Counting blessings

I spend a lot of time wishing things were different... "If only I had enough energy to go to that event" or "If only I could get back to work" - constantly reminding myself of those things I'm not achieving or missing out on. What a waste of energy! I made a decision yesterday, after a Buddhist friend reminded me to focus on what I do have, to do just that! If I can spend a little time, each day, acknowledging those things in my life that I feel positive about, then perhaps I can coax myself out of this "if only" rut.

So (deep breath), here goes... a list of all those things I am glad about/things that enrich my life:

- My wonderful family. Illness has brought us closer together and enabled me to ask for support.
- My Buddhist practice, which allows me to connect to people and concepts outside of my limited self.
- My lovely house and supportive housemates. Getting the wood-burning stove going in the evenings and  sitting around chatting inanely.
- My recently rediscovered love of blogging.
- My increased empathy for those experiencing illness.
- Time alone, to be by myself.
- This opportunity to rekindle old friendships.

We have a tendency, as human beings, to assume that our happiness is dependent on certain conditions being fulfilled. Thinking along the lines of, "Life will be better when I get my finances sorted" or, "Once I've found the right partner and settled down everything will fall in to place". This kind of thinking is dangerous - supposing that our current circumstances are the problem and whilst things continue as they are then we can't possibly even think about being happy. There's a misconception that if you decide to be happy even in the midst of imperfection, then you are "settling" or "selling yourself short" or "giving up". This is ludicrous! You can be happy where you are and simultaneously aware of those things you'd like to change - they are not mutually exclusive. We are complex beings, capable of balancing seemingly contradictory thoughts. Of course I would like to increase my activity tolerance and decrease my fatigue, but I am aware that it will take time to effect change - that doesn't mean that I have to be miserable in the meantime! The trick is not to get too attached, either to our success or to our suffering. Remaining open to change whilst at the same time feeling gratitude in the moment. It's so easy to slip in to the trap of getting comfortable in a certain situation. For example, once I start getting in to a routine that works for me and which enables me to reduce symptoms of fatigue, then I can easily get fixated on the combination and order of daily tasks as if they represent a magic formula which, if deviated from, would cause a downward spiral in to fatigue-hell. It is impossible to remain static, and life has a habit of throwing all manner of unexpected curve-balls at you, just when you feel you've got everything the way you want it. It's a difficult balance to achieve, but not impossible - to be able to work towards improving your circumstances whilst accepting that some factors remain out of your control, and enjoy the process - this is what I call success.

I'm finding it difficult to continue writing as, truth is, I'm feeling very low today - energy-wise as well as emotionally (the two usually go hand in hand). I had a busy (well busy for me) day yesterday starting with fatigue assessment by occupational therapist who was thankfully able to come to me for the appointment; followed by some tests at hospital to investigate Raynaud's which has been getting worse due to cold weather; and ending with Buddhist discussion meeting (which I was overjoyed to find myself at despite assuming I wouldn't manage it). I also said goodbye to my Mum yesterday as she returned to Spain early this morning - so early that I couldn't wave her off.

It's been strange but not unpleasant to have my solitude back. It always takes a while to get used to it again. I'm not sure whether I feel sad or just over-tired from busy past few days...

Anniversary

As I write this I can see beautiful dusky pink clouds migrating across the early evening sky. November is a truly wondrous month. And today, the eighteenth is a particularly auspicious day in the lay Buddhist organisation of which I am a member. It is the anniversary of the founding of our movement, which took place in 1930, Japan. Another troubled night's sleep shocked me awake in the wee hours of this morning, and it struck me - I'm having these terrifying nightmares right now at the cusp of this momentous day. In Buddhism, it is believed that when one is practicing as the Buddha taught, then they will find themselves assailed by negativity. As long as we hold firm to our beliefs and remind ourselves that encountering difficulties in life is a sign of progress in terms of faith. My life must certainly be moving forward as I seem to be encountering nothing but obstacles! Strangely, once I reminded myself of this principle, I was able to experience deep joy even though moments earlier I had been in the grip of the most frightening sleep-paralysis. This is not a phenomenon that I regularly suffer from. It has happened only once before and I hope it never happens again - but I'm confident that if it does I will know how to deal with it. I feel like the old cast, made out of fear, has been broken - revealing my true, courageous self. Surely there is no greater benefit? I have been chanting for many things, not least for my health situation to improve, and I had my heart set on this date as a target for when I wanted to see change. My life may not look any different from the outside (I'm still spending the majority of my time in bed and having to rest after simply getting dressed or making breakfast); but from my inner perspective I can see that a fundamental transformation has occurred. Just like the unpleasant dreams, the workings of our internal landscape are invisible but nevertheless hugely influential to our well-being. Another thought that struck me this morning was that I have actually achieved something that only three months ago I hadn't imagined possible. I ended my relationship which had represented my main support/safety net throughout two years of treatment and recovery. The fear that I had to face even just contemplating living alone threw me in to the darkest despair I've ever known. It was the scariest decision to make and yet has been the cause for my spiritual regeneration - this time on my own has proven to be most valuable in terms of emotional healing. It might sound strange, but I can finally say with conviction that I am grateful for all the pain and suffering I've experienced these past months. I feel free now, like I've been released from a self-imposed prison plagued by doubt and anxiety. Of course I will feel these emotions again, and will face even greater challenges in the future, but I feel better equipped to deal with them. I have the resources to lessen the amount of time spent dwelling in those negative spaces.

