To my Cysters and Cyblings (Ovarian Cyst Care Rant)

 Yep, it's that time again kids! Sit down, shut up and settle in for another edition of Angry Bitch Rant Time. Today's topic: healthcare.

 Ten years ago my Mam took me up to the Queen Elizabeth Hospital with severe abdominal pain. I was squealing, crying and could barely move. I'd never felt anything like it. I was rushed through triage, saw several nurses and doctors, given morphine while waiting for the consultant - and found out that I'm allergic to morphine so no more of that for me! It was a chore just opening my eyes by the time the consultant got there, a nice young doctor who - I shit you not - was the spitting double of Arnold Rimmer; my Mam agreed so it wasn't just the morphine talking. He'd been called down to confirm that, yes, it was appendicitis and, yes, slice her and dice her, get the bastard out. But after a feel of my tummy he stopped and frowned, and asked me if I'd had pain like it before. I said I'd had similar pains a few weeks ago but they'd been on the other side so unless I had two appendices then it probably wasn't that. He frowned again, explaining that (thankfully) they wouldn't be whipping me down to surgery and I'd be kept overnight for more tests.

 As I was only 14 at the time I was taken over to the children's department and once my Mam went home at about 2am a nurse came in to chat to me and give me more painkillers. When I'd washed down the codeine and ibuprofen she asked if I'd had sex recently and immediately I panicked. Firstly, I was only 14 and thought I might get into trouble; secondly, could I be pregnant or have some horrible disease? But the scariest part... I hadn't, I'd been raped a few month beforehand. I didn't have the vocabulary at the time to tell her this so I just said yes and started crying. To her credit, she comforted me, reassured me I wasn't in trouble and she wouldn't tell my Mam, and rushed a pregnancy and sexual health test for me. Thankfully I wasn't but that just raised more questions. It wasn't my appendix, it wasn't pregnancy or and STI, so what could it be? Over the next couple of days I was kept in hospital (not a great way to spend my half term) and given I was on the children's ward I was bored out of my mind and surrounded by screaming kids. I got a lot of reading done but I was scared, in pain and bored while waiting for the results of blood tests and waiting for an ultrasound. 

 They day after my scan my best friend Devon came to see me. The visit did me the world of good, while it didn't stop me being in pain it was easier to forget about it - and she brought me Skittles. So far the painkillers I'd been on weren't taking the pain away but doped me up so much that I didn't care. We were right in the middle of giggling about Doctor Rimmer when another consultant, a white haired, well spoken, older man - late 50s I'd say - and without introducing himself or asking if it was okay, he bluntly said "lift your shirt please, I'm going to feel your stomach". That was uncomfortable enough on his own, not only because he pressed hard and his hands were cold, but because this stranger skipped introducing himself to the 14-year-old girl he wanted to have a feel of. In any other context this would be gross and criminal, but because he's a doctor it was just put down to poor bedside manner. Well, some people put it down to that, I put it down to him being a massive dickhead. After a feel and a frown he explained he'd looked at my scan and all he could find were ovarian cysts. Case closed, please cure me - right? I bloody wish.

 According to Doctor Rude "ovarian cysts shouldn't cause pain, it must be something else." I was discharged after this consultation and put on the waiting list for more outpatient tests for everything from digestive function, kidney function, food allergies. But when they all came back clear they decided they finally had a concrete diagnosis: it was Psychosomatic. 

 Calling it psychosomatic pain was basically a fancy way of telling me that they believed it was all in my head and that I must just be another attention-seeking anxious teenager. Yes, I was (and still am) incredibly anxious. Yes, in later life I was diagnosed with non-epileptic seizure disorder triggered by severe anxiety. The definition of psychosomatic pain is "pain disorders caused by psychological stress or anxiety and is characterized by chronic pain in more than one area and lasts from months to years". I'm not an expert by any means but looking back, if I had disclosed my sexual assault to them then I can see why they'd think it was psychosomatic, but I hadn't. As far as they knew I was pretty happy, if a little skittish, so I must be looking for attention. I would have happily let it go and tried telling myself that they were right, it was all in my head, if the pain didn't keep coming back.

 Every now and then over the past ten years I've experienced the same agonising, stabbing, burning pain. Unable to stand, unable to sit up, unable to move, sweating, shivering, curled up and crying. I've done all the right things, gone to my GP and gotten a referral to gynecology, and been told after most of those scans "yes, you have a sizeable ovarian cyst, it should go away on its own - just put up and shut up". A few years ago I was hospitalised again with suspected appendicitis, though insisted the whole time that I was just taking up a bed that somebody else needed, but they wanted to get to the bottom of it. I was seen by another male consultant who again, had an appalling lack of bedside manner; this time not even bothering to ask for consent or speak to me at all - instead he woke me up by feeling my stomach while I slept. Of course being touched by somebody with such cold hands woke me up and led to tears and panic, while he made a sub-par effort to calm me down and explain who he was and why he was there. He couldn't understand why I was so angry and shouting at him for just "doing his job". In the end I was transferred up to Gyno, crying the whole way out of pain, exhaustion and frustration. Yet again, it showed what I knew was there: a big fat cyst the size of a tangerine.

