Some of you may have read in the past that I recovered from an 11 year eating disorder a couple of years back. These days, I like to think of myself as 'recovered' and really, I think I am, at least when it comes to my relationship with food. But as many therapists and books have told me, my eating disorder will be something that I may have challenges with on and off throughout my life. And in fact, I think it's something that challenges me on and off through the seasons.Read More
On Saturday I released a post on having a side hustle with endometriosis; I explored the impact endometriosis had on my past business ventures and career paths and how I'm now learning to work around endometriosis to still achieve my dreams. Yet in this post I also admit that having a side hustle with endometriosis is hard, and that my personality traits can make balancing the two harder.
Today I want to offer a deeper insight into what I have learnt about myself and my approach on this journey, and what steps I think you can take to find that balance, look after yourself and still reach those goals...Read More
One way or another, endometriosis took away my first business, my career in the creative industry and then my career in charity. I have dreams and endometriosis has threatened to destroy them at times, but through determination and balance, there is a way to achieve your ambitions and still manage the disease.Read More
I first met Lauren way back when we were both working in fashion. At the time, I was in the early days of being on the other side of an eleven year eating disorder and Lauren, I could see, was well in the heights of one. Lauren is now Head Chef at Aspragasm - a beautiful restaurant offering raw and plantbased dishes for everyone and anyone who walks through their doors. We had a long chat about how plantbased eating healed her relationship with food, supported her in overcoming her mental health challenges and taught her to appreciate self-love and self-care.Read More
Thursday night I woke up in a blur of pain, scrambled for some painkillers and when I was awake enough to realise the full extent of the pain levels I was experiencing - sobbed my heart out. Part of me cried because I felt ashamed that I was in this state, suffering so badly, when I am writing about living with endometriosis and thriving despite the disease. Yet here I was doubled over unable to control these seriously great waves of pain and heaves of heartache going through me.
So I wanted to be honest with you. I wanted to talk about this experience, but also share with you some of the other struggles I have when living with endometriosis, the stuff I'm afraid I'll be judged for. So here they are - the things I'm afraid to tell you about my life with endometriosis.
I've recently been wading through books that are creative, entrepreneurial, inspirational and feminist, so naturally, I came across #Girlboss by Sophia Amoruso. It doesn't matter if you want to be a multi-millionaire with a game changing fashion business under your belt, I think there are lessons we can learn from someone who hasn't necessarily had all the easy routes in life. Though I am a woman with endometriosis, I am also a woman who wants to have a happy and successful life. So this post explores how to be a #Girlboss with endometriosis.
This year has been an exciting yet hard year for me. I've really worked on going from pain to power. I've done my best to transform some of my life's more difficult challenges into some of my biggest successes and ways to help others. But, it appears that there are not many who see my life with the same rose tinted glasses.
In this post I talk about the challenges around how others view women with endometriosis and why we need to be met with strength, not sympathy, when battling this disease.Read More
Jessica Murnane is one hell of an endosister. Five years ago, endometriosis had left her bedridden, depressed and with cysts the size of oranges. Fast forward to today and with the help of a diet change, Jessica is now happy, managing the disease and even has a cook book on the horizon, One Part Plant. She is the driving force behind the One Part Plant movement, which we get to read more about later on and her incredible podcast, One Part Podcast, is inspiring people across the globe. Jessica has taken her experience of endometriosis and diet, using it to not only change her body, mind and career, but also to support thousands of other people in positively changing their diets, one meal at a time.Read More
Endosister Meredith is The Healing Yogi. Her website and Instagram feature beautiful nourishing recipes that help ease the symptoms of endometriosis and aid healing. She uses yoga to strengthen her body and is currently studying a BHSc in Nutrition and Dietetics, so she can further support women with managing endometriosis naturally.Read More
Anxiety, Depression, Endometriosis and Teenage Girls with Autism
When I was five years old, every night I'd drag my Sylvanian Families duvet into the bathroom (I know, totally gross right), spend a couple of hours heaving into the toilet and then would finally fall asleep on the tiled floor. I think my parents caught me a few times, but it was a regular occurrence that went on way longer than it should have. I was spending my nights in the bathroom because I was anxious about school the next day. I wasn't bullied, I had friends, I wasn't finding the work too intellectually difficult, but I was nervous as hell. I'm pretty sure it got dismissed as general kid weirdness and that was that. I don't recall going to the doctors about it or even talking to anyone about what was going on, it was just a thing I did. By the time I reached juniors, around seven or eight years old, I was taken out of school for a week after having a complete melt down in the classroom because I just couldn't build my cardboard robot right. OCD symptoms began creeping in - at bedtime, I would yank my duvet up as close to my face as I could and pull my pillows in around my ears and cheeks, to stop mosquitos from attacking me. Signs of body dysmorphic disorder were beginning to show as well. When my cousin had her ears pinned back, I too believed I needed my ears pinned and so, for a good while, I slept with a dressing gown cord tied tightly around my head, hoping eventually my ears would grow into shape. Now at 28 years old, I've not only come to peace with my body, but seriously, my ears couldn't be any closer to my head - I literally have no idea what my nine year old self was seeing.
When I hit the first year of Secondary School, I was studying three + hours a night, painstakingly ensuring my homework was perfect, and then spending the rest of the evening worrying about whether tomorrow would be the day that I'd finally get bullied, or I'd get into trouble with a teacher, or I wouldn't be able to answer a question. At the weekends, I spent Saturday cleaning my room, as I was convinced the work and satisfaction of having completed a chore, would bring me fulfillment and happiness and a sense of righteousness - I remember crying throughout, feeling incredibly low, unsure why my life didn't feel enjoyable. By Year 9, I had stopped eating - I was living off an apple and a diet coke during the school day, and then had a cup of milk when I got home and picked at my dinner until I was in a position to throw it away. School was a cycle of continuous burn out, I worked myself into the ground, producing top marks and being a best friend, and then collapsed into a confused and exhausted mess, calling in sick to give myself a day or two to recover. By my A-Levels I was using my exercise bike religiously for two hours a day and would ensure I didn't eat on a Friday so I could drink a 20cl bottle of vodka that evening and not be able to stand up by the end of it, but still be skinny.
While now I am able to understand my mental health issues, reflect on them with and even step back from them if I am lucky, they have not left. Only this year I was being persuaded by doctors to take medication, was seeing a CBT counselor and a psychotherapist, attending mindfulness classes and unable to work full-time. My recent and conscious struggles with endometriosis only exasperated my mental health issues, yet with the unstable hormone and pain levels that endometriosis brings, I can't help but wonder whether there is more of a physiological impact on our brain-chemistry we are unaware of, that is affecting our well being.