There are concrete, visible achievements that are beginning to manifest as well. On Thursday I have an appointment with an occupational therapist who specializes in fatigue and is going to help me devise a management programme in order to slowly start building up energy levels; I have successfully moved back in to my shared house and am looking toward living independently once again (as my Mum, who has been supporting me this past week, will be returning to Spain soon); and I've also noticed an improvement in my social life. I feel less alone than when I started this blog (only a month ago) and have come to realise that I need to make constant efforts to maintain friendships - I haven't been forgotten; people are just busy/preoccupied.

I cannot help but think that it's no coincidence that I am now in my eighth year of practicing - the number eight, in Buddhism, means "to open" and is also synonymous with the symbol for eternity. The significance of this year is dawning on me, each day proffering even greater opportunity for self-discovery...exciting times!

Back to reality

Next week; the weekend; tomorrow; even later today feels like thinking too far ahead. I seem to be suffering from an inability to contemplate anything outside of what I can see/hear/smell/taste/feel right at this very moment. Some would say this is a blessing in disguise; a convenient shortcut to mindfulness - a zen-like state of being which would take most people years to attain... Doesn't feel so enlightening when there are decisions to be made, and important ones at that, along the lines of...Where am I going to live? and with whom? My current, temporary situation (staying in my aunt and uncle's house) is coming to a perilous end as their prospective lodger is set to move in on Monday (3 days time) and I'm pretty sure he wouldn't be best pleased to find me tucked up in his bed with my snotty tissues everywhere and empty pill packets strewn over the floor (let's just say that cleaning and tidying has not been my priority these past weeks). So, assuming he is still coming to live here in this, what I now feel to be my room/sanctuary/hide-out, then I need to get focused and work out my next move tout suite!

...

Now, three days after writing the above, I find myself back in my room in the shared house (which was always available for me to return to). I was so afraid, before, that moving out of the safety of my aunt and uncle's house would spell disaster for me heath-wise and would surely precipitate another fatigue set-back. Surprisingly, the move has been mostly a positive one. I'm enjoying being in my own space again, and having my buddhist altar and gohonzon (inscribed scroll) to chant in front of. My housemates, the ones I've seen anyway, have been thoroughly supportive and seem pleased to have me back. I remain cautious as it always takes a few days, or even a week, to determine whether a shift has been beneficial or detrimental to my health. When the dust has settled, and I feel that I've regained some semblance of balance, I will be able to survey my situation and decide how best to proceed. The scenario described above, of living moment-to-moment for lack of energy to think further ahead, persists - though now I am able to embrace it. Perhaps because I am back in my territory and without any imminent threat of eviction, the hours of quiet contemplation are less fraught with anxious thoughts of "what's to become of me?!". I have built up enough faith and cultivated adequate patience to be able to continually reassure myself that I am making progress, even if most days it's imperceptibly incremental, nevertheless my life is moving forward. I realised, only recently, that the difference between being hopelessly stuck and quietly confident that things are coming together is completely up to the individual. I have simply decided on the latter as my default attitude. And it's working. I can see that the tiny efforts I am making day after day are all contributing to my well-being. Whether it's reconnecting with an old friend, or taking the time to write this blog, or experimenting with treating family members with greater respect!, I have to trust that I'm on the correct path and that nothing is wasted.

