Nothing More Lonely

Last night, it was Friday night in my part of the world, and by 8pm I was in bed wishing for sleep.  It had been a hard fibromyalgia day that started with fatigue after a Thursday with too much packed into it (when will I learn?).  That fatigue had progressed into pain as the day went on.  While I wanted to stay up later, I had simply had enough of pain, and being alone with it.  There is nothing more lonely than being in pain, alone.

I didn’t need anyone to save me from my pain.  That would have been nice but I knew it was never going to happen.  If they were willing to get me chilled water when I wanted it (I hate room temperature water) that would have been lovely, as getting up and struggling to the kitchen was growing in difficulty.  But actually I simply needed someone there who knew I was in pain.  And I needed to know that they knew I was in pain.

Image credit: FB/A Beautiful Mess Inside

What I didn’t need is someone to tell me to “get over it“, or “it’s not that bad” or even “everything will be alright tomorrow“.  I, like probably most of us, have had those lines thrown at me in the past, and really, none of it helps.  In my moments (and longer) of pain I don’t need advice.  What I need is compassion and empathy.  The person who is able to be with me quietly, resisting the urge to throw me advice or platitudes is the person I want with me.

What I have been talking about so far is chronic physical pain.  For me last night, my muscles and joints ached and my skin felt like it was on fire.  The bedding resting on my skin was so uncomfortable that I ended up sleeping without it.  It’s standard fibro pain.  I seriously felt like no one in the world knew how much pain I as in, and how sick of it I was.  I felt very lonely.  I needed to know that someone else knew, even if they couldn’t remove it.

But this doesn’t just apply to physical pain.  It applies just as much to emotional and mental pain.  I spent years insisting that I wanted to be alone, but once I was, I couldn’t bear it.  Do you know that feeling?  Pushing people away, yet really wanting someone to hear and understand… without advice.

Many times in my life I have heard “you made your bed, now lie in it“.  Does that sound familiar?  It seems that I had made things as they were and I only had myself to blame.  Even if that were true, it doesn’t take away my need for care and empathy.

Regularly when I was depressed I believed that I couldn’t bear to be around people.  The worst thing was a room full of people, because I would believe that no one knew I was in pain and no one cared.  Sometimes I even needed the evidence of a physical scar so that perhaps someone would get the degree of pain I was in.  Actually I suspect that sometimes no one did understand or care, because so often people don’t stop to think how those around them feel.  But I would go home, and be alone, only to have never felt so alone in my life.

Of course I made that bed for myself too.  I convinced myself that I didn’t need anyone and I particularly didn’t need to be in a relationship with anyone.  I could even say convincingly that I was happy to be single.

Actually I think that I talked myself into that.  I convinced myself that I was better to let no one come near me.  When so-called  friends judged me once too many times, I convinced myself that I didn’t need them either.  All I believed I needed was my cat.  The good thing was that she would never hurt me, and if I didn’t let anyone else in, then neither would they.

I’ve changed.  I’m not so adamant of my ‘need’ for alone-ness.  What’s more I am now prepared to take a few risks in terms of letting people get near.  Maybe if I let the right people in, then I am not so alone when I am in pain.  I want to be connected to other human beings.

To have someone understand that I am in pain, either physically or mentally, now means the world to me.  It’s not that I need sympathy, and I know no one can remove my pain, but simply I am not as alone in the world when someone makes the effort to hear it, and when I let them.

♦

“Few things a doctor does are more important than relieving pain. . . pain is soul destroying. No patient should have to endure intense pain unnecessarily. The quality of mercy is essential to the practice of medicine; here, of all places, it should not be strained.” 

―    Marcia Angell

What’s Happening To Her?

Image courtesy of FreeDigitalPhotos.net

Yesterday, after a particularly difficult time in therapy, I was thinking about my family who had to stand by and watch me try to self destruct over and over again, as the years went by, and I struggled with mental illness.  At the time the relationships in my family were a bit different from they are today.  In addition to that my father, who was perhaps my staunchest supporter has died, and there is a whole new generation of nieces and nephews, who actually are still too young to know what pain my family went through.  I know that it is not just my pain, they bore theirs too.

I also know that while I pushed many friends away, there were a few who also had to stand by and watch me in my determination to self destruct. I admit I don’t really know what they went through.  I have been in the same situation of watching others go through this journey, but I have always had my own experiences as a kind of backdrop to understanding what was happening.

This morning a friend posted some music on Facebook. Often I pass by other people’s music post but the title caught my mind and I chose to listen (and watch) this time.  It’s amazing.  It is from Ashley Jordan

I was fading away… right in front of my family and friends.  They had no idea how to make a difference, and I know that I made it difficult for them because I was so intent on destroying myself that I didn’t want them to get close.

My fading away took the course of a physical fading as I starved myself through Anorexia.  But I was also fading away as the heavy doses of medication took from them, who I was.  I was different to the person they had known and loved.  They didn’t know how to be with this new, angry but desolate me.

As I repeatedly tried to kill myself, they were left wondering just how long it would be before I achieved my goal.  I know this because one of them had the balls to tell me that he wondered how much longer he would have a sister.  He even said in a letter that in some ways he wished I would achieve my goal…  and then at least my nightmare would be finished and there could be peace.

In addition to the anorexia, heavy medication and suicide attempts, my nightmare journey also consisted of constantly worsening self harm, reliance on drinking and over-medicating to get me through the day… or the night, not to mention the repeated rounds of Electro Convulsive Therapy (ECT).  The ECT also saw their sister, daughter, grand-daughter, wife, friend fading away as my memory was badly affected and to some extent just never returned.

Cate was fading before their eyes, and there wasn’t a damn thing they could do about it.  Those that could, poured money into treatment but it produced no results.  Those who I allowed, tried to let me know they loved me.  But then I was pretty determined to not let anyone near, and I had a husband who enabled that to be in his thinking that he was doing the right thing.  He kept them away.