What I am getting at is, these childhood tendencies don't just disappear. They grow as we do and sometimes, they become bigger. This week I attended the Mental Wealth Festival, hosted by CityLit and Books Beyond Words. My interest fell on areas such as depression, anxiety and vulnerable groups, partly due to my background in these fields but largely to do with the psychological challenges I see so many women with endometriosis face. Sandra Walker, one of the main faces of the Mental Wealth Festival discussed how early signs of childhood trauma are going unnoticed by parents, schools and society and Sarah Kendrick talked about the need for a mental health practitioner to be present in every school, to allow children to begin talking about everyday anxieties and bigger issues, in order for healthy mental health practices to develop at a young age and so we can recognise symptoms earlier.
More than a third of teenage girls suffer from anxiety and depression. How many of them are living, like I was, undiagnosed with endometriosis for seven, ten, twenty, thirty years - as so many of us have? How many of them can't work out why they always feel ill, why they're always tired, why they can't keep up with their friends, why their periods floor them for three weeks out of the month, why, unknown to them, their hormones are leaving them feeling suicidal? And how much is a possible undiagnosed chronic condition heightening the severity of mental health issues that have gone unnoticed in childhood, or indeed, are now causing them in adolescence?
At the festival, I attended a talk led by head teacher Sarah Wild and students of Limpsfield Grange School, a boarding school solely for girls living with autism. It turns out, autism is an area where yet again, females go unheard. Girls are frequently undiagnosed for years, leaving it until they are teenagers suffering from add-on mental health issues as a result of going for so long with a condition that they didn't understand. Sadly, many have never been diagnosed, resulting in adults who are now living not only unknowingly with autism, but with ongoing severe mental health issues like depression and anxiety.
The students and head teacher of Limpsfield Grange, frustrated about the lack of literature for girls with autism, have co-written M is for Autism with Vicky Martin. The book explores the life of a teenage girl, recently diagnosed and dealing with heightening states of anxiety as she reaches puberty. I've wondered before, in my work with homelessness and with female survivors of sex trafficking, what the impact is of endometriosis on these young, vulnerable groups, and if it is getting recognised at all? And then, whilst listening to the girls talk about the anxiety they feel when facing boys, crowds, homework and interestingly, not being listened to, I found myself wondering again - if these girls are going without autism diagnosis because society isn't paying enough attention, then how on earth would they get an endometriosis diagnosis?
1 in 10 women have endo and it's not a picky disease, it has to be affecting those with learning disabilities and mental health issues as well. I found myself not being listened to, being dismissed, being told it was nothing more than a niggling pain, and I'm a white woman living in a free society where I can voice my reproductive health concerns pretty openly, and I have no learning issues holding me back form communicating these concerns - yet I still wasn't diagnosed until I was 24. In addition, getting the right treatment is an ongoing battle with the need to be assertive and able to understand the treatment options available - are these girls' and womens' carers and families aware and able enough to support them in navigating this complicated system, if the girls themselves aren't?
What are we doing as a society to help girls recognise the symptoms of endometriosis, understand and manage the disease at a young age and get the right treatment? There must be hundreds of thousands of girls out in the world, suffering alone, enduring years of physical and mental pain, only to be diagnosed twenty years later, when the impact of this suffering has already dealt hefty blows to their mental well-being. Surely, with conditions such as anxiety and depression being so prevalent amongst teenagers, we should be looking to make known the conditions that can start when puberty does, and put the right support in from the beginning, so these girls don't have to suffer for decades at the expense of their physical and mental health. This information needs to be accessible to teenagers, teachers, school nurses and school mental health practitioners, so ignorance doesn't lead to neglect or misdiagnosis. Importantly, the materials should also be helpful and not fear mongering, and tailored to different age groups and needs. Children with autism can often become incredibly anxious about health issues, especially if they don't know what's going on, so it's essential that the information provided is clear, simple and as reassuring as possible, in order to empower the girls, rather than frighten them.
The girls of Limpsfield Grange are living everyday with autism and anxiety, yet confidently told us how they manage it - from animals, to walks, to bubble wrap apps (really), they have worked out a way to live their lives and cope. Living with endometriosis doesn't have to be any different, but we have to give them the knowledge and the power to be able to do this in the first place. If we are serious about changing diagnosis rate and the quality of life for women with the condition, and indeed, the overall mental health of the population, then we have to also reach out to the generations to come and the harder to reach communities, who don't have a voice or an awareness of the condition at all.
I'd like to suggest that we take a leaf out of Limpsfield Grange's book - if the resource isn't there, then let's create it.
So I managed to rope my partner Chris into writing a little about his experience of living with someone who has endo. He has been such a solid and stable figure of strength throughout the past few years as my symptoms have worsened, he makes my life so much easier and doesn't complain or express any difficulties for the changes he's made to his life to accommodate my needs. I am eternally grateful to him for the love and kindness he has shown me, so wanted to shed a little light on his own feelings, what helps him and what he feels makes a difference to me, so that other couples can draw on our experiences and maybe use them to help with their own.
Endometriosis can have a big impact on our day to day lives – the fairly strict diet that Jess follows to keep the pain manageable limits where we can eat, and puts a cap on how much coffee we can drink, which is one of our favourite things to do together - although that’s perhaps not a bad thing! When the pain or mental health related symptoms are bad we may have to cancel plans and stay in and watch movies or something, which again, may not be a bad thing but is definitely an impact that endo has.
On a more personal level, it can affect our relationship with each other. I have a very playful side and when Jess is feeling unwell or in pain, she is often not in the mood to be silly with me and I can take this personally and sulk about it! Another way endo affects our relationship is in the bedroom. As many endo sufferers know, sex can be painful and this puts a strain on our sexual relationship. It’s hard to know what is going to hurt, and impossible to know when it’s going to be worse – so you have to be prepared to have a very stop/start sexual relationship and like most things regarding endo, be thankful when it’s good and be patient when it’s not.
Longer term, endometriosis may still have a big impact on our lives. We don't think we want children, but we understand if we ever did decide to go down that route, that we might have problems with infertility or just have a tougher time getting pregnant. It's a big issue for many couples and in some cases, the biggest, we're lucky that having children isn't a priority to us so it's one less thing to worry about. These thoughts lead me to further thoughts about our future… will we go to the hospital one day for a routine scan and find something more serious, like major organ adhesions or ovarian cancer? I know that the chances of these are very very slim, her adhesions have always been minimal and the overall risk between cancer and endometriosis is low, but sometimes it's hard not to think about these things. Occasionally I'll worry about endo developing on her lungs or her brain, but I know this is extremely rare and I'm just being paranoid, but of course, these thoughts naturally cross your mind. A genuine worry I have is whether she'll develop heart problems just from the stress of the condition. I don’t want anyone reading to be scared by this, these are extreme thoughts with a very small likelihood, but they are real thoughts and are good to discuss and have out in the open.
