Prescriptions And Privacy

About a month ago I saw my doctor, a General Practitioner.  It was just a routine appointment, although it quickly went from routine to fascinating when he said he had been wanting to talk to me.  The result was that after two long years of debating with him my need for adequate pain medication, he finally agreed to prescribe some.

He had previously refused, in spite of acknowledging the level of pain I was experiencing from fibromyalgia, because he believed that my history of mental illness would mean that I would get addicted to the stuff and my mental health would suffer.  One of my arguments was that my mental health was suffering already as a result of the pain I was in on a daily basis.  For some reason unknown to me that argument seemed to count for nothing to him.  It seemed that he didn’t accept it and so was only prepared to let me use over-the-counter medications.  The problem with those is that they did nothing to relieve the pain, perhaps because they are designed to treat a different kind of pain.  Our argument went on over the months.  When I felt I had some fight in me I would raise the issue, but basically he was quite clear that he would never prescribe anything stronger and more appropriate.

Let me say at this point (in case you’re wondering) the easy thing to do would have been to change my doctor.  For me though, that has some difficulties related to my past experiences of doctors.  More about that in a future post… when I’m feeling brave.

In the meantime, what changed my doctor’s mind?  It seems he felt a little backed into a corner.  At an earlier appointment he had arranged for me to have some short-term counselling to deal with a specific unrelated issue that had been affecting my state of mind.  It was only to be six sessions, which always seemed too short, but it was free and it was available.  I had no other options and so I took up the offer.

I had seen the counsellor twice when I went to my doctor a month ago.  That was what my doctor wanted to talk about.  He proceeded to read out to me word-for-word something I had said to the counsellor, on my second visit, about my doctor’s refusal to treat me with pain medication.  I was totally gobsmacked to find that the counsellor was giving my doctor a written report of my counselling sessions.  This was not something I had been told about, nor had I given permission for him to share the details of my sessions with anyone.

That was the end of the counselling sessions.  I guard my privacy carefully and I expect that when speaking to a counsellor or therapist that what I say will remain confidential.  I accept that if I am at risk of hurting either myself or someone else then the counsellor may have to call in emergency services but I could never accept that my doctor needed to hear word-for-word what I said when I was no where near being in a crisis state.

Well that might have been the end of the counselling, but for some reason (he didn’t explain) my doctor didn’t appreciate what I had said to the counsellor, gave me a small lecture about “keeping secrets from him”  (really?) and then handed me a prescription for medication to treat severe pain.  Weird.  It’s like he knew he was discriminating against me and was waiting to see how long he could get away with it.

I finally had my prescription!  Yay!  The only problem is that a month on I declare it totally useless for me.  If my body is anywhere close to horizontal, the medication will put me to sleep (which is one way of dealing with pain) but it does absolutely nothing to take away the pain.  Actually if anything the pain has been worse in the past couple of weeks.  I wonder is he just giving me sugar pills (unlikely, I hope) or just a very small dose?  This coming week I will be going back to my doctor to keep fighting.  I have tried that drug but now I need another.  The fight goes on.

Gotta love doctors (and counsellors) like him.

“Life isn’t as magical here, and you’re not the only one who feels like you don’t belong, or that it’s better somewhere else. But there ARE things worth living for. And the best part is you never know what’s going to happen next.” 

― O.R. Melling, The Summer King

Lost For Words

It’s been a while… well, it has been a while for me since I wrote.  In my last post, I commented that I thought I had turned a corner, and I firmly believe that in that I have gained a whole lot of peace that has been missing from my life for months.  It doesn’t mean all the hurts are healed by any means, but it does mean that I can start to move forward.

That said, I stopped writing because I have simply been lost for words.  I still am, but I’m trying to pull a few words together because for some people I owe them an explanation for my silence and absence.  I know that I’m not doing a good job as a friend right now, because I guess I have cut myself off and withdrawn into my own world.  There are a number of reasons for that, some of which I have a better understanding of than others.