And as for the husband, now an ex, I have little idea what was going through his mind.  While he wasn’t the right person for me, he still was an essentially good person who had somehow landed himself in the situation of loving someone who was fading away fast.

There is a chapter in my book, Infinite Sadness, about the role that family and friends took.  Of course it is written from my perspective, and not theirs.  Their perspective is hard for me to even imagine, but I know it had to have been rough.

“…It is strange how when I most needed people I couldn’t bear to be with them.  I hid from many phone calls.  The answer phone and Dave proved very useful.  When people knocked on the door I hid and pretended to be out.  I couldn’t stand myself or my feelings and I couldn’t handle the thought of others seeing me like that and maybe agreeing with me. What if they couldn’t stand me either? I maintained that I was not lonely but rather just very alone.  There is a difference and being with people wasn’t going to help me.  Many times being with people left me feeling totally out of the real world.  I didn’t fit. I didn’t like what I saw of myself and I didn’t want others to reject what I knew they would see….”

“…So why did I push them away?  Part of it was what I didn’t like about myself, that they might see if I gave them a chance.  But more so it was because I didn’t think they could understand.  Perhaps too, at times, I felt it was partly their fault that I was suffering so much.  Of course it wasn’t their fault.  There were definitely things about my life growing up with my family that were now affecting me, but equally there were things that had happened since I had become an adult.  I couldn’t blame my family for those things – but I did.  For a while everything was their fault.  I didn’t want to see them or hear from them.  Dave, thinking he was doing the right thing, made this easy….”

(p. 174,5 Infinite Sadness, 2009)

So why am I choosing to write, and cry, my way through this today?  Because when I listened to that song I heard, and thought about my family and what perhaps they felt as they watched me self destruct.  I know for me I constantly thought they didn’t get it.  The truth is that they probably didn’t.  How could they?  They had never faced this before and they were seeing me fade (mentally and physically) before their eyes.  To watch someone you love do that must be devastating.

When I was caught in that nightmare there was little time or even inclination to stop and think how what was happening to me, was affecting those around me.  I will never know how some of it affected people, but I know now that I am not the only person who suffered as a result of my mental illness.  Somehow for me, it is important now to be able to look beyond myself a bit.

I don’t have the perfect family.  Not at all.  Aside all of this, most of us have been through some very traumatic experiences in the past couple of years, what with earthquakes, deaths, health issues and more which have taken their toll on us.  We’re like any other family and some of my family actually had roles in the causes of my illness.  My friends are just like anyone else’s friends.  Human, with feelings and limits.

The good news is that I came back from fading away.  I know plenty of families don’t get their loved one back.  We are all different now, and the scars are clear, but I guess what matters is that we are here.

It’s worth thinking about sometime.  How it might be for our friends and families to watch.  They are pretty much helpless and generally don’t, or won’t understand for their own reasons.  Writing this has made me cry a lot today, because there have been losses.  Isn’t it amazing how a random piece of music (and video) can take our thinking down tracks we weren’t expecting?

And on a slightly lighter note…

“If you cannot get rid of the family skeleton, you may as well make it dance.” 

―    George Bernard Shaw,    Immaturity

Related articles

• Infinite Sadness… the book (infinitesadnessorhope.wordpress.com)

A Bit Mental (Lilo The Waikato)

Image credit: Lilo The Waikato (used with permission)

Yesterday I watched a great piece of television, and what’s more it was on mainstream television channel TV3.  The scheduling wasn’t great but at least it got there.  The programme was all about raising awareness of depression, and that has to be a great thing.  If you want to watch it, here’s the link.  It will be there for a couple of weeks.

Inside New Zealand – A Bit Mental – Special – On Demand – TV3.

Location map of Waikato River, North Island, New Zealand (Photo credit: Wikipedia)

A Bit Mental is a documentary about Jimi Hunt, a New Zealand man who has struggled with depression for two years.  As part of his recovery he created a challenge for himself of travelling down New Zealand’s Waikato River… on a $8 lilo air mattress (in other words cheap!)… and in doing so raising awareness for depression.  If you’re not sure what a lilo is, that’s the yellow thing Jimi is floating on in the picture above.  Just plastic and air.  He went through 11 in the whole trip as he succumbed to punctures.

He described it as:

“a ridiculous journey to raise awareness for a super serious problem.”

For those in other parts of the world, the Waikato River is our longest river at 425 kilometres.  There is some gorgeous scenery but some very serious white water known as the Huka Falls, as well as a few hydro power stations to get through.  In other words it’s a crazy journey that no one had done before on a flimsy plastic lilo, but Jimi did it.  The link above will give you the full story.

Jimi was told by his doctor that his depression had a chemical basis, rather than psychological and so his recovery was about correcting that chemical balance.  I admit I was slightly concerned when he commented that he wasn’t bad enough to need medication.  It was one of those things that just didn’t sit right with me.  Maybe because I was ‘bad enough’ to need medication.  Was he saying that because I needed depression I was much worse?  To me, I was just different.  I decided to drop the issue in my head, maybe I was seeing things that weren’t there (it happens often!).

Back to Jimi’s recovery, he was challenged by his doctor to get some exercise, get fit and set some goals.  And so Lilo The Waikato was born with his aim to raise awareness for depression and funds for Lifeline (a 24 hour telephone counselling line).

The Huka Falls, Waikato, New Zealand (Photo credit: Wikipedia)

The thing I really liked was that along the journey Jimi set himself up so that he had to ask for help, something which he recognised as key to his recovery, and something that he took a while to learn.  He had to ask for accommodation (the journey took about two weeks) and meals.  He had to ask for the occasional tow.

