Painting the nails red

Friday was "Going Out" night for me. If you've been reading this blog for a while and/or know how my life is, you'll know I don't do going out at night, let alone in the daytime, save for doctor or hospital appointments, or a nice walk to the local shops.

Following a few days of a less-bad-but-still-pretty-horrible-and-soul-depleting period, I spent a wholly wonderful and giggle-filled afternoon and evening with a friend before we went to see a show by another of my friends. Possibly, I should have stayed at home, and carried on "resting", as I'm still eating the dihydrocodeine for period-related pain, and still have the all-too-familiar dizzy, heavy, aching of endometriosis and its period and ovary pains.

Along with the not-so-new anti-depressant, Duloxetine, the grogginess and urgh that come with the endometriosis generally, the periods, and the codeine can be quite hard to cope with, when I know I have to get things done. Mostly, those things don't get done. Or, they do, but much, much later than I have hoped or planned. Frustration often leads to guilt, which, in turn, leads to anger, more often than not. It's hard, at times, to remember that my not helping out at home is not because I'm a bad person or that I'm lazy; I'm not well. It's not my fault I'm affected this way, of course it's not. It's usually a complex mountain of emotions, so tangled, a considerable knotty mess. Worse than trying to comb my hair after a twiddle session.

The journey to the venue on Friday night took much less time than I'd expected, which was a bonus, and the scenery was really quite lovely. Horses, cows, hobbies, a kestrel, churches, countless green fields. The evening itself was an altogether joyful, happy, silly, giggly, being-with-friends time, and even though it seems to have fully broken me, my Rapunzel hair and I would not have changed a thing. These events happen so infrequently for me that, when there's a chance to enjoy myself, I grab it, and I want to fondle it, squeeze it, lick it, and keep it forever in a little box. I'm suffering now: I've been in stiff, achy pain all day; the period and ovary pains are still doing their worst; my concentration has been depleted beyond what I consider reasonable; and I've been tweeting happy happy codeine nonsense. Again.

It can be very easy to misjudge the abilities of a person if that person is seen doing "normal" everyday activities. If I'm seen to hang washing on the line in the garden, or walk to the post office, or tidy the kitchen, someone may well assume I can always do those things. As Jo says in this blog post, when you have, for example, a chronic pain problem, some people will only ever see snippets of your life, like excerpts from a film. Some parts of my "normal" day-to-day life are never seen by some members of my family, neighbours, acquaintances, some friends, although some of them know what my life is like, because theirs is so sadly similar. Most people will never know how the pain and the fatigue affect me, what they don't see is when I'm lifted off the floor because I can not move for the pain which stuns me in to submission, at the mercy of endometriosis. It's not a surprise to those who have similar troubles that some arse-candles have told me to keep my chin up, to put a brave face on, to look on the bright side. Really? D'you think I'm not already? Apparently, some people think that's the case. Knobheads.


It's been a long time since my last blog post. In a so-vague-it's-really-not-similar-at-all way to Lisa with her latest blog post, the reason is not because I've been terribly ill, either physically or emotionally, but because I've sort of done stuff. Not big, adventurous stuff. In my last post, I told you about my gym sessions at the hospital, and that I'd update you on how they'd been. Well here's the update: they've been MARVELLOUS. I've missed some, because of a clash of hospital appointments and the inevitable endometriosis/period bothers, which has been really bloody annoying, if you'll pardon the pun. I was brilliantly confident in that first session. Confident for me, anyway. I stood at the front, not hiding at the back like I would have not so long ago. I got the red Thera-Band - which I LOVE so much I bought my own - and I stretched and breathed, and stretched, and relaxed, and stretched, and breathed. I talked to people I'd only just met, I had fun on the cycling machination gadget, I walked on the conveyor belt, I bounced on the gym ball.

And I loved THAT so much I bought my own. It's blue. And it's a ball. It's a lot of fun. And I can feel it and the Thera-Band making a difference, I can feel my muscles working, being used, aching from being used. And they hurt. And it was good! I felt good! I suppose it was the endorphins doing their feel-good thing, but also that I'm aware I'm doing what I wanted to for so long, i.e. exercise, but felt unable to. I was hurting but because of something that was helping me, that was good for me. It wasn't something that was pulling me back from what I was nearly about to achieve but couldn't quite manage because of the pain, which stopped me walking out the door, or reaching across the worktop, or using the vacuum cleaner. This hospital-prescribed exercise has been the shove I needed to get back to being active, even if not quite on the same level as an athlete. It's enough for me, to help strengthen my body to better deal with the pains I have daily, and with periods.

Other bits and pieces have been going on and, while not super-important or life-changing to me, have been enough to be more important than sitting on the sofa tweeting about tea and whatnot. Because I've felt like doing other things. That still doesn't mean that I can do all the things I want to, because I still can't and maybe that won't happen soon or ever, but it might. Having that positivity is so incredibly important because it means other aspects of my life might change. I'm having more good days, and more good hours in those days. I'm waking up earlier, getting to bed earlier and doing more between those two happenings. I'm still tired, I'm still in pain, I'm still eating codeine every day, at least twice, and I'm still rattling from all the other types of medication I have to take each day.

