Teetering On The Edge

This could be my shortest post ever.  Why?  Simply because it is so hard for me to write about.  It’s something that has been on my mind to write about for a number of weeks now, but I haven’t been able to find the courage.  These posts are really hard.  It’s much easier to just walk away but I know that right now I am teetering on the edge, and I need to address the matter.

‘Not Otherwise Specified’

‘Not Otherwise Specified’ is one of those terms that is attached to a lot of mental illnesses.  For me, it is attached to an Eating Disorder.  Yes, one of my labels is Eating Disorder – Not Otherwise Specified, or ED-NOS.

I’ve been carrying that label around with me for a number of years now.  Basically it says that I have a pattern of disordered eating but I no longer meet the physical requirements of another eating disorder like Anorexia, Bulimia or Binge Eating Disorder.  If you have been following my blog for a while you will know that I suffered from Anorexia for a number of years.  Now that my weight is not below the specified limits of Anorexia, and menstruation has returned, I am classed as ED-NOS.

This is where I get a little cynical, because I really don’t think that the fact I have ED-NOS is of any interest to anyone who is involved in my health care.  It is something I carry alone.  It seems to be that the ‘not otherwise specified’ tacked onto the end of a diagnosis is an excuse to ignore.  [My apologies to those health professionals who do not ignore].

That matter of being ignored has left me this week teetering (alone) on the edge.  I tried to get help earlier this week, when I realised the problem, but failed.  The person (a health professional who knows me well) was unwilling to listen.  I have enough self-awareness though to know that I am struggling, and to start to identify why by myself. I’ll try to explain.

While I was in England I was aware that I was having difficulties with food again.  It wasn’t really a new thing but when I am at home, and living on my own, I can just cope with the difficulties and ignore them if I choose.  When I’m suddenly living with other people, it’s not so easy.

One of the things I struggle with is choice.  Give me too many choices of food (like going into a cafe and choosing something to eat) I really struggle.  I go through this whole process of what I would like, what would be healthy, even what others will expect me to choose.  In the end, it is easier to choose nothing because I am getting flustered.  And so I do.  Even though I might be hungry, and I might want something. I have nothing.

Another difficulty I faced (which I hasten to say is no one’s fault, it’s just how it is) was being overwhelmed by too much food.  A large plate of food, even if I’m hungry, just seems too much and I struggle to eat it.  I struggle to know when I’ve had enough, and so I struggle to know when to stop.  Even my perception of how much is actually on the plate is distorted.

These issues may sound small but were affecting me each day as I faced meals, and snacks.  The pressure in my head was immense, and that just made it worse.

Coming home to New Zealand last week, saw me getting more stressed the closer I got to New Zealand.  Not for the same reasons this time, but rather a number of unrelated issues that I knew I had to face, and deal with, when I got home.  In my own way I started to panic and feel out of control.

When I feel out of control I rush to try to place control in parts of my life where it is possible.  A week on I have realised that I took that control I needed by controlling my intake of food again.  I have chosen not to eat as much as I know I need.

This is what Anorexia was about for me, all those years ago.  I felt out of control of my life at the time, so took control of one thing I knew I could.  Food.  And then I also took more control by laxative abuse and over-exercising.  I did it for years and made myself very sick, yet it was something that made me feel better because I at least had control of something in my life.

Right now I don’t have Anorexia and I am not underweight.  I just realise though how easy it would be to slip back into that disordered pattern of eating.  Reacting this way to other aspects of my life, which might seem out of my control, is not healthy.  I know that, and it’s not something I want to do.  But I can tell you that having that small bite (pun intended) of control is completely enticing.

Recovery from an eating disorder would be so much easier if we didn’t have to eat.  Yes, I like food but I hate how it screws me up and how I have to face that disorder several times a day.  There is no getting away from it.  It’s something that I must have in order to live.  If you don’t have an eating disorder, stop and think for a moment how difficult it is to face potentially deadly poison (like say a drug you are allergic to) several times a day.  It is literally like teetering on the edge.

PS.  One of the difficulties about writing this is the fear of advice.  I don’t want any.  I have a pretty good awareness of what is going on and what I need to do, and unless you have been through the same thing, then it is difficult to gauge what would be in any way helpful.  So please, don’t be offended by me saying ‘no advice please’.  I’m simply sharing my experience to raise awareness. 

I haven’t blocked out comments (because comments are always welcome), but in order to protect myself emotionally I won’t be responding to any advice that might be come through in spite of my request.

“It’s dark because you are trying too hard.
Lightly child, lightly. Learn to do everything lightly.
Yes, feel lightly even though you’re feeling deeply.
Just lightly let things happen and lightly cope with them. 

I was so preposterously serious in those days, such a humorless little prig.
Lightly, lightly – it’s the best advice ever given me.
When it comes to dying even. Nothing ponderous, or portentous, or emphatic.
No rhetoric, no tremolos,
no self conscious persona putting on its celebrated imitation of Christ or Little Nell.
And of course, no theology, no metaphysics.
Just the fact of dying and the fact of the clear light.

So throw away your baggage and go forward.
There are quicksands all about you, sucking at your feet,
trying to suck you down into fear and self-pity and despair.
That’s why you must walk so lightly.
Lightly my darling,
on tiptoes and no luggage,
not even a sponge bag,
completely unencumbered.” 