Firstly, fibromyalgia.  One of the symptoms of my fibro is my inability to recall the words I want to use in conversation.  It applies to writing too but it simply takes longer, but for a conversation I am constantly struggling to come up with the words I want.  There is a technical name for that, but I admit I can’t for the life of me remember.  Ironic, isn’t it?  But it’s just a label.  It’s also something that is common for fibro sufferers although everyone’s symptoms are different, and so not everyone will struggle with it.

It is good when I have someone with me who knows me well.  They can help me find the words I want, but usually I just look, and sound like I’m old before my time and my memory has gone, or just completely dumb.  My memory hasn’t gone, and I’m not dumb.  It’s simply about the brain processing information.

I admit that I get frustrated with it when it is particularly bad, and so I withdraw.  Any form of communication becomes frustrating.  It’s easier just to not go there.

But there’s another reason for my withdrawal, one which I don’t fully understand but that I’ve seen myself go through before.  This past year has seen a lot of hurt for me.  I haven’t been treated as well as I would like at times, and because of it, I have struggled to trust.  The more I got hurt, the more I withdrew because I simply didn’t want to be hurt again.

It gets out of control when I don’t know who to trust, even my close friends.  When the scared part of me shuts them out, as I have done, I know that I’m in problems.  It’s just that acknowledging the problem is one thing, but changing the behaviour is another.  It’s not that I don’t trust my friends, but it’s more that I don’t trust the world as a whole, and my friends get caught in the way.  I’m sorry.

I have written in the past about Ted (see Real), and in this situation he becomes all that I trust.  He becomes my world because I know he won’t hurt me.  I said to myself a few months back that I wasn’t ever going to write about Ted again because the risk I took in my honesty about a very vulnerable part of my life was abused.  But if you don’t get anything to do with Ted, then you won’t get me.  Ted is, in part imaginary, as well as in part real.  It’s confusing, I know.  Over a long period of time he has been my way of coping with the world.  When the world gets too much, I withdraw back to him.

Withdrawn is not a place I want to stay but if you haven’t heard from me, if I haven’t replied to messages, if I haven’t commented on your posts… this is why.  I’m trying to learn to be a part of the world, a human, a trusting human again.  I have got some peace, but now I need trust.  Please bear with me in the meantime.

“If ever there is tomorrow when we’re not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart… I’ll always be with you.” 

― A.A. Milne

  • Real (infinitesadnessorhope.wordpress.com)

Something Better Than Today

Every few months I get a little bit desperate.

The pain and fatigue of fibromyalgia gets too much, and even more so, does my inability to access adequate medication to treat it.

I know I should just stay away from Google and search engines.  They are often up to no good.

But as I said, I’m a little bit desperate…

…and so anything will do (almost).

Don’t worry though, as I am still a little bit careful about what I read on the internet about fibro (and anything else).

As I say though, I’m a little bit desperate… again.

Sometimes things we already know, come off the screen at us and we feel the shock of reality all over again.  This time I was reading about the use of medicinal marijuana to treat pain, something I have had recommended to me many times, from many different places.

This is what I read (first paragraph on the page):

Fibromyalgia, a chronic pain syndrome, is hard to treat and impossible to cure. With pain so debilitating, patients may wonder about trying medical marijuana to ease their discomfort.”(1.)

I knew everything contained in those two sentences but that “impossible to cure” hit me hard.  I had heard “there is no cure” at the time I was diagnosed, but I guess I hadn’t really heard it.  I knew it, but I hadn’t really taken it on board.  This time I did.  Ouch!  It hurt.

Why?  Because my options look slim, and while fibro is not going to kill me, it does kill my ambitions and dreams for the rest of my life, when I can’t find some form of treatment that will enable me to manage my symptoms.