Helped along and brilliantly encouraged by gorgeous friends, I've begun to do things I have wanted to do for such a long time. Such a long, long time. I'm watching films I've wanted to see for years but just never got round to. I've started - finally! - listening to classical music, which I've liked very much for so long but never quite got round to properly discovering. I have now. And I love it. I've found some new favourite composers, and works, and it moves me, building emotions the way only music can for me. Procrastination is one thing; being prevented by bad health is very much another. Of course, I do waste time playing Words with Friends - challenge me at thecurlylucy - and looking for ridiculously cute photos of animals on Daily Squee. Of course I do, I'm an idiot. Who isn't?

Even though not doing what I should do isn't really a good thing, not doing it because I have chosen not to do it most certainly is good. For me, at least. Not great when I've been asked to vacuum the hall and stairs 87 times in 2 hours, or when I'm meant to have got the washing in half an hour ago rather than punning to Twitter. Being prevented from walking normally, being "made" to stay on the sofa or in bed or on the floor, not having the physical strength to even speak because of the tears and the pain and the desperation to have all this stop and give it a rest is surely no-one's idea of a good life.


Before I started typing this blog post, I had it in mind that I'd finish and post at about 9pm. It's now past 2am on Sunday morning, and it's not quite finished. Why have I taken so long? Silly texts with a diamond of a friend. (Carbon Man!) Playing Words with Friends. Playing on Twitter with puns about potatoes. Watching the Germany vs Poland Euro 2012 match. Watching Harry Belafonte talk to David Lammy on Sky Arts 2 at the Hay Festival. Some of the delay in writing was because I wanted to do those things, while some was because I couldn't seem to move. Fatigue, codeine, endo. I expect I'll carry on recovering from Friday night for at least another day yet. It's still quite crap how long recovery takes, and loathe as I am to rest and take it easy to enable me to do stuff, rest I must. Which is why, at nearly 3am, I am still awake and typing these very rambly words. Sensible is not my middle name. Clearly.




And so, with meh-inducing pelvic pain, ever-heavy eyes, and an increasing inability to type coherently, I am away to bed to sleep and, hopefully, have a night full of rainbow dreams. Sunday will, if my plan transpires, be the day I finally watch Tron after feck knows how many years of wanting to.

Goodly night! Or good morning. Or afternoon. Or evening. Or whatever.


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Let's get physical!

Visions of precarious pensioners huffing and puffing and heaving their way around treadmills and weights began to inhabit my thinking where, previously, quite reasonable notions existed. But hang on - I'm 30-years-old and have chronic pain, so where did those assumptions come from? And aren't they unfair? Well, yes. Of course they are.

My pain management treatment with the hospital includes gentle exercises "to enable individuals with ongoing pain to improve their activity levels". I'd attended this kind of happening, just once, many years ago in an attempt to help strengthen my wobbly, dislocating knees. It didn't go well; I was catastrophically premenstrual and had a mood on. I didn't go back.

When these current fitness sessions were suggested, I was, initially, apprehensive. In a keen-to-try-it kind of way. I have to try everything the pain people have to offer, of course I do. I've seen the psychologist, who was very lovely, and helped me to view aspects of my life in a not-so-gloomy way, to hope for better while still being realistic.
I've begun using a TENS machine, which, although not a super-treatment for my endometriosis pains in all their varied glory, does help in some magical tingly way.
And I've changed my anti-depressant by swapping Citalopram with Duloxetine, as suggested by the pain people, as the latter can help lessen pain. And things are changing...

My last period - and the second on Duloxetine - was still painful, I still needed help with moving and such, and I still felt fairly knocked out by the effects of endometriosis, the pain, and the painkillers. But this time, the pain wasn't breath-takingly horrific. It wasn't so terrible that I was disabled by it, nor was my ability to communicate with speech taken temporarily by the impact of the pain. Yes, I was still on the sofa but only for 2 days, and most of the time I sat up, watched who knows what on telly, laughed, joked, texted. I was in "good spirits". That NEVER happens when I have a period. I slept for an hour or so on both days, but that is much reduced when compared to my "normal" periods. And it's weird. But good. But still weird.

This. is. wonderful.

Duloxetine has decreased my pain. The everyday pelvic aches and ovarian sharps are still there, but not as intrusive. I have some bad days, but fewer than before. And, on Friday, I wore clothes! Not just comfy trousers and a comfy top. Actual out-of-the-house clothes! I wasn't going anywhere while wearing those clothes but I felt like wearing them, rather than just wanting to. I didn't feel enough pain to warrant a hot water bottle, which, when wearing jeans, can burn like a mutha. Metal buttons + heat = OW. I still took my trusty 30/500mg co-codamol several times through the day to block out some pain but it was underlying and unobtrusive pain.