The challenges for Jess are obvious to anyone who knows about endometriosis (and for anyone that doesn’t, I can recommend a great site – www.thisendolife.com). They include things like fatigue, challenges with mental health and positivity, pain and being limited in what she can do. But there is a secondary, albeit less severe, set of challenges that affect the people around the sufferer. For me the main one is probably patience. As endometriosis isn’t visible from the outside, it’s difficult to remember in the moment. I can mistake Jess’ fatigue and bad mood for apathy and take it personally; having to remind myself that it isn’t something she has complete control over. Also, being around someone who is down a lot takes its toll on your mood too. It can be exhausting trying to be happy for two people, and when that person reacts to your moods, it puts pressure on you to be happy and not have any complaints, just in case you make them feel worse.
There are lots of things you can do to support an endo sufferer and make their lives that bit easier. When Jess is badly fatigued I will get up and make breakfast, make tea, turn on the shower, open the curtains and try and make that first part of the morning as easy as possible. Due to the nature of my work, I’m often home first, so I will cook dinner, go to the shop, or clean the bathroom/kitchen/floor/whatever so that she can rest when she gets in and prepare things she needs to for the following day. Associated with this fatigue is bed time – I now go to bed a lot earlier than I did before, and although we have met in the middle regarding bed time, I do feel I notice those few hours missing from the day. I also see my friends less than before so that Jess can keep a good routine of going to bed early and being well rested. Most important is just being around to cuddle, make tea, and answer the door, things like that. Some tasks she will never let me do, so you can help someone with endo by just taking away some of the stress and pressure of life by doing as many of the mundane tasks as possible.
I appreciate Jess’ honesty about her situation so I have a clear idea of what’s going on and know that we are both talking sense to each other. Something invisible like endo and other conditions need to be verbalized because that’s the only way that people on the outside can see it and understand – it definitely makes living with an endo sufferer easier.
Having a partner with endometriosis will obviously differ greatly from person to person – a defining part of the condition is its seemingly random and endless list of related symptoms and malaise – so I can only relate it to my experience. There are challenges that come with living with someone in constant pain, and in maintaining a relationship with someone who’s mental health and libido are in constant flux - but really Jess and I are BFFs, and what we lose through endo, we make up for in our strong and unique relationship. We are on a journey together and learning how to overcome this condition, and all the time growing our relationship and gaining new strength and resilience. I’m also learning more about women’s reproductive health than I ever thought I’d need to know and I can talk about periods to anyone. We have it really easy in so many other aspects of our relationship - some people fight or have power battles, but we've been good friends for years and have never had that problem So although we may have the difficulty of endo, it's all relative and everyone has their share of challenges in life. Endo doesn't change how happy we are as a couple.
Firstly, my sincere apologies for disappearing off the face of the endo earth. I enjoyed recovering a lot. Too much, perhaps. I just wanted to give a bit of an overview about my second lap experience, not necessarily for the people out there with endo because they'll know it all too well, but also for those who aren't aware of the procedure and to generally give an update, as it's been so long.
My op was 5 weeks ago today, at a specialist centre in London. I was allocated a morning slot, so I needed to arrive at 7:30am, which for those with chronic fatigue know, is hard work. The night before I stopped eating at 6pm and drinking at midnight, which was a mistake on my part, after passing out in my prep-op, I mixed up the times - I could eat until midnight and drink until 6am. My heart broke a little when I realised this. By 1am I was thirsty, by 2am I had a thumping headache and my mouth was dry. I drink a lot - like seriously a lot, maybe more than I should judging by my number of loo breaks a day, but I am constantly thirsty (yes, I've been tested for diabetes several times). My boyfriend has never seen anything like it. So when we arrived at the hospital I was tired and dehydrated and panicky about not having drunk enough water in the past 8 hours, but I was fine enough, I was determined not to be one of those patients who let the entire waiting room know they're irritable and shout at the staff every half an hour (apologies if that's you). Our waiting room was shared with the rest of the pre-op assessment department, and we had some vibrant and lively guests spend a few hours with us at a time, whilst those waiting for surgery trickled down. By 11:30am I couldn't wait any longer and begged for some water, they said I wouldn't be seen for a while so I was allowed just under 100ml, which was gone in a gulp. I felt like I was in a desert - all I needed was to start hallucinating, which I was sure would come.
Finally, I went down at 3pm, my consultant apologised for my wait and kindly put me on a dehydration drip when I explained my water drama. I went through the usual panic I'm sure most people feel, as they put in the needles and the oxygen mask on, I was nervous about feeling so unwell from lack of water and fainting from panic like the week before - I didn't want that to bring the surgery to a halt. However, I went down without even realising and I awoke to a girl whom must have been very confused as I took her hand seriously and told her how pretty her headscarf was. After some morphine, I was transported in my bed to the recovery ward, where I realised my throat was excruciatingly sore and my uvula (the dangly bit at the back of your throat) was double the size and length and was sitting on my tongue, which made me feel like I was constantly on the verge of choking.
I had to pass urine before they let me leave, and for the first time in my life, I could not. Sometimes I'll go three, four, five times before leaving the house, because I have to go so frequently, yet this felt impossible. My partner wasn't allowed to come in and see me, so I text him through the wall whilst drinking cups and cups of water until my belly swelled up like a water balloon. Eventually, at 8pm, just before the cut off time for an overnight stay, they let my boyfriend in and I relaxed and was finally able to pass the smallest amount, albeit mixed with blood.
We got an uber home, and ironically had a cab driver who turned corners like he was in a racing car, chatted incessantly and ask non-stop details about my operation, even though to me, it was clear I was struggling to talk and going a shade of grey. When we got out, I had to sit on the pavement and put my head between my legs - we weren't sure if it was the car journey or just coming round from the operation, but suddenly I was exhausted, faint and slurring my words. We got into bed and I slept on and off.
My recovery has been relatively stable but slow, and I'll leave that for another post because I'd like to go into detail about some foods and supplements that can really help with the healing process. I'm feeling really lucky to have been so mobile literally a day or two after the op and having been able to return to work within two weeks, I know for some it is a slow process back to normality.
I don't know the ins and outs of the operation, as my appointment is not until September, but I am thankful that they only found endometriosis on my pouch of douglas, which is the cavity between the uterus and the rectum. The doctors and even myself had come to fear that what I had was more extensive, that there was potential for deep infiltrating endometriosis, but it would seem I'm one of those cases with very little endo, but lots of the symptoms! And even though there are the obvious cons to that, I am relieved I am not riddled with it yet with no signs, because that could lead to further complications.