I want to be working again.  I want to use the skills I’ve have, and have purposeful employment that can give me a sense of achievement.  I’d even like to earn some money doing it.  Being flat broke isn’t easy.  I don’t actually want to be reliant on welfare handouts for my existence.

It’s not my mental illness that is stopping this from happening, but the fibro, and my inability to get relief from the ongoing symptoms.  I can’t even say “well, I’ll work two days a week” because I have no idea which two days in a week I would be able to do the job.  I don’t know from one day to the next, how I will be, and whether I will be able to work.  No employer in their right mind would take me on.

There are lots of possibilities for alternate ways to treat fibro, but that’s not what this post is about, except to say that most alternatives are expensive and beyond my budget, or interfere with my current prescribed medicine regime (for my mental illness).

This post is about something that I’ve been struggling with for a while, and was part of the reason I chose last week to stop blogging for a while.  It is that lack of hope.  It is realising that this isn’t something for six months, or even a few years. This is impossible to cure (and it’s not just WebMD who say this).

Regardless of whether we’re talking physical or mental illness, who of us doesn’t want to be able to have a realistic hope for the future?  No matter what it is.  Just something that is better than where we are today?  Maybe it’s being able to get out of the house without panic, or maybe working part-time?  Maybe pursuing an interest beyond ourselves?  Maybe achieving some long held goals?

Maybe all of that is too hard right now, and that’s ok.  I spent many years not being able to see beyond each day.  But is it fair to say that we want something better than today?

That’s all I want  Something better than today.  For the past week I have had a rough run with fibro symptoms.  I’ve spent most of my time in bed, with sleep (if I could get it) the only escape from pain.  I don’t want that for the rest of my life, and that doesn’t seem unreasonable.

Unfortunately that seems to be exactly what my doctor is happy with for me for the rest of my life.  Easy for him to say.  He’s not the one living this life.  I know that means I need to get serious about finding another doctor, because I want hope.  A doctor who shared my hope for something better than today would be great.  I simply don’t want to spend the rest of my life mostly in bed, and in pain.

I know that particularly with any type of mental illness it is really hard to look ahead.  I get that.  But I also get that when I enrolled at university, I did it because I finally hoped there would be something more than hospital admissions and ER visits.  And there was more, much more.  I eventually got my degree and then got a job (albeit part-time) doing something I loved.  Even if you don’t believe that there is more, just know that someone (that’s me!) can see there is more for you.  Something better than today.

And right now I need to see more for me than ‘impossible to cure‘.  Like my mental illness (BPD), a cure might be more than I can hope for, but I can manage my fibro with the right treatments.  I can live a functional life in spite of it.   And that’s simply all I want to be able to do with fibro too.

To be fair, I know that there are some alternative theorists who say that a cure to fibro is possible, but I have yet to see how.  It seems more to me that there is so much controversy about even the existence of fibro, that a lasting cure seems unlikely right now.  There is still way to much argument of whether it is ‘real‘ or ‘all in the head‘ (which for the record, I believe it is both.  See my post It’s All In Your Head!).

PS. Please don’t give me sympathy.  I don’t need it, and it will only make me cry.  Many of us bear burdens of pain (just different types of pain). I am no different than you, just bearing a, perhaps, different load. What I need right now is practical hope that this can be different.  WIthout that, I’m struggling.  Without that, I admit that I can’t see the point.

And yes, a few days ago I did say I was taking a break.  Maybe I still am, but this just needed to be said.  Why?  I don’t know. I’m just going with it.

“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.

When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.” 

― Alison Lurie, The Last Resort

This Warrior Princess

Xena: Warrior Princess

Xena: Warrior Princess (Photo credit: Wikipedia)

Remember Xena, Warrior Princess?  The television series ran from 1995 to 2001 and while I don’t admit to having been an avid follower, just sometimes I wished I was a Warrior Princess like Xena, played by Kiwi Lucy Lawless.  She seemed fearless.  She could take on any battle.  Oh, and while in the middle of battle she always looked damn sexy and gorgeous.

