I met Lucy seven years ago. On Myspace. We shared a love of Bruce Parry and have been friends ever since, she is ace.
Lucy has a different life to most of us, she can't go out to work, she doesn't party all night long. She lives with a condition that means not only is she in pretty much constant pain but her body, her life, her world revolve around her fluctuating, maddening hormonal cycles. Lucy has endometriosis, a rarely mentioned ('she wants to talk about periods, oh heavens!') condition that affects 1.5 million women in the UK alone. Last year, after endless battles with doctors and specialists, at the tiny, wee age of 32, she had a hysterectomy. Here is her story.
1. Tell us a little bit about yourself; your age, where you're from, some background bits and bobs.
At 33-years-old, I'm still on a drawn-out health-hiatus from a much-yearned-for career as an artist. Mostly, I draw commissioned and non-commissioned graphite portraits of people and animals. I feel fortunate to have grown up in a leafy area of Essex, with a superb family of humans and cats and an ever-present and fervent interest in creating, drawing and painting things.
2. How has your life has been defined by endometriosis? What are the symptoms, when did it first affect you and what impact does it have on your life, what support have you had from the medical community?
Although endometriosis can, for some women, have the tiniest impact on their life, it's been extremely invasive in mine. Almost from my first period, when I was 12-years-old, there was disabling pain and leaden fatigue. Because of the depression I had after that first menstrual foray to womanhood, I spent a lot of time away from school feeling and being exceptionally tearful, sometimes suicidal, and always utterly shattered. By my mid-teens, I was having to stay horizontal with every period because the pain was so extreme.
That way of living became normal and stayed for six or seven years, at which time I tried contraceptive pills to try to lessen the pain. It didn't work. My depression became severe once more, so, after three different kinds of pill, I decided to stop. Not only was my college work suffering, my emotional and mental health were too.
As to how my general living is affected, I still experience pelvic pains and often breath-takingly sharp twinges. I'm yet to have a day without the fibromyalgia fatigue and pains it causes, which fuzzes my thinking and concentration. Amitriptyline, an anti-depressant, is helping to ease those pains, just slightly, but they also add to my grogginess. Other anti-depressants, for my depression, help to keep my mind stable, most of the time (fibro and endo seem to be linked so, if you have one, you seem to be likely to have the other, The Spoon Theory is super for explaining the energy drain and effort challenge).
Delightfully, I've lately been able to crochet and knit some small toys, Christmas decorations, flowers, but they usually take a long time to finish, or even get round to beginning. I fear that I can't draw now, because it's been so long since I did any 'proper' work, even minute-long sketches, or studies of bones, or leaves, or my own hands. I know that the stamina and energy needed to do such things is far greater than I can give without having to rest for hours or days. It's intensely frustrating, and I don't know the answer to the puzzle, if there is one.
3. Tell me about this last year and your major operation. Has it improved your condition?
Despite trying various contraceptive pills, having three courses of temporary-menopause-causing injections (plus HRT during each course), the Mirena IUS (which caused quite large ovarian cysts), a contraceptive injection called Noristerat (which caused me to go particularly loopy and suicidal, even for me), three laparoscopies, and NovaSure, I still experienced period pains, which were far too severe to get through without narcotic painkillers. Added to the mental (literally) and menstrual mix was pelvic pain and stabby-right-ovary pains and aches, which both occurred for only a week or so while I was between periods (but still bleeding). Eventually, I was hurting a heck of a lot, and constantly.
Over a decade of that kind of pain was, for me, unspeakably depressing and exhausting, and I couldn't imagine how I could cope with it for another year or even five, as I was advised I should. I just couldn't. I was taking about 100mg of morphine each day, whether with or without a period; what else could I do but have the whole horrid lot taken out to, at least, stop the periods? I sit here, typing, with just one ovary still within, for the lone reason that my bones need not to crumble. It's a good enough reason. Not having periods has been akin to a gigantic weight having been lifted from my pelvis. It's fabulously exciting for me to actually be able to wear matching underwear or white pyjamas or even any pretty pyjamas, at any time. It is a kind of freedom, to which I'm still adjusting, ten months on.
But I still have hormonal fluctuations and almost all the baggage with it. And, after four or five months of not a single pelvic ouch, I am, regretfully, back on dihydrocodeine for pelvic and ghost pains. The pains' return has been hard for me to accept, to need to take opiate painkillers again after months of dreadful morphine withdrawal symptoms has been hard.