Reiteration: This. is. wonderful.

It's a huge change for me. Improvements. I've wanted this for so long, and never thought I'd feel it happen. This is no miracle, and it's not an instant change to my life; rather, I can see how unfortunate - but sometimes very likely - habits can all too easily form from frustrating situations in one's life. And, probably most crucially, I'm able to see these different viewpoints without feeling like I have to be defensive of the pains I have, or how I've been thinking. I don't always get things right. I make mistakes. My pain is real. But it's becoming less important in my life. I'm making it less important.

On day 3 of my last period, I was dressed. I was able to get dressed. I could stand up in the bathroom for 10 or so minutes without needing to sit on the edge of the bath to stop my unstable body giving up on me, and landing on the floor. That day 3 was mine. I "earned" it, I took it back, I unpeeled the cruel grip that endometriosis had on it when it stole it from me. A whole day! What did I do? I laughed. And I walked with stiffness, but easy stiffness. I marvelled with Mum about how different I was. I could see, when I looked in the mirror, how much better I looked. The mirror didn't crack. Enormous improvements...

For the first time in I don't know how long, I'm actually optimistic. I'm not setting my sights on an absurdly unachievable goal, but I am hoping to be able to get back to - among other things - my beloved Art, and yoga. Again, I don't have unrealistic aims; I must work within my limits, while simultaneously doing all I can to further my physical fitness and emotional well-being. (Ugh, how I detest "well-being".) I'm still mulling over the Art part. I'm quite sure I'll be unable to rely totally on any income I may be lucky enough to acquire from selling my Artwork, so I shan't be aiming to be entirely independent, lest it does not happen and I end up in a sobbing mess on the floor with a ton of snotty tissues beside me.

I'm as sure as I can be that my periods aren't going to "settle", or be less dominating, despite the reduction in pain, but they are having less impact and the cut-down pain, therefore, has meant that I'm less reliant on other people and THAT, blog fans, is almost THE most important change in my life for a very... long... time...


In the next post, you'll find out how my first hour in the hospital gym went.


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Undateable

Some television programmes have gained criticism before even being viewed, and The Undateables, on Channel 4, was no different. Apparently, it was tasteless, offensive, patronising, and crass. It wasn't, to my mind. I think it's easy for people to laugh at the title; I did, a little. The point of the programme was obvious to most people who watched it, I would like think: looking, behaving or sounding "different" doesn't mean you're not interested in love or sex, but "society" might sometimes assume it is so. Another point might be that there is sometimes a reason for some people behaving in a way that isn't expected by some other people. You can't know about someone or judge them with a righteous opinion if you don't know anything or very little about them.

The first episode in the three part series featured Richard, Penny, and - my favourite - a funny and handsome northerner called Luke. He has Tourette's, and the spectacularly-named and very pretty girl, Lucy, with whom he spent some time, laughed when he swore. And I did. And I know others did. Is that wrong? I don't know. The way he sort of answered his own sweary tics was golden - after talking about the kind of girl he'd like to meet, he said, "Wanker! ...but not a wanker" - or looked knowingly at the camera after ticking was so charming. Just like a "normal" person might be! Who'd've thought it? Not some people, it seems. When he swore randomly and I laughed, I wasn't laughing at him. It's hard (for me) to not at least chuckle when someone says, quite loudly, "WANKER!" at no-one in particular. I thought he was completely lovely, genuinely funny, and brilliantly self-deprecating. And beardy. Something of the Jimi Goodwin about him. And that can only be good.

It's a sad and, I think, embarrassing truth that some people do actually believe that someone who, for example, uses a wheelchair or who looks maybe just a little different to what they expect is not interested in or entitled to a love life. OR A SEX LIFE. Who'd have thought a human with a heart and a soul and a mind would want to be loved? Crazy thinking! But yes, some people, within their tiny brain peas that rattle about in those big old boneheads, believe people who use wheelchairs shouldn't be allowed to have children. A friend of mine, who uses a wheelchair, was told this. She should have been aborted or drowned at birth, according to some particularly charming erudites.

It goes without my having to say I wholeheartedly disagree with idiocy such as the above piffle, and not just because she is my friend. A dear friend. A friend so dear to me, whom I love so very much I can't find the words. Sometimes, she suffers so badly with such terrible pain that her independence disappears for a while, and she needs help with the most normal daily tasks.

I'm not an independent person because of my health troubles. When I was in my teens, I didn't have independence because of depression and nearly being sectioned all of 4 times in 3 different places. I had pitifully low self-confidence, and felt so frightened of talking to other people and making eye-contact. I'm just a little better at that now, but still feel shy at times. My online persona is the same as my offline persona, at least among those who know me in that real world place. The only difference might be that meeting new people can sometimes mean I'm not so talkative either one-to-one or in groups; I have trouble knowing what to say in conversations or just as small talk; I worry that I'm boring people or appearing to be a total knob in every way. I'm very sure - confident, actually - that there are some people who believe all that to be true, anyway.

