Lucy -- a not-typical Essex "girl" and 30-something Artist -- witters on about the (probably) utterly useless tellings of current everyday life with her now-lone endometriosis-plagued ovary and ghostly ex-womb.
Sunday, 13 June 2010
Running away from it all.
One aspect of secondary school I didn't despise was P.E. - I know. I liked being outdoors far more than in. Perhaps it was the lack of sweat and 14-year-old B.O., and the sight of a road along which I longed to escape, to run home and away from that hell of a place. I wanted to be good at P.E. and be praised. Can you tell there were [are] confidence "issues"? But I did truly want to be good at it. Possibly, this is because I wasn't as good as I knew I could be. But I enjoyed doing it. My hypermobile knees and joints, generally, gave me so much pain, sometimes, especially the day after P.E. - only years later would I be told that I had hypermobility, which explained why I hurt so much for days. A bit late, say 8 years, but still...
Associations with school and activities done at school, which I hated, utterly, for a long time, inevitably led to my not wanting to speak French, or exercise, or learn. Horribly ironic, as I adore languages, being active and studying. Unfortunately, due to the now infamous "bad periods" - undiagnosed-for-10-years endometriosis - I was unable to walk at certain times, let alone throw myself 5 feet in the air over metal pole and land, ungraciously, on what looked like a giant's mattress. Shame really. Sounds fun.
I used to really enjoy cycling. No great distances, nowhere in particular, but the action of doing it. But my knees cracked. Well, not cracked, but there was air under the kneecaps and the air "popped" as I moved. Or something. Anyway, it was deeply unpleasant, so I got rid of my bike. It was very heavy, that bike. Nice, but very heavy. So, I haven't and don't cycle. I still would like to but that clicking and snapping in my knees is... eurgh.
Lately - the last few weeks - I've had dreams about running. Not running away from an unseen horror, or from memories of school. Just me, running. Or, rather, jogging. I know some people who do it, as a "leisure"/pleasure activity. In the dreams, I enjoy it so much that, when I awake, I feel disgruntled that I wasn't actually running. Jogging. Whatever. I've always thought I would "do stuff", like other people do, like work, drive, run, learn French (again), visit a country abroad, go to Glastonbury, move out of the family home and into a flat or house of my own. Or at least, out of the family home. But it's always "later", when "I'm ready". The problem with this thinking, though, is that "later", like tomorrow, never arrives. When will I be "ready"? How will I know? Will it be instinctive? Will there be a sign? Or do I assume everything will be all right one day?
The answer to that last question is: yes. I assume things will improve but neglect to admit to myself that I have to DO something(s) to make those changes happen. I remember how hard it was to get myself out of the depression pit when I was 15, and how hard it was to face the changes that had to happen to make my life worth living. It was one of the most difficult times of my life and things I have done. But I did it. That rut in which I found myself was a bad one. Depression seemed to grab me by the throat and cause me to hyperventilate whenever I thought about going outside. It put up a glass wall around my bedroom, which I managed to smash. And then it build one around the house. I desperately wanted to get outside but being there terrified me. And I can't even explain why. I don't know why I felt so scared of the outside world, of being alone, of travelling alone, having no friends, having no-one understand what was going on in my head... quite disturbing, as even I didn't know what was going on in my head. Or why.
I have to break these glass walls. There's no glass ceiling; I don't want to be a trampolinist. I want to run. All right. I want to jog. Not for races, not to finish first, but to "just do it". I want to be like the endurance runners, not the fast runners. I want to build my stamina. I want to exercise, to be outside, to see places and people and feel good about myself. I don't often feel good about myself. There's always something wrong, always something about myself to criticise. I don't want the attention, nor do I want praise for doing good, like the charity fund-raising. But I do want to do the things I've dreamed of. Literally dreamed of. Not all the things. I dreamed once there was a ladybird the size of our house (with the hawthorn tree) in the back garden and I lost my voice. Not keen on experiencing that for real, if it's all the same...