Without meaning to, I took 5 weeks off from This EndoLife. With recovering and then moving back into work and trying to organise my sister's hen and prepare/attend her wedding, I've just not had the mental capacity, which I apologise for. I've struggled to keep this blog up to date since beginning, due to my health issues, so I'm endeavoring to change that now I'm on the road back to health, and I hope I can support you to do the same.
This sounds like a depressing title - I guess it is, but it's the truth. Endo comes with obligatory situations of inconvenience, embarrassment and humiliation. They come in various forms and levels, ranging from staining your own clothes/furniture/office, having inconvenient and badly timed stomach issues, falling asleep in places you really shouldn't because you literally can't keep your eyes open or locking yourself in the office toilets for an abnormal amount of time because you just can't stand up.
Today, I entered a new realm of endo-humiliation. I passed out in my pre-op appointment and not only did I pass out, I proceeded to wet myself whilst in my unaware state of unconsciousness.
The specialist centre have a questionable admissions unit and there was an error on the waiting list, so I should have had my lap a little while back but had no news. I got a call on Friday to say that my date is Tuesday 7th, a week and three days away. I couldn't push another op back, so I had to take it. This half of the year, there really isn't a good time to have an operation, so this was better than in the middle of the three weddings I have fast approaching. This does mean that I need to be recovered enough to make my sister's hen do (which I'm still organising) 11 days after. It also means that I need to try and create/edit/schedule enough content on my two websites to cover the two weeks that I'll be a bit out of action. I also need to suddenly try and find a seamstress and have my sister's bridesmaid dress fitted and tailored, as it'll now be too late to do that following the op. Plus I need to make sure I have finished what needs doing at work before I am off (we have two training dates coming up and three end of year reports, so lots to prep for!). On top of that I have a big professional appointment tomorrow that has a lot riding on it, a deadline for Friday on another project and some work relating to a new exciting EndoLife venture that ideally needs to be done before I go in for surgery.
That's just the things I need to do. I have three social 'appointments' at the weekend because I've been trying really hard to stop isolating myself and start seeing people again. I also want to start the diet I've been given by my nutritionist friend, which will help me recover and sort out the other issues going on in my body like excess hormones, bad bacteria and a weakened liver, but I don't know when I'll fit in the shopping and planning for that now. We had anticipated I'd have more notice so we could get started on it and prepare in advance. If I wasn't struggling so much with fatigue, I'd stay up late a few nights this week and sort things, but I'm battling so hard to stay awake as it is and when I'm really tired I cry all day and quite honestly feel a bit (or a lot) suicidal. Anyway, this is what happens with endo. You're at the mercy of the hospital appointments and your symptoms, and you have to try your best to still achieve the things you want to achieve, enjoy life and stay well. It's a serious juggle and it's bloody inconvenient. It means when you should be doing your best to relax and get well, your most likely running around and getting stressed. Such is life.
So my pre-op, which they forgot to tell me about on the phone, was the 1st, so I had to squeeze that into my diary as well. As I walked in to the hospital, I was trying to find a seamstress to sort this dress out, whilst texting my sister about it all. Minutes before this, I was on the train and writing up a proposal for the EndoLife project I mentioned I'm working on, before that, I was running out of the door whilst on the phone to an old colleague, asking their advice on the big professional meeting I had the next day (which I only found out about hours before). That morning I spent 3 hours trying to finalise things for my sister's hen and then rushed through editing posts for SoulGraze and scheduling their release dates. I walked into the hospital feeling no more stressed than I usually feel, but still acutely aware of all the things I needed to do still.
I got upstairs, made myself known and took a seat in a seriously dingy waiting room with stained floors and a crackling TV showing an overly made-up male judge putting down some innocent civilian. I tried to block out the noise with relaxing music as I read through material for my meeting the next day and about 10 minutes later I was called up, which was pleasantly surprising given the usual waiting times. The first nurse I saw asked me to remove my top and strip down to my bra for an ECG - I'm used to getting naked for endometriosis but admittedly I was a bit puzzled by this. Once I was lying down on the bed, she looked at me and realised I wasn't over 40, had read my birth date wrong and announced I only need my blood pressure taken and told me to get dressed again. This was mildly embarrassing, but only a little. At least I didn't have to take my knickers off.
I went back to the waiting room and continued frantically reading, whilst trying to block out a new show - this time an orange man was judging the value of old things found in old houses. The next nurse made me take swabs to check for MSRA, which was pretty awkward, seeing as he was probably my age or younger and was clearly uncomfortable with watching me circle a cotton bud inside my nose. He then asked me to swab my groin and I soon wished to be swabbing my nose again. I was given an antibacterial body wash to start using a few days before I go in. The nurse was kind but clearly tired, and I was left feeling not too sure when exactly I should start using the wash and quite frankly, neither was he. I was weighed and measured and ushered back into the waiting room, where I return to hunching over my phone.
The next nurse took me through how to prepare for the operation. By that point I'd been at the hospital for about an hour and a half (which isn't really long at all), and I was desperately needing the toilet because my bladder can't handle endo and I'm forever taking loo breaks. I didn't go because I didn't want my name to be called and for me to missed off the list. Anyway, we went through the usual - the powdered stuff I have to take a day before the op to empty my bowels, what's my family's health history, etc. I told her that my consultant asked me to have a blood test when I came in last, so I didn't have to do it today, so she preceded to check my files. Apparently my cancer results were all clear. That's great - though I had no idea I was supposed to be tested for cancer. I'm almost certain I had three vials of blood taken and no one said anything to me about cancer. I wasn't really alarmed by this and was fairly sure they'd just given me the wrong results somehow. So of course, I needed to have my blood taken again.
Yay for me.
I'm not good with needles (unless the end result is a tattoo) and I'm definitely not okay with having my blood taken, but I'll do it and I don't put up a fuss - I warn them I'm a bit queasy about this stuff and look the other way. But I have to admit, I am getting a bit tired of it. Every time I go to hospital they take my blood and usually I have time to brace myself for it, but I had no time for that on this occasion.
So there I was sitting straight up in a normal chair, with no reclining option like I was used to when I get my blood taken. The room was small and hot and they were drilling next door, with no windows looking out to distract me. I also really needed a wee. I could tell I wasn't prepared for this and felt a bit unnerved, I didn't like that my arm was upright on a desk, at an almost right angle. Something about it reminded me of having a drip in my arm when I was in hospital for weeks with spinal injuries. It didn't feel like a good position for a blood test, but I figured I was being paranoid. The strap went around my arm and I clenched my fist, which always grosses me out a bit. The nurse briefly told me the needle was going in, when I felt a lot more pain than I'm used to. She made a noise that sounded like something not so good had happened "I'm sorry - the needle was too big for your vein, and your vein collapsed. That's why the needle popped out."
