Living in pain

Posted: May 21, 2012 in Uncategorized

I’m sitting here with a rolled up towel behind my lower back, a hot beanie bag over my shoulder, thinking about when to take my next Naproxen. I’m one of the many people who suffers with chronic pain.

There are two parts to my back pain: My lower back has a constant dull ache which covers the width of it, usually starts at the bottom and radiates up over time to cover the majority of the lower and middle back. Then there’s the upper back – what started as a stabbing pain in my left shoulder blade when I was 14 has now spread to cover the entire of my upper left quadrant and neck, in a sort of liver shape. This is a needley, nervey stabbing pain, probably caused by inflamed tissue which is irritating a nerve (the physio thinks).

The lower back pain began a few years ago – I’m pretty sure from work – and used to be intermittent. It’s now present about 80% of the time. The stabby shoulder thing started when I was about 14 – I thought from sitting at a computer – and only used to come on when I did certain things, like carry heavy loads of hug myself to keep warm (usually waiting for a bus). Then it got to the point where I couldn’t look right (I am Derek Zoolander’s mirror image) without it hurting. Now it’s present about 95% of the time (I can’t remember a day when I didn’t have it in the last 6 months), and is often bad enough to reduce me to tears. And that’s without doing any of the aforementioned activities to provoke it. It’s ever so slightly relieved by heat (hence the beanie bag) but not much. It really does feel like something sharp is lodged in my shoulder.

I’m on strong painkillers which destroy your stomach lining if you don’t take them with food (Naproxen), and constipate like a motherfucker (codeine). And they don’t really work either. But I’ve been told to persevere with the Naproxen so it can build up in my system and the anti-inflammatory effects can start to work.

Every day I am in pain. The only relief I get is sleep. I can still perform the same range of movements and activities as before my pain became chronic (in fact, if I stopped being active it would probably get worse), it just hurts to do them all. I cry and wince a lot. When people ask me how I am, I debate whether to tell them the truth – that I’m in constant pain, and that most of the time it’s unbearable and unrelievable – or just to shut up and say I’m fine, which is what most people want to hear. It’s having a massive impact on my ability to enjoy life.

I have now seen a physio who has given me exercises to do, although realistically the only way to do them the number of times I’m supposed to would be to sit in a chair all day, just doing back exercises. This is not compatible with having a life. He is going to send me to “back rehab”, and has promised to crack my back every week and do some soft tissue massage for me. I look forward to a time when my pain is manageable – I’m skeptical as to whether I’ll ever be pain-free – but until that time I’m pretty much miserable all the time. Being in pain really sucks it out of you.

So if I appear moody, moan a lot or am constantly pulling unattractive faces, I apologise for the social inconvenience. Chances are, if I’m talking to you, I’m in pain.

Today all I’ve done is sit at a computer with good posture and with a lumbar roll (a towel rolled up behind my lower back to support my lumbar spine), and my pain is 9 out of 10 bad.

FML.

Gen-“duh” issues

Posted: April 30, 2012 in Uncategorized

I don’t identify as trans, and I don’t claim to speak for trans people on any level. I don’t even speak for young, bisexual, socialist, vegan, cisgendered female student nurses with poor eyesight – only myself. But being a queer feminist, I am of course passionate about gender issues, and that naturally encompasses trans issues.

Through being involved in LGBT activism, I’ve met and interacted with a fair few trans people, and also make a concerted effort to better educate myself on the issues that trans people deal with – both the positive and negative aspects of living as a trans person. I think people can often forget that for most trans folk, life is so much better after transitioning, because they are now living as who they really are, not how society would like them to be, based on what was between their legs when they were a tiny screaming baby with no opinions or self-identity. But it’s also obvious to anyone with a brain that being trans in a society which places so much importance on gender roles and expectations is not easy by any stretch of the imagination. Simple things like not having a box to tick on application forms, because actually you’re not M or F, you’re just you. And getting abuse for going into the “wrong” toilet. Being constantly asked about your genitals.