Most importantly, I want to run - through pain; remember endometriosis doesn't stop when a period stops. It carries on hurting every day, for me, at least, leaving me constantly tired and aching. Not forgetting my gammy knees, which (presently) hurt after standing in a supermarket queue for 8 minutes. So this isn't something I will be able to do easily. It will hurt me, I will be even more tired and I will wonder what the HELL I'm doing. Why am I going on about this? I want to run and be sponsored to get money for Breast Cancer Care and Endometriosis UK. I'm not starting anything yet; I'll talk to my GP, whom I trust, and see what he says.
But I will do it. I will run for me, for Breast Cancer Care and for Endometriosis UK. I will do this. And I may go to Glastonbury, after all...
Friday, 4 June 2010
No show for Glasto...?
It's a simple, short, painful sentence. It's painful for me because I know, no matter how hard I try to convince myself that it's not as difficult or challenging or even emotionally demanding as I know it is, that it IS all of those things, and more.
I try to not pity myself, because when I see it in others' characters, I pity them, sometimes feeling unreasonable contempt for them and their ways of always seeming to be a victim. Poor them. Aw. Diddums. Et cetera.
But there are times when situations, circumstances, our health (or lack thereof) prevents one from working, or driving, or going to a festival one has dreamed of, literally, for years. I know, too well, that I am not emotionally or physically capable of going to Glastonbury this year, in a mere three weeks from me typing this blog entry. I have tried to convince myself that I could do it. Perhaps I could. For a few hours. But for me to be there for three days, not sleeping well, being among thousands of people, not eating properly, meeting new people and seeing and hearing things I may never hear or see again is, even more my imagination, a RIDICULOUS notion.
And that hurts me so much I can't even put it in to words. I've bought walking boots (very sturdy, very comfy and they look good, too!), a sleeping bag, an air-bed, very short bungee ropes to secure stuff, ear plugs, a new waterproof jacket, a folding mat on which to park my bum, train tickets and, of COURSE, my Glastonbury ticket. It's beautiful, with the exception of my face on it. It's so colourful, and with its shiny numbers, it's like a piece of magical twinkling Art, ready to take me in to the world of AMAZING, for memories to be formed and friendships to be made.
But I don't think it will happen. For as long as I car to remember, I have been shy, not confident, worried what others might think of me. What if they know I'm rubbish at talking to new people when I'm feeling generally bad? Isn't everyone like that, though? Doesn't everyone have times like that? Probably.
This Glastonbury, I will not have a wretched period and all its Satanistic agonies with which to contend, on account of my oestrogen-suppressing injection to help relieve me of my endometriosis symptoms. I can not guarantee I will be well for next year's festival. When I was awake early that cold October Sunday morning last year, I assumed and hoped (as always I do) that I will have made sufficient personal progress in order to "live the dream".
I haven't. And, this is not pity, but fact - I can not control my body nor can I say when I will have a period. Plans are scuppered because periods happen whenever. Not outlandish plans, either: to go to see the ducks at a local pond, or visit a museum not six miles away are simple, easy, enjoyable activities but so often, I end up not doing what I want to do. I don't want much. I'm not spoiled. I don't want a flash car, nor a grand house, nor a three week holiday in Marbella.
I want to not be controlled by my body.
I want to not hurt all the time, in some way or other.
I am so tired of being here, like this, feeling so tired, being so tearful about my ovaries and their hormonal attitude, buggering up so many days out, or walks through the countryside.
I am so tired of being humiliated by my lack of self-belief, because of depression caused by a malfunctioning womb and accompanying ovaries.
But "little steps" and "making progress gradually" haven't worked. Look at me. Tears are falling from my eyes because I feel stupid, like a failure after thinking I could do it and be "grown up" and do what other people do, every day, in every city, in every country in the whole world. But what if I can't do that? What does that make me? I see people doing jobs, driving, dancing in fields to music or no music, having the TIME of their LIVES and I want to be there, watching Rolf, Stevie Wonder, Billy Bragg and Cherry Ghost and, yet... I'm so frightened.
I just don't know what to do. Hysterectomy, maybe.
(Here endeth the self-absorbed crap.)
Saturday, 15 May 2010
I could worry until the cows come home.
Last year, in October, I bought a ticket to go to Glastonbury. I know I'm very lucky to have been able to get one. Luckily, so did a friend of mine, as we plan to go there together. We were both awake earlyish on that Sunday morning, waiting for the website to crash. It did, many times. Countless times. But we each succeeded in (not literally) getting our hands on a ticket.