This Warrior Princess has been fighting this week, to stay afloat.  And it didn’t look pretty.  A fibromyalgia flare stayed firmly with me for the entire week.  I am just starting to feel vaguely human again, but only just.  That’s why I can finally write again.  I spent a fair amount of the week in bed.  When I wasn’t trying to sleep it off I wished I were suspended somehow mid-air.  With absolutely nothing touching me the nerve pain might have been livable.  As such means has yet to be developed, I’m offering someone the opportunity to put all us fibro-ites out of our misery and create such a thing.

To be honest though, I can be a Warrior Princess when it comes to physical pain… if I must.  Fibro pain doesn’t always make sense but it makes more sense than mental pain.  To me anyway.  I know there are people who will disagree with me, and that’s okay.  Just for me?  I’d rather have physical pain than mental pain.

Along with the fibro flare I have been dealing with the realities of having lost some friends.  Whatever happened to Queen’s lyrics

“Friends will be friends

Right to the end”

It’s a nice thought, but it doesn’t always happen like that.  Lately I’ve lost a number of friends.  People who said they’d be there right to the end, and others who I always thought would be there right to the end.  But they’ve gone.  And try as I might to be Warrior Princess-like, it hurts.

Too often I think of something I want to share with one of them, but they’re gone.  Oh how easy it is to block someone on Facebook, or stop following them on some other form of social media.  They’re gone… just like that.  That’s exactly what has happened to me, with no explanation given.  Just gone from my world.

Oh, I can give myself an explanation, but it’s probably not the real reason.  What’s more I could turn up on their doorstep, except their doorsteps are half a world away, so that’s hardly practical.  And if you think that because of distance those people are not important, you’re wrong.

Why is it that in this age of social media it is far too easy to cut people out of our lives?  Why is it that we don’t need to offer an explanation for leaving anymore? And why is it that we don’t stop to tell our friends how much they mean to us, until they’re gone and it’s too late?  Why are friends expendable?  Why is it that when they’ve served their purpose we just push them out of our lives?

Yes, I feel hurt…   and no, I don’t feel Warrior Princess-like.  Thanks to fibro I couldn’t possibly have squeezed my way into Lucy Lawless’ costume, but I wish I could bat away the hurt that easily.

This week it hurts.  Physically and emotionally.  I need my friends this week, but I’m down a few.  I’m not someone who easily gives away a friendship.  Friendships mean the world to me, even those half a world away.  Unfortunately I realise that it’s so much easier for some.

And if you say I’m better off without friends like that, well maybe that’s true.  Maybe one day I’ll be able to think that way, but right now it hurts.  Right now, I’m nowhere near ready to hear that.

“Why did you do all this for me?’ he asked. ‘I don’t deserve it. I’ve never done anything for you.’ ‘You have been my friend,’ replied Charlotte. ‘That in itself is a tremendous thing.” 

― E.B. White, Charlotte’s Web

Beating Myself Over The Head With a Hammer

Why do I do this to myself?  I just do it all the time.  Make myself suffer.  Make me feel sorry for myself.  If it’s not one thing, it’s another and I really wonder why we keep doing the things that we know hurt?

Let me explain.  I can’t work at the moment largely because I can’t get medication to treat my fibromyalgia.  If I could, I would love to work.  Maybe not full-time but at least enough to have me feel like a contributing member of society.  Some income would be nice too, not to mention to make use of that degree I slaved to get to my name.

But I can’t get the medication and so I don’t have much control over my symptoms.  Today my pain is pretty bad and I couldn’t think of standing or walking for hours through a day (or half day) of work.  So I know I can’t work, but I just can’t stop myself looking for jobs.  In other words, beating myself over the  head with a hammer.

