A writing.

A writing. No punny, tongue-in-cheek titles. Not a shout for sympathy or attention. A simple PSA to save me being on repeat and to clarify a few things to those who aren’t aware.

To those who haven’t noticed, Callum and I took the decision to separate. The reasons why are, frankly, nobody else’s business unless I choose to speak to you about it, but rest assured that we are amicable, moving on and discovering ourselves, still happily and conveniently cohabiting for the time being (yay for having a 3-bed apartment; and I finally fulfilled my lifelong dream of owning a loft bed..!), and most importantly grateful for the journey we have taken together. We have no regrets about our decision to get married and those who were there would agree that our wedding was truly heartfelt and right for us.

I understand that we have friends and family who are very disappointed, particularly in me, and there are one or two things that I would like to get out in the open, if anything because writing helps me to process things myself. One of the main factors of us deciding we had irreconcilable differences was that I have truly become a very different person since recovering from my life-changing surgery in October last year. I have on multiple occasions since we decided to share the news of our separation (which was only recently, however it’s something that we have been talking about and working on since shortly after our first anniversary in April), been asked the frankly offensive question of “well, why didn’t you think about that before you had your surgery?” The answer to which is in a couple of parts. Firstly, I don’t think anybody could really truly predict how a physical change will completely affect you mentally, or even give you a personality transplant. Particularly when you have spent OVER A DECADE being told that many of your physical symptoms and worries are “all in your head” by professionals, I *massively* play the gravity of things down to myself. Of course I didn’t think things were such a huge deal that it was going to have such a profound affect on me as a person; it’s been persistently ingrained into me over many, many years. Of course in retrospect it makes perfect sense. But unless you have been in that situation you’ll never be able to truly understand. And your understanding isn’t what I’m asking for here; I’m not even asking for approval. I’m asking for respect and support, because these things don’t have to be mutually exclusive to the former.

Another thing people have taken great care to stress has been the amount of time and money we spent on the wedding, the investment we’ve made in our apartment, and so on and so forth. Of course I am aware of these things, but I, we, have a right to be happy and do what’s right for us. At the end of the day we had a wonderful celebration of everything our partnership is/was about and we still share so much. I have no regrets, and of course in the future I would take a long, hard look at myself and my circumstances before getting swept up in a marriage, if it’s something that arose. But neither of us deserve to be judged and I think given the unprecedentedness of our situation, we weren’t to know how things would change. The apartment is an investment that we together are taking very seriously and intend to hold onto, and we will always remain close and support each other.

I have been feeling incredibly alone and isolated in the sense that I am extremely high-functioning. Even at the extremes of my mental health issues from when I moved to Manchester and was studying, over the last decade, and at the peak of my physical difficulties, I feel that nobody has ever truly understood what I have ever had to deal with because I am good at blanking out and numbly getting on with what needs to be done. I am not asking for pity, sympathy or intending any ‘woe is me’ sentiments here; it’s simply how I see things. And my reaction to everything that’s happened with the separation has been the same. I have put my blinkers on and staunchly marched forward. I have gotten on with work, I have launched myself into new friendship groups and explored things that I believe to be right and beneficial to me. I have carried on with chores and appointments and rehearsals and practise because that’s what I’ve needed to do, and ceasing to function has never been an option for me. But that doesn’t mean I don’t mourn. It doesn’t mean that I haven’t cried and hurt and wished for everything to be simple. It doesn’t mean that I am selfish and don’t care and am finding things easy, because I’m not. It doesn’t mean that I’m not having panic attacks and heart palpitations from stress. But within that anxiety and stress and self-loathing I am doing my upmost to continue swimming against the tide and to move on, to make the best of a truly unfortunate and disappointing situation in the only way I know how; by getting on with things, pushing myself and trying to find joy and experiences in the world around me despite the stress that I am going through.