When Radiohead played Glastonbury in 1997, and the coverage was, as ever, on BBC Two at something past 11:00pm, my lovely Little Nan was staying with us. She used to stay on the sofa so, I got the video set up to record the highlights programme and then get out of the way so she could sleep. I didn't mind. She was my Nan and I'd have done anything for her. I still would, if she were still here.
Thom and chums played that huge stage and the crowd was enormous, glowing and loud, full of life and joy. And I vowed I'd do that one day. I thought, "One day, I'll go there. I won't feel intimidated by my own fears, I won't give in to anxiety, I won't be scared of panic attacks."
And yet, here I am, having bought a ticket to fulfil my years-old dream of festival wonders, new places, a mini holiday with not much in the way of cleaning facilities, every chance of minimal sleep and lots and lots of people. All I keep thinking about is if I'll panic. "What if I can't sleep?" and "What if I feel sickly and anxious, and retch and panic so completely stupidly?" bounce around my mind like Tigger. Playing table tennis. On a trampoline.
How can I let these thoughts dictate my life? If I get anxious in a shop, or at my relatives' homes 200-odd miles away or at my "safe place", at home, I may as well be anywhere. I could become panicked about being so far from home. I could be unable to sleep properly or at all. I could get very cold at night. Equally, of course, I could not. All could be well and I may have a supreme time at an incredible festival with so much to see and do, more than can be experienced in three days.
The way my brain works annoys the HELL out of me, because it is my brain and I should be able to control it. Shouldn't I? If yes, why can't I, sometimes? Why does it cause me so many problems? Is it actually me causing the problems? Is it some subconscious defence mechanism? And, if it were, it's a rubbish one, because we're meant to move forward with life and do things we don't want to do, but by not doing those things, we become stagnant, and dull, and depressed. I'm already the latter; I don't want to the other two to happen to me.
Perhaps my previous blog post was more apt - ARSE.
Monday, 26 April 2010
I am Gluteus Maximus!
...does that translate as "I am arse!"? It's probably true. Probably...
On this, the third "heavy" day of my period but the fourth actual day (wearing JEANS!), I had an appointment to see my GP to be injected with goserelin, better known as Zoladex. This is the substance which will stop the ovaries functioning. And that means menopause. If you've read the previous post, you'll be aware of the operation and what happened after it.
Neither my GP nor I was certain about the dose and form of administration. At first, it was assumed it would be an implant, requiring a local anaesthetic. Fine. I won't feel the wide-bore needle, so that should be fine! Oh. What's that? It's an intra-muscular form? As in... must be injected into a muscle? Where's that, you say? In my ARSE? Oh. It's the same size of needle as used by phlebotomists, so it'll be fine. Won't it? Yes.
And it was. But now? In all that is holy in the name of BISCUITS, I wasn't told it'd hurt this much. I can barely walk. I'm being a wussy little girl; when I think about the needle for too long, I start feeling woozy, and need to sit down. Or lie down. Was I being too optimistic, hoping I'd be mobile, still? Is it unreasonable to feel yet more enraged that my body is stopping my decisions from being turned into actions? They're not vastly important things. I wanted to make a bag, a little project to keep me busy, give me "something to think about". It'll probably end up resembling a dinosaur with wings but that's not the point. I bought the fabric. I will do it. Just... not yet.
Zoladex, Premique, Citalopram, co-dydramol, keral. Body, brain, body. Anyone want to swap? I'll fight you? (I won't. I'm a wuss, remember.)
And we don't have a stair lift. How AM I going to get up those stairs? The time now is 22:38. If I start climbing now, I could make it upstairs by midnight.
Friday, 16 April 2010
Is this the endo my pain?
Probably not, no.
I was lying in my hospital bed on Monday 15th March this year, after the laparoscopy, when the consultant I had seen several times since 2008 came to see me. He had been "in clinic", over the other side of the hospital. He hadn't been able to perform the surgery; he was meant to on the previous Thursday but various occurrences meant my operation had to be postponed.
