Back in business

I last blogged about my health back in November 2013 - over 6 years ago, when the chronic fatigue and pain were new phenomena for me. Despite many times feeling the urge to write and share about the on-going challenges something always stopped me, and I've been trying to work out what exactly was keeping me silent. After reflecting a bit I came to the realisation that in my struggle to manage the (ever-evolving) symptoms I felt the need to create distance between my sense of who I am and my status as a chronically ill person. I think on some level, as well, I had bought in to the belief that the key to wellness lay in denying it (effectively). There is a lot out there about "thinking positive" and "mind over matter"; even at the fatigue clinic I sought help from all those years back, I was taught the importance of ignoring the instinct to rest and instead build up an incrementally more active lifestyle. This advice may work on a small subsection of patients, but for me it was outright dangerous. Pushing myself, and ignoring my body's distress signals, has always been my default and is quite possibly one of the main causes for the run down state that's characterised the past 6 and a half years. Failing to rest properly after illness is par for the course in our society but it's costing us dearly. The Victorian custom of convalescence (retreating to the countryside/seaside for complete rest and relaxation for weeks if not months) should be reinstated in my opinion. 

In my hurry to regain a sense of "lost time" after a gruelling eighteen-month journey of cancer diagnosis/treatment/relapse/more treatment, I jumped way too fast back into my self-punishing approach to life. Only a few months after completing the final radiotherapy treatment I was actively job hunting and desperately securing volunteering work to boost my CV. I remember getting shingles (the adult version of chicken pox and EXTREMELY painful) just before a job interview. I obviously went along anyway despite being in agony the whole 25-minute drive there. I was overjoyed to get the role of visitor assistant at the recently opened contemporary art gallery just outside Leeds (where I was living at the time), even if it was just a 0 hours contract. I remember viewing any health issues as a nuisance and tried to hide the lack of stamina I was still experiencing post-cancer. Around 6 or 7 months after starting the job I woke up one morning and felt like I could barely move. I managed to get up and sit in a chair but that was all I could manage. It was like the worst hangover of my life, but I'd had nothing to drink and slept a full 8 hours the night before. I called NHS 24 and was told a doctor would call me back. I felt so confused and, I guess, annoyed that I just dragged myself up, put my uniform on and somehow got myself to work. I remember on my lunch break walking to a bench out of sight of the gallery, and just laying down. I was so exhausted. I had missed calls and voicemails from doctors, which I noticed when leaving work that day but chose to ignore them as I so badly wanted to simply get on with my life. But that was the beginning of a fast descent into unmanageable, chronic fatigue and other symptoms that made it impossible to even drive myself to work, let alone complete a full shift. 

The blog posts I wrote under the heading After the Fact  detail the months after stopping work as I came to terms with being sick again but with something much less definable and relatable than cancer. Around this time I became convinced that keeping busy, by pursuing a Master's degree, would enable me to get over this silly fatigue business and to feel like I was an acceptable, productive member of the human race. I essentially spent £6,500 and two years of my life on attempting to quiet the self-loathing; to smother it with occupation. Of course I am proud I managed to complete the course (and somehow even with a Merit), and I don't exactly regret doing it. I just feel sad that it had to be such torturous experience. Though I did learn a great deal about identifying, voicing my needs, and then ensuring they were met. For example, fighting to be exempted from the compulsory 8-week work placement module after unravelling mentally and physically whilst trying to work part time in a major art institution in the centre of London. 

I'm still learning; these are lessons that require daily repetition in order to stick - but I reckon this experience, harsh as it was, helped solidify the foundations for a lasting sense of self-worth. As much as I learned about museum management, curating, collections management, loans and acquisitions policy etc., it was in the struggle to deeply respect myself and my life where I developed the most. Looking back, I feel awful about the way I treated myself (and still do oftentimes) - pushing and pushing, forcing my exhausted body and mind to keep up appearances.

Fast-forward to now: Whilst I am much the same as I was back at the beginning, health-wise, my attitude towards my body and my life itself is completely different. I've learnt the hard way that years of denial, and positive-thinking and "faking it" does not lead to recovery. It's only been fairly recently that I've fully recognised the deep-rooted sense of shame and embarrassment over my situation - unable to work, largely housebound, and living off benefits. Even writing this makes me cringe. But the thing is, the more we try to ignore something the larger it grows and the more it consumes our every waking thought. I guess I imagined that when I returned to blogging it would be with a triumphant "recovery story" - any other outcome was unacceptable to me. But in a way, this is my recovery story - not so much in the sense of physical health (as I'd hoped/expected) but in terms of my rediscovering my self-worth.

The most common narratives surrounding CFS/ME/Fibromyalgia describe two outcomes: the successful recovery story (or at least significant improvement - sometimes described as achieving remission), or the "it's incurable"/ life-sentence outcome. Unfortunately these models can cause those of us afflicted with the condition(s) to feel like failures. Not only have we failed in terms of career, financially, socially, personally, but also physically - in that we are somehow deciding to remain unwell. This is too much for anyone to bear, let alone somebody with limited energy and ever-present pain/discomfort. Taking the pressure off, and choosing to "style out" this life of mine - symptoms and all - has felt radical, and provided huge relief. Now I can get on with the business of being happy right here where I am, AS I AM. Of course I remain ever-focused on completely regaining my health - this is what I want more than anything, but I'm not going to lose sight of the daily victories and joyful moments that can make up my current, health-compromised, existence.