"I'm going to use another needle, a smaller one."
I wanted to ask her to put it in the other arm because my arm was sore, but I felt like I was being fussy. I turned to see her unwrapping another needle whilst she asked me if I was alright, she talked about how no one ever gets used to needles and I tried to agree "I had a drip of morphine in my arm for 6 weeks and I didn't get used to it" On reflection, talking about this probably wasn't wise.
"Oh gosh, why did you have that?"
"I broke my spine and a few things in that area in a car accident."
"Was it a button drip or constant?"
"Urm I'm not sure actually, it was so long ago...Maybe in the beginning it was constant... and then a button drip...." I could feel myself going from the moment the last needle came out, but didn't really believe anything would happen. I thought I could regain composure, but I was finding it hard to talk and the questions about my car accident weren't helping. I started seeing slight spots. "I'm feeling a bit funny" I could barely get the words out.
"Okay." I'm not sure if she was trying to get the blood test done or was trying to take it out, but whatever she was doing didn't feel quick enough and I started to panic as the spots got bigger. "No seriously, I'm feeling really ill."
In my defence, I warned her - my last words were "I'm going to faint" and then, there was black. The next thing I knew is that I was in a car and the car had crashed, and I had wet myself. At the same time I was in a hospital bed and morphine was hooked up to my arm. I was also on a metal table with a nappy on whilst they tried to put a catheter in me and looked at my injuries and I knew I was in a lot of pain and scared but I couldn't feel it.
Then I opened my eyes and saw a lot of water flowing pretty fast from between my legs and I came round to the nurse asking me if I was okay and I realised, feeling mortified, that I had just passed out and wet myself in front of her, in her office, on a standard office chair. I felt really unwell, unbearably hot, weak and like I might pass out again. The shock of my flashback hit me and I felt emotional, tearful and completely confused at what had just happened. The only other time I have passed out is after my car accident, when I tried to walk for the first time and the only other time I have wet myself in my adult life is during the car accident, when I got knocked unconscious during collision. The closeness of this scared me.
She called for a wheelchair and then two nurses ran in and they couldn't find a wheelchair and everyone was looking very concerned, and very close up to my face, running around with paper sheets and plastic covers, they lifted me onto an office chair and ran with me across the ward. One nurse was panicking and was pushing me all over the place, the chair was spinning and I was ricocheting off objects, walls and desks, whilst the other nurse was repeating to her 'Calm, be calm, calmly' I guess she was worried that the other nurse's reaction was going to freak me out. My original nurse was ahead of them preparing me a bed and I actually have no memory of getting on to the bed at all, but I know there were four people in there and then there was me and my nurse and she was continuously monitoring my blood pressure. I couldn't stop apologising and tears were falling down my face against my will, but I felt embarrassed.
The nurse said I could come back for my blood test in the week before the op, but of course I had no time, so we decided to leave me for a few minutes to rest before seeing if I could handle it again. She kept popping in to check my blood pressure and in the mean time other nurses came in to see how I was doing. I tried to put on a brave face to my earlier male nurse, who tried to be nice and light-hearted, but I was embarrassed because I wasn't sure if he could see that I'd wet myself and I just wished he'd leave. Another nurse came in and said she loved my hair, she was chatty, bubbly and had a thick accent which took me a while to get to grips with, so at first I found speaking to her a bit overwhelming as I tried to come to terms with having a flashback and wetting myself all in one go. She did however get me a sugary tea and biscuits (which breaks all of my pre-op diet rules) but I knew I was in need of food to get me feeling normal again. Whilst she was out preparing that, I called my boyfriend and started quietly crying whilst I explained what happened. The two walked back in and were confused by my crying, which was again humiliating because I couldn't stop it and they had no idea what was wrong. To them, I just passed out. To me, I passed out, wet myself, had a flashback, felt like shit, needed to get home to prep for my meeting and generally felt exhausted from this entire endo episode of the past two years. I didn't have the energy to explain it, so I graciously accepted the tea and biscuits and thanked them again.
Finally, my nurse returned and we tried a third attempt to take my blood whilst lying down. This time, with sugar in my system, a fan on my face and no risk of falling off a chair, I was able to maintain my composure. My nurse patted me and gave me a well done, which quite honestly I needed to hear, and then left me to recover until my boyfriend came to collect me. He was traveling from our flat, which is quite a distance away and I spent the next hour feeling too embarrassed to leave the room and sit in the waiting area, but also felt awkward and an inconvenience as nurse by nurse walked by and commented "You're still here?".
There's not a whole positive moral behind this story, except to demonstrate to people who don't have endo, the kind of strange complications, hurdles and experiences an endo sufferer goes through. How it is not endo and your life - they are not separate, your life affects your endo and your endo affects your life. And sometimes you wait to be seen by three nurses and really need a wee, and sometimes they say things that remind you of another distressing time in your life, so you pass out and wet yourself. These things have an impact on everything in your universe. I was unable to prep for my meeting because I lost my evening to a hospital bed and so only had three hours in the morning, still feeling shaky and vulnerable.
I think I reacted so badly because subconsciously I walked in incredibly stressed, with a million things running through my mind. If the surgery hadn't been so last minute, if I hadn't had needed to rush through everything beforehand, if I had known I was having a blood test, if we hadn't talked about the accident, etc etc, I probably would have been fine, like I always am. But I am glad I was able to see my vulnerability in that moment, that my body reminded me I have a lot going on and perhaps I needed to take a step back or needed some extra support.
The humiliation? Endometriosis is not the most dignifying thing to go through or experience, but it's best that you get over it, if you can, when you can. I could still be cringing at myself now, thinking about the fact that I wet myself in front of these people, but they treated me kindly and with respect - and after all, they're nurses, they probably see this stuff all the time. This is the best way I have learnt to deal with the embarrassment that often accompanies the disease.
Having said that, if you can ensure you take loo breaks, that probably helps.
Yesterday was a strange day. A confusing mix of good and bad.
A few weeks ago I postponed my operation for several reasons -
Fri 11th - leave old job
Weekend - big wedding
Monday 14th - start new job
Weds 16th - operation
Sat 19th - EndoMarch
Sunday 20th - second part of big wedding
Mon 21st - EndoWhat Screening
You can see the complications there...