The decision was made, by me, to have a laparoscopy to find out, once and for all, "if" there was anything "wrong" relating to my womb, ovaries and/or ladybits. Some of you may be aware that, from the age of 18, I have been continually told there was nothing wrong and my irregular, heavy, prolonged and insanely agonising periods were something I would "grow out of" or that would "settle down" in time. The pain before and after periods and the bleeding between them was also not something I ought to concern myself about.
Not only have I been told that my pain was "psychological", I was also told that I was "too young for anything to be wrong with (my) ovaries, darling". And, that the only thing which would cause the sharp, tight, stabbingly-sharp pains in my lower right abdomen was "endometriosis of the ovaries, which you don't have", the non-surgery-performing-but-bed-visiting consultant said.
Still in immense pain after the laparoscopy with my awesome Ma beside me, I was told, by the NSPBBV consultant, that during the operation, the Mega-neat surgeon discovered that there "was endometriosis on both ovaries". We found out later in the patient copy letter from the Mega-neat consultant who performed the surgery, that it was also present on the posterior uterine wall and the left pelvic side wall. In the letter, it states that the larger right side (ovary) had to be drained. This accounts for, not just the pains with periods and between them (every day, in fact) but also the amount of pain after waking from surgery; he used diathermy to remove the endometriosis he found. That essentially means my innermost ladyparts were burned, hence the incredible agony I felt, not to mention the utterly horrendous "wind" pains in my right shoulder and chest. I mentioned it. Oh.
Less than a second after the NSPBBV consultant said those ground-breaking words, I sobbed. My right hand somehow hurled itself to my eyes, which then started leaking, as well as my nose. Messy. I wasn't crying because I'd finally been told what was wrong with me, or because I knew what it meant from now, onwards. Rather, I cried because I was so disappointed, I had been so terribly let down by people whom I trusted to help me, but instead, they neglected to do their job. They neglected me, allowed me to suffer so much unspeakable agony for so many years. I knew what was wrong with me, I knew, completely, that endometriosis was the cause of my pain. I'd tried to tell "them" so many times what my pain was like, but I was stopped mid-sentence, ignored, patronised and insulted.
What happens now? What do I do? Zoladex injections, every 28 days and Premique. What are they? Well, click the words and find out! Or, I can tell you, not very coherently. It is late as I type this and really need to sleep, but this is the third draft of this post and I just want to get it done. So, Zoladex will halt to ovaries for a few months, inducing a menopause. The break from periods occurring should (hopefully) give me a rest from feeling so tired. All the time. From aching, head to toe, and feeling like my womb is trying to cut its way out of my abdomen. And the Premique is a form of HRT, to try to counteract the menopausal symptoms.
There are no guarantees with this (unfairly-named, to my mind) "disease". I prefer "condition". It is not curable, but can be managed. However, "can" does not mean "will". Some women are lucky, and have no pain, while others have immense pain which can not be controlled. And even hysterectomies and double oophorectomies are not certain to stop the pain. Some women have hormone treatment for some months and are free from pain. But the condition will still be there, it just may not "happen" again.
Since my surgery (with MEGA-neat stitches and wounds, and now scars. Did I mention? Super stuff! Tiny entry sites. Amazing...), I have had a period - on the Wednesday, just 2 days after the operation. It was bloody painful, if you excuse the pun. Less painful than I expected but still enough to wake me at 5am and make me nearly fall down the stairs to get a Keral in my face. Took much longer to work than the 20 minutes the NSPBBV consultant told me but hey, never mind, EH? It actually took around 40 minutes to work.
And now, I await another period. I haven't had a day or, indeed, hour without pain. Apart from sleep. If there was pain, I haven't noticed it, so bedrugged am I with anti-depressants and codeine. (I shan't go into details - although it may be too late, now - but the amount of codeine I had made for a toilet situation vaguely similar to that experienced by Lisa Lynch in her ASTOUNDING blog, AlrightTit. I am also so stupendously proud to call Lisa an actual real life friend of mine, all thanks to the wonder that is Marsha Shandur, via the world of Twitter. (I went to Lisa's Super Sweet 30th birthday party in London in September last year with the equally AMAZING Amanda, but didn't get to meet Marsha. Good news for her...)