The irony is that in order to feel this forward momentum, and to appreciate one's current set of circumstances, one needs first to succumb to the realities of whatever limitations they are facing. Once I fully acknowledged the true extent of my fatigue and admitted that there are activities I just cannot manage right now, I was able to start asking for help, specific help, and found that family and friends are only too happy to oblige. My mind has been opened to the possibilities of living in a different way; a way that takes in to account my fatigue and enables me to focus on enjoying the little energy I do have at my disposal. Whenever I hear the familiar voice of self-criticism trying to take control after, say, a bad night's sleep ("Oh well, there you go, no point in trying to get anything done today - you may as well not even bother getting up in this state.") or a failed attempt at meeting up with a friend ("You've really done it now, they're never going to contact you again you flake") I think of my friend Sal who always encourages me to be kind to myself and to acknowledge how far I've come. Last night I had a stressful dream (or nightmare I suppose you'd call it) in which I found myself back in hospital having to undergo another stem cell transplant. I was delirious with anxiety and uncertain of how much longer I had to stay in isolation awaiting the horrendous after-effects of having my immune system suppressed to zero, I felt dizzy and breathless with fluid retention and was staggering about trying to keep a hold of myself when someone told me I hadn't even started the transplant yet - the sickening prospect of having to endure this hellish experience again was visceral and shocked me awake at 4 in the morning. I don't think I slept properly after that and so unsurprisingly feel pretty ropey today. Sleep deprivation always leaves me very self-critical and full of frustration at the inevitable decrease in productivity that results. And so, I keep thinking of Sal and what she would say to me right now; something along the lines of "Wow, all that trauma you've been processing, no wonder you're wiped out. Be extra gentle with yourself today and take time to acknowledge the healing that's taking place. You are so precious!". For some reason, talking to myself in that compassionate way is near impossible but if I somehow channel her spirit and talk to myself through Sal, then I am able to accept the soothing words of wisdom. A strong and unconditional friendship offers the most powerful medicine there is.

Party

A few weeks ago (when I was feeling somewhat less fatigued than now) I proposed to my housemates that we throw a party to celebrate the birthday that two of us share (exact same date) and as a kind of housewarming for me as I moved in only a month ago. The day of the party came and somehow we managed to pull it off despite most guests either cancelling or failing to show at all. My disappointment was mild, being more preoccupied with how exactly I would last a whole 4/5 hours of hosting. I kept telling myself, "it's ok you can go lie down whenever you need to and keep chatting to a minimum and just sit as still as possible". These were the thoughts I was having, never-mind the normal pre-party worries of whether I'm over-dressed and have I got enough booze in to last me til the wee hours...?! Despite knowing I was just too poorly, I was loathe to cancel at the last minute and am not comfortable with the idea of simply leaving my housemates to entertain the guests (I seem to have coerced more people in to coming than the others!). In a fit of panic I rang my auntie and revealed to her my concerns. She reminded me that it's not my fault that I'm unwell and that it's perfectly ok to just speak to housemates and let them know i'm struggling; and it would equally be understandable if I were to cancel my guests. She also encouraged me to focus on right now rather than letting my mind run away, conjuring fictional scenarios in pre-emptive guilt. I took her advice and ventured downstairs ready to "break the news" of my feeling less-than-prepared for the evening ahead. As it turned out the one housemate I could find, who was happily preparing the house by rearranging furniture, carving pumpkins and making soup from the innards!, was completely unperturbed by my confession. All that turmoil and in the end it really was a simple communication issue. By the time people arrived, I had rested enough to be able to get suitably glamourised and adjusted my mind to party-mode for long enough to enjoy a glass (or two!) of Cava, a spot of conversation with some previously long-lost acquaintances and even a couple of songs-worth of dancing... the trouble started later. I realised, around the 2am mark that I was going to struggle to get any sleep that night. I'm no stranger to the temptations of a good ole shindig but some people really do take it too far. By the time I'd pacified the police, and had a huge row with the ex, and gone downstairs in my pyjamas at 4.30am to request/insist that the music be turned down (as it was impossible to sleep even with earplugs) I was thoroughly fed-up and starting to think that maybe I should've gone with the initial cancellation instincts. The next three days were a complete write-off. In fact, I've found myself still, ten days later, laid up in bed at my aunty and uncle's house. I completely underestimated how much one night of overdoing it could set me back. Although, there are so many factors to be taken in to account - I know this. But I can't help but trace this current state of extreme fatigue back to that night. Things had been building up for a while. Prior to the party I had my birthday, which I celebrated modestly with a trip to the pub with fish&chips thrown in (back in bed by 11pm) and I was also recovering from the plane journey back from Spain. Flying with Ryanair is no picnic at the best of times, but when you're suffering from chronic back pain and find it difficult to sit up for longer than 20 minutes coupled with constant fatigue and headaches, not to mention the lingering sore throat, being confined to an uncomfortable seat with no leg room and a stranger on either side for 3 and a half hours is torture. Having to heave my case over my head to shove it in to an already jam-packed overhead locker was not an option, but trying to get someone to help was an ordeal in itself. The first three people I asked completely ignored me, thankfully the fourth turned out to be a thoroughly kind and helpful chap who could see that I genuinely needed a hand. Getting in at 12.30am and having to wait 40 minutes for a taxi was less-than-ideal when I was just desperate to get home in to bed. I'm only realising now how much that travelling all that way, followed by birthday and the party really took it out of me. With no reserves of energy to keep me ticking over I really can't afford to be getting so depleted. No longer able to keep up the pretense of being ok, I came to stay with family a week ago (thankfully my aunty came to pick me up otherwise I don't think i would've made it even though it's only a 40 minute train ride away) and have been pretty much consigned to bed the whole time. I tried going out on Sunday, just for a short walk up to the corner shop, but even that was too much for my aching body and pounding head to handle. On the way back my legs felt like they might give way, my heart was racing and my vision starting to go black. I was shaking from the exertion when I got back to the house and I was overcome with nausea. Unsurprisingly, the experience eradicated any doubt that I need to remain in bed and limit any moving around to only within the house. Of course I've been struggling with anxiety and frustration, at times getting so desperate I think I can't stand another moment of crushing exhaustion, and then at other times I remember how fortunate I am to be here safely ensconced in my relatives' house and being expertly taken care of, with ample friends and family surrounding me with love and concern. I know that it's going to take time, maybe months, to build up my energy levels. Accepting that is a big part of the challenge; but entirely necessary if I'm going to get through this. Mental attitude is the key now. Writing this represents a breakthrough for me as the previous weeks have been such a struggle that I've not felt the inclination to try condensing my gargantuan suffering in to words. I don't want to sound dramatic here; i'm being completely frank. I have found through my extensive personal knowledge of illness, that being modest and downplaying how hard it is actually delays the healing process. It's only once the true extent of the pain has been acknowledged that we can start to work towards diminishing it.