I also read a wonderful article on a website the other day that described how getting back into dating and exploring relationships after a long-term split isn’t a selfish thing to do. It likened a breakup to a huge mistake in a piano recital. You don’t quit the piano for two years and dwell on everything that went wrong. You pick yourself up, get practising, learn from the mistakes and strengthen your technique and go for more piano recitals. A number of people have expressed concern that all of my previous relationships have been long-term ones and questioned whether I am in a ‘cycle’ and stressed that I should remain decidedly single for the long-term now. To that, I am calling bullshit (sorry, folks). I see no problem in that my previous relationships have been steady, committed and long-term events that have encapsulated important chapters of my life and moved on naturally. I have learnt and appreciated so much and apart from one who I never hear from, I am friends with my exes. Yes they all happened close together but it’s not like I go looking for things. I am all for letting things happen naturally and organically and exploring, and I’m sure these same people would have similarly raised eyebrows if I was bringing home somebody different every month (not that there’s anything wrong with that, people…you do you!). I have done an enormous amount of soul-searching and self analysis coupled with a lot of counselling and CBT, and essentially I am a nurturing and giving person. I thrive on having people to care about and on mutual affection. I have so much to give and in return, giving fulfills me and makes me feel whole and happy. Yes, of course I will tread carefully. Of course I won’t be rushing into marriage again. But Cal and I have both been seeing other people and finding great joy in it. We have shared our experiences together and even met people that we’ve been seeing.

I suppose the reason I am getting this all out in the open, the reason I want to share, is this; I don’t mind if people are disappointed or disapproving of me. In fact, I entirely understand. But the thought of being branded a disappointment and a reason to worry, some crisis-ridden off-the-rails madwoman, doesn’t set will with me when I know for a fact that I am strong, rational (for the most part. Just keep me away from the kitten videos on youtube), passionate and driven human being. I love my home. I love that although our marriage didn’t work out, Cal and I are still such an important part of each others’ lives. I love the self-discovery I have been through and the opportunities I have given myself to explore what I need to be fulfilled as a person. And most importantly, I love to love. So judge me all you like, but I’m no longer going to guilt trip myself and have exhausting anxiety attacks over what people think of me. I am a human being. I am an enigma. I am living my life in the fullest sense of the word. I am owning my emotions, insecurities and desires. I am Jay, and I’m going nowhere.

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My sordid affair with stand-up comedy; I’d like to say it’s been fun.

But it hasn’t.

I began my adventure into stand-up comedy in August 2016, when I believed that I had something strong to say. And I did. But for the most part, people didn’t want to hear it. Primarily because I’m not a ‘real comedian’. That is to say, I don’t have a penis.

And to those that did hear my message, who laughed and applauded and said there should be more like me; I love you, but instead of boosting my confidence it simply made me despair more every time I saw an audience (the women included) laughing raucously at rape jokes and misogyny made by mediocre white male after mediocre white male.

Now don’t get me wrong, I don’t hate mediocre white men. I fucking married one. But if you are reading this and think I’m a bitter old feminazi and feel personally victimised by me, then good. You are the problem. Some of you are genuinely brilliant and deserve to be heard worldwide, and it’s been a pleasure to gig with you. But you know what, most of you don’t deserve to be in the same room as a stage, let alone tarnish it with your blinkered overconfident ‘bantz’.

To my friends, men and women like, who say that as feminists we should continue to challenge and question the lack of diversity on the scene, I am sorry if I am letting the cause down by bowing out. But this isn’t my battle to fight right now, not when it’s making me so miserable and resentful in every area of my life. I pride myself on the fact that in my 27 years I have tried so many things. Music and performance, on which I built my career, writing, gaming, fitness. But in all of that time, even as a video games enthusiast with ‘gamergate’ always looming over everything, nothing has made me more resentful of my fellow humans and despairing of the world we live in than stand-up comedy.

We need more female comics, BAME comedians, comedians of all backgrounds, abilities and sexual orientations. And it’s not like we aren’t out here, smashing what we do. But we are either so limited by an archaic, misogynist system of being the ‘token whatever’ that it’s impossible to break into, or we manage to crack that but then become so downtrodden and fed up that it’s easier to fade back into the ether we came from.

One introduction from a particular scumbag of an MC basically encapsulates my experience with stand-up comedy; “you’re going to love this next act, because she’s fit!”. Society doesn’t want to hear what I have to say unless it’s going to validate them wanting to fuck me. I’m sick of it.