4. What support networks and information is available for women with endometriosis. Do you think the NHS are switched on to this disease?
It seems so clear to me now that all that pain was caused by endometriosis but, unfortunately, it seems that, far too often, it's not even thought of as being the cause of gynaecological problems, or pains, or symptoms associated with periods. Month after month after year after year of not being properly treated so often means a woman will suffer more pain and more internal bleeding and damage. And that's what happened to me, and I still have pain after a hysterectomy.
In 2007, my quest to discover more detail about this new-to-me condition, endometriosis, began. It was infuriatingly difficult to be taken seriously by the doctors I saw; countless times all of my pains were attributed to an irritable bowel, or depression, or stress, among other things. After appointments with at least six gynaecologists over the years, I saw a kind, caring, and (to me) genuinely concerned doctor. He's still my go-to man for all things endo, and I wouldn't change to anyone else.
Finding information about endometriosis was fairly easy for me, but only because I was made aware of it actually existing. I discovered Endometriosis UK while searching online and saw lists of symptoms (many of which I experienced), where to find more help, treatments available, support groups. The NHS website has a good deal of helpful information and advice; the DoH site still has, to my knowledge, not one mention of endometriosis, which I think is appalling.
5. What advice would you give to women suffering from endometriosis.
If you're in so much pain with periods and have to stay in bed because walking is not an option, much less so work/school/college/university, you're not asking too much to be listened to and helped. Asking for help from a doctor, asking to be referred to see a consultant gynaecologist can be so hard to do, especially if your GP is not the affable and empathetic sort. They might tell you it's probably nothing, or that you're meant to have period pains, or that it's normal, or any number of rebuffs, but, what I learned to be of utmost importance in this kind of situation is that if you feel unwell, if you truly believe there is something not right with your body, don't ever give up. Don't ever allow any person to tell you that you should make more effort when you're giving everything, or that you're making a fuss when you don't know how to live that way any longer. The severity of endometriosis and its myriad symptoms can be so terribly disruptive for some women, while others have no obvious signs of having it; every person feels different, and every pain is dealt with differently, and comparing yourself to others is never helpful.
I've found coping techniques aplenty, and I find heat pads, hot water bottles, relaxation and self-hypnosis audio tracks, and yoga all in their own ways enable me to get through the days, the weeks, the months. Nothing stops it all, but each one does something to distract or allow me to face and breathe through the constant NRGHs of everything.
6. How do you feel it has affected your life? Can you glean any positives from the situation?
Last year, I completed a course of cognitive behavioural therapy, and have used and been improved by what I learned. I've also not practised everything I learned but I'm getting there. Sort of. One of the most important things to remember is that comparing myself to other people, people I really don't know much or anything about, is not helpful to my mental health. 'She can walk to the shops and around the supermarket, and then walk home, then drive to work, actually do the work, drive home again...' - I don't know her life, and, really, so what if I can't do what I see her doing? Why is it important to compare and judge yourself? Does it improve your own well-being, your physical strength, your abilities? I can say that it does not help, at all. It's like a continuous bullying of yourself, always nagging, always cruel.
Partly because of my increasingly rubbish memory, and partly because it means I notice that I feel I've achieved little (but no less significant) goals, I write daily lists of what I'd like to get done. Mostly, it's exciting tasks, like, 'iron ten things', and, 'vacuum hall, stairs, front room, back room', and, 'DO EMMA'S INTERVIEW, YOU EEJIT'. The CBT people said that writing down and crossing off what you do is a helpful visual aid to show that you have done things, even if you think you haven't done anything. Moreover, I know that when I do complete those somewhat-menial tasks, it's often been physically strenuous for me. The resting after hard-going days is annoying to me, because resting means not doing much, which I don't do well.
I certainly appreciate the oft-overlooked aspects of everyday life: the robin on the garden fence bouncing around the hebe; the bi-plane soaring above against the lilac clouds; the new avon book or lidl leaflets landing on the mat. I've gained dozens of friends via the Endometriosis UK facebook page, or through my blog, or from twitter and my numerous posts about endometriosis, among many other subjects. Some friends I haven't met in person, or even spoken to, but, sometimes, typed words are more than enough to make that emotional connection with a person, to support and ramble on to, and be rambled at, and to love them. I know I wouldn't be grateful for what I have, see the world as I do, or have treasured people in my life were it not for the health kerfuffle I've had over the years, and I'm glad I have those characteristics, but I'd rather have had them without the physical pains and emotional tribulations.