I've never considered myself disabled because, erm... well, I'm not. Of course, people feel differently about many things, be it politics, love, spicy food or Danish police dramas. And I do wonder how people feel if they are told they're disabled, if they're given that label by others or themselves. Is it a label? Is it limiting? It is frustrating? Does it induce anger? Do people class themselves as disabled? Is it degrading? Is it helpful? Is it embarrassing? I suspect others may think it's something to be embarrassed about if they themselves are not disabled and don't understand or appreciate what it really means, regarding the effects on living. I think those same people might also think completely differently if something happened whereby they were to lose the ability to do what they usually do, or if that were to happen to someone they love.

If you've been reading this rambling blog a while, you'll know that my endometriosis affects me in such a way that, when I have a period and the pain is at its worst, I am unable to walk, talk and move without help from someone else, most often my Mum. In that respect, it disables me, so I am, therefore, temporarily disabled. And those kinds of words are used in the text relating to the benefits I receive: "If your illness or disability has a severe effect on your ability to work, you won't be expected to work." I don't consider myself ill with endometriosis or depression, at least not currently regarding the latter. My endometriosis-affected bits do look diseased, so sometimes I think of it as a disease. The photos in my medical file definitely aren't pretty. Endometriosis is certainly a condition. Disability, though? No. Not for me. Or is it...?

After and during watching The Undateables, it set my mind to thinking about my own situation, and about how I'm single and have a limited social life but for the wonders of the internet and my phone. And those postal letter things on paper things with ink stuff. I am the textbook case of the girl who really doesn't get out much. Am I to be consigned to the scrapheap of spinsters? Are my chances of companionship obliterated to sod all? Have I passed the age of absolute happiness? Probably not. My life has changed so much in the last 3 years alone because of endometriosis and, because of that, obviously I've changed, too. Aside from my increased confidence and weight, my expectations and hopes for my own life have altered because of the surgery and treatments I've had, because of the prospects of pain, and the limitations imposed on me because of the pain. Aw, poor me, and so on.

The people I consider friends whom I've met in real actual places and online through Facebook and Twitter have very often been wonderful. It's lovely, of course, when people say you're bound to find someone, because it implies they think you're kind, caring, worth being with, worth talking to, that you are, essentially, relationshipable. Hey, new word! Someone call the people at the OED. But how? How am I meant to find someone? I wonder what kind of partner I make now. Am I worth it, worth being with? (I'm not going to do a Brick at this point, don't worry. Unless I want to laugh hysterically for an hour.) I'm a stressy person to be around, I think. On my good days, or at the OK times, when I'm not crying in pain (endometriosis) and sobbing because of the way I'm affected by the pain (depression), I'm really rather fabulous and lovely and funny and wonderful. Oh. Damn. I did a Brick. SHIT.

If I'm to be loved - by anyone, family, friend, other - it has to be for the way I am, including the not-so-good times as, indeed, it should be for anyone. When I'm depressed, I do not care. I mean, I care for my closest family and friends, but not about me and things and routine and clothes and emailing and texting and talking - I. don't. care. When I'm ill with periods, I need looking after. Even though, with the new medication, the pains are slightly less intense but I still need to be almost literally carried from, say, the floor of the hall to the sofa in the living room.

As the divine Marilyn Monroe said, "I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best." And how brilliantly true, from a beautiful and wonderful woman who suffered horribly with endometriosis and depression.

Really, what kind of prospect is that for a man? For anyone? It's rubbish. I know it's about love, and if he's good and true and honest and kind and all that, none of that will matter. But. I can't help but feel that I'll just not be anyone's other, someone's wife, the soulmate of a man with a love for Art and Blackadder and Doctor Who and tea. Not necessarily all of those but really - no tea? GET OUT.

Of course I don't want to be alone. I'm not bothered about going out every night and, let's be honest, that's *AMERICANISM KLAXON ALERT* SO not going to happen. When I can, I want to go to Art galleries, museums, exhibitions, see the new Aardman film at the cinema, visit those big posh houses in the country, watch documentaries about Mitchell and Kenyon, and DVDs of A Bit of Fry and Laurie. I want to be able to sit in front of the telly, with it switched off, and instead listen to Radio 4, and knit or crochet and swear when I do it wrong and then laugh and look up to see "The Man" laughing, too. I want to do all those things with "The Man". I want to be WITH someone, laugh with, literally go out with. BE WITH. I've been on my own - i.e. single - for so bloody long and I'm SO bored with it! And, y'know, I'm sort of getting on a bit now.

I already have 2 walking sticks. And, I must make myself totally clear at this point to ensure that you know, you lovely reader, you, that I don't have it all set out in a plan and believe it ABSOLUTELY MUST BE THAT WAY ELSE I SHALL DIE ALONE, SURROUNDED BY MY 11 CATS WHEN I AM 74. Common interests, shared passions, that sort of thing has to be there. I think. For me. In my opinion. I think. Clearly, The Man has to be exceptionally understanding about this almost impossible life of mine. Otherwise, as with the tea, BUGGER OFF.