My new job needed me asap, and there were deadlines and reports looming at the very beginning, so I knew I'd feel pressure to get better in time to start and finish those, which wouldn't have helped my recovery. I could have pushed my start date back and they would have understood, but I knew that it would have implications for them as they were short staffed and for me, as I'd have so much to do when I did finally begin. I was starting sooner than one month's notice as my old workplace was kindly letting me leave after two weeks, but if I waited until after the operation, I may have not started for a month to six weeks. On top of that, I was a bridesmaid at the wedding and I also really wanted to be part of the EndoMarch and the EndoWhat film, so even if I had delayed my start date, I would have still needed to try and be at least able to stand for wedding. The whole thing felt rushed and stressful and wasn't helping my health trying to juggle it all.
Secondly, and I think I've mentioned this somewhere else, the hospital who was treating me is a good hospital, but not a specialist centre and I have always noticed their lack of patience with endo and almost air of nonchalance about it all. When I was taken to A+E in November to my new local hospital (I had moved), they wanted to keep me over night and were concerned that I might have an ovary fused to my pelvis - the hospital I was under however, didn't even explore this option and put me down as a routine lap. The hospital that I am now local to is an Endometriosis Specialist Centre, with consultants and nurses who specialise in severe endometriosis and can perform complicated surgeries that other hospitals cannot (or cannot do so well), so it makes sense that even their treatment by the gynaecologists in A+E, was better than the treatment I received in the consultant's room at my other hospital.
I had a chat with some women in the field and they suggested that perhaps I wait to see the specialist centre, as I did have an appointment with them, but unfortunately it was booked for April and they couldn't bring it forward. So that's what I did. I postponed my op with the other hospital, but I didn't cancel it, just in case it all went wrong (though I now think they have forgotten about me as it's been a month and I still do not have a new date).
Yesterday, I finally went to see my new consultant. As I walked through the grounds of what was once named the second worst hospital in the country, I had doubts. I was worried I'd done the wrong thing and that maybe I'd contract an infection whilst recovering from surgery - in the past they have been known for that kind of thing. I arrived slightly early - there were some frustrated looking women ahead of me, but I had already anticipated a wait. You don't go to a gynae department and expect to be seen on time. That kind of thing just doesn't happen and to be honest, I'm okay with that. I waited about half an hour before being given a clipboard with a six page questionnaire. At first I thought this was a a normal procedure for all patients, until I realised I was in an endo specialist centre and realised that this was all for me - all for us. Here I was filling out a form tailored to my symptoms. What was my bladder like? Do I have stomach problems? On a scale from 1 - 100, where do I rate my overall health? Do I suffer from depression? Anxiety? Back pain? Every question I could think to ask an endo patient was in there. I was almost excited by them - Yes! I do get pain in my legs! No! I can never fully empty my bladder! It took a while, but it was worth it.
During all this time - actually, it began whilst running for the train - my endo kicked in. Pretty hard. I wasn't due for another five days or so, but it seemed like my body wanted to put on a performance. So as I sat in the waiting room, my cramps began to grow and I recognised the signs that this wasn't just a bad day - this was about to be my full on hunched over unable to stand first day of my period. And it was all going to happen in front of my consultant.
Thank you body for pulling that one out of the bag.
So, I get called in and by this point I'm walking funny. I sit down to a concerned looking consultant and an even more concerned looking nurse. My consultant flicked through my questionnaire with an expression which was an unusual and conflicting mix of 'I've seen this all before' and disbelief. He was shaking his head as he said to me "You're in a lot of pain" I gulped. When a medical professional recognises your struggle it does something to your soul - you expect your partner or maybe your family to recognise your struggle, but the medics are used to this shit and have an armour of steel. Not this guy. "I just don't understand how people do not know what you're going through. The extent of your symptoms... There is not enough research and funding. I see young girls like you and I operate for five hours. Surgeons who come to observe are in disbelief. It spreads like cancer. Cancer kills but endometriosis maims lives for as long as it wants.' The nurse was making noises as he talked and shook her head in agreement and despair, she told me about a girl whose legs wouldn't stop moving because she was in so much pain. I realised that these two really saw me - saw us. They knew our story. I choked up for a moment, but managed to swallow it down.
"Have you seen a gastroenterologist?"
"No" It had never been suggested to me to do this, despite looking six months pregnant after each meal since I was about ten.
He proceeded to ask me what they found in my first operation - which was superficial endometriosis - and whether they've investigated further (they hadn't, I was told it probably wouldn't come back and was discharged). "What we do is as a team, look at your case. You may have some deep infiltrating endometriosis giving your symptoms, so I'd like to do an MRI. Then we meet with several consultants and discuss what we find and what type of surgery needs to be done. But this can take time once you've had the MRI and we've got everyone together, it could be two months... I don't think you can wait that long. Have you had Zoladex before?"
Ah, the famous Zoladex. The induced and temporary menopause. I know for some women this has been a huge help and form of relief, but I also know that other women suffer immensely with the side effects. Endometriosis doesn't have one known treatment that works for every woman, it's a bit of a gamble. Did I really want to take this gamble? I decided I didn't - it has taken me two years to realise that having pain everyday, stomach problems, depression, anxiety, a demanding bladder and feeling like I need to sleep for a year (I am really not exaggerating) was my new normal. I'm not prepared for a new normal - I honestly don't think I have the strength.
So I geared myself up, took a breath and tried to put my point across with as much strength and sorries as I could fit in - I cannot be assertive without being apologetic, it would seem. I wanted my consultant to like me and I knew getting the treatment you want is a battle. However, my big girl talk was not necessary - he understood, to my surprise, immediately.
The next option I was provided with was the pain killer, gabapentin. "It's going to make you very drowsy."
"Okay... Could I just take it when I'm in the worst of it?" I thought of my daily struggle waking up and staying awake - surely if I was any drowsier I'd be in a coma?
"Unfortunately not, you have to take it everyday for it to work" He shook his hands, crossing them in the air "Let's go with the laparoscopy first. You can't wait for the MRI. We'll be able to remove the superficial endometriosis, but if there is something more complicated... We'll have to get you in for another operation. I will make a note to do this myself, so I can do what I can during the lap. The MRI will show us if we need to do another procedure."
So there I was. Absorbing this news whilst he printed me out the paper work to sign. Five years ago I thought the endometriosis would never grow back, even over the past months, whilst in A+E, on crutches, going part-time, working from home, spending my weekends in bed, I didn't think it was that bad. I kind of feel like I'm one of the many cases who hasn't got a lot of it going on, but has a whole heap of symptoms. It was a strange thought to get my head around - I might be one of the cases that I read about, I might be like the women who I support in my voluntary work. I kind of wanted to say "Wow, doc. Maybe I'm wrong - maybe it's not severe pain when I can't walk, perhaps that's moderate. Surely severe is worse than this? Surely my little version of endo is not deep infiltrating endo? That's not me - that's those bad cases." But now I was having to adjust to the idea that I am one of the women who has been offered Zoladex, that I might not only be looking at one operation, but two, that the endo might not just be fusing my ovary to my pelvis, it might be inside my bladder and my bowel. I tried to decide what kind of news this was. Surely it was good - I was getting answers. But what if the answers were right? I wished I hadn't come alone.