It was a practical reminder of how asking for help is so important when struggling with depression, and mental illness.  I guess it rang home to me because it is something that I recognise I have struggled with at different parts of my mental illness journey.  Some parts would have been so much easier, and less painful had I asked for help at the time.  Jimi recognised it as something that would have made a big difference to his recovery too.

What Jimi did was pretty amazing.  You wouldn’t get too many people who would take on such a challenge, let alone while raising awareness for mental illness.  And what’s more, there were many people (including more than 20,000 Facebook followers who encouraged, supported and followed his journey).

All this got me wondering, as I watched the programme, what awareness and support could be raised for other mental illnesses?  There is no official hierarchy of mental illnesses, but I’m inclined to think that depression is a little more ‘acceptable’ to the general public than other mental illnesses.  So what if there was a person with say, Schizophrenia or Borderline Personality Disorder (BPD) who could raise this kind of acceptance?  Would it work?  Would the general public just say “s/he’s crazy”?

No doubt plenty of people said that Jimi was crazy.  It’s certainly not something that I would choose to do.  But people got behind him and supported his cause.  It would be great to see more people backing a greater awareness of all mental illness.

Currently there is a woman, Annie Chapman, who is walking the length of the North Island – using the Te Araroa Trail (1600 kilometres), here in New Zealand to raise awareness of the need for better treatment options for those with mental illnesses.  It’s a completely different undertaking being a protest walk (known here as a hikoi) with community meetings along the way.  What interests me is that her Facebook followers amount to under 200.

Why is there such a difference in support?  I guess there are a lot of reasons, but I wonder whether the need to ask for help when you’re battling depression is more acceptable somehow to the public than the nitty-gritty of treatment options for all mental illness.  I don’t know, and perhaps I’m not being fair, but it does raise the question of what is acceptable to the public and what is too much?

What I do know is that what these two people, and probably others I haven’t heard about, are doing is fantastic.  Whatever is done to make mental illness easier to talk about, and more widely acceptable has to be great.

♦

“One must still have chaos in oneself to be able to give birth to a dancing star.” 

―    Friedrich Nietzsche

Related sites

• Lilo the Waikato (facebook.com)
• http://www.depression.org.nz/
• http://www.beatingtheblues.co.nz/
• http://www.thelowdown.co.nz/
• http://www.lifeline.org.nz/
• Hikoi for healthy choices in Mental Health (facebook.com)

Foraging In Dark Places

Yes, you’d be quite right if you came to the conclusion that I had been missing in action.  I have been doing what all good kiwi do, in order to stay alive.  Hide from anything alleged to be a predator.

Image credit: whakaangi.co.nz
.

This is a kiwi.  (A kiwi is not a piece of fruit, that is a kiwifruit).  Outside of captivity the kiwi is actually pretty hard to find.  They are nocturnal and prefer foraging in the undergrowth, keeping out of the path of their predators.  That long beak helps them in this foraging process.  While it might look strange, sometimes I wish I had a beak like that, so that I could forage away, safely out of harms way, and manage to turn over the good from the bad in the undergrowth.

I might not have the beak I would like but I have been foraging in the undergrowth myself.  It’s a good place to stay safe, keep out of trouble, and reflect.  Sometimes it gets a bit dark and lonely, but then bumping into other friendly birds in the undergrowth could provide for some companionship without risking the broad light of day.  My good friend Ruby and I seem to cross paths in the undergrowth a bit.  And I like that, although both of us seem in positions where we are unable to be of much help to each other beyond recognition of each other’s pain.  While I would never wish pain on Ruby, it is sometimes nice to know that I am not alone in this.

Okay, so what does all this mean, you’re no doubt wondering?

On a literal sense my eyes are now giving me trouble courtesy of Graves’ Disease.  It seems even more likely now that this little number is returning from remission, and it does not please me.   At this stage there is no treatment for my eyes available (until get gets worse and might require surgery).  The worst of it is pain behind the eyes.  The only relief I can get is a dark room with my eyes closed.  It helps a bit for the time I am there, but it does  mean very little gets done.

But it is the figurative darkness that disturbs me most.  I can’t think straight (it’s taken me all day to write this because five minutes at a time is a marathon),  I don’t want to think, I don’t want my feelings.  I don’t want anyone to ask me how I am.  I just want to sleep.  All this spells one thing to me:

D-E-P-R-E-S-S-I-O-N

Perhaps I mistakenly thought that when my medication got sorted out a few weeks ago, that I would be back to me.  The problem though (I think) is that I have been dealing with some very difficult and uncomfortable feelings in therapy lately.  Actually it’s more like a long running saga, but maybe I’m getting some where.  The problem is that it hurts like hell.

I regularly tell other people that feelings are just feelings, neither good nor bad.  And it’s true.  I know it is.  It’s just really hard to practise what I preach when I don’t like those feelings.  I’m trying not to judge myself based on those feelings but I find myself feeling guilty, ashamed and just generally not a very nice person.  I’m quite sure if you knew the substance of those feelings you wouldn’t like me either.

I apologise for not being able to go into the details but I set some rules for myself when I started blogging (using my real name).  There are some things I am simply not able to discuss here because of the impact that could have on other people.

But I don’t think the details really matter.  What this is about it finding a way to do what I tell others to do.  Feelings are just feelings.  They are just are.  But do I accept that when I find myself completely mortified by some feelings, let alone the intensity of them?

I think I did what any self-respecting kiwi does.  Scurry for the undergrowth and hide from predators.  Otherwise those predators (perhaps my judgments on my feelings) will whip my sorry arse.  For US readers read “ass”).  Hmm.

Meanwhile I would like to thank my friend Kevin for coming out looking for this missing kiwi.  I think I needed that.  Thank you Kevin.  I’m not sure how long I was planning on staying there.  And a big thank you to Frank for holding my hand in the dark.