I follow Paris Lees on Twitter, as well as the My Transsexual Summer crew, and it’s through this that I found out about META magazine – a brand spanking new magazine that focuses on trans issues. It’s fucking awesome, BeeTeeDoubleYou. In issue 2, I followed a link to a video of Paris interviewing the notorious Julie Bindel, a woman who does not have many friends in the trans community. In this interview, she makes a whole bunch of weird and often contradictory statements. She says she takes issue with the label of “lesbian”, but also says she is a proud lesbian. She says that because she transgresses gender norms on a daily basis, she herself is trans, but then goes on to say a load of stupid, inaccurate and wholly offensive things about trans people. Julie Bindel is weird. And stupid. I don’t like her.

One especially awful thing she says is that parents helping their children access puberty-blocking treatment is child abuse. This is said without actually consulting with the parents and children themselves. Just to be clear – I don’t have a 100% clear-cut position on the issue of puberty blocking. It’s a very tricky situation, as is anything involving drastic, non-life-saving* medical treatment for children, and it’s a situation I hope never to find myself in (not because I don’t want a trans child, but because I actually don’t want a child full-stop). But I think that every person’s case has to be taken individually, as with any other important life aspect. From the interviews I’ve heard and read, the children (or adults who received puberty blockers as children) are overwhelmingly grateful to their parents for supporting them, and for believing that their discontent with their assigned gender was an expression of their true gender identity, and not a phase or problem. People outside the situation are quick to jump in with their own views. 1: It’s “too soon” because a child can’t make that kind of decision. (Kids mature at different ages. We realise parts of ourselves at different times. If a trans kid is self-harming because they hate their body, isn’t THAT about the time you should be taking them to the GIC? But sure, some kids do fluctuate between boy and girl behaviour, but with trans kids it’s a lot more marked than putting on a dress or playing soldiers.) 2: There shouldn’t be a need for gender reassignment surgery because gender is fluid and shouldn’t be defined by body parts and outward appearance. (No it shouldn’t, but a) we live in a society that places great emphasis on how we look, from birth, so you can be as radical and against-the-grain as you like, you will subconsciously be conforming to that in SOME way, and b) if someone feels desperately uncomfortable with their body, because it makes them appear as someone they’re not ie. facial hair, breasts, muscle tone etc., how can you tell them that they should just “work with it” if it’s making them miserable?).

[*By this I obviously refer to things such as emergency surgery, chemo, anti-anaphylactic drugs etc. HOWEVER, many trans people look back on their pre-trans period and say that if they hadn’t transitioned, they probably would’ve taken their lives. So gender reassignment often IS life-saving, just not in the conventional way that most people think.]

It’s not like parents just rock up to a GIC with their kid and say, “Hey doc, stop my kid going through puberty, yeah?” and the doctor just administers a shot like that. Ten years later you’ve got a cis-man who hates his mother for his peachy skin and buxom chest. Anyone undergoing any form of gender treatment – hormonal or surgical – has extensive psychiatric and medical analysis, to make sure that they are definitely ready and it’s really what they want and need. But think what it might be like for a thirtysomething adult to have undo what was done by puberty just to feel right in themselves, when really they knew who they were at 10, and could’ve avoided the trauma of going through the wrong puberty and being ridiculed for having prominent features of their birth-assigned sex – I can imagine that’s pretty tough. So I’m not saying “YEAH puberty blockers, give em to every little girl who doesn’t like Barbie!”, and neither is anyone who is trans or has a trans kid/friend/parents/gives a fuck about trans issues. What I’m saying is that actually it’s a pretty brilliant concept to a kid who knows exactly who they are and who they aren’t, the thought that they don’t have go through the wrong kind of puberty. Puberty is already confusing and traumatic enough – I remember it clearly, and not fondly. I had appalling periods, hated my chest (it was far too small, i my opinion) and was depressed. And that was without gender identity issues. Luckily for me I settled into my non-heterosexuality pretty comfortably. I can’t imagine how awful it is for a boy having to worry about sanitary protection, binding his chest every day, changing for PE, not getting facial hair and having hips and a high voice… if that boy was a boy well before he hit puberty, I’d go as far as to say it’s possibly neglectful to deny him access to treatment that may well save his life later down the line. Trans teenagers have far higher suicide rates than their cis peers. Maybe earlier transitioning could save some of those lives.