As these thoughts and realisations ran through my mind, my hands pushed down on the seat, lifting my pelvis up slightly because I couldn't take the pressure of a hard surface. I hadn't seen the nurse watching me from the corner of the room. "I can see you're suffering. You are going though so much."
The consultant gave me a prescription for gabapentin, though I have no intention of taking it. I am pretty put off strong painkillers after spending months on morphine, laughing gas and tramadol as a 17 year old with a broken spine. We went through the lap paper work and the details of the MRI as I squeezed the desk in time to the waves of pain.
The consultant then asked me to stay in the waiting room to see the Specialist Nurse, he told me how helpful she would be in the lead up to my lap and I was once again struck but his genuine kindness and concern for my welfare. As I left he sent me his best wishes and told me to take care of myself. The chatty and all seeing nurse walked me back to my seat and told me how she understood what I was going through and that I was so brave. I thanked her and tentatively lowered myself back down on to my seat, overcome with gratitude.
I was diagnosed with endometriosis at the age of 19 (I am now 27 years old), it took me around 5 years to finally be diagnosed and I was diagnosed via laparoscopy after a cyst had ruptured on my left ovary.
At the age of 14, I had my first period. I suffered from very heavy and painful periods that would normally last around two weeks. During my period I would often pass out from excruciating pain and vomit most days, causing me to take time off of school regularly. After speaking to my friends and family about my periods, I came to realise that what I was experiencing was not okay.
I went to see my GP numerous times to ask for help, but was always told that what I was going through was completely normal, that every woman experiences pain and that I was no different from the rest. I was then put on the contraceptive pill as I was told this may help and to take paracetamol as and when I needed it for pain.
After suffering in silence for 5 years, at the age of 19 I was rushed into hospital with severe abdominal pain, which they suspected was appendicitis. I had a transvaginal scan to reveal I had a large ruptured cyst attached to my left ovary and was told I would need a laparoscopy to remove the cyst. Once woken from my surgery, I was told that I had a condition called endometriosis, as well as POS (Polycystic Ovary Syndrome), something that I had never heard of before, so naturally was very upset as well as confused. I was told the endometriosis had spread across my abdominal organs, causing my left ovary; womb, bladder and bowel to all join together and were stuck to my left pelvic wall. The surgeon performed laser treatment during the laparoscopy to remove the endometriosis.
I have now had 7 laparoscopies in total, including removal of a second "Chocolate Cyst” on my left ovary, biopsies on my cervix, removal on part of my cervix due to endometriosis scarring and removal of endometriosis on my sciatic nerve.
A bad day for me is having such bad pain and sickness that I end up in hospital, with a drip in my arm giving me morphine and fluids. I suffer from extreme pain in my abdomen, pelvis, thighs and back. The pain becomes so strong I vomit. A good/normal day for me normally consists of being able to go to work and manage my pain via painkillers. My pain can vary, so painkillers I take are normally paracetamol or tremadol, depending on the severity of pain.
Suffering from severe fatigue is an everyday battle. Even just getting up, dressed and traveling to work makes me feel like I could sleep for a week! Endometriosis has affected my life in all aspects. My daytime activities are now determined by how severe my pain levels are and if working around hospital appointments for gynaecology check ups and scans. I am no longer able to drink alcohol without it causing my endometriosis to flare up, as well as certain foods types. For me wheat, refined sugar and dairy cause most irritation.
I am extremely lucky to have a very caring, understanding and patient boyfriend who knows that at times, being intimate can be very painful and uncomfortable for me and that some nights all I want to do is curl up with a duvet and sleep. He attends my hospitals appointments as and when he can and also has researched the disease to have a better understanding of it... Which I recommend everyone to do who has someone in their life that suffers with this invisible illness!
It is also very hard for friends and family to understand why I sometimes have to cancel last minute plans because of pain or just pure exhaustion. It can put a strain on these relationships, as the illness is not all that visible on the outside a lot of people will assume if you don’t look ill, you must be fine. I would say to anyone who knows someone with endometriosis, be patient with them, ask questions if you don’t understand something about the condition and to always remember, endometriosis is an incurable disease, that is not visible from the outside, but just because someone looks okay, they are most likely battling pain daily and trying their best to live a life as “normal” as they possibly can.
I manage my symptoms daily by taking prescribed painkillers at night called Nortripyline; it helps with my pain as well as helping me sleep. During the day I take over the counter painkillers as and when I need them as well as using heat pads on my back and abdomen to ease pain. I regularly go through ups and downs, when dealing with this condition. At times I feel so strong and like I can take on the world and other days I have a good old cry and suffer from severe anxiety. I worry about leaving the house to go to work/see friends/go on holiday, as I am afraid and embarrassed that I will be in pain and become sick. I have a very close relationship with both my mum and boyfriend and if ever I feel down, I share how I am feeling with them. Sharing your thoughts and feelings with someone can feel like a weight has been lifted off of your shoulders and makes you feel not so alone. Online support groups are also very helpful, you can talk things trough with people who are going through the same thing as you, share advice and make friends, all from the comfort of your own home and behind a computer screen!
My message to the NHS and doctors would be to raise more awareness about the condition. For something that is very common amongst women, it is not spoken about nearly as much as it should be. To make the condition and symptoms known in hospitals/schools/ local GP surgeries and to take patients seriously when they come in search for help.
I hope that one day a cure will be found for this debilitating disease, that there will be a way of diagnosing it other than via laparoscopy and that the NHS will soon bring more gynaecologists in to hospitals that specialise in endometriosis. I also hope that endometriosis will soon be recognised for how debilitating it is within a workplace.
To the young women who are currently being diagnosed, do not let anybody tell you that what you are going through is normal; no one knows your body better than you do. You aren’t alone in this and being told you have endometriosis does not mean you cannot have babies; this was once a fear of mine, but so many women who have endometriosis have successfully conceived and given birth to beautiful, healthy babies.
I would say to women with endometriosis, you are not alone with your suffering. Never suffer in silence and to stay strong. We will fight this together!
Words by Alice Griffiths
It's been a long time since I've written anything for the diary section. Partly due to my insecurities that no one will be interested and wondering why they should be anyway, and partly because it's a scary thing, to open the box in the attic and try to make sense of it all and explain to someone else what you find in there.
