It’s been quite a while since I last posted here, as my continued recovery means I have more time and energy to engage in the life that I want, and less desire to talk about how hard recovering from CFS can be. But I get occasional emails from people who have been following this blog asking how I’m doing, so I thought it was time for an update.
My physical symptoms now resemble a fairly mild cold, and the occasional cough. I no longer push myself into stressful situations that make the cough worse, so it doesn’t bug me so much. I still feel a weird sort of tiredness with a background sense of anxiety that varies from mild to moderate. It’s kind of like the tiredness and the anxiety are playing some kind of dance. It might feel like I need a lie down, but going for a leisurely walk along the beach can work just as well. Other times, I really need the lie down and so I take it.
The other weird symptom I have is a tense feeling in my head, which moves around. Right now it’s in my upper jaw and temples. It’s not exactly painful; sometimes it’s just unpleasant, and other times I can be so engrossed in something I’m doing that I don’t notice it. Perhaps it’s boredom and truly disappears when I’m thoughtfully and physically engaged in some task. It seems to get stronger when I’m feeling angry, and turns into a debilitating headache when I’ve been overdoing things… which I take pains now not to do.
I’ve finally got the message through my thick skull that the way to enjoy life is not to be constantly pushing myself… it’s to let my body lead me towards things, if that makes any sense. This has taken a long time for me to learn to implement as I was so anxious about “missing out” on things if I didn’t push hard all the time. There’s some truth to it though; I have missed out on many things now that I’m not going like a bull at a gate all the time, but I’ve learned to let some past loves (like dancing, say) pretty much go entirely. So the missing out isn’t so painful any more.
Along these same lines, I’ve been studying the Taoist philosophy of effortless flow for a while now, and despite my moratorium on personal development courses, have recently taken up learning Tai Chi, which is based on this idea that when we’re in harmony with nature, work becomes effortless. I totally avoid cardio and weight-building exercises now; in other words, everything they do in a gym. I do physical activity that’s fun, like playing drums or body boarding (in summer, obviously!), or relaxing like walking or Tai Chi. As a result, I no longer get post-exertional malaise… except for the headaches when I stay out too late at night.
My strategy for recovering now is essentially to do what I enjoy the most in life, while avoiding negative emotional triggers. I think of it as “emotional pacing”. Most CFS management strategies advocate physical pacing, but I think pacing emotional energy is what is really important, keeping in mind that the two are intertwined: feeling ill all the time for years on end is emotionally triggering, and physical tiredness makes humans more irritable. If I don’t feel physically up to doing something, I just don’t do it; but if I actually feel anxious about it, I might. In other words, I might choose to push through anxiety, but I won’t push through physical exhaustion any more.
I still use a lot of what I learned from Mickel Therapy, even though I haven’t talked to my Mickel therapist in a few years. The further along I get, the more I’m convinced that it’s the best thing out there for CFS. It gets us to focus on what our body is needing, rather than what our ego or mind seems to think is best for us. Plus the assertiveness keys are a constant reminder to stand up to unfair treatment whenever it comes my way. And the concept of the “shit list” of outstanding things we “need” to do reminds me to never let outstanding tasks overwhelm me. One reason for this blog post is that it’s been on my TO-DO list for weeks, and that all contributes to unconscious stress. Of course life happens, so there is a constant stream of new things needing to be done every day, and nowadays I avoid overwhelm by knocking them off and not letting the list grow.
When I decided to move house last year, I took about 6 months to do everything I needed in order to rent my old property out. There was a huge number of tiny things that I didn’t really care about, but I knew my tenants would immediately flag. Plus I ended up re-carpeting, painting and replacing a crappy old built-in wardrobe. I managed the overwhelm by making a list and knocking one thing off each day. I can see looking back that I pushed myself way too hard during the final renovation because I was excited about moving to the beach, instead of just slipping the schedule. I wouldn’t do that if I had my time again; I’d put my body’s needs ahead of everything else and start things sooner.
My main challenge now is more emotional than physical. I still find I have tremendous mood swings that really throw my body around. In some ways perhaps they’re even getting more severe as my nervous system thaws out. I believe that for many years I repressed my anger, and unlocking this and my social anxiety too fast in therapy is probably why I got ill. I now realise that many times in the past when I had an unpleasant reaction to life circumstances that I couldn’t quite put my finger on, I was angry. I had numbed my anger, leading to deep feelings of powerlessness and anxiety.
Learning to accept on a daily basis that these feelings are OK, and will never entirely go away, is one of my current biggest challenges. I am an incredibly sensitive person and intense feelings can overwhelm me very easily. I still believe that the mood swings will dampen down a little more over time as I keep processing my emotional baggage, but lately I’ve been thinking that I might just have to accept that it’s never going to flat-line or be as easy to manage as before I had CFS. And to get that in context, I never found my emotions easy to manage back then either. On re-reading this, I know that if I told this to a GP or psychiatrist, they’d immediately prescribe me medication; which is why I don’t go any more. Call me crazy.
I got a bit hooked on the whole emotional healing thing over the past few years, doing virtually every known course and therapy on the planet. Even though this is good in principle, I suspect it might not be ideal for people with CFS. I have no solid scientific evidence to back up the following idea, but I suspect that releasing emotional energy from the amygdala can dump it into the hypothalamus, causing even greater physical sensations.
I lean more towards Mickel’s hypothalamus hypothesis than Gupta’s amygdala hypothesis these days, and I note that Mickel therapy doesn’t involve any digging into past trauma to release stored emotions. The Gupta program doesn’t really either, but I just can’t see how a problem purely in the amygdala can cause the weird-ass symptoms of CFS.