So yes, Ms Bindel, in an ideal world there’d be no need for words like man, woman, gay, straight, trans, cis, bi, gender, blah blah blah, because we’d all just be free people in our various shades of the rainbow, and there wouldn’t be separate toilets and dress styles and everyone would be very tolerant (oh wait, Julie, you can’t be in that world. Sorry love). Sexuality and gender ARE fluid, but what she fails to realise is the stonkinkly obvious fact that trans people are proof of that. They don’t transition because they feel that they should fit in with gender norms. Trans men certainly don’t transition for male privilege, so she and Germaine Greer can both fuck off on that one.

Transphobic feminists give feminism a bad name, and aren’t in fact real feminists. Because feminism isn’t about WOMYN and vaginas and how rubbish men are. It’s about equality, regardless of gender.

This week, i newspaper released a four-day report on “The Crisis In Nursing“. Last year the Health Ombudsman released a report “Care And Compassion“. Both of these reports both upset and frustrated me. On the one hand I, like every other person working in the health service, have seen sub-standard care, neglected patients and staff with poor attitudes. On the other hand, I believe that only a very small minority have “bad attitudes” and a lack of compassion at their core. Rather, short-tempers, lack of attention to detail and supposed nonchalance towards patient care are, I believe, symptoms of understaffing and high stress levels. Last year I wrote this article for Solidarity magazine on my own experiences. No patients, hospital trusts or staff members are mentioned by name, nor should they be identifiable within the context of this article.

Additionally, the unions’ recent response to the threats to the NHS, in the form of job cuts and the Health & Social Care Bill, have exceeded my expectations. Their campaigning and organising in the last 18 months has taken a very different direction from the largely “servicing” approach of previous years. I make reference to this in the italicised notes within the article.

The content of the recent Ombudsman’s report on care of the elderly in the NHS was, sadly, not a shock to me. All the scenarios described were similar to incidents I had witnessed or could easily imagine happening. But, contrary to what the report says, I do not believe that it is a universal problem with attitude towards the elderly, but that it is all, directly or indirectly, down to staffing.

The situation on my [former] ward is one that is mirrored across the trust, and indeed across the country. Low morale, high stress levels, short tempers and neglected patients all result from the fact that we do not have enough staff to provide complete and adequate care for our 26 very dependent patients. On a night shift, we have two Registered Nurses and two Health Care Assistants (unless we can “justify” a third HCA by proving that one or more patients are very restless and therefore safety will be compromised if they are not monitored one-on-one). So each qualified nurse is responsible for 13 patients. If one patient becomes seriously ill during the night, and needs constant attention from a trained nurse, the other is left with 25 patients. No one can argue that this is a safe nurse-to-patient ratio, and yet this is our norm, it’s deemed as acceptable, and is echoed across the trust. The RCN’s guidelines are that, on an acute adult ward, no Registered Nurse should be responsible for more than five patients on a day shift, and eight on a night. Californian recently nurses went on strike over nurse-to-patient ratios, and as a result were successful in getting legislation passed for safer staffing levels (one to five). This is not something I can see happening in the UK. There is no appetite for a fight, and even nurses who do long for change believe that they “cannot” strike, for fear of compromising patient care. [NB: This article was written before the pensions dispute which saw members in UNISON and Unite, along with a few other health unions, take industrial action. However, this was one day over pensions, and it was the minority of nurses who struck. Most trusts reported normal levels of service on 30th November. It would take more widespread, sustained action to secure any kind of guarantee of staff-to-patient ratios in law. This government is set on dismantling the NHS, not building it up and improving patient safety.]

Channel 4 is airing a Dispatches programme on 21st February [2011] about food and nutrition in hospitals. Patients and their relatives have gone on camera, detailing their “appalling” experiences of meals in hospitals and the lack of assistance given to those who cannot feed themselves. However, what is never taken into account in the hundreds of damning reports around nutrition in hospitals, is the fact that meal times are akin to a military operation in their complexity. On our ward, evening supper is particularly challenging: One staff member has to push the hot food trolley around and serve the dinners (we don’t have a domestic for this), and ideally should have another member of staff to help take dinners to the patients. One person then needs to give out puddings and one person to do a tea round. There will always be at least a couple – but sometimes as many as six or eight – patients who need to be fed (or at least prompted/encouraged to eat, either because of reluctance, apathy or dementia). Then, all those patients who are on food record charts need to have their charts filled in – accurately (type/amount of food, action taken if patient refuses food or is unable to take food orally). So really, for meal times to go smoothly, dinners to remain hot and all patients’ nutritional needs to be met, you ideally need at least eight staff, concentrating only on meal provision. On a late shift (when supper is served), we have four or five staff. Halfway through the meal, two qualified nurses have to start the drugs round. Add onto that the inevitable fact that several patients will need the toilet during the meal time, and that others may be confused and need to be monitored for safety, and you are realistically left with one or two people having to undertake the mammoth task of serving up three courses to 26 patients, ensuring that they are all well fed, and that everything is documented accordingly. You can see why staff become frustrated and patients go hungry – or have incontinence problems – at meal times, as it’s so often a choice between one or the other – dinner or toilet. Wet yourself or miss your dinner. What would you choose?