So for now, I’m done. I’ve cancelled the gigs I don’t care about, and will honour the ones I already have booked in (some of which I know will be really lovely), but for the sake of my mental health and overall well-being, I’ve made the decision that I’m not strong enough for this fight right now.

I will be disabling comments on this blog, and also deleting any comments (positive or negative) on the Facebook post I share it to, because you know what? I deserve to have my voice heard for once and have you fucking listen. I refuse to have what I say immediately devalued and debunked by some whiney bag of testosterone, as is always the case when I try to call out blatant bullshit. This is my final fuck you.

Jemima Holly (Aug 2016-Jan 2017)

A wedding, more cats and a catheter. 2016 was fun.

As we race towards 2017, keeping all of our favourite remaining celebrities in mental bubble wrap, it’s that time of year where I like to reflect on how the past 12 months have shaped me as a person. Whilst typing this, my face is puffy from tears and I keep having to stop for more kleenex, safe to say it’s been a pretty overwhelming year for me. I don’t even know where to start, so…here’s what happened to me in 2016, in the form of spectacularly brainfarty bullet points.

 

  • I kicked the year off with not one, but two amazing hen nights. Both made me appreciate the amazing friends and family that I have, and I am so blessed to have memories that will last a lifetime.
  • I GOT FLIPPIN’ MARRIED! Miss Palfreyman became, well, Ms Palfreyman, because I decided that being defined by whether you’re married or not is a load of old misogynist bullshit. However, I had a super fun time marrying the crap out of my soulmate. We poured our hearts and souls into that wedding and did everything ourselves (with the help of our amazing friends and family), and I look back on that day with immense pride and love for everybody who made it such an amazing day for us. It all just zoomed by so quickly, the speeches were perfect, I ate six puddings in total plus an extra creme brulee, and because we are literally the best couple ever, we got back to the hotel, I threw up (because of too much creme brulee) then made the most of the giant double bath in the hotel by laughing about how we are the best at weddings and doing lots of farts. We also went on the staycation honeymoon of a lifetime 🙂 It was fun. Totally recommend. Would do again.
  • I bleached the crap out of my hair. It was super fun and I’ve explored being blonde-bombshell Jay, lavender super-hero Jay and silver sweetie Jay. I’m looking forward to experimenting much more and maybe going a little ‘Captain Marvel’ in the new year!
  • Two of my best friends in the world pursued fabulous lives abroad – I can only say it’s made our friendships stronger 🙂 here’s to making more fabulous memories, ladies!
  • I went back onto my anxiety/depression medication, which is possibly the best decision I made all year. In the new year I start my compassion-based therapy properly and I’m really hoping to be able to get on track with building my self-love and happiness.
  • I took up comedy in August, and now have gigs booked through to May next year! I felt that I had something to say and enough sass to say it with, and have no regrets – some audiences haven’t liked what I have to say, but when you’re trying to dismantle misogyny not everyone’s going to like it!
  • I became Godmother to the most beautiful little boy in the world, and can’t wait to teach him all about becoming a Pokemon Master and badass feminist.
  • We got a beautiful new fur baby and called her Tracer, and she’s just as much of an adorable shithead as her sister. She is tiny and does very stinky poos and likes to play “OH MY GOD RUNNINNNNNNG” at 3am, but we love her anyway.
  • Possibly most importantly, I finally had my surgery to treat my endometriosis.  This ended up being far more extensive than my last surgery, and they got most of it out this time, and stretched my bladder while they were in there. Recovery was slow and boring and there were some horrible stitches to take out, but I’m so excited to be pain-free for the first time in so many years. It feels very overwhelming, however, to have a new side of me to explore that I feel I’ve never been able to connect with, and I have an awful lot of soul-searching and thinking about this to do going into the new year.

So, for 2017, I’m excited to get back on course with my running, enjoy all the things my endo has denied me for so long, and most importantly, take more time for myself. Saying ‘no’ to the things I don’t want to do (even if it means turning down the odd bit of pocket money) and clearing time for myself. I’m going to aim take myself on a date and enjoy my own company at least once a month and stop worrying about making everybody else happy. If 2016 has taught us anything with the constant onslaught of death and disaster, it’s that we need to enjoy life while we can and make the most of every opportunity, which is exactly what I intend to do.