For 10 days I have had the familiar pre-period pains and heavy, dragging, relentlessness of my womb and parts. It would seem, then, that the surgery to remove the endometriosis was partially successful; bits were taken away/burned, but the pain of it all is still happening. Bugger. Today is day 30 of my "cycle" and I don't have a clue when it will start. It may be another 2 days, or 2 weeks. I'm not just impatient with my body (even though I know I can do nothing, actively, to stop it hurting); the sooner the period starts, the sooner the Zoladex injections can be started. Must be administered, subcutaneously (in the stomach), within 5 days of a period starting. As the NPSBBV man said, "(my) body needs a rest". NOW.
So, altogether now... HURRY FUCKING UP!!
Tuesday, 2 March 2010
Open letter/email regarding my love for music.
...you rip the heart and soul out of each music-adoring person who loves that station, for whom it is the only station on the ENTIRE radio network worth listening to. Not just for me, 6 Music has accompanied countless nights and days, along with its sessions of such high quality, the brilliantly wide range of music-loving presenters and their obvious desire to play music THEY love, which is what WE love, too.
There are TWO Radio One stations, neither of which commands respect or attention due to its dire and repetitive playlist, and its (mostly) inane and shrilling "presenters". And there are TWO Radio Fives, when one suffices! One of each was enough, so why and how on Earth did anyone think there was a need for another? And another?
To hear the people who present the programmes on 6 Music enjoy the music as much as we do and be so excited by it, is such a thrill for us. They BELIEVE in the music, they LOVE the music and they LOVE the station like we do.
To have that incredible mix of music, the newest possible tracks with the oldest and most varied songs of decades ago is unbelievably good.
To have Guy Garvey, Bob Dylan and Jarvis Cocker presenting on 6 Music along with Andrew Collins, Shaun Keaveny, Marc Riley, Steve Lamacq, Gideon Coe, Liz Kershaw, Richard Bacon... that's not even counting the astounding shows with Craig Charles, the rock shows, the documentaries, the archives... These people are supreme in their field and the output is as varied as it is excellent. And ALL of this is on 6music. That is, literally, amazing.
It is SO GOOD. And good is not found very often these days; satisfactory is not good enough. But 6 Music is better than it needs to be, and that is what sets it apart from the rest, the less good, the not good enough.
The passion, maturity, utterly superb talent and such wonderfully eclectic music that is present on 6 Music are to be found nowhere else in, on or among this country's radio stations. I implore you to think about this ridiculous decision to rid the BBC, this country and its devoted and intelligent listeners of something which doesn't need to be hidden away in a digital world; why is it not an FM station? If people aren't given the chance to hear this wonderful and, at times, magical station, how will it ever become more popular? How will people without DAB radios ever hear it and its wonder?
I love and adore and cherish 6 Music; it's the only reason I wanted a digital radio. I don't listen to anything else on it. It's always and only 6 Music.
We love it. I love it. Please don't take it away from us. Please don't take it away from me.
Lucy Palmer.
Sunday, 23 August 2009
Jaffa cakes aren't biscuits...
They dunk well, but go soggy if left too long. And chocolate ends up in the tea, which isn't the point of tea. But still. Good show.
I'm planning a weekend in London soon. I've never been to London for a weekend. The thought of it both excites me and intimidates me. City life is so different to what I know and where I live. It's uncitylike here. I live next to a field. I hear the cows and sheep and cockerels that live on the farm. We don't have a train station. There are 3 very near here, but my town, such as it is, doesn't have one.
My life has never been full of trains and commuting and the hustle and bustle that goes with that life. Because I've never had a job, I've never had to get a train or a bus or drive somewhere, along with everyone else, with responsibility and tasks and meetings and deadlines. Or the like.
And because of the way depression affected me in my teens, it stunted my confidence, thus preventing me from growing into the young woman I wanted to be. And I'm still not that person, because I don't do the things I so yearn to do.
Being around lots of people isn't something I'm used to. I sometimes find it overwhelming, and it makes me feel unsure about what to do or say, if anything. But that's not to say I don't want to be in those situations.
So, the weekend in London is a huge event for me. I shall be meeting new people and seeing new places. I've been invited to a party, which promises to be immensely exciting and such fun. The next day, I'll be meeting yet more new people, when I attend a "do" in a park.