But despite these glaring issues, the staff rarely recognise that these problems are top-down, and could be remedied – or at least alleviated – by increasing levels of ward staff. If I bring up the subject of the impending cuts and reforms to the NHS, people are either oblivious or apathetic. I noticed from day one at my workplace that none of my colleagues seem politically aware or motivated, and most are concerned only with their own day-to-day existence. The idea of unions as a tool for change is alien to almost everyone I speak to – the union is there to represent us at sickness hearings, isn’t it? Unfortunately, the unions don’t do much to combat this mindset. Aside from a few recruitment stalls throughout the year, their presence is barely felt. Meetings are poorly advertised and there are few known stewards across the trust. We are threatened by massive job cuts, yet there has been little in the way of resistance or organisation to fight what is undoubtedly a huge threat to the safety and welfare of patients. [NB: UNISON has, in the last year, been at the forefront of the fight against the NHS Bill, and is a major player in the pensions dispute. However I still feel that there is a lot more work to be done on protecting – and preferably improving – terms and conditions, pay, pensions and the integrity of the NHS as a whole.]

This week (20th-26th Feb 2012) is Eating Disorders Awareness Week. This year’s theme is “breaking the silence”, so I decided to re-post my story, which I first published on sane.org.uk last year. It’s a frank account of how my ED took over my life, and how I successfully kicked its arse, with the help of mental health professionals and my friends & family.

I’ve suffered with an eating disorder (ED) since I was 15. It started as a genuine attempt to eat more healthily and look after myself, with the added bonus that I’d probably lose a few pounds (I was chubby, but not overweight).

This soon developed into full-blown anorexia. I was eating less and less each day. I was actually frightened of food, of calories, and the idea of calories being converted into human mass. Every bite of food I ate, I could “feel” it sticking to me, like a lead weight. I became an expert at lying and manipulating, telling people I’d already eaten, or would eat later, or “don’t worry about getting anything vegan* in for me, I’ll get something later/beforehand”.

*My veganism was not a cover for an eating disorder. It was, and still is (6 years later) based on real morals and ethics. But I did exploit it to the advantage of my ED.

After a few months of successfully restricting enough to lose about a stone and a half, I began getting cravings for “unhealthy” or “forbidden” foods that I’d avoided for so long. I also, through vegan forums, developed a love and talent for cooking and baking. So every day, when I wasn’t at work or college, I would cook and bake enough food for ten people. And I would eat it all. And I would throw it up. It was shortly before my 16th birthday that I discovered the wonderful trick of making myself throw up, and realised that I could “cheat” nature – I could eat absolutely everything I desired, but not put on a pound. I fell into a full-blown cycle of binge-purge behaviour. From this point on I classed myself as bulimic.

Because throughout most of my ED, I was fully aware that what I was doing was abnormal, unhealthy, damaging to my mental health, and totally irrational. But the ED was so strong, that it could completely override any sense of rationality that my “normal” brain tried to argue. I could not break out of the cycle, and most of the time I didn’t want to. I had a perfect system in place – eat whatever I want, stay skinny. It felt like a big two fingers up at all the dieters, living on ryvita and slim-a-soup, and the fatties who couldn’t pull together the willpower to give up cake. I was a winner.

I moved to Birmingham a few months after my 18th birthday. For years my behaviour had remained unchanged, other than my increasing ability to come up with incredible lies to cover for my ED – as Dexter would call it, my “Dark Passenger”. It consumed my life, and caused me to lie to all those I knew.