―    Aldous Huxley,    Island

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It’s Not All About Me

Recently I had cause to want to say something to someone, who like me, has Borderline Personality Disorder (BPD), or the new name Emotionally Unstable Personality Disorder (EUPD).  I wanted to say to her “It’s not all about you.” I could see her doing, what we with BPD always run the risk of, in taking a situation that wasn’t anything to do with her, and making it all about her.  I quickly came to the conclusion that it was best to keep my thought to myself this time, as otherwise it would have indeed, become all about her.

I should say that I know us well, and so if you have BPD and are thinking that I’m talking about you…  I’m not.  You know that song “you’re so vain, I bet you think this song is about you“?  It’s true.  This is nothing about you.

That said, all of us with BPD will know our tendency to think that the world revolves around us.  Whatever is said, must be about us. Whatever is said, must be confirmation that we have just been, or about to be, abandoned.  Whatever is said, must be an indication that the speaker doesn’t like us.  We use it to feel rejected, hurt and abandoned.  Every time.

The problem with it is that not only do we take the wrong message from what has been said, but we also run the risk of making that rejection happen.  People get tired of us taking things the wrong way.  They get tired of us making what has been said, all about us, when really it has nothing to do with us.  The ultimate is that we end up abandoned, as we feared, because of out own actions.

This is something I know about, because I have been doing it for years.  I could have gone on doing it too.  I could just say “it’s just my BPD that makes me do that“.  I might not be popular for saying it but BPD can be used as an excuse way to easily.  For me, I know my BPD makes it likely that I will interpret situations/conversations to be all about me, but I’m trying to make it different.

I’m trying to say “hang on a minute, this is not all about me.”  Actually, it’s probably got nothing to do with me and I would be a much better friend to myself and those around me, if I could distance myself from the automatic reflex of ‘it’s all about me‘.

I know what I am suggesting is not easy.  Actually it’s really hard to un-do a lifetime of reacting this way.  But I realise that while BPD is part of my personality, I don’t have to let it rule my life.  I don’t have to let that reflex kick in.  It is possible to do things differently… if I try.

BPD isn’t something that can be cured.  We know this, but I don’t believe I have to be permanently disabled by it either.  I can teach myself to react differently.  I can tell myself “hang on, this isn’t about me, how about I react differently?“

Maybe you have BPD, and disagree.  That’s okay.  I know that this is really difficult to do, and maybe you’re not in a space to be able to try.  This is just something that I have been trying for myself, for about six months now, and while no one else might be able to see a difference (and that’s okay), I know that for me, there is a huge difference to how I react to the things that happen around me.

I admit it’s still not an automatic thing for me.  I think it takes time to make things automatic, and maybe even the existence of my BPD will mean it’s never automatic.  But I’m not going to let that stop me.  I know that if I am to have a good life and healthy relationships I had to make a change.

It’s about self-talk.  There are no miracles and each time I see or hear something I consciously have to say to myself ‘it’s not all about me‘.

It’s hard, and it won’t happen for me unless I make the conscious decision to do things differently. When the person I referred to above tried to make a conversation all about her, I too (and I know that sounds crazy) had to then tell myself that her response was ‘not all about me’.  It ran the risk of snowballing for me, but this time I was able to stop myself and remind myself to do it differently.

Now, a reminder for readers who have BPD.  What I have written is ‘not all about you’.  What you choose to do with this information is your choice.  I have not written this about you, or even for you.  How do I know that?  Because this written ‘all about me’.

And if you don’t have BPD?  Believe me, that this is a big issue for us.  We struggle with it in every connection we have.  It’s disabling to the point that it prevents us communicating with others.  But I’m not willing to let it disable me anymore.  If I want to have healthy relationships then I have to find a way to beat this aspect of my personality.

“It is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.” 

―    Abraham Maslow

Imagine What This “Crazy Accident” Does to Mental Health

It’s been a while since I have posted, because as I said in my last post, I am currently in England. While there have been many things I have wanted to write about, circumstances have meant that is just hasn’t happened.

Then yesterday I saw a random news article.  Initially I was speechless… and then I started to rant (I do that sometimes).  Then I decided I simply need to share this with you.  Not for the sensationalism that I’m sure some ruthless writers could capitalise on, but for the wake up call that this has to be.

“It is easier to build strong children than to repair broken men.”

Frederick Douglass

Before telling you about the article it is important for me to say that this is about guns and I don’t like guns.  I don’t agree with the public having ready access to guns, and even though I recognise that in some countries, people claim their ‘constitutional right to bear arms’, I personally disagree with this.  That said, I don’t come from such a country and so some may say I have no right to comment.  Except that free speech is a right too, is it not?  I have little interest in debating gun control, but I have a lot of interest in considering ways in which we can protect the mental health of the public at large, both child and adult.

Described as “just one of those crazy accidents” the news article, to which I refer, told of an incident this past week where a five year old boy in Kentucky, US accidentally shot dead, his two year old sister.  This “crazy accident” occurred using a 2.2 calibre rifle the five year old boy was given as a gift last year.

I admit that I had no idea that there were guns made specifically for children.  How naïve?  I can’t imagine what possible need there would be for children to have guns in their possession.  It’s not worth anyone trying to tell me what need there is, because I simply won’t believe you.  Personally I have enough trouble with a five year old having access to a toy gun, but to a real gun?  With live ammunition? Absolutely not.  It is just wrong.  Why can’t children be children?

What really concerns me is the effect that such things has on the mental health of the people involved.  How does a five year old comprehend what he has done in killing his sister?  How does he cope with that, both now, and for the rest of his life?

How do his parents cope with what their son has done?  But perhaps even more so, what they have done in allowing their son the access to the gun?