And I don't like the tag of "singleton", because it sounds like something from Sex and the City and I unequivocally can not stand that programme. "Looking for love" sounds desperate. And "looking for Mr./Mrs. Right" is just crap. But is it my time to see if online dating is for me? Should I see what might happen among friends? Or maybe I ought to just not bother after a heartbreak of a few years ago which still brings a tinge of sadness to my mind whenever I think about what on Earth I did wrong. Again, obviously (probably) he wasn't worth bothering with (although, I do still think of him, and I wonder if he thinks of me) but that's where the wonderful and slightly pointless-in-its-lateness retrospect becomes useful. Except for its lateness. You GIT.


Whatever the answer is, I know the time is right for one thing: Ovaltine. After all, I am wearing my slippers. I'm so hot, yo. Bring on the admirers! Or not...



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Anniversary Special

It's easier to be the person having an operation than to be one of the people waiting for news. Today has not been difficult, as such, but it has been witness to some stress and concern. And yes, a bit of worry. My Mum is always worth the worry, of course.

On Sunday 1st April, three entire years will have passed since Mum had her lumpectomy after being diagnosed with breast cancer mere weeks earlier. Outside was bright and Sunny, the birds still flitted and sang, the people still shopped for food, the night still fell. I remember not being angry about the situation in which we all found ourselves. ("We" is always Mum, Dad, brother, and me.) I felt angry that my Mum had to suffer yet more physical pain and more stress and more depression because of cancer. That bastard, the fucking shitster cancer.

Having cancer is bad enough. Jeez, it's hell. Having to undergo surgery to take away part of your body because of cancer is yet worse. But having seen my Mum suffer pain and all the other things that occur with a situation like that, and then be told that the cancer was more devious than they had previously thought is... well, it's terrible. We didn't know if that meant she'd have to have chemotherapy or radiotherapy, whether she'd be confined to a bed, whether she'd still be there at Christmas.

The tests post-op confirmed what no-one wanted to ever hear: "The cancer's spread." The lumpectomy wasn't enough. A mastectomy was needed. And so it happened. Devastation, research, tears, disbelief, fear, more research, more tears, anger. More anger. Lots of anger.

It all happened shortly after I'd gained some reasonable knowledge from reading alrighttit.com - big words, technical terms, how procedures were done, what happened first, which leaflets were given. God, SO. MUCH. STUFF. If you haven't read any of it, shame be upon you! Lisa is superb, P is wonderful, the families are gold. DO IT. DO IT NOW.

The breast unit which treated Mum was - and still is - outstandingly good. Her oncology team was wonderful. Utterly, truly wonderful. (There was a time I had to see the same surgeon when I had something of an unusual boob occurrence - no, none grew, sadly. From personal experience, he is a safe pair of hands. But that's irrelevant.) I knew when she'd have to be admitted for about a week to have her mastectomy she'd be very well looked after. The ward staff were so caring and careful, so thoughtful. I couldn't see Mum for a few days, because she was too unwell to see more than one person at a time and, of course, that one person was my Dad. We couldn't hold her, we couldn't squeeze her tight in our arms and keep her safe, because she was in so much pain that she couldn't speak at times.

One of the most brilliant things in my life is seeing my parents smile, seeing and hearing them laugh. That stalled for a while in those horrendous dark days. We still laughed. We had to. and we did because we couldn't not laugh. It's part of our lives. It's so important, and I think sometimes some people forget or don't appreciate how vital humour is.
We knew how lucky we were, though, because the mastectomy was, said the doctors, absolutely the right thing to remove what turned out to be aggressive cancers. Plural. Chemotherapy was not needed, nor was radiotherapy. The relief in my entire being was indescribable, after reading Lisa's experiences of it all. And even then, she left out information.

My parents, being soulmates, were equally as affected by this awful time in our family's history. Even though three years have passed since the surgical beginning of it all, it's not less disturbing and bizarre to say "My Mum had cancer". My Mum? MY MUM? You must mean someone else. You CAN NOT mean MY. MUM.

With all these reflective emotions and hormonal upheavals, it's not surprising this is not the jolliest of posts, but nor is it the most depressing. I know so very well that our lives could be so much worse, so difference, so dreadful. I have such dear, such lovely friends whose Mums have, in recent years, had drastic surgery and chemotherapy, friends of the same caliber who have been and who are going through that same kind of hell. It makes my endometriosis seem pathetically unimportant. I know neither it nor I am pathetic but comparing it to cancer makes it seem... well, so much less terrible. I'll hit myself in the face when this period arrives for saying that, I'm sure...

