Operation You Make Me Sick

I spent a good hour on the phone this afternoon to an eating disorder charity, Beat. I initially rang them to ask one simple question- “If I begin eating again, will I gain weight?” The answer was, “Maybe to begin with you’ll gain a few pounds as your body adjusts”. Looking down at my bruised and scarred knuckles, I felt my stomach plummet into my shoes. It wasn’t the answer that I wanted.

My knuckles roughly look like this, on a scanner at least:

There’s a bruise there, under my forefinger, and those scratches and scars are due to abrasions from my teeth. My hands feel very rough as I scrub them often.

Time ticks on, and the elephant in the room is about to “Ta da!”

There is one thing I do every day that I never discuss.

I have a serious eating disorder. And I have to say something about it to a professional. So far, I have backed out of mentioning it. For a year and a half of being cared for by the community mental health team, I have mentioned it maybe twice, then immediately dismissed it. On Thursday, I have my first meeting with the team psychotherapists.

Oh, I know I have an eating disorder. Every body has an eating disorder. I don’t know very many people who don’t agonise over every scrap of food that goes into their mouth. Who don’t say, “I feel bad eating this” as they nibble a biscuit, who are afraid of putting sugar in their tea, who eat their lunches self consciously in suicidal offices, buying a salad, but they wanted a sandwich.

It’s all very cloak and dagger. I’ve come up with some ridiculous lies as to why I can’t eat that and why I need to throw up right now, so that when I return from the toilet (in public places, disabled toilets are a godsend) I can just smile apologetically and eat a mint rather than rub soap all up my arms and inside my fingers and chin, panicked about the smell. I’ve had so many mysterious tummy bugs, I can’t count them on one calloused hand. Rob found out recently that I had been lying to him.

He is worried about me. He is very worried about me. We have lots of pleading conversations in which I promise to try. I did not realise until recently that this had stopped being something I had a handle on. I have totally lost control. It is an automatic reflex. I don’t binge eat. In fact, when I do eat (and it is rarely), I eat very healthily. But even that is not good enough. I throw it up anyway. My trying lasted three horrible days. During those three days, I took laxatives. I have to get them from two different chemists after my usual place began asking questions. Why would I need two packs in three days?

It is panic. Pure panic when I eat. I feel it clogging up in my blood stream. I feel it attaching itself to my flesh, making me fatter. For about two months, I was on a meal replacement diet. I thought it would make me better. I thought it would be so controlled that my old habits would disappear. They didn’t. It has become so much worse.

I have lost weight- I am 8st 12lbs now, as opposed to the 12 stone I was at the beginning of the year. I know this because I have two sets of scales that I weight myself on at least seven times a day. I haven’t really been on that diet since April. On, then off, then on. Alternating between drinking shakes and then eating and throwing up. One is safe, the other is safer.

I love the fact that people tell me how nice I look. I hate the fact that I can see absolutely no difference in myself. Rob thinks that I never will. Another conquered thing, I thought, was body dysmorphic disorder. Because I wear less make up these days. Because I go out in daylight.

It is not.

I think about my appearance and my weight constantly. I am in a state of paranoia and panic twenty four hours a day. I can’t watch most films because the actresses are so much more beautiful than me. I can’t look some of my friends in the eye. I am back to self harming. I tremble as I pass people in the street, silently praying that they won’t remark on my appearance. I am The Monster. I will always be the monster. I am still torn up inside by self hatred that refuses to diminish. I could be the most successful writer in the universe and I don’t think one shred of it would shimmy way. It is as though it is threaded into my veins.

Of all the things I am ashamed of, I am most ashamed of this.

I’ve never considered my eating disorder to be serious. I’m not thin. I’m not even underweight. To me, that marked “serious”. Me, I’m fat. You’d never guess I had an eating disorder by looking at me. You’d probably assume that I ate to much. You’d probably assume that I was going back to my lair armed with donuts. I could go to a forum and talk there, but I’d feel like they could sense through the screen that I was fat, that I didn’t belong there.

The woman on the phone said, “It is serious. You are seriously ill”.

“No, I’m not. I’m not ill, it’s not serious. I’m not thin”.

“You are doing so much damage to your body. Damage you can’t see. You’re going to end up in hospital”.

I see the logic. I say I don’t know why I’m exhausted and can barely walk half a mile. But I know why. I know what I’m doing to myself.

I throw up about three times a day. I throw up normal amounts of food. I don’t binge.

The lining of my throat bleeds. It hurts to swallow.

My teeth are rotting out of my head.

