“Pain is inevitable, suffering is optional”
So said someone terribly Zen-like (no-one seems to know or agree quite who).
This was a bitter pill for me to try and swallow this month when things in my health story took a turn for the worst.
I was already living in a way that I had not entertained, eaten out or done much resembling fun in several months (accept a work trip to England that became a lesson in why to never take your chronic illnesses on holiday with you). I was living in a way that I was afraid to go to sleep, wake up, sometimes even leave the house, or plan anything at any point in the near future, as I never knew when horrible symptoms would sneak up on me.
Then it got worse ….over less than three weeks I have had; a hospital visit with tachycardia (crazy fast heart, tests to follow to see if it is benign or not), a 10 day flare of Interstitial Cystitis (painful bladder syndrome) which came with pain that is difficult to describe, several horrible IBS attacks, a four-hour panic attack (I know technically that isn’t really possible, your body is only supposed to cope with 10 minutes or so, my body is amazing), and to top it all off fecal impaction (a terrifying and unpleasant first for me).
I don’t need to say how the rest of my illnesses are not enjoying the treatment for that!
Needless to say it has been pretty difficult to see suffering as optional. Somewhere along the way, somewhere among the pain and misery that was each shiny new moment, I cracked.
I actually started to wonder what a nervous breakdown really was or how it looked, because I thought I could see one in the mirror; in the sad and pale 40 something with less than 18% body fat (yes the athlete zone, but not in a good way). However, my crack was not a nervous breakdown kind of crack. It was a funny paradoxical thing where I cracked through something. Where I just ran out of pain and negativity, where I just quit all the internal agony and fear.
I started a book on pelvic pain (review to follow, after I have put it to the test). This book started with a contract with yourself to sign, and a poem of sorts from the Author. The gist of it being the importance of the mind part in mind/body, of the belief in yourself and your future and your ability to improve. Of course, I know this stuff. The role of mindset in healing is true whether you are looking to scientific evidence, or channeling your inner power of attraction goddess with a variety or herbs, oils and mantras at the new moon.
They say ‘seeing is believing’. I say ‘feeling is believing’. When I broke-through, or down or whatever this thing was this week …. I decided I had to start believing that things would get better. It was too much to hope I might be miraculously healed, so instead I focused on that things would get better even if temporarily sometime soon. My symptoms are never static, they roll and change, and sometimes even if it is only for a few minutes they ease, sometimes a few hours, and just occasionally (like just before the latest horror began) for a day or two.
The worst for me was going backwards in symptom presentation, even worse: new symptoms. This last three weeks has been a riot of this stuff. Slipping back or down is the worst emotional pain. Because three crap days in a row is oddly sometimes preferred to good followed by crap.
I remember a piece of research a professor talked about way back when I was young and doing my Masters. It went something like this: if you could measure happiness in units, and you gave someone $100 it would give them, let’s say four units of happiness. Conversely, if you took $100 from them they would lose about six units. It is not just me, it is humans.
Negatives are stronger and more powerful to us in many ways. Although my humanity and our joint evolution story makes sense of my suffering when symptoms slip backwards. It isn’t helpful.
Was my breakthrough this week the Winston Churchill quote (in the title) on my twitter feed, the poem from the Pelvic pain specialist? Maybe just the sheer exhaustion of the battle, maybe I could not even manage any more negativity, maybe negativity runs out the way positivity does, it just has a much higher bar.
I can’t really pinpoint what happened. Either way, something moved. So the next ‘attack’ was different. By ‘attack’. I mean a sudden onset of strong, unpleasant symptoms, that leave you feeling dreadful and totally unable to function. Usually, an attack comes with a super spiral of negative thinking, often with a panic attack to boot. It’s hard to put into words, or remember or catch because there is so much going on. I reckon it’s a little like this: “why me”, “why now”, “it’s not fair”, “I can’t cope”, “It might be serious this time, maybe I’m dying”.
I am still having regular attacks sometimes multiple times a day. They are still not fun. However, the process in my mind could not be more different. More like “I can handle this”, “This too shall pass”, “I’ll get a break soon, I know it”. I have not tested this new way on a full-blown panic attack. I am not sure how that would go.
Perhaps the bigger breakthrough I have had this week is being nice to myself. I am a funny paradox; I am horrible to myself, judgemental, critical and controlling – yet on another level, I’m OK with who I am, I don’t much (I am human after all) need affirmation or to be liked by others. I know that makes the blogging seem a little odd, but it’s a therapy for me and my two readers.
I do desperately need to be nicer to myself, to cut myself some slack. To move through some anger, at me, the world and those poor buggers who come to close to me (usually the ones I love the most, but just occasionally some poor customer service person).
This week I realised (or maybe chose to finally believe) that I was doing all that I can, that I was doing my best. Maybe it is the affirmations I have built into my daily practices from the Four Agreements. I had understood that affirmations were not proven. I had understood it pisses your mind off a bit to be saying stuff over and over again that is blatantly untrue. “I am love, light and healing” when clearly I am a sick, dark cloud that would like to kill some people and bury them in the garden to get them to just shut the hell up … argh.
Despite my affirmation misgivings – here I am breathing in (relaxing my pelvic floor in a reverse Kegel) for 5.5 seconds, and out for 5.5 with my affirmations, one for each out breath and repeat:
“I am impeccable with my word”
“I nurture my mind and body, I allow healing now”
“I am doing my best”
“I am present and free”
To trust and believe that I am doing all I can, is profound for me. Normally I have a great list of things I notice I am not doing and could/should be doing. I am still drinking a little wine, or I am not meditating hard enough or long enough or well enough or eating enough vegetables or exercise, or decluttering my space, or or or or ….
This week I could see the facts for once. I am meditating (at times several hours a day and through the night if I am bed-bound and unable to do little else; including sleep). I am managing an insanely limited diet (no complex carbs, no gluten, no sugar, no caffeine, no meat and much more). I am having only a few glasses of wine a week, rather than the few per night I prefer. I am doing intense pelvic floor rehab. I am spending hours and hours per week researching and reading on my illnesses.
I am doing my best. The other thing that has shifted, quite miraculously is that I am less angry at the world and others. I am more loving to my family. Another age-old adage of needing to ‘love yourself to love others’ is becoming felt in my life. I think it’s a bit more complex than that as I don’t feel we fit into two neat groups “the self-lovers” and “the self-haters”. We are more spectrum like and the spectrum is multidimensional and can move with the wind. However, at any point in time most of us can move further towards self-love feelings and self-love behaviours. In this move of my self-love feelings and behaviours for me this week, my family have felt more towards them also.
Another breakthrough is simply being able to chant “I am present and free” without wanting to scream “bugger off idiot, I am stuck in bed again with no life again”. If Viktor Frankl could feel free in a Nazi prisoner of war camp, surely a plush bed in a middle-class suburb of Australia is doable?
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.” —Viktor Frankl
My next challenge is instead of just trusting I can manage each day, and get through to the next good patch (be it minutes or days)…I need to work up trusting that I will get better overall, that I will get my beautiful life back one day. This bit is harder as the recent evidence is pointing in the direction of sicker.
I’d love to hear what has worked for others. I have read so much and tried so much and so, so much has failed. There is yet another cliché coming to pass; the idea that it isn’t how often we fall down but how much we get up that makes us.
Right I am now going to go and do some detailed food planning/cooking as just one day of “I can’t be arsed planning food” results in weight loss as yesterday did.
Meanwhile go kindly and with love in the direction of your dreams,
Yours with love,