And now I’ve been in day light too long, my eyes are hurting again,  and it’s time to find my darkened room again.

Hope is the feeling that the feeling you have
isn’t permanent.

 - Joan Kerr

Is There a Sign On My Back?

I am seriously wondering if someone (who doesn’t like me) has, unknown to me, stuck a sign on my back saying “pick on me” this week.  Mysteriously, each time I change my clothes, I still seem to have the sign plastered there for all to see.  Having spent time with my brother this morning, I sent him a text a few hours ago to ask whether he noticed the sign.  So far he hasn’t responded.  I’m not exactly sure what conclusion I should draw from that.

Some weeks seem just determined to make things hard, and this week has  achieved that for me in so many ways.  I thought bad things were meant to happen in three’s, but so far I’ve counted six.  Here’s a run down (and I promise it’s the short version):

1.  My trial to come off lithium failed (as I told you in Ten Years Later, And I Have My Answer).  You’ll be pleased to know that I am back on the original dose.  Just waiting for it to kick in.

Actually the day after my psychiatrist told me to start the lithium again immediately, my GP (General Practitioner who handles day to day medical issues) objected, and wanted me to wait another week “just to be sure”.  Basically I quoted my last post at him and explained why waiting wouldn’t be a good idea…  and then I ignored him.  Meanwhile as I wait for the lithium to kick back in, I have all the usual symptoms of depression.  It’s a few years since I was last depressed.  I hate that it is back.

2.  The implication of my inability to get off lithium now means that I can not get medication to treat my fibromyalgia (the whole point in trying to come off).

3.  A further implication of my inability to get off lithium is that I can not get adequate pain medication for fibro symptoms that can not be treated.  All I can use is paracetemol (an over-the counter analgesic) and a very limited amount of codeine.  Neither of these do anything for the worst problem, which is nerve pain.

4.  An implication of my inability to get adequate pain medication takes a blow at my intention to use  extra medication so that I could deal with the extra pain caused when I try to giving up smoking again.  (See  Unseen).  Actually my GP denied any knowledge of this issue, and had no willingness to hear me on the issue of pain caused my nicotine withdrawal.  He basically told me to “toughen up and try again“.  I can’t say I was too impressed by his lack of compassion, empathy and helpfulness.

5.  Totally unrelated to  numbers one to four, I saw my endocrinologist yesterday for a routine check-up for my auto-immune condition Graves’ Disease.  This has been in remission for about 10 months now, and I half hoped that he would discharge me from his care and send me on my way (on the understanding that the disease could come out of remission at any time.).  What he told me instead is that it looks very likely that the disease is coming out of remission.  It’s a wait and see game now.  More blood tests in a couple of months to draw a definite conclusion, and a reminder of what to do if acute symptoms return in the meantime..

Grave’s affects a number of areas in the body, but the biggest impact is on the thyroid gland (producing a pretty serious condition  called thyrotoxicosis), the eyes ( I won’t tell you what it does to the eyes simply because the thought of it turns my stomach), and speeding up the heart rate beyond healthy.  It’s not a pleasant condition to have, nor is the treatment particularly appealing for this ‘nuclear-free’ kiwi.  More about that if, and when it happens.

6.  Just when I get to Friday and really think I’ve had enough… today the Pain Management Clinic, a public health service designed to help me find alternatives for pain management has refused to see me.  Apparently I am simply not a priority, to the extent that they haven’t even put me on a waiting list.  Being unable to get off lithium, this referral was essential, but it seems it’s not to be.

So what do you think?  Is it reasonable to conclude that sign is on my back?  Are my stars just not aligned this week?  Is it one of those weeks when I should never have got out of bed? Hmm.

Image credit: farm4.flickr.com/3140/3103360425

What do I choose?

•

Despair or Hope?

I’ve been struggling to do much reading this week, finding it too difficult to concentrate even on a short blog post.  I manage the first couple of paragraphs and then drift off.  It’s a symptom of depression.  One thing that I did manage to read, made me stop and think.  Hope Is A Choice.  Actually, if you’ve got the time, and the concentration, there is a lot written on this premise.  I’m inclined to think it’s true, that for me hope is a choice.

Hope is an easy word to say, and I know I use it a lot in my writing, but actually it’s pretty hard to practise, especially when times are tough, and there is a ‘pick on me’ badge on my back.  Actually there had been a fair amount of despair going on here in the last few days.  All these health (including my mental health) issues I’m dealing with are chronic, with little to no hope for complete recovery.

When I said in my last post that I had proven to myself that lithium kept me out of prison and out of a grave, I wasn’t kidding.  That’s the reality, especially if I choose to go down the road of despair.

One of the extra difficulties I’ve faced this week is what Borderline Personality Disorder (BPD) adds to this scenario.   BPD enables me to split too easily between my emotions.  What that means is that one minute I can be happy and full of hope, sure that all this will work out.  But shortly after I can be completely depressed, despairing, withdrawn and without hope.

Actually it is this reason that has stopped me from posting this week.  If I post when I’m feeling good, you will get one impression which might be quite different from what reality is.  That has consequences for you, as the reader, trying to understand but it also has a habit of kicking back at me.  It’s hard to explain but I’m sure fellow BPD sufferers know the issue well.

What I really need to say is that this week has been really hard, and it’s not over yet.  I have some practical issues that I am going to have to try to resolve, but as yet I don’t know how I will do that, and frankly it doesn’t seem like I have a lot of support from the medical fraternity.

Sometimes this week, I have seen very little hope.  Other times,  I have had to go back to borrowing hope (see Borrowed Hope).  I felt disappointed to have to do that, but it was necessary because I had lost sight of my own hope.

As for now?  Deep inside I have a sense that this will work out, that my health can be revived and that hope does exist for me.  Although I’m not sure how it will look.  Sometimes I have to look a long way to find that sense of hope and in the meantime I guess I’m suspending judgement.  I’m not choosing despair.  No matter how bad I feel, I refuse to go back down that road again.  I can’t afford to do that to myself.