I have so little energy. The lack of physical energy is at odds with my overt mental, slightly manic energy at the moment. It is killing me.

I can’t have sex. I don’t have the energy. I get exhausted after walking half a mile. I don’t have the energy.

I am having heart palpitations. I am getting breathless.

During the times I have tried to eat solids and not throw up, my body’s reflex was to gag, and I would throw up over myself.

I feel dizzy all the time.

I strongly suspect, and so does Rob, that I have developed anemia.

My rationale goes like this:

I don’t care. I’m fat.

But you’re going to end up sick.

I don’t care. I’m fat. If I stop doing this, I will become fatter.

And I hate myself for the fear that puts into me.

As if I need any more problems. I am already contending with manic depression.

The woman on the phone said I had an illness. I never considered that I did. Not bulimia.

She gave me the number of some places that could help me. I do not know if I’m ready.

I hate smelling of sick and I hate, more than anything, what it is doing to Rob. How we can’t enjoy anything because I am so paranoid about my looks. No lovely meals out because it’s a waste of money. I just throw it up. I like food. I want to enjoy food. I want to enjoy something in my life because manic depression has stripped me of that. It should not be minutes or hours, it should be days, weeks, months, years. I hate the sad look on Rob’s face when he realises that I have only been lifted for a moment, and there is hideousness swirling in my head.

My first therapy meeting is on Thursday, after a year and half of saying nothing.

I have to say something. And I am terrified.

What if she looks at me and thinks I’m lying? I’m fat.

What is she thinks I’m vain? I’m ugly.

What if she thinks I’m an attention seeker? I am covered in self harm scars.

It is trivial, it is vain.

Hannah brings it up, I dismiss it. I am scared. It means admitting to it in front of another human being. And it means I will not be allowed to continue anymore. It means that someone else is in control. And that is already the case, with the medications, the psychiatrists, not being able to drink, having to sleep. My whole life is ticked and measured week by week. The pressure to be well, to get better, to be insightful and helpful when sometimes all I want to do is retire to self abandonment, it is incredible and it is constant.

This is all so frightening to me.

But I’m looking at my knuckles again. I have no choice. There are so many mental mechanisms that are trying to kill me. And I know, deep down, this is one of them. I just can’t have another conversation with Rob where he pleads with me, and where I do nothing, where I confess that he can do nothing.

I have to do something about this.

The Sane Guide to Living with Mental Illness

Wow, this blog has gone right off topic recently. Flippin‘ friends dying, they’re so inconvenient.

I am still nowhere near caught up on e-mails so please excuse me if you haven’t received a reply from me.

I am fairly sane at the moment.

This is somewhat of a revelation; I can’t remember a time in my life when I have been fairly sane. Oh, glimmers of sanity have squeaked through the black tarpaulin of madness but by and large, even my most coherent writings have come from a chaotic planet.

I am not incredibly depressed, nor am I manic. I’m not fantasizing about suicide- it’s been a few months since I’ve white-knuckled safety railings at the riverside.

Anxiety and paranoia, yes, excessive worrying- well, that’s just me- and my ongoing battle with weight and eating continues. A lot of sadness and sorrow and anger at recent events. But mood-wise? Steady, in a mildly depressed kind of way.

How do I judge my own sanity? By not comparing myself to other people. I’m never going to be Completely Sane. The lovely thing about the world is that you’d have to look a long way to find someone who is.

I’m never going to not have manic depression. Even now, with a somewhat clear head, there are “residual symptoms”.

Anxiety and paranoia. An ongoing battle with weight and eating habits (and not-eating habits). Still having trouble sleeping. The reckless nervous energy that is 50% me and 50% manic depression. A mild, niggling, irritating depression that blunts my experiences and emotions. Intrusive thoughts and panic. Narcissistically worrying about being narcissistic.

But this is good.

It was only a few months ago that I was ravingly psychotic, swallowing a huge dose of Lithium and on the verge of utter annihilation. Every little victory- the return from self-destruction- I cherish. To judge my sanity, I compare myself, to myself.

Every time I cast mind back to six months, a year, a year and six months, I’ve been ill. For most of my life, I’ve been ill. I’ve clung on to the merry-go-round of madness and am barely alive because of it.

So, while I’m feeling relatively together, here’s my sane guide to living with mental illness. Bear in mind it’s from the perspective of “been there” rather than “been told”. Feel free to ignore everything, though!