This morning there was a job vacancy in my email in-box.  I looked at thought, I’d love that job.  Better yet, I’ve got the skills, experience and personality for it.  I get excited.  Suddenly I’m picturing myself back in the workforce, and of all this thinking about where I would park my car (while at work).  Yes, I had already given myself the job.  Oh, and the starting salary looks good.

That is, until my knees and ankles ever so impolitely reminded me that just sitting today is agony.  And the job would require me to be on my feet most of the time.  My heart sinks, as my knees remind me that actually looking at job vacancies like this is just… dumb.  Not to mention depressing, disheartening, and… shall I go on?

But then I can’t quite bring myself to close the site and delete the email.  What if this is meant to be?  What if I’m just fooling myself over my incapacitation.  There are some people in my life who think I am just a drain on the taxpayer and need to get off my butt and find a job.  Their voices are in my head now, and again I’m thinking, what if they’re right?  The perfect opportunity to doubt my reality.

I fall into this trap so often, and so easily.  It’s never a pretty outcome because I end up frustrated again that I can’t work at the moment, and angry at the pain and fatigue that prevents that.  If you know fibro at all, you will know that this little exercise in knocking myself will only end in… more pain and fatigue.

Would someone please take that hammer out of my hand?  Perhaps cancelling the subscription to all the perfect jobs for me would help too.  I don’t deserve this.  Only a few days I wrote about Being Compassionate To Myself.  It was on a different issue but the basis is the same.  It’s time to be gentle with myself.  It’s time to put down the hammer.

“But this revolutionary act of treating ourselves tenderly can begin to undo the aversive messages of a lifetime.” 

― Tara Brach, Radical Acceptance: Embracing Your Life With the Heart of a Buddha

Being Compassionate To Myself

Ted 002

These are my ‘Dorothy’ shoes, named by my friend Elizabeth.  I don’t do sparkly, diamantes and fairy dust, and so these are probably as close as I am going to go to ‘Dorothy’ shoes.  If you don’t know what I’m talking about, go spend a few hours watching the Wizard of Oz, and keep an eye out for Dorothy’s shoes.

This picture was my Facebook profile picture for a long time, partly for the reason that by seeing the picture I was reminded to imagine myself walking in the shoes of the person I was talking to on Facebook.  That was in my days of my primary activity on Facebook being support groups.

After all, that’s what we’re told to do, isn’t it?  Walk a mile in a man’s shoes before you judge him.  It’s a pretty good philosophy in my mind because it reminds us not to judge another until we know what their life involves.  It allows us to go some way towards offering empathy, something we all want and hopefully are prepared to give.

Empathy, according to the Merriam-Webster Dictionary, is:

the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this

In the mental and physical pain that many of us carry each day, what we want is for someone to say “I get how it is for you.”  What strikes me is that while we’re on a never-ending quest for understanding, would it ever be enough for us?  I’m not sure.  I’m not convinced that anyone, unless they know me exceptionally well (and there’s very few in that class), can really know ‘how it is for me‘.

I don’t mean for that to be as depressing as it may sound.

Even if you walk a mile in my shoes, that does not mean that you are going to understand who I am.  After all you need to be me in my shoes, for you to understand me.  If you just walk in my shoes, you may have a completely different experience of me.

When I was first diagnosed with fibromyalgia I joined, signed up or ‘liked’ many websites and pages relating to living with fibromyalgia.  I thought I would be understood.  I thought I would meet people with the same experience.  I didn’t.  I thought it would make my experience of fibro better.  It didn’t.  If anything I felt more isolated partly because even these people didn’t seem to ‘get it‘ for me.

I don’t mean to offend anybody because those sites are all offering good information and support, but actually I didn’t feel understood, I didn’t feel I was with like-minded, and like-suffering people and all that happened was that I felt pretty isolated and depressed.  I pulled back, fast.