7. What about now. Tell me about the future, any plans, goals, opportunities?
The arty stuff aside, travel is very near the top of my 'Stuff To Do in Life' list; Ireland, Italy, Croatia, Poland, France, and Iceland are among the countries I would most like to see. For that, of course, I would need money and, since I am still unable to work and receive ESA because of the chronic pain and depression, travel will have to keep waiting. If I can begin volunteering, spending time cat-cuddling, or being a charity shop-items-sorter, or something at all similar, it'd definitely be a step in the right direction to get me out of the house and even a little bit independent. Because, predominantly due to the fatigue, I take an absolute age to get anything completed, I usually expect progress of any kind to be slow. Slow but sustained. It's potentially exciting and rather intimidating. But still exciting, especially the cat-cuddling bit.
I still yearn to draw and paint pictures, to solder silver wire and findings and wire and create jewellery, to sell my work, to be able to earn money and be known for my work. I just don't know how that's possible when I feel the way I do, with so little energy after doing minimal, necessary, everyday home-keeping. It's become more binary in recent years: I either do this or that - I can't do both. If I do a little more today, during a pre-not-menstrual skit, I pay for it tomorrow by sleeping on the sofa, being unable to concentrate even on Pingu, and having a poor appetite. I'm not a procrastinator (much), and I'm not lazy. I simply don't know where to get that extra energy from, or how. I don't know how to do it. And it frightens me.
8. Tell me about your hobbies and interests - are you thinking about opening an online shop to sell your artwork?
Birds. Stamps. History. A stamp with a dodo on would be a dream! I visited Battlesbridge and its lovely collection of antiques shops a while ago, with my Ma and a spectacular friend called Kirsten, where I bought a fair wodge of stamps, most of them first day covers, and they cost a lot less than they would have had the seller not been closing down. Bargains. They're miniature artworks. I adore a Machin, with its simple, clear perfection.
My lovely garden is often visited by starlings, jackdaws, blue tits, robins, collared doves, and my beloved multi-coloured wood pigeons. I get so much pleasure from watching them interact and flit about, seeing how agile the blue tits are on the cotton-thin twigs of trees to find insects, or hearing the robins sing their metallic songs and talk to one another across fences and shrubs. I keep thinking that 'when I feel better' I shall draw some birds, perhaps paint with watercolours some ideas, and try to capture the starlings' glorious rainbow coats.
Before my operation last year, I took the time to make sure I'd correctly listed my drawings in my etsy and folksy shops and shared/updated my facebook, twitter and linkedIn accounts, so that I could get right back to it all when I was able. I'm still trying to get back to it. I will one day.
9. Describe a typical day in the life of Lucy.
This isn't going to be the most beguiling description. A stiff and ouchy wake-up is swiftly followed by tea and tablets, cat love, a heat pad, and breakfast. While I try to wake myself up, I think of what I want to get done today, or what needs doing. Inevitably, my hopes far exceed my reality, and I won't do the weeding, then clean the bathroom, then walk to the shops, and then vacuum every room. I may clean the bathroom, or vacuum some rooms, and then sit down and drink tea. And rue my awkward lifting of the vacuum cleaner. And lambaste myself for not doing more. A typical day doesn't involve a short walk, or vigorous cleaning, or multi-tasking. It used to, but not now. Yoga does help, but the motivation to actually begin it can be elusive.
10. Who or what inspires you.
Chuck Close is someone I first (not literally) encountered when I was at art college. I was instantly mesmerised by his work, the immense, almost oversized, portraits were staggering in their detail, and I wished I could produce work like his, to be that good at seeing what faces are made of.
Leonardo da Vinci is probably a bigger influence for his sketches and studies of the human form. I'm more interested in his drawings than I am his paintings, though still stunned at the quality, as well as the mind of the man. He fascinates me, his drawings of hands and muscles and bones are beyond anything else I've seen.
I'm also inspired by Banksy, whose brilliance of wit and clever (often-political) pictorial comments are, to me, magnificent. Not even counting the artistic skill, I love that he has the mind to produce so many and such relevant observations. Superb.