It was my sister who saved me. I moved in with her, and we lived incredibly happily together – if ever two people were meant to live together, it’s us! It didn’t take long for her to spot my behaviours, and the fact that the amount I was eating and my diminishing weight didn’t correlate. She confronted me a couple of times but, just like I had with my parents, I denied everything and found some ridiculous excuse for whatever it was she was questioning.

In February of 2009 my sister wrote me a letter, telling me she knew everything, and couldn’t bear to see my go on like this. I broke down in tears, told her everything, and that week we went to the GP together. That was my first step towards getting help.

A few months down the line, I was seen by a psychiatrist who referred me to the eating disorders service within Birmingham and Solihull Mental Health NHS Foundation Trust (BSMHFT). I was seen by a doctor and an occupational therapist, who agreed I was a suitable candidate for group therapy. These ten sessions did me some good, but I still had a long way to go. The thing that was working in my favour was my general happiness: I was happy with myself, my life, I had a great relationship with a boyfriend who loved me (and who I loved) and plenty of friends. I had a rewarding job that I loved.

When talking to my sister about the ED, I often described my life as a picture of a beautiful landscape, and the ED was a black smudge on this picture. At times in my life, the black smudge had covered the whole picture, so I couldn’t see the real picture underneath. But, over time, with a combination of therapy, medication (Prozac) and the incredible support of my sister (and friends), the black smudge got smaller and smaller, until I could see the picture underneath, and just had to remind myself to keep wiping at that ugly smudge.

The real changes happened when I started one-on-one therapy. My therapist didn’t “do” anything radical, other than make me look at myself, my behaviours and what was going on in my head. I saw her regularly for over a year now, and came such a long way that in January of this year, we agreed that I was in a place where I could discontinue therapy. I have now been discharged from the mental health service. I am off medication.

My black smudge has completely gone. My landscape is shining bright, with no blemishes. I don’t even need to dust. The “demon” of my ED has gone (my sister and I often likened it to the little blue gremlins in those ads for adult education that go “oooooh, forms, there’ll be numbers and writing, you’re not good at that”…!, and we’ve said at different tages that it’s either been on my shoulder, in the room or – as it is now – on another planet, nowhere near having any effect on my life).

I am one of the lucky ones. Not only have I got control of my unhealthy and irrational behaviours, all those thoughts are gone from my mind. I can now enjoy food in the same way as everyone else. There is no guilt, no compensation. In September last year I ran 5km to raise money for beat (the Eating Disorders Association) and in July this year I will run 10km for the same charity.  You can sponsor me here.

My message to anyone struggling with issues around food, body image or self-esteem is this: Please please, confide in those near to you, and let them help you get the help you need. Beat has a saying which I believe rings true to most people battling a mental health problem, especially addiction and compulsions (which for me, bulimia was a compulsive way of behaving): “You alone can do it, but you cannot do it alone.”

Good luck and take care. You have the strength to get better, it’s just a matter of finding it. And you are not alone.

When will mental healthcare be given the status and funding it needs?

We cannot function as healthy, sociable and productive members of society if we are at odds with our own being. Mental health covers a HUGE range of issues, from low self-esteem and depression to substance abuse and full-blown psychosis.

One in four of us will suffer with a mental health issue at some point in our lives. For some people, it can be one episode, or occasional short episodes. For others, it’s a chronic problem which can be really debilitating.

I suffered with an eating disorder since I was 15. Several members of my family have suffered with depression. I know addicts, manic depressives, eating disorder sufferers, post-natal depression sufferers and people with crushingly low self-esteem. That last one doesn’t sound like an illness, does it? But lets look at what a disability is: I’ve looked at several online definitions, including that of the UK government, but as far as I see it, a disability is something which prevents a person from living a “normal” life. So yes, a broken limb is a short-term disability. Poor vision is a disability. Agoraphobia is a disability.

People with low self-esteem – and indeed, a whole host of other mental health issues – will see problems and difficulties in their lives as evidence of their own failure or inadequacies as opposed to what they really are, which is symptoms of the illness which will affect every aspect of their lives – social, familial, work, education, physical health.  But because mental health is not given the attention it needs, sufferers often think that there is something intrisically wrong with them, and therefore don’t think to seek help. This in turn will prevent them from going for the things they want in life, as they’ll have already decided that they’ll fail or disappoint in whatever they try to do. This perceived lack of achievement (a lot of mental health sufferers are really smart and/or talented) adds to the sense of worthlessness, and we’re stuck in a vicious cycle.