Reflections

In her book How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhardt describes the frustration of having to remain in bed for the duration of a three-week holiday in Paris. She had caught a virus on the plane journey from California which completely knocked her down, and from which she still hasn't recovered, fifteen years later. Although very unfortunate for Toni, I am so glad she chose to share her experience of developing post-viral (and later chronic) fatigue. Having spent the past week in Spain with my parents, I have been coming up against this notion of what a "holiday" should look like...how much activity and gadding about is required to constitute a successful trip? These questions have been plaguing me every day until I remembered Toni's book. Of course it would be preferable to have sufficient energy to get out there and dip a toe in the Mediterranean, but it's just not possible sometimes - when the  mid-morning migraine persists, and the sore throat will not be pacified by analgesics or copious infusions of honey-and-lemon. Some days you get to the point where a small outing to the seafront turns in to an endurance test; fighting the pain of aching joints and throbbing head through gritted teeth, and then the payback of hours in bed afterwards to compensate for pushing it too far. Saying this, I am fully aware that a certain amount of pushing oneself is necessary to living a balanced life, even with fatigue. The key, for anyone either sick or well, is to learn to listen to your body so that you know when to push and went to rest. There is no established universal indicator. Today, for example, knowing that I have a 10pm flight to catch this evening back to the UK, and painfully aware of my limits when it comes to travel, I have decided against going out to the beach with my Mum who is keen to make sure my "holiday" is as "fun" as possible. Understandable, of course, but now that my definition of those words has shifted to mean something altogether different I am no longer bound by feelings of how I "should" spend my time. Sitting quietly, listening to a Paul McCartney in session on BBC 6 music catch-up and writing this seems to me a perfectly fulfilling way to pass the time on my last day here.

Since discovering that I may never fully recover my energy I have read as many accounts of post-viral/chronic illness as possible. And all sufferers conclude with the same message - this is an opportunity to learn to trust; in terms of knowing your tolerance levels and trusting those around you to accept when you have decided, one way or the other, whether to push or to rest. This constant balancing act is one that we all must perform but for those of us struggling with fatigue it is perhaps more pronounced, and there is perhaps more at stake when you choose to go against your instincts and end up either inevitably burning out (again) or missing out on an opportunity to get out there and experience life. Regret, and the accompanying self-flagellation, is part and parcel of this process of determining the best way to live moment-to-moment. For me, the challenge lies in letting go of this regret and learning instead to appreciate the unexpected small pleasures contained within a day of seemingly doing nothing. I'm glad, now, that Mum and I stayed in today because we received a surprise visit from a dear family friend whom I hadn't seen in years. She was only able to stay for an hour which was perfect really as it gave us time to catch up and make promises to see more of each other without causing me to get too drained. Socialising is one of the most tiring activities so it's often a blessing when it occurs spontaneously and without any expectations of how things should go. There will always be times when it feels like the "wrong" decision has been made and opportunities have been wasted or energy has been expended on something not worthwhile, and that's ok as long as every once in a while we can enjoy a carefree day or two free from such regret, simply following one's instincts and living in the moment. Equally, an encounter with one friend who understands and appreciates you for who you are, tiredness and all, makes it easier to bear all those encounters with those who are unable to empathise.