All I Want for Christmas…

All I want for Christmas is a good, hard shag.

 

There. I said it.

 

I am an endometriosis sufferer. And I am horny. Imagine having been through so much vaginal trauma that just getting turned on is enough to send a spasm of severe vaginismus through what feels like your entire lower body. Imagine feeling so insecure that you’re unable to sexually satisfy your partner, that you have to use every ounce of energy to combat the bomb of ingrained misogyny and jealousy that explodes every time he hangs out with a female friend, no matter how much you trust either party.

 

In the cinema, when couples swap sideways glances or a cheeky knee-squeeze during a particularly steamy scene, I’m busy fighting back the prickle of tears. How I wish someone could pin me against the side of the shower or let me hop on in the back of their car, rather than having to discreetly remove my pantyliner-filled undies (stealing a quick glance to make sure I’m not already bleeding too much to ruin the sheets) and follow the same careful routine. Now don’t get me wrong, my partner knows how to make me come. Hard. And we enjoy a great non-penetrative sex life. But endometriosis isn’t the kind of condition that allows for a steamy, spontaneous rendezvous…even just the concept of plain “vanilla” fun seems like an entire layered sundae with all the toppings when you’ve not been able to enjoy it for years.

 

I get that this is all very ‘woe is me’ and whingey…but please, let me have this, guys. I’ve spent the last four and a half years since my diagnosis trying to convince myself that we ‘endo-warriors’ CAN live life to the full and get what we want out of it…but you know what, I actually feel pretty cheated. When I’ve had examinations, operations, consultations, the primary concern of the doctor has always been how often and how severely I’m bleeding, day-to-day pain, fertility. Now, don’t get me wrong, all of these are extremely valid concerns; but not once has ANY doctor ever expressed genuine sympathy or concern at my lack of sex life, and society makes me feel like it would be shallow to make an issue of it. “It’s not all about sex, you know!” But just like anybody with a chronic pain condition has a right to a pain-free life (still waiting for that!), or how anybody who is infertile has a right to have IVF on the NHS, I believe that sex is another basic human function that we all have a right enjoy (with a consenting partner, of course!), and I intend to fight for it. I’ve been waiting two years for the surgery that will help me to enjoy my life again, hopefully for longer this time, as it’ll be far more extensive. But there’s still no sign of it happening this year. However, having done some initial research on various IVF support forums, I’m sure if I were in the situation that my husband and I had wanted kids, I’d have had more success getting far more expensive fertility treatment during that time than I have done waiting for the relatively ‘routine’ procedure that is a laparoscopy.
This is why initiatives such as the vaginalogue are so important. It’s time for the world to wake up and realise that women are deserving of both quality of life and sexual pleasure. Me, I’ve made yet another appointment with my Doctor and I’m still holding out in the hope that maybe I’ll be getting more than just a lump of blood-clotty coal from Santa’s sexual sack this year!

Something I’d like to ‘weigh in’ on.

I started this blog in my head with the line “my weight and I have always had a complicated relationship”. However, the more I wrote, the more I realised this is a total lie. I’ve realised that it’s actually dead simple. I’ve had a certain level of hatred for myself from a pretty young age, end of. Apparently “hate” is a strong word, but I don’t use it lightly.

My earliest memories of having something “wrong” with me are from year 4 in primary school – I was eight. Sat on the see-saw in the park, my friends were comparing their weights. I noticed that they all seemed to weigh around five stone – even the taller, slightly bigger girl of the group quietly muttered that she was also five stone after listening to her peers. I remember wondering why she had so evidently lied, and the realisation suddenly dawning on me that to be big was somehow shameful. When it came to my turn, I looked down and mumbled something about not knowing. But the truth is that I did know. I was six stone and two lbs. And I now knew that this was “wrong”.