“to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.” 

―    Ellen Bass

Related articles

• Ten Years Later, And I Have My Answer (infinitesadnessorhope.wordpress.com)
• Unseen (infinitesadnessorhope.wordpress.com)
• Borrowed Hope (infinitesadnessorhope.wordpress.com)
• Hope Is A Four Letter Word I Use Now (infinitesadnessorhope.wordpress.com)
• The Anatomy Of Hope [BLOG] (positivelypositive.com)
• The Second Coming of Hope (positivelypositive.com)
• Finding Hope & Acceptance (livingwithcfs.com)

Ten Years Later, And I Have My Answer

This week was one of those rare weeks where I had planned (if not actually written) what I was going to blog about, and when.  Today (being 31 October here in NZ) I was going to tell you all about Halloween kiwi style.  Kiwi readers will about now be thinking to themselves “this will be Cate’s shortest post ever“.

They would probably be right and you’re just going to have to wait for that mind-blowing information of what happens at Halloween here.  Meanwhile I want to wish all those that are celebrating the occasion a whole heap of fun.  Especially my friend Eileen, who I know lives for this time of year.

Over the past months, I have mentioned at times that I was planning to come off a medication which I have been on for ten years, so that I would have some possibility of getting medication that would treat my fibromyalgia.  I had some anxiety about doing this because I’ve never been sure exactly how much that medication was doing for me (and an anti-depressant I was put on at the same time).  It was a chicken and egg thing, of not knowing whether the medication had made the difference, or whether it was simply the therapy.  Or maybe a combination of both.

I was a little apprehensive of what the result would be when the lithium was removed so consulted my psychiatrist a few months back.  He wholeheartedly agreed that I should try to wean off it over a number of months.  I did as he instructed (to the letter) and took my final dose on Saturday.  At that point, I had planned to post here about finally being free of that drug (which has quite a reputation), but I was so unwell with fibromyalgia that to post anything would have been completely beyond me.

It’s now Wednesday, and after a month of the lowest lithium dose I could take, followed by three days with no lithium, I know this much with certainty:

Lithium does this for me:

it keeps me alive and

out of prison!

That is no exaggeration, sadly.  For 10 years no one knew whether these medications were actually doing anything, but everyone was too scared to ‘fix what aint broke.’  Fibro made it necessary to find out what happened if we took the lithium away…    and now I know.  Thankfully, I had enough awareness of myself and foresight, to get some medical help fast.

Watching a car crash is never enjoyable, and can be of only limited use to those who must watch, and so I’m not going to go into the details of what happened, except to say that when I realised that I was at a point of considering either murder or suicide, I knew it was time to get help.  I was tearful, not sleeping, and verging on paranoid and delusional.

Thankfully I had the foresight to email my psychiatrist, to see if he thought there was any connection between my mood dropping through the floor boards and the final stopping lithium.  By the time he eventually got back to me (last night) I had taken some other, extra medication to calm me down, and I was feeling a little more rational and calm, although very doped.  He agreed that it was almost certainly the reaction to no lithium and urged me to start it again straight away, because it was clear that it had helped.  He also added that I would now need to stay on it for life.

Relief came first in my mind, because I knew I couldn’t possible live the way I had the last three days.  The disappointment that I wouldn’t be able to do what all this was about, get medication for fibro.  But mostly relief, because I know that in those three days I was heading towards prison and/or suicide, not to mention pushing away the man I love.  I don’t want any of those things to happen.

I need to be clear about something that is commonly misunderstood.  Yes, I take lithium (I started again last night) but I don’t have bipolar.  Most people, including doctors who should know better, assume I do have bipolar.  But any psychiatrist worth anything will tell you that in rare occasions lithium is also used to medicate severe, chronic depression.  That is why I was put on it in the first place back in 2002, when they had run  out of all other options.  Now I expect to stay on it for life.

Lithium has a pretty bad reputation (for a variety of reasons), and I know that it has already caused a serious auto-immune disease (Graves’ Disease) which I now have for life, regardless of whether or not I continue on lithium.  The auto-immune disease contributed ( along with extreme trauma) to the fibromyalgia, so basically I can put my physical health problems down to being caused largely by lithium use.  Still, lithium could cause more damage to my kidney function.  All that suggests why would I possibly want to be on this drug still?

Because it keeps me out of prison and it keeps me out of a grave.  That seems like enough for me.  For now, I have to build up my lithium levels back to a therapeutic dose, and until then I am lying low.  I need a bit of time out.

That said, my mind continues to click over blogging ideas so don’t be surprised to see more from me soon.  And I will definitely be posting on Sunday (4 November) for the BlogBlast4Peace event.  I wouldn’t miss that for anything, and if you’re not yet involved, it’s not too late (even if you are not a blogger).  Check out this to get details.

One final word

Just because I had an extreme reaction to coming off this medication, doesn’t mean everyone will.  And just because I have proven that this medication actually helps me significantly, doesn’t mean it will for everyone.  In my opinion, medication is a uniquely personal thing because each person will  react differently.  So what ever you do, do it in consultation with your doctor.  Social media (including this blog) is not the place to get reliable information on a medication’s suitability or otherwise for you.  What I have shared  is simply my experience, and nothing else.

“Listen to the people who love you.  Believe that they are worth living for even when you don’t believe it.  Seek out the memories depression takes away and project them into the future. Be brave; be strong; take your pills…  Reason with yourself when you have lost your reason.” 

―    Andrew Solomon,    The Noonday Demon: An Atlas of Depression

♦

“I now know for certain that my mind and emotions, my fix on the real and my family’s well-being, depend on just a few grams of salt.  But treatment’s the easy part.  Without honesty, without a true family reckoning, that salt’s next to worthless.” 