One thing I did find before I left was a whole lot of posts available for members to share with their friends and family, like this one:

It’s crying out for empathy, but it’s not the way I’d go about it if I was looking for empathy, and I doubt it would be that effective.  Personally I see these types of posts and I groan inside.  Maybe I shouldn’t, but then I’m human.  Maybe I’m allowed to say this because I have fibro (then again, maybe I shouldn’t) but while fibro is a hellish existence which I don’t enjoy, this description of it does not capture fibro for me.  This is begging for attention!  And who likes people who do that?  I would never share this with my friends and family.  Then again, I accept that it could well be the very real experience of the author.  We are all different.

I’ll take another subject I know only too well.  Borderline Personality Disorder (BPD).  People with BPD suffer immensely and the quote above, with a few minor alterations, could be used for us.  But why stop there?  Bipolar, Schizophrenia, Dissociative Identity Disorder, to name a few?  Which mental illness does not include great suffering, and leave sufferers feeling like they are imprisoned?  And who doesn’t want the understanding?  Chronic physical illnesses of all types are also the same.

My point is this.  We can cry out for empathy in these ways.  We can beg people to understand us.  But they never can fully understand what we’re experiencing, because they’re not us.  They can only understand to a limit and then we have to live with our own understanding beyond that.

I don’t have people in my life who fully understand what I am suffering both in mental, or physical terms.  A few have some idea, but then I have to remember that just because they might know someone else with BPD, doesn’t mean they understand my reality of BPD.  Like most disorders there are many variances which make reality different between individuals.

But you know what?  I’ve decided that it doesn’t matter if they don’t get my suffering.  That’s not what I need from my friends and family.  Yes, it would be lovely if people understood exactly what my needs are, but I’m being unrealistic.  What I need is absolute acceptance of who I am, as I am.  If they can give me that, then I can put that with my own compassion toward myself.

I believe that I would be more effective in getting my needs met if I didn’t push my demands for understanding on other people so much, but started practising self-compassion, in order that my needs be met.

I need to focus on what I can do to meet my own needs.  It doesn’t make me a hermit, it just makes me aware of what I need, and find ways to meet those needs… without having to go begging for everyone to understand me.  I also think  if I can love myself and take care of my own needs without begging for friends to ‘get‘ me, then I also become more attractive as a friend to others.  And that leads to more of my needs being met.

Is that confusing?  It would be quite remarkable if we all had friends and family who understood our suffering, but it’s not going to happen.  These are human beings we’re talking about.  If I can appreciate and accept my own suffering, identify for myself what my needs are, and be compassionate towards myself?  Then I am starting to make progress.

One final thought.  Think about the dog or cat who gives you unconditional love.  They don’t understand your suffering.  They just love you anyway.  And isn’t that enough?

“If you celebrate your differentness, the world will, too. It believes exactly what you tell it—through the words you use to describe yourself, the actions you take to care for yourself, and the choices you make to express yourself. Tell the world you are one-of-a-kind creation who came here to experience wonder and spread joy. Expect to be accommodated.” 

― Victoria Moran, Lit From Within: Tending Your Soul For Lifelong Beauty

Poison In, Poison Out

I’ve taken a break from Facebook for a while.  I’ll still keep my page (Infinite Sadness or what?)active but my personal profile is what I’m taking a break from.

I love my Facebook friends.  Some of them are friends from way back, or family, and some are wonderful people I have got to know and love through of Facebook.  But sometimes what I see on Facebook is too negative, and this time I have decided that it was affecting my health and I should take a short break.  Just enough to gain my perspective back.

Why do I need this?  You may well ask.  Facebook has some wonderful features to it, but lately I’ve seen too much bitterness, hatred, intolerance, judgement and hurt.  When I see too much of it, it starts to seep in and run me down.  It comes from lots of sources.  Some completely unknown to me, although appearing on my newsfeed anyway, and some closer to home.

I know there is also a lot of positive material on Facebook, and that’s why I put so much time into my page, but it’s hard to stay positive when that is being undermined.