Of course I am not a parent, and therefore can only begin to imagine what their thoughts and feelings might be right now.  I don’t want to judge the parents, but I do see the need to ask what happens to the mental health of the family (as a group and as individuals) when children have access to guns.  There are a number of mental health labels that I can see becoming a very real part of this family.  Is that what we want for our societies?

My opinion is that it is not in any way what we want.  I can not see a single reason why a five year old child should have a gun or ammunition.  Surely children need to be children.  We shouldn’t be turning them in mini-adults by giving them either the tools or the skills to kill (whether by “crazy accident”or not).

The right to bear arms becomes crazily out of control when children have their own guns.  It strikes me as interesting that there is so much concern about people with mental illnesses having access to guns, yet meanwhile our children, even pre-schoolers, are given guns.  How do they have the ability to determine what is right and what is wrong?  Without a doctorate in psychology I probably can’t comment except to say that I don’t believe children can make the decisions they need to be able to, in order to manage a gun.  That said, I’m not convinced I can either (and that has nothing to do with my mental illness).

I feel incredibly sad for that five year old.  It is beyond me how he can cope with the feelings he has after accidentally killing his sister this week, both now and in the years ahead.  I believe he will need a lot of support for the rest of his life.  Maybe the news media want to call it ‘a crazy accident’ but I can’t.  It was a tragedy waiting to happen.  I hope that parents who allow their children the access to firearms will act now to stop it happening again.

“If you want your children to be intelligent, read them fairy tales. If you want them to be more intelligent, read them more fairy tales.”  

 - Albert Einstein 

Who Would Have Guessed?

 Image credit: CIA World Factbook, via Wikimedia Commons

˜

I tell myself that our planet is not that big.  Daily we are in contact with people right around the globe.  It seems no different from communicating with someone just down the street.  But tomorrow I set forth on a journey of over 12,000 miles (18,600 kilometres for those of us on metrics), flying from New Zealand to England.

My earlier post, …And She Flew told of the adventure I am heading off on, and asked fellow Fibromyalgia sufferers to share any tips they might have for managing travelling.  I didn’t quite get the flurry of advice I hoped for, and that only suggests one thing.  Most Fibro sufferers know better than to fly for 31 hours half way around the planet.

Never mind.  I’m not put off.  This is one of those times in life where I know I could choose the safe, painless, no-risk approach of staying at home.  The problem when I do that is that I miss out on something wonderful. Not to mention someone wonderful.

I’ve been playing it safe for a long time.  When I started blogging just over a year ago, I admit I would have laughed hysterically if you had told me that I would meet a fellow blogger, fall in love, and now be taking off on this trip.  It was the last thing on my mind.  I simply wouldn’t have believed that I would had changed sufficiently, for the good, to be doing this.

For twenty years now I have been battling mental illness, and flying around the world was certainly not one of the things I would have considered doing, let alone been in a state well enough to do it.  What’s more, when I left my marriage fifteen years ago I very firmly decided that I’d had enough of relationships.  I had proven to myself (and anyone watching) that I just wasn’t made for relationships.  I was much better off on my own.  And so that’s what I did.

My therapist is quietly sniggering to himself now (in a nice way) as he remembers some of my first words to him which were along those lines.  I didn’t need anyone, and I simply wasn’t going to go there… ever.

Simple.  Just close down the hatches and keep away from any situation that might lead to an intimate relationship.  It’s easy if you are choosing also to cut yourself off from the world (because the world hurt me too much).  I had what I needed.  I had my cat, my teddy bear and… well actually, that was about it.

I wasn’t someone sitting at home, with the cat and the teddy bear, wishing for a relationship either.  I was happy being single… but perhaps only because I was too scared of confronting myself and my needs, if I let another person get close.

So now I have let another person get close, and actually it feels good.  Actually it’s worth the risk to get on a plane and fly half way around the planet.  It blows me away how much can change when I learn to take things one day at a time, when I find the will inside of me to trust another person, and most importantly learn to trust myself for perhaps the first time in my life.

♦

“So we shall let the reader answer this question for himself: who is the happier man, he who has braved the storm of life and lived or he who has stayed securely on shore and merely existed?” 

―    Hunter S. Thompson

♦

“Risk anything! Care no more for the opinion of others … Do the hardest thing on earth for you. Act for yourself.”

―    Katherine Mansfield,
Journal of Katherine Mansfield (14 October 1922)

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Coming Out

If your first thought is that this post is going to be about either my sexuality, or someone elses, you’d be forgiven. Coming out used to be about being presented to society, and more recently it’s been about coming out of the closet. Usually the gay closet. I’m not about to do either of these but coming out is something that I’ve been thinking about in terms of mental illness.

Lately I’ve been reading a number of blogs and articles about the stigma of mental illness, and more specifically the stigma of Borderline Personality Disorder (BPD). And each time I’ve finished feeling a little frustrated, like we haven’t quite hit the nail on the head yet in addressing this problem.

That’s why I started thinking about the way in which sexuality, and more specifically, different kinds of sexuality have been moving toward a more acceptable space in society. I know that there is a long way to go yet for the LGBT movement, to enable all people to feel able to be who they are without being stigmatized. I look forward to the day when we all accept people for who they are.

Image credit: Hugh Young

It’s got me thinking. Head back nearly 30 years ago, in New Zealand there was massive reform going on to see homosexuality legalised in 1986. It was a huge reform which saw many protests and arguments. Actually it was much along the lines of the Marriage Equality legislation that is currently being debated in many countries (including New Zealand).

