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.