This current time of concern for my Mum is, as I said at the start of this post, nothing like that of 2009, but it doesn't change the level of care which exists. I would do ANYTHING for her and my Dad. I still think of those times every day. It's impossible not to, for me, because Mum and I spend so much time together, and we talk about all sorts. Around the house in their usual places, there are the hospital booklets and appointment letters and the post-surgery underwear catalogues from a friend. There are hot flushes and low days, the scar and the not-actual chicken fillet, the tenderness of nerves and skin that have still not healed fully.

And I will not tolerate anyone's extreme stupidity, the misguided ignorance of someone thinking they're helping raise awareness by insulting people, the telling me I should prove I know about cancer and its effects on people. I'm not sure why there are those among us who feel they must assert themselves in those ways, why they can't see how wrong they are. The selfishness of some people I've known is astounding, and the reluctance to admit wrongdoing is staggering, given the subject. So, I swore a bit. And? You'll get over it.

Now, if you don't mind, I need to eat a whole pack of Strepsils and a ton of ice. Goodnight.


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Padding

I was reacquainted with a different kind a pad yesterday. It wasn't the miserably familiar sanitary kind, but that of the paper variety. Cartridge paper. Daler-Rowney. Thirty pages, each 130g/m2. Pencils. Soft, hard, chalky, smudged, lines, shading.

It took a lot for me to do it. It was a mental challenge. Physically, it was easy. But I'd not done it for such a long time, I wondered if I'd be still able to draw what I saw in front of me and make it look the same. Or at least similar. And I worried that, if I couldn't do it anymore, what was I going to do? It wouldn't be the end of my world as I now it but I'd certainly feel stupid, and useless, and a failure. A failing, non-drawing twerp. It was a hurdle, one of those things to overcome, a fear to knock out with brutal force to prove to myself - never mind any other person; I'm tough enough to prove things to - that I still can call myself an Artist. I only sketched 3 or 4 things but I did it. That's what matters. I did it.

I'm glad I did that yesterday because, despite the still-glorious weather and the gentle heat, the birds singing and flitting between trees and eating the food I placed out there for them, I feel quite rubbish today. In a matter of hours, I felt the transition begin from feeling reasonably all right to feeling really not right, when the heaviness arrived. Yes, indeed - the premenstrual ughness is back. Already! For heaven's sake! So, the strong tablets, the disturbed sleep, the confused appetite.

Compared to my usual posts, this is mercifully short, but I wanted you to know that I've done one of the things I was so concerned about, and that I was pleased with what I did. I may show you, I may not. Not sure yet. What I do know, though, is that I'm very tired and still working through those bloody photos, reducing the sizes and moving them to different folders. Time for tea, I think.

As George Michael said, "Let's go outside". But only for sitting and drinking tea. No sex, please - I'm British. And I've got a headache.



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Changing the guard

No traffic. Occasional buzzing of a light aircraft overhead. Delicate rustling of the birch tree beside me. The intrigued meaows of the cats as they surprise one another from behind the lavender and euonymus. My dark hair absorbed the glorious heat from the Sun on a perfect Spring and, as I closed my eyes, I was in the place I call to in my anxious times, my ideal safe place, the place where everything is all right. My lovely garden and my lovely home.

Last night, Mum and I had been at a neighbour's house with several others to discuss plans for our Queen's Jubilee street party. Even if no-one wants to say "Hoorah!" for HRH Liz, they can at least have a nice cup of tea and a bop to Glenn Miller. My headache had not - and still has not - left me for days. I am still 95% certain that it's a sinus problem. Still. Again. Last night was the time of something else "interesting": the taking of my first Duloxetine capsule. Yes, it's my new anti-depressant! *Dramatic music.* I know. No more Citalopram. Shocker. I've surprised myself by how relaxed I feel about the change. I'm more comforted than perhaps I could've been after I discovered that Duloxetine is used to treat generalised anxiety disorder and... pain. I'd taken Amitriptyline for a few years a long time ago and again last year at a low dose after nerve bruising resulting from my second laparoscopy.

While I've been honest with you lot about my depression and insomnia and endometriosis, what I tend to hide is the anxiety aspect. I hide it from me. Or, I try to. It never bloody works, so I wonder why the hell I keep on trying to pretend things are OK or that they will be. Soon. It'll all be fine. A few weeks and it'll all be OK. But it's never that simple. Because of the anxiety, I've felt nauseous every day, my appetite has been quite rubbish, the aforementioned sleep disruption is building up to ARGHsome levels. My shoulders have been so friendly with my ears that I'm beginning to look like Gladstone Small.

I have months of "OK", and then a low, tearful, woeful wobble. And it repeats. Over and over. And this is a low wobbly bit. Eurgh. And all the fears of how to cope with it all, without Mum and Dad, how to live a "proper" life, how to try to relax when everything seems so hard to do, they all come back and punch me so hard in the gut it winds me. And I don't know what to do. Someone saying, "chin up" or, "rest for a few hours" doesn't help. I know what I need to do, but that doesn't mean I can do it. Depression isn't a simple "chin up = suddenly feeling better" equation. It's a punch-worthy thing to say.