As a young, (I was 21) heterosexual I could have chosen to ignore the 1980′s reform. At the time I was very involved in a Christian church (as I had been all my life) where homosexuality was frowned upon.  Actually ‘frowned’ is not that word.  It was regarded as wrong, and as a sin.

For me though, at the time I was working in an office where my boss was an openly gay man, and a co-worker was openly transsexual. It gave me a completely different view-point than the middle-class, Christian upbringing I had.  At that time, to be open about your sexuality was a big thing.  Not only were my workmates going against the norm, they were also going against the law.

I have to admit that it wasn’t until I knew those people who I realised that actually we are all the same and that no one deserves to be judged by another.  At 21, I came to the conclusion that if they weren’t hurting anyone then why should they not be able to live freely the life they chose?  I accordingly voted for homosexual law reform.

What has this got to do with mental illness?  It strikes me that those of us who have mental illness need to ‘come out’ too.  I know only too well that when we’re dealing with mental illness, we’ve got more than enough to think about let alone taking on activism.  But it seems to me that it is exactly what had to happen (and still happens) for those of a sexuality other than heterosexuality.  They had to come out in order to see change happen in our society.  Maybe it’s not fair, but no one can deny that coming out has helped open society to different realities.

Image credit: GO LIME Awareness for Mental Health (GLAMH)

Maybe it shouldn’t have been the responsibility of the LGBT movement to change the thinking of society.  In an ideal world, I’d go so far as to suggest as this should have been a responsibility of all human beings.  The thing is though, that the LGBT movement were the one’s who had a vested interest in getting laws and attitudes changed.

In the same way it is those of us with mental illnesses who have the vested interest in seeing the end of the stigma of mental illness.  It seems to me that I will directly benefit if there is more openness and acceptance of mental illness in society.  For my neighbours who don’t have a mental illness the benefit is indirect.

I’d like to think that everyone in society would want this, but the reality is that there isn’t the same obvious benefit for them, as there is for me.  They’re not the one’s who have to think carefully who they admit their mental illness to.  I do though, and in that respect I am little different from my transsexual work-mate of 30 years ago.

I believe we have a choice.  We can sit and wait, hoping that one day society will magically change its attitude to mental illness.  Or we can think about speaking up.  Coming out about our mental illness.  Because the more people who realise that they have a friend, neighbour, family member or work-mate with a mental illness, the more acceptable it will become.

It doesn’t need to be a big deal.  I don’t think we need to list off all our diagnoses.  Actually I believe that would be as off putting as if we listed off everything that was physically wrong.  We just need to let people know that mental illness is exists, and is not the scary thing society has thought it to be. If we can admit to our friends that we have, say diabetes, then why not mental illness?  This is exactly what the LGBT movement has done… shown that different sexualities are actually normal.

I don’t for one moment think that this is an easy ask.  There is a lot at stake.  I’ve simply come to the conclusion that I can’t just sit and wait, hoping that one day things will change.  It’s not going to magically happen.  But if each person takes a small step, as the LGBT people have done over years, and as other minority groups have also done in the past, then we start to make a difference.

♦

“We learned three crucial lessons from LGBT activists: We had to build a movement. We couldn’t be afraid to challenge our friends in power. And we had to give our cause a human face.”

 - Frank Sharry,  America’s Voice

♦

“We have got some very big problems confronting us and let us not make any mistake about it, human history in the future is fraught with tragedy … It’s only through people making a stand against that tragedy and being doggedly optimistic that we are going to win through. If you look at the plight of the human race it could well tip you into despair, so you have to be very strong.” 

―    Robert James Brown

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• How did we build an immigrant movement? We learned from gay rights advocates. (washingtonpost.com)
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A Revelation… About Recovery From Self Harm

NB.:  There are no images of self harm in this post.

It was about a year ago when a friend, who had previously engaged in regular self harm, told me she had a revelation that would bring an end to her self harm behaviours.  I was really pleased for her because I knew it had been a hard battle for her to overcome.  It always is.  If you think it’s as easy as throwing away your blades, you’re very mistaken.  It is so difficult to break that pattern of abusing your body, hating yourself that much and for many, to also break the addiction that it becomes.

I was really happy that she had found a reason to stop.  I knew well enough that anyone else’s reasons were not enough, but that if she had found a reason for herself, then she had a good chance of breaking the hold self harm had over her.

At the time, I was on my own path to recovery from years of self harming in a number of ways.  I admit that I didn’t have any such profound revelation, and even though I could tell her’s was going to work I knew that at that point, her reason wouldn’t be enough for me.  And that made me a little sad.

I was simply taking it one day at a time.  A significant motivation for me to choose healthier coping mechanisms than self harm came from wanting to set an example.  At the time I was running an on-line peer support group for people recovering from self harm, and I wanted to demonstrate that recovery was possible (even when I was only a few steps ahead of most in the group).

It’s now well over a year since I last self harmed.  I haven’t been one of those people who counted the days and weeks self-harm free.  I simply kept going, and hoped I could keep going in my resolve to be free of self harm.

It hasn’t been easy.  While I have got past the point where it was an almost automatic response to a bad situation, there have definitely been times when I’ve wanted to reach for that blade, or starve myself… or any number of ways I used to use to cope.  I admit that I can still see the attraction and seductiveness of self harm, but I also know that I have beaten the urges sufficiently to believe I can keep choosing healthier options.

I have just finished reading Keira Van Gelder’s book ‘The Buddha and the Borderline’, about her recovery from Borderline Personality Disorder (BPD).  In the last part of the book, she discusses her adoption of a Buddhist lifestyle.  Something she highlighted was that if she wouldn’t harm another person, then why would she harm herself.