1. In times when you feel better, don’t expect the unexpected.

If you’re like me, this is much easier said than done. I’m a born worrier. I worry about everything. When I click “Publish”, I’ll worry about that, too. Talking about myself all the time? How self-obsessed. And in my self obsessed way? I’ll worry about that. I worry about everything I say, everything I don’t say, and everything I don’t do, and everything I do.

So I find it hard not to worry about the next episode of illness.

I know it’s probably coming, so I find it difficult to enjoy not being mad for a change. Experience has taught me that these lulls in time are the calm before the storm. I’m a rapid-cycler, and pockets of sanity are brief for me.

But, this time, I’m trying to think, “Maybe this will last longer than a few weeks”. You never know. So don’t try to will your next psychotic breakdown or manic episode. Relax, if you can. Take your medication, try to be okay.

2. Keep taking your medication, even if you feel better.

Ah, this old chestnut.

I’ve only been treated for manic depression for the past year and a bit. But every time I’ve felt “alright” and decided to ditch my medication and miss appointments, I’ve become ill again, very, very quickly. It has nearly always resulted in a messy hypomanic or manic episode and has meant that my antipsychotic gets upped to deal with the “crisis”. Or, there are times I’ve quietly skipped my medications and lied about it and become suicidal.

Something I believe, and have emphasized a lot here, is that mental illness is partly biological.

Sure, nature can embellish it, but I strongly agree with the idea that there is a biological basis for most mental illnesses- almost certainly some forms of depression, manic depression, anxiety, schizoaffective disorder, addiction, schizophrenia (their symptomatic similarities to biological illnesses such as epilepsy only strengthens my conviction) and possibly personality disorders, eating disorders and DID.

I don’t subscribe to the belief that mental illnesses are “labels”. Cancer, diabetes, asthma, etc, aren’t labels, they’re illnesses. And so it mental illness. Once I got past that, I found it easier to write with conviction, without worrying about “labelling” myself. I have got manic depression. Whoop.

I’m not on the gravy train of the “medication is evil”. It doesn’t mean I like to take them, though. I hate taking my medications, I always will. I hate the ritual, I hate the weight gain, I hate the exhaustion. I can see the argument- especially in countries where you pay for healthcare, such as the USA, and where medications are advertised like sweets. But if you take something and it makes you feel better, well, I think that’s okay.

And I don’t think people appreciate how difficult it is to continue taking medication for mental illness. On one hand, the side effects can be close to unbearable. I do entirely understand the stance that medication can numb you. But if I hadn’t been treated for manic depression- and medications are a huge part of that- I would most likely be dead.

So on the other hand, we come full circle to…

It’s not a cure. It’s to help you cope and live with your illness, to alleviate some of the more frightening and terrible symptoms that you are living with.

So when you feel better, don’t stop taking medication and don’t miss appointments, however tempting it might be. You might be feeling better due to sheer force of will, help from people, or maybe your illness just shifted somewhat, but, if you’ve been taking medications for a while, there is almost certainly something in them that is helping, too.

3. If it’s not working, say so.

Lithium made me physically sick and didn’t help at all with my illness. But because it was the “gold standard” for bipolar 1 disorder, I didn’t speak up, and quietly waited to feel better.

I never did and after the third or so bout of vomiting, shaking and passing out, I told the psychiatrist that I didn’t want to take it anymore.

Likewise, Seroquel helps me sleep, quells psychosis for the most part but it’s “antidepressant properties” are non-existent in my case and it turns me into a zombie. So I am being slowly switched to risperidone instead.

Of course, there may be times you can’t tell your medication or treatment in general isn’t working. So this one’s for those around you who know you- if you can, let someone know. I was manic for a while on Lithium and it was Rob who noticed I was, not me. Insight is an occasional companion sometimes.

4. Get support.

It can be isolating to live with mental illness. And not everything is as culture tells us it should be; lots of people don’t have close friends or family to rely on. And that isolates us further. Sometimes, family and friends don’t understand. Sometimes, you just don’t want to talk to them anyway.

There are support groups around the country that you can speak to and make friends at. The Manic Depressive Fellowship (now the much more PC Bipolar Organisation) holds regular local support groups, and The Support Line has some links and phone numbers for people with depression. Rethink also offer support groups for illnesses such as manic depression, depression, anxiety, schizophrenia and personality disorders, amongst others.Other “service user” groups include The Perceptions Forum, run by mad people for mad people, centering around the psychosis experienced by people with psychotic illnesses.

There are also tons of online forums that exist to support people with mental illness. A great one is The Mood Garden, which has forums for depression, self harm, anxiety and panic and substance abuse.

There are other good forums and support groups for problems such as anxiety and eating disorders.