It's something so bafflingly complicated and beyond reasonable logic, I wonder if Albert Einstein and Stephen Hawking collaborating on it for 50 years would lead to an answer. I can not cheer up. I can not take things easy. And while I'm bloody annoyed, I'm not brave, either. Living a life of pain and depression and fear isn't a choice I've made; it's something that's just as it is. It might improve. It might not. But it's not bravery. It's just... it's living. That's "all" it is.

Duloxetine and Citalopram are different types of drug; the former is an SNRI and the latter, an SSRI. Citalopram helped me a hell of a lot but maybe it's reached its limit. Maybe it's just not working enough any longer. I don't seem to have control over the anxiety like I used to, and part of me suspects it's because of the stresses of endometriosis coming, once again, to the fore to be all I bloody think about. I have high hopes for but not unrealistic expectations of the new fella. The bouncer outside my brain, protector of my prodigy, guarding my grey matter. But not the grey hairs. They can sod right off.

The places I've been invited to are family and friends' homes, they're full of welcoming love and comfortable atmospheres. I would love to go to all those places I've been invited. Gosh, I really would. But. Aside from endometriosis period stuff potentially being my jailer at those wretched times, I also fear myself. That is to say, I fear possible anxiety and panic attacks. It's so easy for one to avoid those situations or places that may be where anxiety and panic rear their exceedingly ugly heads, but one can't avoid them forever. The list of places grows so long there's almost nowhere left to go because the possibilities increase and then nowhere is safe. ARGH! Why do I let it bother me so? Why do I let it control me so much? Am I weak? Am I?

No. I know I'm not. Heavens, after all the pains of endometriosis, and the acutely depressive and deeply suicidal thoughts I felt when I was 13 and 14, I should think I can handle a bit of tough. Not too much, though, please Oh Holy Great Big And Really Rather Pretty Cosmos, please. Please. I have, after all, still the depression to contend with as well as all those other things: the stress of pain; the knowledge of pain; pain medication; managing and taking stock of my pharmaceutical cabinet filled better than Boots (i.e. the kitchen cupboard); hospital appointments; benefits. It's so hard to be "positive" when so much seems to be shit.


Baffingly, as I composed this post on the bench on the decking, under the birch, beneath the wonderful warmth, the only pains I felt were in my sinuses and my headache. My shoulders were still spying on my eardrums but nothing hurt. I mean, aches were still present and I was tired as heck but... it's weird. I'm not dismissing it, not at all; it's that it's different. When something is different, even if it's good, it's not necessarily easy to get used to.

So, did I go mad at the ironing board? Stay outside? Clean the bathroom? Sketch some... sketches? Dust and vacuum? It's "relax" or housework; I don't have enough spoons for both. When I came back in for another up of tea, the robins were still singing, the clouds were still passing slowly overhead, the breeze was lighter than a whisper upon my face. I wanted to stay out there. I wanted to go to sleep out there, in the quiet, in my mind's calm place. Had I stayed out there, I'd've felt guilty for not helping when I could have.

I cleaned the bathroom. And my headache still weighs heavy. I'd ask you to play violins but you'd disrupt the...

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Knees bent, arms stretched, ra-ra-arghhh...

It's not yet two weeks since Floodway Thursday, and look at me: laid out on the sofa, blanket over me, hot water bottle on my front, heat pad on my back, and strong painkillers in my face. Again. It's not another period; it's one of the mid-"month" bits I loathe almost as much as the periods.

It's not period pain, but pelvic pain. It's heavy. It drags. It's sharp, and drawing, and piercing. It aches deep inside in all the bits you can imagine and more you can't, and it won't stop unless I take painkillers. As an aside, I think I also have another sinus infection, on which I'm blaming my meagre appetite, stuffed up nose and relentless headache. I'm not sure if it's my perception of feeling a bit more ugh or if I actually am feeling that way that's made me tearful. I've felt really quite low and, while it's always easy to blame it on hormones, it might just be something other than. I keep experiencing trouble with my face, ache-worthy as it is. My sinuses always feel blocked, I have a (newly-discovered) deviated septum, and regularly feel pressure in my face. Usually, it'd be my brother using his hand to push me out of the way (aha ha ha) but now it's that unsettling feeling of a headache which just. won't. stop.

To a point, I can control my "normal" pains. I feel some pelvic aches, I take the appropriate tablets, I wait an hour or so, the pain lessens. I feel sleepy, sometimes giggly, always unable to concentrate. Occasionally, I can't speak coherently. That's when I giggle. And others do, too. The sods. It is funny, though.

When I went to the hospital a few weeks ago, they gave me a booklet called "Your guide to managing chronic pain" - it's full of wonderfully supportive words. It doesn't tell you to think positively to wish away your pain, because that's not how it works. It doesn't magically disappear and they know that. I know I've iterated this fact before, but I'm going it say it again: they believe me! They believe us!