The truth is - I have depression. I also have anxiety. And a bit of OCD. And Post Traumatic Stress Disorder. And my endo has been playing havoc with my life now for two long years. The depression and the endo is a bit like the chicken and the egg, I really don't know which one came first, but I do know that the symptoms of endometriosis heightened my already anxious nature ten fold and most recently, I've been having a panic attack nearly every other day. These sometimes have been mild and unnoticeable, but I've had a few that take hold of me for hours and weirdly enough I don't realise what's happening until about three hours in when I'm still wondering why I cannot breathe and everything looks a little bit fuzzy. Here is a list of some of the things I worry about with endometriosis:
What if my manager doesn't believe me?
What if my manager says they believe me but actually they don't and they're waiting for me to slip up?
What if they're planning to fire me?
What will I do if they fire me?
Could I sue? Could I sue a charity?
No, I couldn't sue a charity. So what would I do?
If I got made unemployed, the government won't believe me. I won't get ESA because it's hard enough to prove to doctors that you're suffering.
How am I going to pay my rent?
What happens if I get evicted? Does that mean I've become intentionally homeless so I won't get any help?
Could I really move back in with my mum? That would make my depression worse.
How could I live in a flat share with debilitating pain, intense hormone mood swings and a host of mental health problems? I'm too tired to talk to strangers.
I'm the main breadwinner. How are we going to afford to live?
How am I going to afford the diet I need to try and control my endo?
How am I going to enjoy myself when the little treats I do get out to do, I won't be able to afford?
Are people reading my instagram and thinking I need to shut up?
Is my website even helpful?
I need to do more to my website. People are waiting to read it.
I don't have time/energy to do my website.
THERE IS SO MUCH TO DO.
I have four weddings this year. That's four hen dos (or more these days) and bridesmaid duties. What if my period comes on the wedding days? What if I can't walk up the aisle? What if the food at the wedding triggers a flare up? What if I can't afford any of it because I lose my job? What if I'm too tired mentally and physically to do any of this?
Could I go part-time? How could I afford to go part-time?
Could I go freelance?
How much work would it take to go freelance?
Could I do both? Go part-time and go freelance? Would it be harder to do two jobs then hold down one 9-5? How does that work tax wise? How will I go part-time and go freelance at the same time? I'll be spending all weekend doing job apps, so how could I get my freelance off the ground in time before I make the jump? Will I have to do my freelance after work on top of my 9-5 until I go part-time? How do I cope with that? I am so tired.
My pain is changing. What's happening inside me?
Do I look ill?
Why can't I remember words? Why does it take me so long to finish a sentence? Do people notice?
Am I slipping up?
Do all my friends think I'm negative?
How am I going to go on like this? How am I going to live the rest of my life with this disease? Will I be this tired forever?
Is the depression ever going to go? What if I always feel this way?
Which hospital do I go for? Do I wait to see a specialist or go to the hospital that is offering an operation sooner?
If I go to the hospital which is offering an operation sooner, will they do a good job?
How long do I have to wait to a specialist? What if I get worse? What if I can't hold down a job?
What if the op doesn't work? What if nothing changes?
What if the op works? Will I still be of use to other women?
What if my doctor won't give me another sick note?
What if work say I have to start coming in at 9am? How could I do that? It takes me an hour to wake up.
I've had a job offer. What if I can't do my new job because I'm too unwell? What if I'm taking on too much?
Will my new job pay me sick leave for my operation?
Maybe I should have stuck to what I know?
This list goes on. And on. And most of these thoughts are happening at the same time and include scenarios that extend on for years and years. That's the difference between anxiety and worrying. It is not just a worried thought which comes in and goes out again once you've worked it out, it's not something you can talk yourself out of. It's a huge host of terrifying fears that are circling your brain like vultures, ready to attack. These thoughts come with their own baggage in the form of physical symptoms - difficulty speaking, palpitations, fatigue, heart pain, feeling like you can't breathe, feeling detached from your body, dizziness, nausea, feeling like someone is sitting on your chest, blurry vision, migraines....
Why am I telling you all this? I'm not sure - it's a brave/stupid move. Family, friends and even maybe work colleagues could read this. But I'm hoping we're in a time when the people who matter won't judge me for this - they'll see that I'm trying to bring awareness and I'm trying to let others know they're not the only ones. I know there are women out there who feel like they're going crazy - they're trying to handle a disease and all the other issues it brings a long. Depression is enough on its own. Anxiety is enough on its own. Throw endometriosis in the mix and you've got a war that very few have been prepared to fight - we're learning as we go.
Despite the doom and gloom of the above, I'm surviving. And in fact, anxiety and depression have forced me, in the most painful way, to make decisions about my life and where I want it to go.
This morning I sit with my cup of green tea, by my window, in my dressing gown, with four years of employment with a big homeless charity behind me. There have been many many days where I begged the universe for this day to come - where I considered just not going in, saying I just wasn't going back whatever the consequences, because I just couldn't cope anymore. Now it's all over, my heart aches. I went to sleep thinking about my clients and worrying about the issues they have going on or the exciting futures they're planning, and feeling a stab of pain that I won't be there to say "well done" or "we can work through this".
Ahead of me, lies a three day job share with a new charity, that is just as close to my heart and a cause that needs to be heard by every ear in every country. It aligns with my values, my current lifestyle and where I want to go moving forward. I am exited and terrified. All of the worries above have not gone, they have changed and adapted to the scenarios that lie ahead.
But still, I am making progress. If I had decided I needed to spend six month in a mental health hospital - it's still progress. Progress doesn't have to be what the world thinks it is - achievements, jobs, money. It is what it is to you. Sometimes progress for me is getting up after my hitting my alarm only twice.
Sometimes anxiety and depression makes you think you're not going anywhere because you're not 'sane' according to society and that they're controlling your every move. But life isn't designed to be smooth sailing. There is no point me asking myself would I have made this choice if I didn't have endo, because I do. I am not only trying to make the best of my situation, I am trying to embrace it and turn it into something that works for me. If that means going freelance and part-time, that's great - if it means somehow taking a year off, that is too.
Whatever is in store over the coming months, whatever my anxiety throws out me. What I do know, as a fact, is that I survived. I didn't lose my job, I didn't lose my home, I didn't lose my mind. In fact, I gained a whole lot. I gained a greater awareness of mental health, I gained direction, I gained a community of women who feel the same, I gained a therapist (a few of them), I gained a life coach, I gained mindfulness training, I gained nutrition knowledge and I gained an understanding of what's important to me.
So though anxiety often tells you it's going to take everything you have, perhaps our war tactic is taking everything we can from anxiety.
Image from Lizzy Cunliffe-Jones