 I'm writing this now because I'm having a particularly bad time with them at the minute and although I know I probably should seek some sort of medical attention, what's the point? I'll just be told yes, it's cysts again, toughen up and go home. And I'm far from the only one who's experienced this sort of treatment (or lack thereof). So many uterus-having people experience pain with ovarian cysts, and so many other gynecological conditions that leave them in agony, but all they hear from their healthcare provider is "yes, it comes with the territory of having a womb, deal with it". Surgical removal of cysts is only considered when they're extremely large as many do just go away on their own, and I'm sure that others who've gone through the unpleasantness of one bursting... Our doctors need to be doing better. We need more research into non-surgical treatment for ovarian cysts. Yes, small ones are normal, many people will get them at some point, and they do go away on their own. But when you go through years of pain and all you're advised is to tough it out because nothing can be done, we need to find something to do about it.

 My experience is just another case out of many, with sans-uteri medical professionals refusing to believe the pain that we're in because it contradicts what their textbooks say.  There's no two ways about it, just because you have a degree doesn't mean you decide how much pain my body is causing me; and just because you've never experienced it personally doesn't mean that it can't happen. This is my body with its fucked-up ovaries and fucked-up other parts that is screaming out "I'm hurting, please help." So when it comes to gynecology, here's the bottom line:

The Importance of Self-Care: Theory and Practice

Afternoon all!

 Now it's been quite a while since my last post, it's seeming to be one thing after another lately. A mixture of tendinitis in my shoulder when trying to finish university work, preparing for a few short breaks, work, and now when that all seems to have settled down my health seems to have taken a rather bad turn. Over the past month I've been having (as of yet) unexplained seizures, mostly as it's been described to me afterwards as tonic-clonic seizures, and partial seizures in other cases. Having been back and forth to my GP and to the hospital in this time I'm having to wait until September for a referral to a neurologist; while I've made necessary adjustments to my own lifestyle in the meantime it's frustrating and honestly quite scary having to wait such a long time for a diagnosis and even then the guarantee that I'll get a diagnosis straight off. At first it seemed the most terrifying part of them was waking up, unable to speak and feeling weak all over, but now the worst seem to be those while I remain conscious but don't have control over my own body and motions. But as scared as I am I'm determined not to let it rule my life.

 In the past few years self-care has been very big on the feminist agenda it seems. Far from being a new concept it's great to see it making a comeback, but while it's often discussed as a wonderful notion it is one of those things that I know I'm not alone in finding very hard to apply to myself. I'm extremely guilty of, well, feeling guilty when caring for myself, I often feel as if I'm abusing the idea or using it as an excuse to be lazy. The right answer here should be 'even if I am, so fucking what??' but I tend to find myself panicking and the guilt piling up for doing so and even more for thinking in that way; I've found it to be a vicious cycle. Since I've been feeling the toll of these fits on my general health and well-being though I thought it was about time that I really made an effort with it.

 I feel as though it has had an impact on my relationship too. Paul has always had a very caring nature and for as long as we've been together he's really looked after me but because neither of us know what's causing it, when it will happen or what to do about it it's scary and very frustrating for us both. He's learning well how to cope with me though, going to doctors appointments with me, researching bits that he can and helping me with keeping a note of what happens during and after seizures. His workplace have been accommodating too,  letting him take the time off for the appointments or if we've spent the night at the hospital, and allowing him to keep his phone on hand to get in touch and see how I am through the day. One drawback though is that Paul says it makes him feel quite possessive doing this, especially when I was on a weekend away with friends and he just wanted to be sure I was okay; I've been doing my best reassuring him that I don't mind and I really understand both why he feels like that but also why he wants to be sure I'm okay. It can be horrible thing seeing someone you love ill in this this way and not knowing how to fix it - and unfortunately for us it seems to be me who does most of the being ill!

 I'm currently easing myself into a routine of self care and really hope to carry on with it even after I've gotten a diagnosis and hopefully something to control the symptoms, so here are a few tips that I would like to pass on as somebody who has struggled to get into it, I know I'm not the only one!

• Don't feel like a burden - you most certainly aren't!