Several days ago, I happened upon Krishna Talsania's article about the reporting of benefits "cheats" by uneducated readers of The Sun. In the piece, she says what I, and doubtless innumerable other people, have felt for so long: "It is a strange burden to have to be conscious of strangers' perceptions of your disability, rather than concentrating on striving to live life to the full." I still feel concerned about what others think of me, walking to the shops with such apparent ease. She's buying a set of pens? From Lidl? She must be laughing at all that money! No-one has actually said that to me but maybe they've thought it. The first thing people (who've asked about my employment situation) seem to wonder about me is why I'm not working. I could be working, of course. I could be a part-timer, I could be self-employed, working at home, on holiday. But when they know I claim benefits, but not necessarily what for, I can see in their eyes - not all people, but some - that they doubt I'm really deserving of the money, of the "attention".

The NHS pain services are, as mentioned, fantastic. Well, they are to and for me. Some of their literature includes some words of wisdom (also known as "common sense" in some quarters), and includes, "However pain in both the short term (acute), and long term (chronic), can be severe enough to lower quality of life, and in severe cases profoundly disrupt your ability to engage in day-to-day activities. Pain can also cause both short-term and long-term emotional and mental health problems."

Chronic applies to me. My quality of life is, currently, less than ideal. It's crap, actually. That's not to say I have no reason to live; I have many! Jeez, I can't count how many - that's how many. Yeah. Amazing. Anyway. It's the relentlessness that gets people down. I know this as a fact because I have spoken to people and read "stuff" and things. (I have.) The frustration and lack of social interaction/reduction in social life are the two aspects that people with chronic pain mention most often as the things that really, really get them down. They really, really get me down.

Here's something extremely pathetic: the new Lidl leaflets are something to look forward to. Just hear that tumbleweed go! There it is, look. All tumbly and... and weedy... See also: new Avon catalogue. And I genuinely really like the Avon catalogue event. I do. Less exciting, though, are the arrivals of the Kleeneze and Betterware catalogues.
Walking to Lidl, or the Post Office, or the charity shop from whence so many of my books have come is something to sort of prepare for. It's not Everest, admittedly, but it takes effort and it hurts me. It depends when I walk, though. When in my "cycle", that is. Premenstrually is not good for me. Yesterday - Saturday - I was not premenstrual, but it was still a little too much to do. It sounds so dismal a way to do things. And it is, reader. Dear reader. You poor sod.

The NHS booklet, with that comforting "we know it's not something you've made up" tone, has images of several gentle exercises to help you achieve tension release, and the stretches are easy to do. I still have to get back to the yoga. I did recommence it, and I felt good! I actually felt good. Well, not "good" but... but I felt "better". No, thinking back to it, I did feel good. And I tell you what, that's worth so much to me I don't even know which words to use to express how it made me feel. And then I stopped the yoga. Why? That's right! I had a period. *Sighs out loud.* I just sighed out loud. True.

In my last post, Housekeeping, I talked of my task of sorting hundreds of photos on my laptop. I'm still sorting them. There are more than hundreds. I think "thousands" is more apposite. It's taken so long, I can't believe it! Resizing photos from 4MB to 300KB, moving them in to new folders more appropriately named than "STUFF", moving them again to sub-folders more appropriately named than "OTHER STUFF". It takes time is the thing. And it takes effort. Bloody effort. Sitting. Just sitting, typing a few keys, clicking a few buttons.

But it's not. Because I also have the dihydrocodeine, which makes me very drowsy. The pain for which I take the tablets makes me fatigued and moody. The anti-depressants make me drowsy. I've said all this before. I'm basically always tired. And mental concentration has taken it out of me. When I'm "tired", I get emotional. And that's why I cried myself to sleep on Friday night.

The frustration of the computer being too slow, my pelvic cavity being a git and hurting every place it could two hours after I took two of the strong tablets, the cats' snoring getting louder, my face full of sinussy snot. *Cue dramatic bit* This bleeding, broken flesh prison, which doesn't let me have a break from any of it, is waiting until the next event to laugh me down and suffer simultaneously, in a fortnight's time. Or three weeks' time. Or four weeks' time. I don't know. It's day *checks calendar* 15 of my "cycle". I am dreading the next time I am sentenced to the sofa with almost all my independence stolen from me by my own womb and ovaries. *Understands this is endometriosis, which is not fatal, and realises this may sound theatrical when others suffer so much more.*


So, does anyone truly believe I, or other people, want to not work? That I'd not want to earn money through working? I think some people think I enjoy this life. I think those same people think that, as I said in the previous post, the pain stops once the state's money is given, that the mood lifts, the Sun shines, and the rain clouds disappear. Oh, look! A Disney bluebird flying round and round, over by the window. How quaint. I've had three doses of the strong stuff today. It's all helped. It's relieved the heaviness, the sharpness, the piercing stitch-like ovary pains. It's helped. But that's all it does. It doesn't stop anything. It doesn't cure it. It's all temporary. The laparoscopies are just maintenance. It's all just... housekeeping.



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