It is with great trepidation that I reintroduce myself to this blog.
So why bother? There’s no gun to my head, no clamouring fan base. If I’m nervous, why am I reinstating this quasi-public-diary to the Internet?
Because my story is not unique, and it needs to be told.
Why did I stop in the first place? Several reasons. I was tired. My energy was, and still is, extremely limited. Years of fighting through chronic pain to hold onto the life I’d forged – the life that was moving at a healthy person’s pace – has left me with chronic fatigue (officially). My usable hours are much diminished. I’d also started trying to write a novel based on my experience, during which I fell prey to a number of classic first-time-writer pitfalls (note to self: do not edit during the writing process; you will convince yourself you suck and should never pick up a pen or set down to a keyboard ever, ever again; in fact, you should probably just stop talking altogether). I was undergoing hypnotherapy, which felt a bit like a mind-mechanic sticking filthy fingers right inside my thoughts, rummaging around and unscrewing whole sections, often leaving me in a state of muddle, migraine and melancholy. All in all, I did not have the spare wherewithal to keep sharing my story. I’d battled for long enough and progress was so minute, it was easy to believe the poignant part of my narrative – the bit that might help people – was over.
But then, my narrative changed.
I had sex.
Yes, you read that right. I of the Broken Vagina, Mother of Vulval Pain, Queen of the ‘Ouch-Don’t-Put-That-There’ Sea, Breaker of Relationships and Refuser of Intercourse. I am now able to have sex. And I did. Sex was had. By me.
I wasn’t ready to write those words on the Internet back then. But I am now. And I want to. Not out of a prurient desire to share intimate details of my sex life – sorry to disappoint – but because I truly never believed it would be possible. I spent years becoming so convinced I would never be “truly loveable” (let’s unpack that another day, shall we?); even going so far as to be resign myself to not being able to have biological children. I believed that lots of people could get better and heal from vulvodynia/ vaginismus; I just didn’t think I was one of them. And perhaps there’s someone out there who feels exactly the same, and needs to hear me testify to the change in my narrative. Especially as I’m not telling you in order to sell you anything or tell you what you’re doing wrong, and that for just ALL OF YOUR SAVINGS PER MONTH FOR LIFE I can solve it for you. I’m just here to tell you where I’m at in my journey, and be there for as many of my sisters (& other-identifying siblings) as possible.
So how did I get there? Let me walk me you through.
The last ‘health update’ I gave was way back in 2016, when I made the difficult decision not to finish my Master’s degree, in favour of staying home to “recuperate.” This was, on balance, a sensible decision, but its outworking, unsurprisingly, was very painful. Once again, I was left grieving a dream, a life plan I might have attained, had my body not let me down so heinously. I sobbed. A lot.
Frustratingly, giving myself time to heal was absolutely the right decision. I had been like the proverbial swan, gliding on the surface, while underneath the water, my legs were paddling furiously, and starting to buckle under the pressure. (I flatter myself, asserting I looked like a swan; it would be more accurate to imagine an overly-fluffed, enthusiastic goose with mascara stains down its cheeks and a hip-flask of gin wedged in its feathers.)
The previous year, I had fallen through a gap in the NHS system, mostly through my own fault (although, again, that is a discussion for another day). I had missed a physio appointment and the window to rebook had passed me by, consumed as I was by all the aforementioned “paddling”. So the internal physiotherapy, which had been doing me so much good, came to a halt, and my muscles resumed their stubborn resistance. Finally, I managed to bring this up with my Pain Doctor, and was referred back to the Women’s Health Physiotherapy at my local hospital.
Fast forward a year, and I entered my first relationship where full penetrative sex was a regular occurrence. Largely reliant on lidocaine and icepacks, but nevertheless! An unimaginable change. I credit this predominantly to the physiotherapy sessions and dilator-practice I was assigned, but also in lesser part to the psychotherapy I underwent during this time. Vaginismus, the involuntary tightening of pelvic floor muscles, can be caused by a myriad of factors, but it seems it is often an outworking of the fascinating mind-body system, of which we are often blithely unaware. I will follow up this story in more detail and share more of what I have learned about this condition – today is just to catch you up.
What does my life look like now?
Don’t get me wrong, I still consider myself a ‘spoonie‘; on most days of the week, I identify myself as firmly on the disability spectrum. The constant vulval pain is still present, but mostly muted. Sadly, my whole body has been sensitised by the years of pain and tension, and I now deal with varying intensities of full-body pain every day. Who knows whether I had this proclivity before, or whether my pain-brain-system has conjured it into being, as a response to the stress of my pre-existing condition. Either way, I’m on a lot of medication to counteract my dysfunctional pain system ringing faulty alarm bells 24/7. I explain to new people (as and when I need to, I mean – I’m not going up to strangers in the supermarket… but that’s partly because I don’t go to the supermarket because I’m in so much pain lololololol) that I have an invisible disability/ widespread chronic pain.
Nothing, absolutely nothing, brings me full relief. I have begged my pain doctor for stronger painkillers, but she has refused in the interest of my long-term betterment. That was a tough ‘no’ to hear, especially when I was in such a dramatic flare as I was at the time. But I believe she has my best interests at heart. I am now using methods such as mindfulness, with thanks to apps such as Calm and Curable, to further my knowledge of the way pain systems work, and relax my body in an attempt to circumvent the stress-pain cycle. More on this story as it develops!
The important point here: my life changed, even when I’d given up hope that it could.
We never know what’s around the corner. We cannot stop showing up for ourselves.
I’m restarting this blog in the hope of helping you show up for yourself, sharing what I’ve learned about life with chronic pain and reflecting on what it’s taught me so far.
In conclusion (for now)…
If you’re in pain: don’t give up. Give yourself time and the ability/permission to rest. You cannot heal while you are trying to keep up with others. Your mind and body takes a great toll in dealing with daily unrelenting pain, and you have every right – a duty, even – to slow down and honour that. We are incredibly complex machines and we are constantly working for our own good; the trick is to work out which parts of your system have to recalibrate their understanding of what is truly for your good. Keep focusing on gratitude to give you energy, and hope where you see none. Try not to spit in the eye of anyone who tells you to “just think positive.” If you fail, apologise politely and offer them a handkerchief.
Above all: offer yourself compassion. Be your own best friend. Because you can rewrite your story. I’m rewriting mine.
Until next time,