Yes, I was a fat child. “Puppy fat” – you might say (another seemingly sympathetic phrase I’d hear for years from family, but that hurt me nonetheless; I wished I could be a lean, lithe kitten or striding gazelle like my friends). And the playground taunts echoed this. “Fat, chubby boffin!” they shouted. In retrospect what worries me most about this is that even at that age, the boys seemed to know already that it was somehow okay for a girl to be clever if she was ‘pretty’/skinny (like my conventionally pretty friends and peers who got just as good if not better test scores than me), but God forbid you be intelligent AND fat. Something that stuck in my core being as the girls in my secondary school science class waved their test scores at each other proudly, and I lowered my chins in embarrassment.

By the time I hit puberty and the weight fell off, it was too late and the label had stuck, with my peers and also within my own deep down ingrained beliefs about my identity. I knew that certain clothing wasn’t meant for me, and that I should keep myself to myself for fear of being ridiculed.

I’d lie in the bath and imagine how much better my whole life would be if I was skinny. I’d clutch my tummy in my hands, that little pouch that EVERY woman has (don’t let the airbrush fool you!) and wish I could just chop it off with a knife. I’d cover it every time I looked in the mirror and internally hiss at my reflection in every shop window. Exasperated and unable to chop bits of my body off, I settled for cutting my wrists instead.

I’d spend a significant proportion of the pocket money I earned from teaching piano to the children of our family friends on the latest issue of every teen and women’s magazine in a fruitless quest to find the secret to becoming “perfect”. I’d send the rest on whatever “miracle products” they were selling that week, and cry with exasperation when some expensive bullshit potion didn’t make my legs look the same as the airbrushed model, or the overpriced serum didn’t tame my ‘Hagrid hair’.

So now, in my mid-late twenties, with a renewed bullshit detector courtesy of heroic women like Laura Bates and Caitlyn Moran, I feel overcome with a desperate, seething anger. How DARE this bullshit society of ingrained misogyny rob me of so much of my childhood and teenage years? HOW has this been allowed to happen?!

When I was running lots, I lost a lot of weight and was constantly told how great I looked, affirming my deep down core beliefs that I tried so hard to smother that “skinny” gave me status. Having put on a few pounds again recently, I’m trying harder than ever to just love myself for who I am. But it’s HARD. And I hate that it’s hard.

Whereas I stupidly, naively and now-ashamedly used to enjoy unwarranted comments about my figure, or when guys would chat me up without taking their eyes off of my chest (finally – some form of attention I’d send most of my teenage years craving), I am now blaringly aware of eyes on my chest of I happen to pick a lower cut top. Drafting this on a train, I am aware of every jiggle, and of the man who sat quite deliberately opposite me to stare, and while I wish I was the confident woman who would shout “fuck you, I’ll wear what I like and you should leave me the fuck alone for it”I am simply burning with the shame of being reduced to a mere object.

Knowing what makes us feel the way we feel and having our eyes opened to bullshit should feel liberating, like we can take on the world,  but in reality I feel overwhelmingly upset and oh so angry at how easily we have spent our lives being brainwashed, fooled and dictated, and how this new-found awareness and knowledge hasn’t simply flicked the switch that closes off the fucks I have available to give.

My relationship with myself is now more complicated than ever as I struggle to break free of years of media brainwashing whilst also knowing there are so many others who feel the way I once felt – and still shamefully feel – constantly comparing and judging myself and everyone around me in an endless circle of self-destruction.

But, unpleasant as it may be, it’s time to wake up. It’s time to be complicated. It’s time to be angry, so that for future generations it is not complicated – it is crystal clear. You, and you alone own your body. Not the press, not the patriarchy, not the man who yelled about your dress on the bus. And you deserve nothing but to feel at home in your own, unique skin.

How my honeymoon saved my marriage.

Okay, so the title might be a little exaggerated, perhaps dramatic. But stick with me here. I have managed to begin married life by writing a blog post without a pun-based title, surely that negates any click-bait-creating shame I should be feeling?

So, if you hadn’t already guessed, I got married towards the beginning of the month, and am just returning from a state of timeless food-coma bliss to social media and the ‘real world’. I’m not going to fill you in on a brag-fest of “oh it was so magical” (it was) or “look at all these cool things we did” (they were pretty awesome), as those of you who know us well enough to care will have seen the pics and updates on our social media accounts by now! What I WOULD like to talk about today, is how the time off I’ve just had with my husband (!) has impacted my view of my own world and work/life balance.

