Pelvic Pain Awareness Month – the Spoonie Tag

I know May is nearly over, but hear me out.

What springs to mind when you think of May? Flowers coming into bloom? Mother’s Day (for you transatlantic friends)? A grey-haired lady who wants to bring back fox-hunting and cause even more devastating cuts to disability benefits (#topical #remembertovotekids)? Whatever it is, I bet it isn’t pelvises. But joke’s on you, because May is actually Pelvic Pain Awareness Month. Apparently. You’d think that I of all people should know that, but for me, every month is pelvic pain awareness month. Nevertheless, I thought I’d honour this by completing the ‘Spoonie’ blogging tag and carry on my ‘Diary of a Broken Vagina‘ series. Prepare to know me a lot better.

What is your diagnosis?

Unprovoked generalised vulvodynia, with a side order of fibromyalgia and IBS.

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It’s common for diagnoses to fluctuate over the years as a spoonie’s symptoms develop and treatment options are tried and dismissed. Initially, my diagnosis was unprovoked vulvodynia with vaginismus. The vaginismus (painful spasming of the pelvic floor muscles) was the main focus for most of the doctors I saw in Years 2-4 of my seven-year journey. I had two rounds of Botox (yes, down there) in the hopes of paralysing the muscle spasms, but after they didn’t help, it was decided my issue was nerve-based rather than muscular. So vaginismus dropped off the diagnosis and became plain, good old-fashioned vulvodynia, AKA ‘your-vulva-hurts-but-we-don’t-know-why-so-just-wear-cotton-underwear-and-think-happy-thoughts-itis.’

What has been the hardest part of being a spoonie?

Aside from trying to keep up and do Life while being in constant pain, the hardest part about being a spoonie is undoubtedly the battle against stigma. However, I must qualify this, because that implies that I just need other people to be more understanding. Whilst I have had some negative experiences, I’ve been very fortunate to avoid the usual parade of heart-hurting ugliness that many of my fellow spoonies have received (especially if their complaints are invisible and/or gynaecological). This isn’t the stigma which paralyses me.

The stigma I fight on a daily basis is my own; the beliefs I have internalised over the years which I have to fight afresh each day. Because it’s been seven years and still no one can explain what is wrong with me, I am constantly battling my own doubt and frustration – am I really in pain or have I just convinced myself I am? Am I actually just very lazy with no work ethic? Do I like being in pain? Do I secretly want to keep being in pain? Am I using this pain as an excuse so I don’t have to try and fail on my own? Then there are the thoughts which have exclamation marks rather than question marks: You’re a worthless employee! You’re a drain on society! You’re a typical millennial snowflake that just needs to grow up! You’re a burden to everyone you love!

Whilst a bit of self-reflection can be very healthy, it’s fair to say that my brain is not always a safe place to hang out. Couple that penchant for overthinking with being bed-bound for months upon months of my young life and you have a neat little powder-keg. Trying to tread the wafer-thin line between maintaining hope for recovery/improvement and accepting the present is a never-ending assault course.  (Can assault courses happen on wafer-thin lines, I ask myself? Well it’s my damn metaphor and I can do whatever the floop I like with it, I answer myself, politely.)

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Artist’s rendering of my life.

What have you learned?

  1. Bodies are just bodies. Sometimes they break. Making peace with that is essential to being human.
  2. You do not get pregnant from uttering the word ‘vagina’, nor do fairies fall down dead.
  3. If you are so concerned about anything penetrating your vagina ever ever ever, then pretty soon your vagina will get the message and get its Boudicca on, declaring war on any poxy invader that so much as thinks about approaching. This is NOT irreversible, but it will take time, patience, forgiveness, and a nice NHS lady sticking a gloved finger up your crotch on a weekly basis for a few months.
  4. Some people will get bored of you and leave. Let them.
  5. Some people will accept you on an unconditional level you started to believe was impossible to attain. Cherish them.
  6. Shame serves no one and heals nothing.
  7. Your mind and your body may need different things to be happy. Your job is to mediate between them, and, like a good peace-keeper, find an arrangement where everyone gets at least some of what they want at least some of the time.
  8. Hope is not silly.  Hope is air, and you were made to breathe.

What are your thoughts on the spoonie community?