Regarding trains and the journeys, when I arrive at my destination, I see buildings higher than any in the nearby "main" town, hundreds more people than I'm used to, more noise than my ears have heard in my familiar territory of flatlands. "My" town is so small that everyone sees at least 5 people they know when they walk to the shops. There are not that many shops, admittedly. Nor that many people...
Of course, it's not unique to me, this being slightly apprehensive about new places and people. It's not the tall buildings, the unknown roads, nor even the ker-azy disco buses that put me on edge. What really concerns me... is me. My mind. My occasional inability to stop panic attacks. Why? I have no idea. Sometimes, in these unusual yet often exciting situations, I have no trouble and am so relaxed. Other times, even when "things" are OK, By that, I mean, "things" are OK. Lately, "things" have been going fairly nicely. I've been moody and tired and... well, I've been depressed. As now. At least, now as I type.
This is in no small part due to the fact that I'm a hypocrite. I admit that. For example, I love animals but I still eat them in pork, fish (it's a dead animal, so it counts), chicken, beef, et al, form. I'm not brave enough to kill an animal and gut it and pluck it or skin it. I am a hypocrite.
I have told people I know - who are on anti-depressant treatment - who have said they may stop taking their tablets, not to do so. It's not a wise decision to make. Not by oneself, anyway. But then I did that. Well done, Lu. Well. Fucking. Done. I am not, it seems, immortal. I "wobbled". I tumbled down that horrible, bumpy, tearful slope back to depressionville. Hello! Not been here for a while. Bugger. I'd rather be in London...
So, now I'm planning this huge event, this lone trip to London, when I am mid-"wobble". Is it sensible? Possibly not. But I don't really care for sensible. I am careful, but sensible is boring. It is dull. I want adventure and random fun and spontaneity; to go to London and meet my friends, to stay with them for a few hours, or overnight; to eat in cafes and walk around the roads and parks and hidden shops they are so used to, for it is all so new and exciting to me. It's uh-mazing.
That's the life I want. Not for everything to be amazing. Rather, for what I just typed to be what I can do, and not think about it; for me to do it and not study the photos of the stations and the routes I have to take so that I don't get lost; so that I can sleep easily in a friend's spare room or sofa or in a hotel room and not wake with a start that I'm not in my own bed and think OH MY GOD I must have to panic... which is utterly ridiculous. But, rational thinking has never played a part in anxiety and panic attacks. Which is sort of part of the reason they happen: they are not rational. At all. Not even minutely. They also are not harmful, physically. It's all about the depression. Even more fucking annoying.
But... I have to remember that presently, I am getting back to an evenness I so stupidly sacrificed because for a few weeks, I skipped too many tablets. That will take some more weeks for me to feel right, I suspect. Quite touchingly, I was told by a very lovely friend to "TAKE CARE OF YOURSELF". Yes, sir. *Salutes.*
I'm also very confused about my periods. They still hurt like hell but not for as long as before Mirena. They are shorter and lighter, too, but this is not what I'm used to. It's strange. My hormones still seem to be pissing about, somewhat, making me feel even more ugh.
As well as the above, there is a problem I haven't really mentioned before. It's taking its toll, still, months after I thought it'd ended. It's very difficult to cope with sometimes and I don't know what to do about it. It makes me feel physically and emotionally unwell, besides the depression. But maybe that is what's making me feel worse? Or maybe it's all of these things...?
And then, of course, all this cancer crap with The Ma. Which still doesn't seem real.
Inevitably, I feel, I am both incredibly excited and nervous (about IF I'll get anxious. DUH Lu. DUH.) about London. I think it's a wonderful city. It's not just full of some wonderful people, fascinating architecture and important history; it's the city in which a lot of my family were born and raised, where they lived and worked. That's wonderful, to me.
Bumpy, steep hills are not easy to climb. Especially when you live in the flattest area of the country and don't want to break your nails before the party. I have some particularly lovely friends who make me smile, who have kept and will keep me smiling on my dark days, whether they know it or not. Aside from my family and music, they keep me going. And in one case, she's the one who'll get me to London and together, we'll have much London fun. Like Bill and Ted.
You ready, Amanda?