) was one of those steps, but I am so glad that found that key! Some other ‘steps’ on my staircase have included:

* emotional support – building it, and maintaining it

* self-development & self-discovery

* pacing

* sleep quality

* taming my perfectionistic side

* mastering more efficient ways to get things done

* reducing my stress, and my tendency to ACCEPT stress

* deciding what is important to me, and making wise decisions about my commitments

What about you? I’d love for you to share your thoughts and opinions J

To You In Good Health xx

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.