―    David Lovelace,    Scattershot: My Bipolar Family

Related articles

• I’m Just Plain Weird (infinitesadnessorhope.wordpress.com)
• Values Assumption Lithium (drugs32wed4pm.wordpress.com)

World Mental Health Day (on kiwi time)

On the Threshold of Eternity (Wikipedia.com)

NB.  This post is purposely dis-jointed, because in my experience that is what Depression is.  Dis-jointed.  Nothing fits.  Nothing makes sense.  Words are simply words and don’t fit together.  Ideas come and go but it is almost impossible to put them together to form a conclusion.  The only conclusion in Depression, is when the darkness finally lifts.

This year the theme for the World Mental Health Day is:

“Depression: A Global Crisis”

“Depression affects more than 350 million people of all ages, in all communities, and is a significant contributor to the global burden of disease. Although there are known effective treatments for depression, access to treatment is a problem in most countries and in some countries fewer than 10% of those who
need it receive such treatment.” (1.)

That’s what the World Health Organisation (WHO) are saying about Depression, the topic of this year’s World Mental Health Day (today).  Depression is something close to my heart because I struggled with it for so long. 

I have heard it described as the “common cold of mental illnesses”.  Anyone who has struggled through Major Depressive Disorder will tell you that there is nothing ‘common cold’ about it.  It is so much more than the equivalent of a running nose and a sore throat for a few days.  I’ve heard other people describe it as a ‘self-indulgence’, presumably a case of feeling sorry for yourself perhaps?  It comes then, with an expectation of ‘pulling yourself together’.  Again, I’d argue that and say it’s not that simple.

WHO describe Depression as:

“Depression is a common mental disorder, characterized by sadness, loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, feelings of tiredness, and poor concentration.”  (2.)

I don’t suffer from Depression at the moment, but I am likely to be on medication for the rest of my life in order to hopefully prevent it coming back.  That said, my psychiatrist recently announced to me ‘yet to come’ events in my life that he thought would see me most at risk.  So kind!  Actually I think I would rather not know.  It’s a bit like being told at twelve years of age that my Dad’s death sometime, in the then future, would completely destroy me (see My Journey Through Grief).

“Depression is a condition that is almost unimaginable to anyone who has not known it.  A sequence of metaphors – vines, trees, cliffs, etc – is the only way to talk about the experience.”

 - Andrew Solomon, The Noonday Demon – An Anatomy of Depression

Andrew Solomon was right.  It is very difficult to describe depression in the detail that would adequately explain the nightmare.  I had my own metaphor, which came to me in a dream.  I was walking and turned into a cul-de-sac (a dead-end street).  There was no way out unless I turned around and re-traced my footsteps.  That wasn’t even a possibility in my mind so I had to keep on walking. 

When I got to the end I stepped off the road and into a dense forest of gorse bushes.  I fought my way through, getting torn to shreds by the thorns of the gorse as I walked.  I couldn’t see the way through and I certainly couldn’t see an end to the battle.  It just went on and on, enveloping my footsteps as I went, so that there was no possibility of turning around again.  For years I was stuck in the gorse, getting more hurt the more I fought.  It was an impossible journey.

As a teenager when I lived in Wellington, our home looked out on a vast hillside of gorse bushes.  It’s unforgiving stuff.  You can’t possibly think of pushing your way through it.  It looks pretty when the yellow gorse flowers bloom but that simply disguises the thorns that await.  Every few years someone would carelessly set fire to some part of the hillside. Then we just hoped the fire wouldn’t spread to the houses further along the hill, and we hoped no firefighter would be hurt in the process of extinguishing the flames.  For at least the next year we would then look out at a charred, blackened, dead hillside.  No greenery, no beauty, just waiting and hoping for the life to come back.

It pretty much sums up my experience of depression, but I hasten to add that depression is one of those things that is different for everyone who encounters it.  Some people manage to carry the burden of depression for years without others knowing it.  Somehow in public they can put on a mask and pretend everything is fine, no doubt collapsing in despair when they’re alone.  For others, depression is completely disabling and the person is both physically and emotionally paralysed by it.  For me?  I was somewhere in between.  I could put on a mask when necessary, I’ve always been able to do that.  Only those close to me would know that despair was very close to the surface.

I read an excellent article by Kat Kinsman at CNN about her depression.  She described it this way:

“…from time to time, for no good reason, it drops a thick, dark jar over me to block out air and love and light, and keeps me at arm’s length from the people I love most.” (3.)

For the 350 million people who WHO identified as likely to be suffering from Depression, there are probably as many descriptions of the hell that it is.

When I was going through Depression I struggled to explain it to anyone (including myself) but I found that music expressed it pretty well.  One song that became an inspiration for me in some of the darkest times.  So often I wanted to cry, but there were no tears.  Other times I couldn’t stop crying.

I quickly learnt that the greatest people to have around me were those who could bear to sit in silence with me.  Those who could ‘cry’ with me as they attempted to understand my darkness.  More often experienced though, were those ready to leap in with their words of advice… which meant nothing to me.  I learnt, and I continue to remember today that the time of deepest darkness for me, is a time for quiet.

Now is the time for tears
Don’t speak Save your words
There’s nothing you could say
To take this pain away
Don’t try so hard
You can just simply be
Cry with me don’t try to fix me friend
That’s how you’ll comfort me

Heavenly Father cover this child with mercy
You are my helper through this time of trial and pain
Silence the lips of the people with all of the answers
Gently show them now is the time
Now is the time 
Now is the time for tears

 - Charlie Peacock

Related articles

• Going public with depression (cnn.com)
• Depression 2.0 (scruffy-duck.net)
• How to live with someone who suffers from depression (nonaknowsbest.wordpress.com)
• Depression… Defined! (iwanticewater.wordpress.com)

Loose Ends At The Start of Mental Health Awareness Week

For some weeks now I have had it firmly in my mind that 10 October is World Mental Health Day.  According to the World Health Organisation (WHO) website it is 10 October (Wednesday), but for some reason I had stuck in my head that it was Tuesday (today).  A bit of searching, and I’ve found that in some places World Mental Health Day is being marked on 9 October (today).  No wonder I’m confused.  You’d think that if we were going to have a World Day we’d make sure we all did it on the same day.  But then maybe that would be too logical.

