Long Time, No Oversharing

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Sorry it’s been a while. As anyone with chronic pain will tell you, sometimes the huge effort it takes to do little things, like make a cup of tea or shower, really grinds you down. So when something big comes up, it can really knock you for six. Like, for example, having to make the significant decision to quit your Master’s degree because you’re not well enough to finish it. *sigh*

On the plus side, more time for writing! SO, health updates. Firstly, in response to my last post, I asked my physiotherapist about the old Hymen quandary. To my surprise, she said I would have only torn it by doing the more invasive massage with the trainers, and that will be why I was in so much more pain as a result! Things seem to have calmed down on that front, too, so I guess that makes sense. So much for my ‘Eureka’ moment! Hey, you gotta keep hoping.

Speaking of hope, I had a slightly disheartening experience this week when I attended a pain management course in London that I had been referred to by a consultant there. Initially when I was told about this course, I had to ask, are you doing this because it will actually be beneficial to me, or are you fobbing me off with this token effort of helping me ‘come to terms with’ my illness? Given that it was offered in the same breath as the sentence, “I cannot cure you”, I didn’t think that was too far-fetched a question. The consultant replied that they had seen real results from the course, and that the only way to treat a dysfunctional problem such as chronic vulval pain is to take an holistic approach. So I went along to the ‘taster’ session. Most of the advice that was given was stuff I had heard before, mostly from my amazing counsellor back home, who has offered me lots of information on the differences between acute and chronic pain, and some basic Cognitive Behavioural Therapy techniques.

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Keep going, I am definitely listening.

Credit where it’s due, the psychologist at the session put a lot of emphasis on making sure we felt we were ‘heard’; she clarified that in no way did she or her colleague mean to imply the pain was “all in our heads”, but rather that, in disciplining your thoughts and responses to feelings and experiences, you may be able to gain a greater degree of control over your pain. Fair enough.

The one terribly unfortunate moment came when the physiotherapist was elucidating the function of the course. Earlier on in the session, we had mentioned how tiring it can be feeling like you’re always looking for a cure, reading every article about pain you can find… All very standard. However, this poor chap, in the spur of the moment, gently but firmly suggested that presumably in being there, we had all ‘reached the point of thinking, “I need to stop looking for a cure.”‘ I wasn’t offended so much as completely blindsided, not to mention so unbelievably gutted.

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To me, London medicine means hope, means cutting edge, means innovation, means progress. It doesn’t mean accept your fate.

This got me thinking about the incredibly difficult balancing act we have to do when battling chronic illnesses, between being realistic and practical about our disabilities and limitations, and still remaining hopeful for the future. A book that really influenced my thinking on this subject was How to Be Sick by Toni Bernhard. The wisdom and peace Bernhard bases her life around seems to float right off the page like incense, seeping through every pore. Her meditative techniques have saved her from giving into negative emotions such as bitterness and anger, and have kept her joyous and peaceful in what could have seemed the most disastrously unfair set of circumstances. It’s no overstatement to say this book changed me. So I was doubly disappointed when I let the unwitting physiotherapist’s words attack my heart and sense of wellbeing.

I could well have taken his words out of context. Perhaps I was just waiting to be angered because of the pain I experience. Maybe I’m not ready to hear (from several sources) the words “we can’t cure you”, “no guarantees”, “you will have this for the rest of your life.” I am happy to do all I can to make my life better, and I want to learn how to live with less stress and greater joyful fulfilment, but I am not ready to give up. Even if people tell me to.  This vicious, vindictive ailment seemed to appear in mysterious circumstances. I give it full permission to leave in an equally mysterious fashion. So whilst I choose to remain open-minded about the pain management course and the professionals’ opinions, past a certain point I have to be stubborn. No one, be they doctor or layman, will make me give up on my dream of living a pain-free life one day.

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