 This is something I really had trouble with, possibly fall-out from past mental health issues, but to begin with I found it hard to accept help and allow myself to be looked after by Paul and other friends and family. I hated the fact that there were things I had to rely on others for, like making sure I'm safe during a seizure and caring for me afterwards; I suppose I felt guilty more than anything else that people around me were on edge because of it. What finally convinced me to change this thinking was the wonderful women I went with to Horton Women's Centre and those that I met there too. Being in such a safe, supportive environment with people I was so close to got me to thinking that they have no obligation to look after me but do it because they care for me and about my well-being. I've always verbalised my concerns and still tend to apologise after seizures but even with that compromise it's had a very positive impact on my own dealing with them as it takes at least one element away from my anxiety around them by not worrying so much.

• Know and respect your limitations

 Another big hurdle with my past experience of self care, not knowing or just flat out ignoring my limits. I often convinced myself that I was able to do more than I was doing and I could always do "just that little bit more" than I was and I'd be fine; not just physically but mentally too. When I had tendinitis I would still go into work with my arm in a sling, serving food on day shifts, cleaning the top shelves, serving as quickly as I could on busy Friday nights. At the time I thought I could give Wonder Woman a run for her money but looking back it really slowed down my recovery time. This time round it's taken getting injured at work during a fit to stop me, after the incident Head Office requested a note from my GP to say whether or not they thought I would be safe to continue working; when I went my GP said she didn't feel she was able to guarantee this, which I took as a bit of a blow because I really do enjoy my job and now I'm having to take sick leave. To their credit though, when it first began they were very supportive and accommodating of me, making sure that I wouldn't be working alone and would be only doing duties they felt I would be safe doing. Sadly in the end with the environment I work in it just wasn't safe for me, bars can be dangerous places, but I really did appreciate the lengths they went to to support me and eventually the message it sent me about having to accept that it was in my best interest.

• Treat yourself and eat well

 Treating yourself can take on many forms and I find it's a very important part of looking after yourself, whether it's a nice glass of wine, taking a long bath, having a weekend away, a small indulgence when you feel you need one can do you the world of good. However in the past I've had a lot of issues with my weight and body image and I've found I tend to get really, really hungry after seizures, craving carby, sugary foods. At first I'd be reaching for crisps or chocolate and it was very helpful, having that little indulgence to make me feel better after a fright. Now that I've adjusted a little more to the situation it has become easier to plan around this, get in foods that I know will do me best, giving me the energy boost that I need rather than just something to fill the void. However I have been determined to treat myself at least once a day, something "bad" for me (often a nice glass of wine!) so that I'm staying as healthy as I can but still allowing myself that bit of enjoyment.

 Another thing I've found very useful around food is to prepare meals in advance. As it gets later in the day I tend to feel worse so I'm trying to get into the habit of cooking when I feel up to it, or even daring enough to make a trip to the shops, and pop it in the fridge/freezer for I want it through the week. It's a good way to ensure that when you're at a low point then you'll be eating food that's good for you rather than reaching for whatever is easiest, but at the same time there's absolutely nothing wrong with the easy option if that is the type of food you get the best feeling from. Paul and I always have the deal that if I cook then he does the washing up, it's a system that works for us but lately it's not working as well; luckily he's very handy in the kitchen, not just at the sink, and has been cooking for us when I don't feel up to it. I try and do the same through the day and keep on top of the dishes, just to return the favour, but it always reminds me why we struck up that deal in the first place - I bloody hate doing dishes!!

Well looked-after!

• Keep yourself busy

Unfortunately the post-fit cravings have led to me putting on a little weight, along with the exercise I'm used to doing no longer being safe (if I can't have a bath by myself because of them then swimming is definitely out of the question). So I've been looking for other types of gentle exercise that I can do at home, finding something that works for me that I can enjoy safely. It can be quite stressful and at the minute I'm finding it hard just keeping busy. Daytime television can be easy entertainment as a one-off but after a few days it really starts getting to you. It's the best time of any to start reading all those books you haven't got round to, do those craft projects you got all the supplies for but haven't found the time for, take a walk, explore bits of your town you've never been to before. Finding a routine can be useful if you're that sort of person, I'm struggling to find one at the moment but I'm sure I'll get there.

 With Paul working, me being off on the sick and being off uni at the moment I'm finding it difficult even to keep busy. But it's giving me a bit of time now to get ahead on wedding planning, and if it's done now then it'll be one less stress later on! Doing it in my free time now gives me time to have all the details thought out, but I can guarantee that many future posts on wedding planning will include the phrase "If it's not done now then it will never get done!"


 While this is no means a definitive list and may not work for everybody it's what I'm finding the most useful at the moment. You may well see some updates to this list but for now I'm off to play Pokémon for a bit, my DS and I have become reacquainted over the past few weeks.

 Until next time xx