It made me think.  Would I take a razor blade to another person?  No.  Would I take a razor blade to an animal?  No.  Would I deliberately starve another being?  Absolutely not.  The questions go on, and the answer is always no.  I would never seek to harm another being.  Perhaps if I look at myself as being just like another being then I can choose not to harm myself.

A year ago, while I was happy for my friend (when she used this same reasoning), I wasn’t at a point where I could use this means of thinking as a way to stop my self harm.  But now, I think I can.  Now I intend to use this as my reasoning for choosing not to harm myself any more.

I’m human, and I’m not infallible.  I know well that there may still be times when I want to self harm and so I need a strategy to enable me to say ‘no‘.  This seems like a good one for me.  Compassion is something important to me, but I have failed to extend that compassion to myself.  It’s time to include myself in that choice to not harm others.  It’s time to value myself, value my body and to keep saying ‘no’.  To make a conscious decision to treat myself with respect and compassion.

♦

“You’d be surprised how easy some things can be, things you never thought you’d do, when you take self-respect out of the equation.” 

―    Sarah Addison Allen

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It’s All In Your Head!

What are we so afraid of?  Why does being told ‘it’s all in your head’ fill us with terror and completely write off any sense of being validated as a patient in need of help?

My view is that it’s all about the stigma of mental illness.  Somehow we’ve interpreted the message ‘it’s all in your head’ to mean ‘it’s not real’.  And we’ve done that for very good reasons.

I recently read an article about some work being done in understanding Gulf War Syndrome, which has many symptoms similar to fibromyalgia.  They have found that there is clear evidence of brain damage in sufferers, and one of the hopes is that in developing a test (a fMRI) to diagnosis the illness, it will lead onto the more accurate diagnosis of Fibro and Chronic Fatigue Syndrome.

Here’s a quote from that article:

“Many veterans have had difficulties getting benefits and treatment for a service-connected condition because doctors assumed they were either faking it or suffering from post-traumatic stress. “That’s a problem with all physicians — VA, military or civilian,” Baraniuk said. “If it doesn’t fall within their small world of known diseases, then the patient is nuts.”

It’s actually the same with Fibro (and I assume, Chronic Fatigue Syndrome), that patients are sometimes thought to be faking their symptoms, or somehow worse still, thought to be psychologically based… and therefore assumed to be somehow not real.

Maybe I have an advantage because I have both mental illnesses and physical illnesses.  I haven’t seen it as an advantage until now but it must be because I know that mental illnesses are real.  That means that I also know that if a doctor sees fit to tell me my physical illness is psychologically based, then I know that their opinion doesn’t remove my symptoms, and therefore my suffering, being real.

My Borderline Personality Disorder (BPD) is real.  The Anorexia I struggled with for years was real.  The Depression was real.  The Post Traumatic Stress Disorder (PTSD) was even real.

They were also ‘all in my head’.  They were all psychologically based, although some of them also affected me physically too.  No one could realistically deny that I was suffering, or that I needed real help to either fight, or manage these conditions.

To add to that, there were very real physical consequences to some of those illnesses.  For example, it is difficult not to accept that Anorexia, as well as being a mental illness, has profound effects on the body which need to be medically treated.  The fact that it is a mental illness does not take away the doctor’s need to treat the patient medically.

If those conditions that I have had or currently still live with, can be identified as psychological but still be treated, then does it really matter whether my fibro is seen as a psychological or a physical illness?  Personally, I don’t think so.  The symptoms are still there, as is my suffering.  Is it ‘all in my head’, or in some other part of my body?  In terms of how it is treated there maybe a considerable difference, but there isn’t a difference in terms of my very real need for help.

My opinion is that the problem with issues addressed by the quote above does not lie with the veterans who are suffering.  The problem is with the medical professional who deem it fit to view that something isn’t real if it is psychological.  Either way the patients with symptoms need help, but it seems too easy for doctors to cast someone aside because their symptoms are from a particular basis.

Even if the doctor wishes to put symptoms down to ‘attention seeking’, my view is that there is still a need for that person to be treated.  Maybe treated differently, but the person still needs help.  Right now it seems that a seeming psychological cause, let alone fake, is simply dismissed often.  That is so wrong.

I actually had a similar issue to this problem a few weeks back with the medical specialist who monitors the auto-immune condition I have called Graves’ Disease.  Graves’ Disease affects a number of parts of the body but primarily the thyroid gland, leading to hyperthyroidism and eventually something called thyrotoxicosis (when levels get toxic and life threatening).

My endocrinologist examined my blood results which indicated that my thyroid levels are currently in a safe range.  The problem for me (and I’d like to think it had been for her too) is that sitting in front of her, I had many of the symptoms of thyrotoxicosis. I can tell you that those symptoms were not pleasant and I was hoping that she would help me to address some of them.  I could accept that the blood tests suggested I wasn’t dying, but I was definitely suffering.

Interestingly she was seemingly interested in helping me to alleviate the symptoms until she went to check my case with her supervisor.  Then she came back and told me that because the blood results were fine, there was nothing that needed to be done.  I was shown the door, and actually later I found she had then formally discharged from the Thyroid specialist service I had been under for several years.

My point is that I was still suffering, but she wasn’t interested.  There’s something wrong when doctors dismiss patients when there is clear evidence of suffering.  Just like the Gulf War veterans.  There is suffering, and whether it is faked, ‘all in the head’, Post-Traumatic stress, or clear sign of physical brain damage (as the fMRI will detect)…  there is a patient who is suffering, who has lost quality of life…  and needs help.