I did more searching and confirmed that here in New Zealand the occasion is definitely Wednesday, and so what I was going to post today will wait for tomorrow.  In New Zealand, it is also Mental Health Awareness Week all week so I am going to try to acknowledge that in my posts this week.

The topic of World Mental Health Day was chosen by WHO as ‘Depression: A Global Crisis’.  I like this topic because Depression has become such a wide-spread problem around the world and I believe it needs talking about.

Some months ago (Mental Health versus Mental Illness… a Stigma Issue?) I wrote about some questions being raised by people about this chosen topic, on the basis that they felt Depression was too much of a negative topic.  I still think this is a shame.  Depression has a huge impact on people’s mental health and so needs to be addressed openly.

Interestingly in New Zealand, there is a lot of work done to raise the issue of Depression, with Depression. org and The Lowdown (aimed at young people) leading the way.  I really like what I’ve seen of these programmes, and are helping to spread the awareness that Depression can affect everyone.  That said, the NZ Mental Health Foundation  here, is promoting the subject of mindfulness this week, rather than Depression.  Mindfulness is certainly something that everyone, whether or not the have a mental illness, could benefit from in terms of their mental health but there is a part of me that wishes they had addressed the issue of Depression as well.  Maybe that’s just my bias.

Only in this past week, I learnt more about the growing battle between the use of the terms ‘mental health’ and ‘mental illness’.  Some people don’t want to focus on mental illness, because it’s negative like I said earlier; but then there are others who find the use of the term ‘mental health’ an insult.  Apparently the term ‘mental health’ is stigmatizing, because it  ignores that mental illness exists.

I think I’m getting a headache!

Where do I stand on this?  I will fight against anything that adds to the stigma of mental illness, but personally I believe there is a place for both terms.  I have a mental illness which I am completely open about.  I am not going to run from the term ‘mental illness’ because it is factual and is my reality.  It is no different from the physical illnesses that are my reality.

That said, I think for me it is still possible for me to achieve mental health in spite of my mental illness.  It might sound a bit weird, but if I can manage my symptoms and function well while still having the mental illness, I call that mental health for me.  So I’m inclined to say that there is definitely room for both terms.

Dare I say it, but I think those on the side of wanting to refer to everything as ‘mental health’ are being unrealistic.  Mental illness does exist and we can’t, or shouldn’t hide from it.  But those who want to ignore the existence of ‘mental health’ are perhaps being a little precious.  Again, mental health exists and is something we can all work towards in our own ways.

Here’s an idea.  Let’s stop fussing over which term is used and get on with working on reducing and managing mental illness where possible, so that mental health can be experienced by as many people as possible.  If we argue of the terminology too much we run the risk of ignoring the real problems.

PS.  If I offended anyone with this post… I guess I’m getting used to that.  This is simply my opinion, neither right nor wrong.

It is merely an accident of history that it is considered normal in our society to believe that the Creator of the universe can hear your thoughts while it is demonstrative of mental illness to believe that he is communicating with you by having the rain tap in Morse code on your bedroom window.” 

―    Sam Harris,   The End of Faith: Religion, Terror, and the Future of Reason

Related articles

• Mental Health versus Mental Illness… a Stigma Issue? (infinitesadnessorhope.wordpress.com)

Mr Positive (And Becoming Little Miss Okay-With-That)

Image credit: http://mrmen.wikia.com/wiki/Mr._Funny

“We are all in the gutter, but some of us are looking at the stars.” 

~Oscar Wilde, Lady Windermere’s Fan, 1893

Do you remember the 1970′s series of Mr Men?  I always liked Mr Funny best, followed shortly after by Mr Pernickty, because I like the word ‘pernickty’ (also known as Mr Fussy).  There were 49 Mr Men characters (followed by 42 Little Miss characters) but some years back I named a 50th Mr Men.  That was my Dad, and I named him Mr Positive.

I need to start by saying that I mean no disrespect to my father, who has since died, and he was aware and amused by my naming of him, so I am sure he would have no problem with what I write.

Dad was the ultimate positive person.  He wasn’t just a ‘glass half full’ man but rather a ‘glass overflowing with your favourite drink, even when all you can see is a few drops in the bottom’ man.  This had to be a good thing, especially when in his job he spent a lot of time helping other people in some very dire circumstances.  The thing is though that when you’re the ‘glass half empty with a hole in the bottom of the glass’ daughter, with a tendency toward severe depression, all this positive stuff could be a little grating at times, to say the least.

Some people, including my Dad, took the view that to pull me out of my depression I needed the good things in life pointed out, and Dad had a knack of being able to see good in absolutely everything.  For me though, love him as I did, I hated it and would want to crawl into oblivion because I happened to know that there simply wasn’t good in everything.  Actually sometimes there is bad.  Sometimes we get hurt and unexplainable tragedies occur, and that it is very difficult to see how there could possibly be any good in them.

Dad would say “life is good!” and his pessimistic, depressed daughter, if given half the chance, would say “bollocks!”  And there we would come to a friendly but frustrated impasse, me unable to see his view and him unable to see mine.

What I’m realising now that if it had been possible to put our two views together then we might have got somewhere, instead of me simply putting my hands over my ears and saying “Mr Positive, Mr Positive, Mr Positive” while pretending it all didn’t exist.