The lead-up to the wedding was chaos. Not due to the wedding itself, but the amount of work I was adamant I’d fit in before we went. I was risking burnout on multiple occasions, regularly working 14hour days going from 7 hours of school teaching to a couple of hours of private teaching before driving to a rehearsal or gig, not to mention squeezing in what little piano practise and physical activity I could in between or en route to different engagements. Such is the life of the self-employed, where sick pay and holiday pay are a distant fantasy enjoyed by people who don’t have to be sucked into a spiral of workaholism to survive. I saw very little of my fiance in the immediate run-up to the wedding, and we snapped and argued with each other on multiple occasions, but told ourselves it was worth it for the wedding and holiday time we wanted (and in a way, it was).

Now, my work schedule isn’t always so hectic and I usually get at least one quieter month over the summer period where I at least don’t have work in schools, but I am guilty of always being ‘on the go’. I don’t remember a time where I didn’t feel like I should be ‘doing something productive’ – it almost definitely stems from four years in a conservatoire where, even if you’ve already done six hours of instrumental practise that day, you guilt-trip yourself whenever you walk past/listen to/read on Facebook about somebody practising, that if they’re practising RIGHT NOW, you probably should be, too. Allow that constant feeling of guilt to provide you with some OCD tendancies to accompany your ongoing depression (there was a long period where I couldn’t face my flat looking anything less than a show home, and my days were divided equally between constant, unfocused practise and constant cleaning and that was it) and you’re setting yourself up with some long-lasting habits, despite an excellent course of treatment and CBT. The joy of technology means I can, and therefore in my mind SHOULD, be constantly checking for and replying to emails, looking for ways to market myself, advertise concerts, and if I’ve time for anything different, then obviously I’m not working hard enough. And if I’m not WORKING, then I won’t be getting paid or creating the potential to be working/getting paid MORE, and there the spiral goes deeper and deeper. Another factor in my mind is my illness; spending ten years being told your pain isn’t as bad as you say it is leads to huge self-esteem issues. I spent a lot of my young adult life feeling like a failure that every other woman could survive this ‘normal’ pain but it was crippling my ability to be the best I could be; and that has of course leaked into other areas of my life. Am I REALLY exhausted, or am I imagining it? Am I REALLY over-stressed, or am I just being a drama queen? Cue disappointment for Cal when all he wants to do is watch a couple of hours of Netflix or play a multiplayer game, and I feel unable to commit to any of it because of my constant need to be in work mode.

So where am I going with this? Well, I was so burnt out in the run-up to the big day, that I decided that if I was going on holiday, I was going to do it PROPERLY. Even though we were only going to be out of the country for five days, we had booked three weeks of holiday, and I was going to be ‘off the radar’ for ALL of it. No phone, no Facebook, no “oh I’ll just reply to this quick work email” – NOTHING. I even dug up a clunky old phone and topped it up with some pay-as-you-go credit so that we could message family etc without me needing mine. I did all of my months’ budgeting ahead of time, tied up EVERY loose end and, when we left for our home town the Saturday before the wedding, I left not just my diary and my lists, but all of my productivity-related guilt shut in my office.

And what bliss it has been. Not just through giving up Facebook – lots of people write about how they gave up social media and it changed their lives – that isn’t what I’m talking about. I DID have a sneaky hop onto Facebook to catch up with my 200+ notifications and tags the day after the wedding, and to put up a post to thank all of our friends and family for their wonderful gifts, and one or two sneaky peeks over the course of the honeymoon – but it was never something I felt compelled to do, or that I needed. No, the main wonderment for me is realising that I DESERVE time to relax, how great it makes me feel, how much closer I feel to my husband as a result (we were a pretty awesome couple anyway, but even he has commented on how much more of a great team we are now that I’ve chilled the f- out). By leaving all of my stresses shut in the office, I have learnt that

– The world continues to turn, even when you are off the radar. You may be used to being the person that people rely on or come to with questions – they will have just had to sort themselves out, just like you do, and guess what – your inbox WON’T be full of doom and gloom on your return!