Given that there are lots of different components to the brain, perhaps what is good for one part isn’t so good for the other. I was always sceptical the medical establishment’s prescription of Cognitive Behavioural Therapy for CFS sufferers, since CBT doesn’t deal as intensely with emotions as some other forms of psychotherapy. But perhaps that’s a good thing if the aim is to avoid emotionally triggering situations so that a fired-up amygdala doesn’t overwhelm the hypothalamus.
Most forms of emotional release therapy deliberately trigger unpleasant emotions stored in the brain from earlier life events, in small doses that we can handle, in safe environments. Dissipating the emotional charge on old events from our past during therapy means that we don’t get so triggered when similar events happen during real life. But the tools of Mickel therapy might actually prevent the amygdala from firing up in the first place, or teach us to act to minimise the emotional impact of triggering events happening in the present day. It mightn’t heal the underlying emotional trauma, but once our physical health returns we have the rest of our life to try other forms of therapy.
Avoiding emotional triggers can be easily said than done. Boredom can be big trigger that I’ve talked about on this blog before. So is loneliness; and here’s the catch with that one: so is rejection and abandonment. For me, they’re huge. Spending time by myself triggers me, and attempting to spend time with other people massively triggers me if they don’t end up wanting to spend time with me.
My biggest abandonment trigger is romantic relationships with women, which I’ve pretty much been avoiding for the past year or more. But not pursuing relationships is like a self-imposed form of abandonment, which is also triggering. I had an email recently asking if I thought that dating was a good idea with CFS or not, and I responded saying that I honestly don’t know. I do think that the emotional support from a loving relationship would be excellent, and the physical intimacy and sex could be very healing too. I’ve always found the process of getting there very challenging though.
Recently I found myself in the painful situation of falling for a very good female friend of mine who also has CFS, and lives overseas. When she started dating another guy, all my core issue feelings of abandonment and rejection came screaming up at me: sadness, anger, grief, terror; and then more anger and sadness. And then more grief. And terror. And anger. You get the idea. I knew that I really liked her, but I didn’t realise how intense my feelings were until I heard that she was dating someone else. My headache got worse, my body started shaking, I cried heaps. The pain still feels unbearable. I told her how I felt, and now she feels terrible too. This morning I came across Pablo Neruda’s poem The Saddest Poem, and I so related to its words that I just cried and cried.
Lately I’ve been stepping up socially and getting out a lot more, with both friends and potential romantic partners. I’m convinced that more social interaction is a good thing. I generally don’t find it tiring, which is interesting. Mind you, I’m careful not to go too crazy with it. Late last year I moved to Bondi, which is a hip beach-side suburb with heaps of Chai Latte drinking hipsters in cafes, so it’s now relatively ease to invite existing friends, and potential new ones, to come visit me. Even if the old belief that people don’t really want to spend time with me persists deep down in my unconscious, I can convince myself that they’d enjoy coming to Bondi anyway. If it’s good enough for the European backpackers…
Stepping up has meant a lot more acceptance, and a lot more rejection. I went to Kirtan a few weeks ago in search of a greater sense of community, and befriended the leader. We now get together to play rock songs; me on my drums, and him on guitar. Learning to play drums was a genius stroke for me; it’s fun, engaging, and hard to overdo when you first learn. It also means I can now jam with other musos, which gives me more social contact and just plain feels good. On the down side, I’ve had a few knock-backs on my come-drink-coffee offers, and some acting auditions. My big dream is still to become a comedian, and navigating how to do that at the moment given my health constraints is very challenging. I hope that down the track, as the symptoms continue to subside, I’ll feel more inspired. My current goal is to win the 2016 Raw Comedy contest, and one of rules is that you can’t have earned more than $500 from stand-up comedy gigs. That part will be easy if I haven’t done any paid gigs between now and February 2016!
The other big thing over the last few months has been calling a halt to the relationship with my mother. I have always been very triggered by the way my mother treats my father, his passive enabling response, and their resulting arguments. Although I haven’t lived with them for 24 years or so now, it’s still very triggering when I’m around them. In fact, just being around my mother is terrifying for my inner child. Over the last couple of years, I’ve woken up with a bad headache 3 out of 4 times that I had arranged to meet my mother for lunch, and on a family weekend away last year my migraines returned after spending 3 days with my parents.
I believe this is my body telling me that I don’t actually feel safe around my parents, so I finally stood up to my critical mother and told them I wanted their behaviour to stop. My headache just got worse typing this paragraph by the way, so I’ll summarise by saying that I’ve requested that we introduce a new set of ground rules based on mutual respect into the relationships between myself and each of my parents. My father agreed, and our relationship now feels much stronger than before. My mother has declined, and so I’ve cut all contact with her until she’s ready to have a relationship based on mutual respect. The flow-on effect to my relationships with my sisters has been positive, but also extremely challenging. Initiating this change, and sticking to my guns on its importance, has been by far the most frightening thing I’ve ever done.
My body is telling me to move right now, and it’s been an epic update anyway so I’m going to leave it there for now. I believe it is possible to recover from Chronic Fatigue Syndrome, even though I’m not quite there yet. In fact, I think recovery is inevitable once change some limiting beliefs, like the beliefs that it’s a really terrible thing and is very hard to recover from, and start listening to your body and giving it what it needs. It just takes time. Like all good things.
Thanks for listening, it means heaps to me that somebody out there reads this and might even benefit from it. Long, deep, nervous-system-healing hugs to you all.