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.

14 Responses

  1. I hope you make headway with your therapy when you finally get it 🙂

    And as for the benefits, keep perservering. I was originally knocked back for DLA but I fought back and eventually got mid-rate care and low-rate mobility. I even got a free travel pass out of it for trains, trams and buses! (DVLA say I’m too crazy to drive!) Now my husband has taken a sabbatical from work (a bloody long one as well!) to be my f/t carer. I digress …

    Anyway, I started a blog recently to help me come to terms with my situation. It’s nowhere near as profound or well-written like yours but you’re welcome to take a glance: http://anauistis.wordpress.com

    Take care
    Ana
    xx

  2. Just wanted to say…
    WOW…
    this is GOOD.

    Thanks for all this – so much of it rang true for me (and I have been “living with” mental illness for a l..o..n..g.. time now) and so much of made me stop and take stock and think “oh %$”* forgot that one (especially the bit about meds. Still in a bit of denial about that one).
    It helps to read it here. Seriously. Thank you.

  3. Thanks hun that was helpful and interesting!!!!

    xxx x

  4. Fancy doing an insane guide for comedic effect?

    In all seriousness that is some great practical advice and I should be taking note of some of it.

  5. Seaneen it’s great you finally got the benefits sorted…. That took so long, your CPN must have done well to get them done for you, have you appealed against the DLA decision yet?

    Nice to read that you are feeling somewhat stable at the moment… me too, almost on the verge of normal I just hope it last for a short time.

    Here’s to 2008 being the year for you and more than anything I hope you get a better place to live…

  6. This gave me a great deal to think over. Thank you.

  7. Very interesting and glad to hear that regardless of recent events that you are doing well and you have a supportive CPN.
    I wonder if you have ever heard of bipolar’s suffering from something called ‘sleep paralysis’, I tend to get this just before I go into ‘crisis’ and end up on olanzapine, but apparently it occurs with ‘normal’ people too….it’s the hallucinations that scare the beejeezus out of me.

    continue writing your wonderful blog!

  8. “Relax, if you can. Take your medication, try to be okay.”

    That’s what it’s all about.

  9. […] Insane Guide to Living with Mental Illness: Depression Contrary to part 1 of my “Sane Guide to Living With Mental Illness“, here is part 1 of my “Insane Guide to Living with Mental Illness:   […]

  10. […] The Illness of Choice  Ring Your Bells, Crazies The Sane Guide to Living With Mental Illness: Part 1 The Insane Guide to Living With Mental Illness- Part 1: […]

  11. […] in the Crisis Team. I see the psychiatrist for medication reviews. Islington has given me one of my Mentalist Commandments: Mentalist: know thy services. The Enhanced CPA also means that technically I’m a risk to […]

  12. Your comment about “You’re alive! Nice work” was inspiring…. It’s very true, I should be thankful that I’m alive, especially since I’ve contemplated NOT being alive so many times. Thank you🙂

  13. Thank you you saved a life today

  14. I love your guides. I’m from Poland, and I having a blog about, well, “limited edition brain” kind of things😉 mostly about dyslexia and sensory processing disorder (for example auditory defensiveness, non-autistic ones also can have Aspergers-like sensory reactions). I haven’t update for a loooong time, but I have to post something about bipolar disorder. About mixed episodes mostly, personally I experience just mixed and “normal” depressions, no euphoric episodes, and it’s awful. I’d like to translate your “insane guides” to Polish, with credits and link of course. Can I? I’m not a good at translating, it would be a dilemma with for example “insane” word – in Polish that term is used only in court, not in everyday language. Or “being suicidal” – in Polish you eider “want to kill yourself” or you are “thinking about suicide”, or “have suicidal thoughs”. An idea can be suicidal, but not a person. So I may mess up that a bit, and translating sounds hard. But still I’d like to try. Can I?

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