Add to that the huge stigma that is attched to mental health, and is it any wonder that so many people suffer in silence, or attempt to put on a brave face and soldier on, or in the worst cases, confine themselves to their home and don’t interact with others as a result of their belief that they are not “worth it” and that they’re less good than others.

If you know someone who you think may have a mental health issue – and the chances are you will, as most of us know more than four people – PLEASE be there for them, be sensitive, and try to direct them towards the help they need. Unfortunately the system isn’t perfect, and due to the horrendous lack of resources, waiting lists can be lengthy, but if they have the support of people they know and trust, and feel that something can be done, and that they’re taking positive steps toward change, that can do a whole lot in itself.

Visit http://www.time-to-change.org.uk/

I’m running to raise money for beat – the Eating Disorders Association. All money raised will go towards treating the millions of people who suffer with eating disorders. http://uk.virginmoneygiving.com/vezkirkpatrick

Recently, one of my sister’s work colleagues made a generalised comment about gay men when they were discussing the blood donation ban, saying “It’s right that they shouldn’t be able to give, they’re all so bloody promiscuous!”

It should be noted here that the ban does NOT only cover men who identify as gay or bisexual, but to all men who have ever had sex with a man.

When Becca told me about this comment, I was understandably very very pissed off, and not just because I was in LGBT defensive mode, but because it’s a stupid, inaccurate comment (I was, however, very proud of her for standing up to the person who made the comment and pointing out her error). I don’t think that sexual orientation affects how many people you sleep with, or how readily you’ll sleep with someone. I know gay folk in long term relationships and civil partnerships, many of whom have been together for years. And I know plenty of promiscuous straight people – men and women.

Before I was with Al (my boyfriend of nearly 2 years), I wasn’t promiscuous, but was completely averse to the idea of a long term relationship. The concept just didn’t suit me. My philosophy was: “Sex is a fun thing that I like to do with some of my friends, now and then. I won’t sleep with strangers, only with people I know and trust. I find some of my friends sexually attractive, therefore I would enjoy having sex with them now and again, just as an extension of our friendship”. This had NOTHING to do with the fact that I’m bisexual, but with how I imagined a relationship would impact on my life and my freedom to do what I wanted, whenever I wanted.

Soon after Al and I became “romantically entangled”, we were both totally besotted with each other, and very soon I was aware that my feelings had completely changed, and that I wanted to be with him, and only him, for the forseeable future (I don’t like to use the word “forever”, but that’s how it feels sometimes). All of a sudden, the idea of sleeping with other people was alien to me. Not because it would be wrong, immoral or unfair, but because I just didn’t want to any more. However, both of us are 100% agreed on the fact that we do not want to marry or have children.

A few months ago, Becca accidentally “outed” me to my mum. By this I don’t mean that she revealed my deep dark secret that I never wanted my parents to know about, but I’d just never mentioned it before and therefore assumed (correctly) that my mum had no idea. She rang to speak to me, and Becca told her that I was at an LGBT conference. She then had to explain what LGBT meant, and my mum was totally puzzled as to why I would be there…

Her first reaction when Becca enlightened her was, “But I thought she was with Al?” Becs confirmed this, and my mum said “But I thought she was happy!” She had this automatic assumption – like so many others – that because I’m bisexual it means I have to have both at all times. Other people at work have asked me if I see women on the side. No, I don’t. I’m in a monogamous relationship.

However, there are plenty of bisexual men and women who are in open relationships, who have multiple commitment-free partners, and who cheat on their current partner. There are also plenty of bisexuals who are in happy, healthy long term relationships. Many are married.

All of the above relationship patterns (and many others that I’m not going to go into, purely because there are far too many, and I don’t think sexuality is something you can really categorise anyway) are reflected across the population, in people who identify as straight, gay, asexual, trans, queer, curious, undecided and otherwise undefined.

A person’s personality, desires and principles will govern their behaviour – sexually and in all other aspects of life. Not the gonads of the people they find attractive.