I think it’s sad that the general view is that if something is ‘all in your head’ that somehow the pain and suffering is not real and does not need treatment.  Somehow we need to move away from that view because while it remains, it increases the stigma of mental illness because that too, is seen as not real.  It also increases the likelihood that people won’t seek help when they need it.

But as well as the general population view on this, I am convinced that it is medical professionals that need to lead the way in change.  What they have in front of them is a patient who needs help.  That’s actually what matters.

PS.   There is evidence that the situation with my Graves’ Disease is actually quite common, where the blood results indicate everything is ‘normal’ but the patient reports a very different reality in terms of symptoms.  I’m not aware of a substantiated reason for this though.  Unfortunately many health professionals choose to deny the existence of such an anomaly and so patients end up going without the help they may need.

♦

“Each patient carries his own doctor inside him.” 

―    Norman Cousins,    Anatomy Of An Illness

♦

“A doctor, like anyone else who has to deal with human beings, each of them unique, cannot be a scientist; he is either, like the surgeon, a craftsman, or, like the physician and the psychologist, an artist. This means that in order to be a good doctor a man must also have a good character, that is to say, whatever weaknesses and foibles he may have, he must love his fellow human beings in the concrete and desire their good before his own.”

Auden, W. H.

Related articles

• Researchers tie Gulf War illness to brain damage (usatoday.com)
• The Black Mark Against Mental Illness  (infinitesadnessorhope.wordpress.com)
• What My Doctor Won’t Tell Me (infinitesadnessorhope.wordpress.com)
• Brain Changes Could Contribute to Gulf War Illness: Study (news.health.com)
• Researchers tie Gulf War illness to brain damage (usatoday.com)
• Researchers find Gulf War Syndrome is a real illness (fellowshipofminds.wordpress.com)

Don’t You Hate It When…?

It’s bad enough when you miss the birthday of someone close to you, but worse? When you miss your own birthday.

Yes, 7 March was my 1st blog birthday… and I missed it. I’m going to forgive myself though. It’s been one of those weeks. Actually it’s been worse than just one of those weeks, and when I look back it really doesn’t surprise me that I missed it.

So Happy Birthday, me… or at least Infinite Sadness… or hope?

If you want to know what I’ve been doing over the past year, there are 211 posts to choose from. More recent?  Read on.

I guess I’ve learnt lots in the past 10 days.  I wish there had been an easier, less painful (in more ways than one) ways to learn, but so often it seems I have to put myself through hell before I get the message.  Have I got the message yet?  Well, I’ve got some messages but I’m sure there is still more to gain from it all.

When I wrote The Black Mark Against Mental Illness a while ago, I wrote about the stigma of mental illness that people with fibromyalgia seem to both experience, and perhaps contribute to.  At that time I found that there was a big voice from fibro sufferers who were not willing to accept that there is an emotional and psychological aspect to fibro.  In my reading I found they were adamant that fibro is a solely physical illness and that the psychological realm just doesn’t come into it.  “This is not all in my head” was something I read over and over.

I disagree.  Should I say that I disagree as far as my own fibro is concerned.

I know full well that my emotional and psychological well-being has a direct impact on my physical health, particularly in terms of my fibro symptoms.  Disagree if you like, but the issue of whether fibro is ‘all in my head’ has direct relevance.  I wouldn’t go so far as to say all, but what goes on in my head definitely affects my fibro symptoms.  If your fibro doesn’t work that way, then I say lucky you.

This doesn’t at all mean that my fibro is not important.  It doesn’t mean that my suffering is not real.  It doesn’t mean that I don’t need doctors to take me seriously. Those symptoms still exist, but now I have some understanding of perhaps why I suffer more on some days than others.  For that fact, I am happy to accept that fibro, for me, is connected to my mental well-being.  I hasten to add thought, that isn’t the whole story.  I’m sure there are physiological issues going on too.  It is after all, a complex illness.

This past week has seen some big stressors in my life, most of which I am unable to go into the detail of out of respect for others.  Put it like this though, when I stood up for something I strongly believed in and got some serious opposition from people who matter a great deal to me?  Within hours, my body started to react with pain.  That night I could actually feel the pain growing up my body, and at that point was helpless to do much about it, other than prepare for the worst.  It was bad enough that I was emotionally upset by an argument, but now my body was reacting too.

The stress of the week continued with me trying to support and help someone else close to me, who really didn’t want to accept the help.  An independent person, it was too hard for her to accept help that she probably needed.  The crazy thing was that by now I was getting out of my bed to go support her, only returning home to climb back into bed.  Yeah, that is crazy isn’t it?

And even crazier?  In looking back actually, I suspect I was sicker than the person I was trying to help.  But as I ran around after her, I was frustrated that she couldn’t see I was sick.  What was I expecting?  Was she meant to be a mind reader?  I was setting myself up to be further stressed.

Ten days of this has done nothing for my fibro symptoms.  It also hasn’t helped my auto-immune symptoms which seem to be springing to life the more I go on.   My specialist told me this week that all of my symptoms are too many to indicate exactly to her what is going on in my body, and that I would just have to live with it.  At least until I return from England, anyway.

I didn’t really appreciate her “just live with it” approach but I am inclined to wonder whether the psychological stress I have been under is not also playing a part in my Graves’ symptoms.  I think it’s time to go back to bed.