– Allocating time to reply to emails and messages, like I have done today whilst reintroducing myself to some form of productivity before my return to work next week, and then switching off (any more that ping in can wait until next time) means you give your full focus, and leaves you proper time to be able to do whatever else you want to do.

– You DON’T have to guilt-trip yourself for having fun. I’ve had the most selfish three weeks of my life and adored it. I’m returning to ‘real life’ knowing who is number one and what my priorities are; why shouldn’t they be me and my husband/home life.

-You WON’T get obese as soon as you log out of ‘My Fitness Pal’ or whatever app you use. Having so obsessively counted my macro goals and measured out my physical activity, run pacing, with the intention of keeping my body and weight absolutely just-so, I can confirm that after three weeks of constant takeaway (I’ve cooked literally twice, and even then it’s not been healthy!) and zero physical activity (well, zero gym/swim/running at least…!), although a couple of skirts are a little on the tight side, I look and feel as awesome as ever, if not more so, and am certainly not the Mr Creosote character I’ve been living in fear of for most of the last year. I’ll definitely be allowing myself to relax a little on the chocolate cake-front once I’m back into my routine!

This holiday, the first of its kind, has changed my life and my outlook. And for the first time I will say it in a non-joking way; despite it saying it up there in my description at the top of this blog, alongside nice, hip things like “peanut butter conoisseur”, I AM a workaholic. And if I carry on with the mindset I am all too prone to, I WILL be on a route to self-destruction, which would inevitably take my relationships with it. I am not afraid to suggest that yes, this honeymoon may well have saved our marriage, a good number of years in advance I’m sure, but nonetheless, my behaviour has had the potential to hurt others as well as my self, and this ends now.

The challenge now, of course, is making sure that I remember all of these things and carry them with commitment into my life going forward. No amount of recognition in any area of my working life could come close to substituting the immense personal satisfaction I feel right now. And I say this next bit directly to Callum, my husband. We made our wedding vows to each other, but further to this, with my newly found confidence, I promise you that you will NEVER be second to my work. The world keeps on turning, and that email, that photocopy, that print job, will ALWAYS be able to wait. I will never put you at the brunt of my stress, or put myself in a position where I don’t have enough time for you, us, or the personal projects that fill us with passion. I would rather turn down that extra twenty, thirty, fifty pounds per week than be too tired to appreciate, look after, or enjoy being us; a toast to health, wealth and happiness? As far as I’m concerned, it will always be the case that “two out of three ain’t bad”. Cheers!

Wee have a problem.

It was with a cold sweat that I stepped into the foyer of Oldham Royal hospital today. Earlier I had laughed as my friend dropped me at the metrolink stop and asked me how I was feeling – “I think there’s still a wall up against it in my brain” I chuckled with slightly hysterical breathlessness. I was on my way for what I thought was a cystoscopy under local anaesthetic (for those who don’t know, that’s when they inject your urethra/wee-hole with local anaesthetic and stick a camera up there for a nosey). Just the thought made my insides recoil and my limbs involuntarily spring into a hedgehog-style ball for protection. I was referred to the urologist because some of my worst endometriosis symptoms this time around have been urology-related, and gradually worsening. It’s not a pretty disease to have. At best, I have to get up to pee so many times in the night that I struggle to function without my morning coffee (more on that later!), and at worst I shed a few tears when I’ve had to hold on for the loo and release a full bladder whilst feeling like somebody is harpooning my abdomen. When everybody is exchanging handshakes and ‘making the peace’ halfway through the church service on a Sunday morning, I’m legging it to the loos frantically hoping I’ll make it back to the piano in time for the imminent hymn as I can’t even last an hour anymore!

However, after some in-depth discussion of my symptoms and a bit of prodding/looking at my scars from previous surgery, the consultant made an interesting suggestion that has in all my years of seeing consultants and various specialist never cropped up; interstitial cystitis. And on further conversation and some follow-up research, I can’t believe it hasn’t come up before as today’s specialist agreed that I ticked every single box. It’s a poorly-understood bladder condition with no real cure (yay! another condition with no cure!) and I suffer from all of the symptoms, which you can read more about here.