Yesterday I wrote My ‘Anti-Social Media’ Day expressing my frustration with the level of negativity to be often found on Facebook.  What concerned me was that when we fill our minds with negative things, then we run the risk of becoming that negativity.  I think Dad would be smiling at that, because while I still don’t like a blind ‘everything is great’ attitude, there is some definite advantages to some positive thinking. (Yes, Dad I really did just write that).

Several people commented to me after that post that achieving a balance is what is necessary, and I totally agree.  If all I see is negative then that is all I know, but to take out some of that negative and replace it with positive means that I get to know something good.  And so I took some steps to limit the negative posts arriving on my news feed.  I ‘unliked’ a few things and restricted what I see from some other sources.  I also walked away from my computer for a good while, and spent some time with people who have a positive effect on me.  Already I feel better.  Already I don’t have that ‘sinking to the bottom of my boots’ feeling when I have to see some of that stuff on my screen.

I will never become Little Miss Positive, because I recognise and acknowledge that there is bad in this world, there is hurt and not everything is good.  But I am starting to realise the importance of what I let into my mind.  not only by what I see on my screen but even in the people I spend my time with, and how I let them influence me.

I am realising that I have the control over what influences me.  It’s my choice.  I’m not denying that negative happens, and I’m not turning my back on people who are trapped for now in a sea of negativity, but I am finding ways to ensure that doesn’t turn me into a negative person.

I suspect I will always have a natural tendency to ‘glass half empty’.  I always have, regardless of the state of my mental health, but I can work with that and I can simply enjoy that I have a glass and it has something in it.  And that is enough for me.

“The sun shines and warms and lights us and we have no curiosity
to know why this is so; but we ask the reason of all evil,
of pain, and hunger, and mosquitoes  and silly people.” 

~Ralph Waldo Emerson

Related articles

• My ‘Anti-Social Media’ Day (infnitesadnessorhope.wordpress.com)
• Happiness Is…  (infnitesadnessorhope.wordpress.com)
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Dona Nobis Pacem – 9/11

Image credit: Shannon’s Moments of Introspection
http://peaceglobegallery.blogspot.co.nz/p/who-we-are.html

As I write today, it is actually September 12 in my part of the world, but I want to recognise that in the United States and around the world, 9/11 is being remembered again today.  As I wrote yesterday, 9/11 also marks my birthday, and while this year I have finally been able to celebrate that fact again, I admit that celebrating anything on this day just doesn’t seem quite right anymore.

I find myself almost being apologetic when asked when my birthday is, and I know that I am not the only one who feels this way about having a birthday on such a day.  The other thing I note is that until 2001 my birthday was always 11/9 because that is the way we write the date in my part of the world.  Now it is so much easier to say my birthday is 9/11 and still know that people won’t think my birthday is November.

But one day on is actually what I remember.  It wasn’t September 11 that the world seemed to fall apart in New Zealand, but rather it was waking up on September 12 that I heard that the planes had flown into the World Trade Center towers, (as well as the horror in Washington DC and Pennsylvania), and it was for the rest of that day that we followed the terrible news.

I was in hospital at the time and my favourite nurse woke me saying that the world was ending (that’s not what you need when an inpatient in a psych hospital).  I had no idea what she was talking about but in my very unwell state assumed I must have done something really bad.  In the next weeks I battled between reality and some sort of depressive delusional fantasy.

I was far from well and it wasn’t long before doctors decided that I was a candidate for more Electro Convulsive Therapy (ECT).  Lucky me.  I was well enough to sign on the dotted line but I knew little else except for concluding by then that 9/11 was all my fault.

The road to recovery has been long but one of the things that has become more important to me is the need for us to work towards peace.  There is too much hate, too much bloodshed and too much war in my mind.  It’s not something that I feel at all comfortable about, and the need for us to love our brothers and sisters seems increasingly urgent in my mind.  Why can’t we stand side by side?

In line with my thoughts on the need for peace, I have joined Blog Blast 4 Peace, a movement of bloggers blogging for peace.  This is a group that has been running for six years now and on November 4, there will be a commitment from involved bloggers to write that day for peace.  The images included on this post come from that source.

Peace means a lot of different things to me, and it is my hope to explore what it is that I wish for.  I have written before about my desire to see Peace Not War, as well as that I admit to being An Idealist.  I don’t pretend to think that everyone will agree with what I might think, but isn’t it time we were talking about what we mean by peace and how we can achieve it?

No one wants another 9/11 and while the world has changed much in 11 years, there so much more that is possible so that we can learn to live alongside one another.

There was an excellent post by Ruby of A Canvas Of The Minds a couple of days ago to mark World Suicide Prevention Day, in which she promoted the idea of:

“One hand holding on to another.  One human telling another human that they aren’t alone.  One person sharing their strength and understanding with another person.”

I like this a lot, and while Ruby wrote it in connection to suicide prevention, I see it as something that peace can also achieve, so hopefully Ruby won’t mind that I borrowed it.  It applies so well to peace, whether it across the world, in our local neighbourhood, or simply peace of mind for each of us.

Dona Nobis Pacem (Grant Us Peace).

“The day the power of love overrules the love of power, the world will know peace.” 
―    Mahatma Gandhi

“World peace must develop from inner peace. Peace is not just mere absence of violence. Peace is, I think, the manifestation of human compassion.” 
―    Dalai Lama XIV

Related articles

• It’s My Party… (infinitesadnessorhope.wordpress.com)
• Peace Not War   (Passion Profile Challenge #1) (infinitesadnessorhope.wordpress.com)
• An Idealist (infinitesadnessorhope.wordpress.com)
• May Your Light Not Go Out (acanvasoftheminds.wordpress.com)
• Blog Blast 4 Peace (peaceglobegallery.blogspot.com)