As I wrote yesterday, in Invisibility, I was feeling invisible to so many people in my life, perhaps mostly because it seemed like no one had any comprehension of how sick I was feeling.  That’s not entirely accurate because I know there were friends who had some idea, but it is the reality of what I felt.  Apart from hanging a sign around my neck pronouncing me ‘sick and stressed’, what exactly was I expecting?

That’s why I realised that I needed to stop being invisible to me.  I need to listen to my body, and my mind.  It actually doesn’t matter that it was my blog birthday this week, and I missed it.  And if someone really wants to refuse the support I have offered, why do I fight it?  Just go back to bed.  Or better still, don’t get out of bed… until I’m ready (and my body is ready).

As for standing up for things I believe in, that hurts, but I’m not going to stop doing it.  It’s part of who I am.  Just as part of who I am is accepting that it’s not just my mind that reacts to external stressors.  My body does too.  Right now I’m stuck with that, so the sooner I accept it and adapt my life to allow for it, the better.  There is so much more important than a blog birthday.  Maybe I’ll do that one next year.

♦

“Our minds are susceptible to the influence of external voices telling us what we require to be satisfied, voices that may drown out the faint sounds emitted by our souls and distract us from the careful, arduous task of accurately naming our priorities.” 

―    Alain de Botton,    Status Anxiety

Related articles

• The Black Mark Against Mental Illness (infinitesadnessorhope.wordpress.com)
• Invisibility (infinitesadnessorhope.wordpress.com)

Invisiblity

I started this post a while back now and like many things at the moment, I just never finished. The good thing about that is that it has given me time to think and reflect. What’s really going on here?

I have got the distinct feeling that I am invisible.  I could have got a role in Harry Potter or similar, because somehow it seems that while I think I’m there in reality, I’m not there at all.  I am invisible to all those around me.

A visit to my doctor (my GP) was the start of all this a couple of weeks ago.  He was seemingly uninterested in my reality.  While I talked of having trouble getting to sleep because of pain, all he was interested in was that I was apparently using too many sleeping medications.  I wondered why he couldn’t take interest in my pain.  I wanted him to ask about the type of pain I was experiencing, and how bad it was for me.  In over a year of having a chronic pain condition he hasn’t once asked me to describe my pain.  That seems odd to me.  Maybe he could suggest some ways of managing it.  But as usual, there was no apparent interest.  I guess his bigger interest was getting me out of his office so he could move onto the next person.  So I left, invisible…

My mother has been in hospital over the past couple of weeks, and somehow I have turned into her next of kin.  The night of her operation the hospital staff rang me to ask if I would come into her during the night if she continued to be confused (a side effects of her anaesthetic).  I felt I had little option but to say yes.

Actually I find going out at night difficult.  I guess you could say I am a little ‘scared’ of the dark, so the idea of driving across town in the middle of the night was daunting.  It also meant that I would have to go without my night-time medication, because I would never to drive.  That was all okay except that no one was actually interested in how I felt, and how I would cope if I had to do this.  Invisible again, this time in favour of my mother’s needs and the hospital’s needs.

As the week went on, there were more and more demands on me.  And that’s okay, because my mother was not well and needed my support.  I guess it just felt like it would be nice if my needs mattered somehow, somewhere.  Instead I was just a daughter, serving a purpose.

At the same time as this, I have been reading a very good book about Borderline Personality Disorder (BPD) called The Buddha and the Borderline by Kiera Van Gelder.  One of the things I have picked up in reading this book is the Borderline’s tendency to all too easily feel abandoned.  The lack of a stable sense of self see us take all these things as a kind of rejection of us.

When those I am in relationship with have other priorities, or simply can not be there when I need them, I think that I have lost that relationship.  They have abandoned me.  And so when I am not the priority in my mother’s care, I also feel like no one cares about my needs.

I can choose to go down the track of believing that I am invisible and that no one is there for me.  I can choose to believe that the relationship is gone, simply because I can’t always come first.

Or, I can recognise this as Borderline thinking.  I can tell myself it’s not necessary to think my world has ended because I feel invisible.  Even as I write this I can see that is an extremist view, as well as one that will destroy me if I let it.

I am not invisible.  Sometimes I might need to remember my own needs so that they don’t get lost in other’s needs, but it doesn’t mean that my needs are not important.

If that sounds easy, it’s not.  Especially for a Borderline.  We are constantly trying to hold onto a shaky sense of self, and we have to work hard to see ourselves, rather than believe we are invisible.  Even if others don’t have the ability to give my needs priority, I can work on doing that for myself.

It doesn’t mean I get walked on, or ignored.  It’s just that I recognise that it’s okay for me to put my needs first, even if other’s don’t, or can’t.  A Borderline is likely to tell you that they can’t do that, but I am one who is determined to find a way.  I’m not going to give into my Borderline insecurities.  It might be the natural response for me, but it doesn’t have to be the way.

I remember in psychology lectures at University, object permanence was discussed.  At a certain stage of human development we learn that even though we can’t see something, doesn’t mean it no longer exists.  It’s something that I need to remember in my relationships with others.

Even if they can’t, or won’t be there for me, doesn’t mean they don’t still love me, or care for my needs.  Maybe just for now, I need to take care of my own needs.

♦

“When you stop expecting people to be perfect, you can like them for who they are.” 

―    Donald Miller,    A Million Miles in a Thousand Years: What
I Learned While Editing My Life

Where Is My God When It Hurts?