Interestingly, one of the causes of this condition is damage to the bladder lining. I had quite a lot of endo lasered out from around my bladder last time I had surgery, and most of my pain radiates from around my (small and neat) scarring, and I didn’t really suffer with urology-related symptoms before my first laparoscopy, when I was initially diagnosed with Stage 4 endometriosis. Which leads me to wonder whether this is caused by ongoing irritation from my last surgery.

My specialist today was amazing, and really respectful of my existing condition. His reasoning for not wanting to perform a flexible cystoscopy was firstly that they could just as easily do it whilst I am unconscious for my upcoming endo surgery this summer; and then if they discover anything that they can do to help (stretching the upper bladder (bladder distension) can help relieve symptoms), they can do it there and then. But secondly, he acknowledged that with my existing condition even with the local anaesthetic I could very easily find a regular cystoscopy very painful, uncomfortable and/or distressing. Never before have I had a consultant, even out of the nicer ones I’ve seen, that proactively acknowledged that I live in pain. When I’ve been poked, prodded and examined before, the tears have always been greeted with a “well, you just need to relax!”, but today I felt respected and cared about as an actual human being rather than a lump of broken flesh. Bravo Oldham Royal Hospital – yet again proof that the ‘Centre for Excellence’ stamp is well deserved.

Interestingly, when reading up on this condition, one of the ways to help relieve symptoms is via a TENS machine. The arasys treatment that I currently go for twice a week, following an incredibly successful independent study  that I took part in, is basically a giant powerful version of a TENS, and since undertaking this treatment, the primary improvement I have noticed has been in my ongoing urology symptoms! It’s certainly given me a lot of food for thought and made me wonder how much of the comeback of the endo symptoms could potentially be this condition.

The worst thing about all of this, however, was the dietary advice the consultant today gave me. I very proudly told him how much water I drink each day, how I avoid regularly eating too much spicy/fatty/sugary food and generally eat and exercise very well. “What about your caffeine intake?” he asked. Back came the cold sweat, and I could feel myself filling with panic. “A…few cups a day?” I replied (read;4-6). I saw him glance at the empty costa cup I had brought into the room with me, and in turn I cast my eyes upwards. “Don’t test me, Lord” I inwardly screamed.

Suffice to say, I certainly found being told I can’t have coffee WAY more traumatic than the conversations with endo consultants about whether I can or can’t have kids. To my fellow coffee lovers, all I can do is apologise if the main coffee chains now go out of business. I guess I can spend the money I’ll save on takeout coffee on more arasys sessions, though?! Silver linings.  I’m also currently feeling rather sorry for the piano students I see before the academic day at 8am, and with a low sugar diet I’ll have to be doing some research into how I can energise myself at the beginning of the day.

So why am I sharing all this? Apart from the obvious trauma I need to brainfart out after being told what may well be the worst news of my adult life so far (if I’d known that hospital shop instant-costa machine coffee would be my last, I’d have left an hour earlier to get the strongest, deadliest java bar beauty en route instead!), I feel that it’s really important that my fellow endo sufferers are aware of conditions like this. The symptoms that I’ve been exasperatedly putting down to the return of the unwanted tissue growth could well be something entirely different (or hand-in-hand with said return), potentially caused by the type of surgery around the bladder that I’ve had in the past. Certainly worth being aware of and looking into if you are suffering from similar symptoms out of the blue and have had one or more laparoscopies. And also to praise Oldham Royal for bringing this to light and being so human towards me. I feel so lucky to have been referred to the teams at this hospital – today’s clinic was running AHEAD of time and all of the staff were so friendly and kind despite the NHS being under so much strain at the moment. I know that many don’t leave their appointments feeling the same positivity, and I hope that I can show you that you CAN and DESERVE to be understood and to have your condition fully investigated. Together we can break taboo and discuss our symptoms openly, increasing both awareness and understanding of all of these so often swept-under-the-rug conditions.

As always, if you have any questions please feel free to comment or drop me a message.