I am beyond grateful to live in the age of the Internet and the blogosphere. To know that I can log on and connect with people around the world facing similar obstacles and struggles is such a comfort – even if this connection only comes in the form of a little Instagram comment or a quiet Liked Tweet. Similarly, reading accounts of other spoonies’ lives makes me feel empowered and less alone, even if their conditions are very different to mine.  This is just as well, as very few people write about chronic pelvic pain, least of all vulvodynia, which is in large part why I write this blog. I’m thrilled to see the revolution happening around endometriosis and lupus, with celebrities such as Lena Dunham and Selena Gomez leading the way. We live in an age of Instagram filters and the body beautiful, so every conversation about bodies going wrong and how we handle that, matters. The Internet is a magical place where we do not need celebrity or money to be allowed to speak and be heard. God bless that freedom.giphy-11

What distraction tools do you use?

I’m a huge fan of the distractanap. At university, we spoke of procrastinaps, but that doesn’t quite do justice to the distractanap.  Unlike the procrastinap, the purpose of which is to put off doing work, the distractanap’s aim is to slip out of consciousness for a while to escape consciousness itself. Contrary to what internalised stigma seeks to tell me, I do not nap to dodge work. Aside from escaping reality for a while, I nap for a myriad of reasons: because my body is exhausted from being in pain all the damn time, because my painkillers make me drowsy, because audiobooks are invariably extremely soporific.   But I do not usually nap to evade work. That being said, nothing can kill motivation quicker than a flare up in your lady parts.

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I keep a freezer stocked full of icepacks for flare days. When the pain feels particularly sharp and burning, I wrap one in a nappy bag (all about that glam Kardashian lifestyle) and hold it on my groin until the pack loses its coolness. This is often excruciating for the first five minutes and then can be comforting, even if not terribly effective at lessening the pain. At this point, most actions I can take are more useful for their placebo effects than any scientific benefit they once purported to offer.

What is your support system like?

My support system consists of: my Mum, my Dad, my gorgeous dog Tottie, my pain specialist, and my family and friends.

You may note that the medical world features shockingly little in this list. There’s my pain specialist, sure, who is an absolute legend – but I can only see her once every 6-7 months because her waiting list is so long. I was seeing an cognitive behavioural therapist regularly for a while, but was discharged from her care about a year ago. Surprise, surprise, I’ve got a new referral because my mental health is not tippity-top (because, guess what, I’M IN PAIN ALL THE DAMN TIME). I see her next month. I saw a different therapist privately for a few months last year. She practised Emotional Freedom Technique, and claimed she could cure me if I kept going to her for a year. Whether this promise had any weight shall never be determined; after a long line of sessions where I felt worse coming out than going in, I gently told her it wasn’t working – that it wasn’t her, it was me – and that I hoped we could still be friends. Or something like that.

Everyone else on that list is pretty great though. The thing that unites them all is their patience and their constancy. This goes for my parents (who go above and beyond in all the research they do to try to improve my quality of life) and family too. I have a handful of great friends who don’t forget me even when I haven’t been well enough to see them in a while, and who see past my illness to all that I am. They come and visit me when I’m struggling to travel, and check in on Facebook and Skype. I’ve come to the realisation that I should not grieve the friends I have lost, but simply cherish the ones I have. Call it ‘pruning’. Only the good fruit-bearing branches remain. And they really are lovely, those branches.

What do you miss?

I miss being able to be spontaneous and hop out places without prior planning and medicating to ensure I can get through. I miss staying up late or dancing too much and not worrying about how my body would feel the next day and whether I could take the inevitable flare-up repercussions. In short,  I really miss the Old Me; the one that wasn’t in pain all the time, the one who didn’t flake on people, the one who had the wherewithal to strive for her goals, who had energy and dreams, and energy to work towards those dreams. I still fight to be her, but the effort is exhausting. It’s a good job I really like naps.

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Me when I get to go outside

What stigmas do you wish you could change?

URGH, so many. Highlights include the belief that those with invisible chronic pain are drug seekers, work shirkers, not pulling their weight in society… A good friend (who also happens to be a spoonie) once told me, ‘We are not disabled – the world is disabling.’ This really helped me to extend myself grace and love, and recognise that sometimes the problem isn’t with you, the problem is with how others are perceiving you. Whilst frustrating, there is something oddly liberating in that.

‘It occurred to me that there was no difference between men, in intelligence or race, so profound as the difference between the sick and the well.’  – F. Scott Fizgerald, The Great Gatsby

What would you like a “normal” person to know about chronic illness?