Last week I wrote about struggling to find hope in the midst of the chronic pain and fatigue of  fibromyalgia (see Fatigued Hope). I admit I’m still battling this one. I don’t think there is a simple answer, yet I am frustrated by having previously written about hope, but not being able to find it to apply in this situation.

A number of people commented, in relation to that post, that I should perhaps look to my spiritual beliefs. Hence my question: where is my God when it hurts? The question is phrased as it is because I believe that spirituality is an individual thing, and as such where your God is when I hurt is not actually of much significance to me. It is in terms of how you might find comfort in your trials, but for me personally, it only about my perception of who my God, or higher power, or whatever I like to call it, is for me.

When I google the question ‘Where is God when it hurts?‘ I find that Google kindly has about 95 million responses for me including a book title, by that name, by a Philip Yancey… which I’m sure my father owned.  I suspect I would have come across it as I dealt with Dad’s enormous collection of books after his death.  Maybe I should have stopped to read it, although I would have been there forever if I had taken that approach to every book that caught my eye.

Quite frankly the answer to all my questions was probably in my garden shed (that’s where Dad kept his library), or maybe I could say right under my nose.  What’s more, if my father had been alive, he would have been quick to answer my question for me.  He was, after all a Christian minister, well versed in theology and my blief in God is based on the Christian god figure (although not some of the organisational aspects of churches).  But even if he had been here, that would have been his answer, not mine.  And I suspect I would have been still wondering.

The reality I learnt long ago is that other people’s views on spirituality actually don’t answer my questions.  They might provide the answers for them, but I have to find my own answers.  So I’m not even going to bother with Google’s suggestions, or what I know would have been Dad’s.

I believe that religion  serves a different purpose for each person.  Nothing is right or wrong, as we are each different people with different needs.  My own beliefs form a basis for how I treat other people, and I think I’m slowly forming a means of how I treat myself.

Translating that into hope in spite of trials is not something I have yet achieved.  Oh, I was trained well and can quote a million Bible verses at myself about having hope and trust in the God I was brought up to know, but that doesn’t actually cut it for me in terms of finding purpose in my suffering.

I find it incredibly frustrating when I am told that everything happens for a reason.  Maybe it’s true, maybe it isn’t, but it seems an incredibly cold way of comprehending, and giving reason to why some people suffer so much.

This posted started in terms of my own struggle with pain and fatigue.  I know that it is nothing compared to what some people suffer each day, and actually in that I can find a little peace for myself.  I can be thankful for what I have and have not.  But I will find it incrediblyy annoying and frustrating if you tell me to find joy in my pain, just because my Bible tells me to.  It just doesn’t work that way for me.

A book that I have found useful over the years, mostly to dive in and out of because I have yet to read it cover to cover, is Harold Kushner’s When Bad Things Happen To Good People.  I like this book because it is written by someone who has had plenty of bad things happen.  He knows suffering yet he still somehow believes in who he sees as God.  Here is an excerpt:

“I have to believe,” one friend said, “that everything that happens in life, happens for a purpose.  Somehow or other, everything that happens to us is meant for our good.  Look at it this way.  You were a pretty cocky guy, popular with girls, flashy cars, confident you were going to make a lot of money.  You never really took time to worry about the people who couldn’t keep up with you.  Maybe this is God’s way of teaching you a lesson, making you more thoughtful, more sensitive to others.  Maybe this is God’s way of purging you of pride and arrogance, and thinking about how you were going to be a success.  It’s his way of making you a better, more sensitive person.”

 Harold Kushner - When Bad Things Happen To Good People  (p. 30,31)

It’s a pretty common way of thinking.  Suffering is God’s way of teaching us a lesson and making me a better person.  Me?  I hate it when I am told that.  Everything in me gets angry because I think things like ‘What was wrong with me before?‘ and ‘Why do I get this lesson in suffering when others get off scot-free?‘.  Oh, and,‘Why does God hate me so much?’

That frame of thinking is easily said to another person (sadly) but for me it makes God into a hateful , hurtful and vengeful god.  And that’s not who my God is.  My God doesn’t want me to be hurt, and has great compassion for me and all others.  If it works for you, that’s great but it doesn’t work for me.

Having said that, I know what doesn’t fit for me but I still have no answers in terms of needing to find hope in chronic illness.  I still need to find some purpose to it, and I still need to find a way of accepting it as my reality.  Some years ago I came to the point where I could accept my mental illness.  It’s not that I liked it, but I could accept that it is part of me and what makes me who I am.  I can even see some purpose to it in terms of sharing my experiences hopefully in a way that will encourage others.

But accepting the physical illness is not easy for me.  I’m struggling to find purpose in day after day of pain and fatigue.  I struggle to live with it because my life becomes so impaired by it.  I also struggle with the invisible nature of it, which means that people around me assume and expect me to do more than I am physically capable of.  Yet I want to be able to do those things.  I don’t want to be so limited, but I also need compassion from people.  If I accept these illnesses and the chronic nature of them, I feel like I am giving in to them.  I don’t want to do that.

So where is my God when it hurts?  Actually I’m not sure.  Quote the Bible at me, and it will leave me cold.  I know all that in my head, but my heart struggles to find personal purpose and hope.  I admire people who are able to take their faith and apply it to their current situation, but right now that isn’t working for me.  I guess I’m still a work in progress, and I hope my God treats me gently.

I finish with something my mother used to say to me when I was young.  I had no idea what it meant, but somehow it’s still stuck in my mind.  She just used to quote the first part.

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.

 - 1 Corinthians 13:12  – King James Version

Related articles

• Fatigued Hope (infinitesadnessorhope.wordpress.com)