See You in Six Months
It’s been a little while since my last blog, maintaining the balance of a busy lifestyle and battling ill health leaves little room for the things I actually enjoy, thinking space and putting pen to paper is a luxury.
Recently I
had a ‘Supra Ganglion Hypo Gastric Block’, which involved big needles and my
spine (enough detail I think) in the hope of improved pain management, for at
least a few weeks. It’s my third injection and it’s not in any way a cure, but
an attempt towards an improved quality of life, if only temporary. It’s a tool,
one of many, used to combat the pain of Endometriosis.
It was an
exhausting procedure, in the hands of a fantastic pain management team, and it
took all of my energy to lay still and not panic whilst the surgeon inserted
needles deep inside my back and pelvis. Laying in recovery, gratefully nibbling
hobnobs and drinking (a little less gratefully) some questionable tea, I was
presented with the infamous (yet well meaning) phrase “see you in 6 months”.
Six months is a long time, yet somehow is a golden period of
time to “see how things are” or “let things settle”; or between referrals
from GP to consultation. When I say ‘a long time’, it cannot be underestimated how
long six months feels when you’re in pain and struggling.
In the void of time between opportunity to be heard and
understood, it can feel like torture when there is no support or after care to
ask those other pertinent questions “how
are you? Are you OK? Do you need help?” Support
is out there, but how do you know if no-body signposts you.
Last year (I'm not afraid to admit) I took the ‘ , which is the
questionnaire that the GP thrusts upon you when it becomes apparent that you
may not be coping; the results of my screener was unsurprisingly indicative of
depression, that the quality of my life is greatly affected by constant pain
and fatigue, that when I say “I'm struggling, I need help” I really do. A
well-meaning and enthusiastic GP embraced the opportunity to refer me towards
psychological support, a much welcomed and ultimately invaluable service
signposted to me 8 years into my diagnosis, a little over-due one might suggest.
It would be a good time to consider the 'Endometriosis Pain Cycle' at this point, bearing in mind the long waiting times
for diagnosis and the sparseness of appointments; like a classic pain cycle
there is a connection between pain, low mood, anxiety, inactivity and fatigue ,
however there are many more factors to be considered too which are specific to
Endometriosis. How to explain that living with Endometriosis and its associated
symptoms can affect all aspects of one’s life, how to demonstrate that even Superman
with his cast iron will and laser beam eyes, could be forgiven if he suddenly
had enough of being super and hung up his cape, Endometriosis does that, it
takes away what makes you ‘YOU’; it’s like kryptonite draining energy and
stealing your life force.
The Endometriosis Chronic Pain Cycle
Six
months was the wait, in between a few phone calls and letters , that’s half a
year waiting for emotional support post-scream for help, feeling dizzy as I
pedal round and round the ‘cycle of Endometriosis chronic pain’ (does that
count as exercise). Physical and emotional pain does not suspend itself
politely whilst you wait for appointments; symptoms persist, intensify, and
this can make the wait unbearable as help is suspended like a dangling carrot
just out of reach.
The
dangling carrot boils down to potentially 10 minutes, a small nugget of time
where you have to release months of pent up frustrations and hope that within
the tears and emotions you relay your symptoms and ultimate needs in an
appropriate way. Even I, seasoned and knowledgeable, am totally useless in
consultations and I often kick myself that somehow I didn't manage to convey my
‘case’ in a clear way, instead I retreat within myself hoping the medical
professional is a proficient mind reader. I kick myself because the opportunity
for hope could be lost or postponed for another 6 months because I didn't say
the right thing.
My
experience of appointments, during these years, have been mixed; on one hand I
have had first class care with understanding and clear ways forward (like
sunbeams on a stormy day); yet on the other hand I have had to fight as lack of
knowledge and even worse dismissal is the shadow that threatens each
appointment. This uncertainty causes anxiety.
It’s
almost like going to court, symptom diary under one arm, presenting your case
to the judge and jury, fighting for a diagnosis (7 years is an appalling
statistic for average diagnosis ), navigating the treatment plan, hoping for
understanding ; the consultation is a pivotal part of everyone’s Endometriosis
journey.
In
my experience, it is about time more was offered in regards to the interim, a
post-surgical “see you in six months” isn't good enough, there is nothing
within the land of limbo other than fend for yourself and hope you find some
support from somewhere which is appropriate. As a patient, I have to accept
that for 363 days a year I am technically on my own fighting a disease that can
cause pain and fatigue 24 hours. a day, every day; so as such, I must acknowledge
the absolute importance of my own potential in taking control of the management
of my illness, with the help and input of the medical services that I have the
privilege to access, however limited it feels; and beyond this with
complementary therapies and mindfulness, and the support of others (support
groups are vital).
Ultimately, I have to take ownership 365 days a year, and bring in all I know to help me achieve the optimum quality of life that I deserve. It is about choices, about being brave, about reaching out to others (via Endometriosis UK) and gathering knowledge and information, bridging the gap between appointments, and ensuring all the expertise that is available to me is harnessed and not squandered; so when that next appointment arises I am not only a patient, I am an expert patient, fully prepared, and making involved and informed choices about my healthcare pathway.
www.endometriosissupportgroup.co.uk
For more information about Endometriosis visit https://www.endometriosis-uk.org/
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