Primarily, that we are not drug seekers or work-shirkers, and that so many of us desperately want to pull our weight in society. This realisation would be so much easier to arrive at if everyone knew that chronic illness is not always visible, but this does not make it a) psychological, b) psychosomatic, or c) ANY LESS REAL.

Name 5 spoonie things you can’t live without.

  1. Bed
  2. Bath
  3. Laptop
  4. Tea
  5. Dogsnogs.

What triggers your flares?

Now isn’t that the million dollar question. The most accurate and longterm answer is ‘stress‘, but name me a millennial that isn’t stressed (and isn’t a Tibetan monk) and I’ll ride my bicycle naked down Oxford Street. (Please don’t ask me to do this, whether you have an answer or not, it’s like the most triggering thing I could possibly do). Other flares include too much [of the wrong kind of] exercise, especially if it involves a) inclines, or b) bicycles. Anything too near my crotch can be enough, so jeans and other tight-fitting clothing are also out. I’m a nervous swimmer because chlorine can be an issue. And God help me when I’m prescribed antibiotics, which may upset the flora and fauna of my gynaecology and give me thrush, which is what started this whole circus off in the first place. In short: there are lots of potential triggers, but stress, crotch-heavy activities (oy oy) and just generally overdoing it nearly always spell bad news.

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What’s your social life like? Has it changed?

GURRL. It’s unrecognisable. See ‘What is your support system like?’ for more details. I certainly go out drinking and dancing way less than I’d like, and my FOMO has reached new levels of desperate. But I’ve also developed different relationships with other people who might never have factored in my life so strongly, had it not been for the deep connection illness can engender. It’s taken some time, but I’ve come to regard most of this change as a positive thing, even if it really hurt at the time.

How has being sick changed you?

For better and for worse, in sickness and… well, mainly just sickness. If you caught me on a bad day, I would say that being ill has opened a portal to depression, the depths of which I hoped I would never encounter. I might say that it has made me useless, impatient, cranky, hollow, and sometimes downright unloveable. You’d then probably have to leave, because I’d probably already started being racked with violent sobs, and I might be inclined to throw something. It wouldn’t be directed at you, but my aim is very, very poor so I can’t guarantee you wouldn’t end up in the firing line.

On a better day, however, I would say that the strength of character and resolve I have developed as a result of being ill has been immense, and continues to grow. I was already empathetic as a child, but throw the challenges of invisible disability in the mix and now you have a woman with an essentially permeable membrane: the love I feel for others and the intuition I can have about their personal plights knows no bounds. Due to all the time I spend in bed, I am drastically better-read than I was a few years ago, and I’ve developed many creative skills, such as bullet journalling, creative writing, and even a little html coding. Above all, I have learned the value of hope and the unquenchable resilience of the human spirit. So many times, I’ve felt at the end of my tether. But I just never seem to run out of rope. I never used to think of myself as courageous. I certainly do now.

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Channelling Queen Bianca as often as I can

What are the blessings from being a spoonie?

This is bittersweet to answer, and I don’t want anything I say to play into the stigma I am so eager to avoid. What I will say is this. Being a spoonie, we are forced to do what millions in this world wish they could do if they had the time: slow down and focus on self-care. Being ill – especially when you’re young – raises so many questions you never thought you would encounter, questions which were sure to bite you on the bum at some point in your life, but not for a good 20-30 years if you were lucky. We grapple with the hard stuff because we have to, and we learn resilience and courage. These are lessons which are sometimes difficult to be grateful for, but the qualities they produce are undeniably huge blessings to ourselves and others.

May your vulva be happy and your eyeliner be even,

Rosalind

2 thoughts on “Pelvic Pain Awareness Month – the Spoonie Tag

  1. Wow wow wow and wow. Thank for your letting us into your inner world. This post has everything, love, rawness, humility and humour. You are beauty encapsulated and thank you for this gift. Even though I do not have pelvic pain there was so much I can relate to. Love xxx

    Liked by 1 person

  2. Rosalind, I’m so happy to have found your blog! I particularly loved your answers in the “What have I learned?” section– they really resonated some of with my own experiences. You are right– “bodies are just bodies” and sometimes they do break. And there’s no reason for any of us to be ashamed of that.

    Like

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