5. It’s good to talk. Therapy is important too, but if you’re not going private, bring a book.

I was diagnosed with manic depression over a year ago and I’m still not in therapy. Medications can be good, but I think therapy is just as important. Having someone to talk to, learning ways to cope with an illness that you might have forever and taking the strain from ear-bashed loved ones is valuable.

I am finally speaking to a therapist soon- about friggin’ time an’ all. As biological as mental illness might be, sometimes, treatment is complicated. For example, I can’t take antidepressants. It’s been done a few times, and each time has been the same- hello mania. Treatment, then, is needed to help me cope with depression. I also have, as you know, Body Dysmorphic Disorder and problems with eating disorders, that pills don’t really help.

And even if you have a tidy mentally interesting diagnosis, life still happens, and it’s hard. Quite aside from regularly lapsing into depression because of my illness, there are life-things I struggle to cope with.

And again, it’s a little-thought line that dealing with the diagnosis itself it very difficult indeed. I still have trouble accepting my illness, however lucid and sage I seem here. Like any life-long illness, coming to terms can be hard.

The fall-out from episodes of illness can often be extremely hard to cope with. The strain it can put on your relationships, jobs, physical well-being, finances and other areas can sometimes be the beginning of a downward spiral. (After bad episodes of illness, I hate myself and feel so guilty and worthless I want to top myself. But there are always people I can’t look in the eye, and I find it very difficult to speak to friends and to manage the practical aspects). Psychotic episodes, in my experience, can be the worst as it’s a side of you people may have never seen before, and may find very hard to understand. It is really good to talk these things through.

So, if you’re being treated, push for therapy. You might have to wait a while, though. If you have specific issues (or your loved ones do), such as bereavement, substance abuse and “youth” related problems, there are many free counselling services around that you won’t have to wait so long for, such as Cruse and the Mind Guide to Counselling.

Also, never forget that if you feel you have no-one to turn to, there are confidential counsellors available by phone and e-mail such as the Samaritans. It’s their job to listen, and they can really help in a crisis.MIND also offer free counselling.

6. Mentalist- know thy services.

It’s not inevitable that you’ll need to go into hospital in an acute episode of illness. Whereas sometimes it may be the only option (such as needing to be sectioned for your own safety, and the safety of others), hospitals can be extremely traumatic. They are boring, above all else, and the surroundings can leave a lot to be desired.

If you, your “team” and those around you think you may need somewhere safe to be for a while, there may be other options. For example, there are crisis centres. I am lucky to have (and to be visiting next week with the CPN) a women’s only crisis centre.But look up mental health services in your council directory and ask questions. There may be a crisis centre near you.

You can also enlist the help of a crisis team if you want to avoid admission to hospital. Most councils have a community mental health crisis team who can give you ongoing support and evaluation at home.

7. If you can’t work, get benefits advice and help claiming them. And get someone to keep an eye on your finances.

I have been too disorganised and unwell to even begin to sort out my benefits. My CPN played a huge part in helping me, as did Islington People’s Rights. Now I’m finally on Income Support, Housing Benefit and DLA.

If you’re able, find out what to claim and how, and try to get independant help and advice from local people’s rights services or from the Citizen’s Advice Bureau. If you have family or friends, enlist their help in getting forms for you and helping you fill them out. There are also online services and resources such as the Advice Guide and Rethink.

When you have a mental illness such as manic depression, borderline personality disorder or schizophrenia, you might be, like I have been, impulsive and reckless with cash. When I’ve been working I’ve gone on many a manic spending spree and completely cocked up my finances. The “oh no” bank statement is not your friend, so, embarrassing as it might be, it can be a good idea to ask a friend or someone close to keep an eye on your spending for you.

8. If you’re reading this, you’re alive. Nice one.

Mental illness can equal terminal illness. It’s true that many people with mental illness will go on to commit suicide. Even with the best of care and support, it is not altogether unavoidable.

But being alive, day after day, is a victory. It’s not a failure, it’s not “being weak”. Whatever help you receive, it’s ultimately you who is responsible for yourself. So if you’re managing to continue living, no matter how horrible things get, even if in the past you’ve tried to commit suicide, you are alive and you should try to have some pride in your self.

Again, this is an “easier said than done” rule but I think it’s worth pointing out.That’s all from me for tonight- jesus, it’s a Saturday night. I’m going whip out the media player and turn on the lights so I can pretend I’m at a club or something.

I’ll be writing more trying-to-be-helpful things about living with mental illness in the future. Please feel free to suggest stuff.