Suffice it to say that although my time away has not borne all the hallmarks of a typical holiday in the sun, I certainly feel emotionally restored and ready to face those challenges waiting for me at home. I made a decision whilst here - to stop trying so hard and to stop looking for approval outside of myself. I have a sneaky suspicion that I may end up enjoying life more!

Escape

I'm writing this from my parent's house in the south of Spain, sitting outside in the shade with the light October breeze tickling the leaves on the tropical-looking trees. I've come here in an attempt to get away from the stresses and strains of my "normal" life back in UK, hoping the relaxation and warm air will facilitate a decrease in anxiety and an increase in energy. So far (second day here) I definitely feel more relaxed though I have been confined mostly to bed/sofa - I'm still recovering from the journey which left me exhausted.

After yet another restless night spent tossing and turning, listening to the incessant barking of neglected dogs, I came to the conclusion that I must once again return to that most cathartic of activities: writing. I often feel that I have very little to offer the world in this state of constant crippling fatigue; a state that descended upon me some six months ago and is showing no signs of lifting any time soon. At the age of 26 (almost 27) I feel this to be most unfair and entirely incongruous with my lively, sociable personality. That's the saddest part - no longer able to enjoy meeting with friends, I am forced to spend long, protracted days alone speculating on what I could be doing if only I had the energy. And yet, determined to live fully within the constraints of illness, I am somehow able to derive a kind of pleasure from the solitude, viewing it as a blessing in disguise; a much-needed reprieve from the stresses and strains of a fully integrated life. I have the luxury of getting to know myself better and to think creatively about how to use what little energy I do have in a way that's fulfilling. Whilst grappling with the recurring frustration of "what am I going to do with my life?" and equally distressing, "how on earth can I contribute positively to the world when I'm struggling to function on a basic level?!" I was suddenly able to perceive clearly that there is a way forward. I realised that my energy levels can be exponentially increased through altruistic action. Not in the sense of sacrificing my own needs for others, or somehow acting as a martyr for the sake of the "greater good", but in a holistic, joyful, unfettered way - I realised that it is absolutely possible to create value in society whilst respecting one's given set of physical circumstances. The important distinction to make is that in order to pursue a life of absolute fulfillment, it is vital to ask yourself two simple questions: "what makes me happy?" and "what am I good at?" Tormented by sleeplessness and plagued by doubt and insecurities I asked myself these questions last night and the answer came, clear and resounding - I need to write.

So here I am, getting back to it. Creating something rather than merely consuming. Connecting with the world rather than simply disconnecting; feeling unworthy. Illness has a terrible habit of causing it's host to lose all sense of self. You forget who you are and what your purpose is. A daily battle must be waged against this insidious thinking if any progress is to be made. It's an invisible battle which is what makes it all the more deadly. From the outside, a person fighting this particular demon must probably look completely inactive; idle even. But if somehow it was possible to look deeper, in to that person's soul, then a momentous struggle could be witnessed. I have to mention at this point my Buddhist practice. It is my daily practice (chanting, study, and faith) that gives me the courage and tenacity to continue fighting my own negativity. The real benefit of practicing comes at those times when I feel I've hit rock bottom, that's when all those hours sat chanting and all that time spent studying and listening to others experiences finally kick in to action to support my life and raise me out of that hole. There is nothing more lonely than illness; it's when your friends desert you and your social life evaporates. A vacuum is created which can only be filled - in my case by a strong resolve to believe in my own potential coupled with a fierce determination to overcome this pain-filled cycle of exhaustion. I intend to use this blog to capture in words the process by which I can and will continuously come to terms with chronic illness in my life. I don't know how often I will post as I can never predict how much/little energy I will have at my disposal from one day to the next. I don't want this to become a burden; something I feel obliged to keep on top of. I prefer to think of this blog as an escape, a place I can come to when the feelings of being misunderstood threaten to overwhelm.

Until then...