The last few weeks have been pretty hard for me.  That’s not just from one source but a number of unrelated issues in my life.  My depressed mood has, in some cases, spun that out of proportion to the point where I was crying over the bowl my canine mate, Duncan needed to eat his dinner.  Yes,really.

Those issues, and my depressed mood have contributed to a flare up of my fibromyalgia symptoms.  That’s not unexpected for me.  I strongly believe that my fibro is affected by my emotions and my state of mind.  I know most sufferers disagree with this theory, and that’s fine.  It is however proven in my mind that my emotions influence the level of physical pain and fatigue I experience.

Last night after a day of bad nerve pain which was addling my brain, I accidentally took the wrong medication.  This wasn’t an intentional overdose, nor was it a suicide attempt.  It was simply that my mind wasn’t on the job when I was getting my medication for the night, and I got it wrong.  Stupid really, but it happened.

The night that followed was full of nightmares, and at one stage a belief that I was plummeting toward psychosis.  Actually I was terrified.  It was one pill I wasn’t supposed to have (with the others) and I was pretty unwell.

Today I am fine and I am reminded that when we put poison in, the outcome is also poison.  The poison that time was nightmares and a general ‘I’m going crazy‘ notion.  But it ties in with what I said about Facebook.  When I feed my mind with too much negativity from Facebook, then I feel that negativity.  I simply don’t want to go there and I certainly don’t want to end up generating more.

It is really important to me to be there for my friends, but if I don’t take care of myself then I can be no use to anyone else.  Whether that is conveyed in depressed mood, fibro symptoms, taking the wrong medication or anything else.  I have to look after me.

The ‘garbage in, garbage out’ theory is one I am well aware of from a nutritional basis.  I admit I’m not too good at following it, but I know how it works.  My mother was a dietitian after all, and I have had an eating disorder.

It’s the same for emotions.  If I don’t feed myself with good messages, then I get sick.  That’s not something I want.

“Nourishing yourself in a way that helps you blossom in the direction you want to go is attainable, and you are worth the effort.” 

― Deborah Day

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.

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

…And She Flew

Image credit: whakaangi.co.nz.

Image credit: whakaangi.co.nz
.

Remember the kiwi? It’s not a piece of fruit (that’s a kiwifruit) but a small, flightless bird. Our national icon here in New Zealand, s/he lives in the undergrowth of the New Zealand bush doing all s/he can to avoid predators. S/he is an endangered species, and that must be hard when you’re a bird… and you can’t fly. What’s more, as someone pointed out to me recently, s/he also can’t swim. Actually it’s amazing s/he has survived, against the odds, for so long.

According to the Department of Conservation, who work to protect this, and other natural treasures here in New Zealand, there are only about 72,000 of these birds left.  Actually that’s not many, and you won’t see them easily when you come here as they are also nocturnal birds.

Even if you’re not from New Zealand, it’s hard not to be taken with the kiwi.  A bird that can not fly, that hangs out in the dark, and apart from an impressive looking beak, does not have much with which to defend itself.

The kiwi (bird) is where some 4.5 million New Zealanders take their name.  We are also known as kiwis, and personally I’m honoured to be represented by such a bird who faces the odds, time and time again.  That kiwi (the bird) can not fly… but this kiwi (me) is going to fly.

“Come to the edge”, he said.  We are afraid. 

“Come to the edge”, he said. 

They came.  He pushed them, And they flew…”

   – Guillaume Apollinaire    

My favourite quote (above) reminds me that sometimes, even when we are scared, we need to fly.  We have to take a (hopefully somewhat measured) risk and leap into the unknown.  And there we fly…

In five weeks, I am going to get on a plane (actually several) and fly half way around the planet to be with someone I love.  Standing on the edge, there are risks, but I’ve measured them and believe they are worth it.  Aside from the risk of flying half way around the planet to be with someone I haven’t met in person before, I also have to face 31 hours of travelling time.  Yes, that’s right.  31 hours.  That includes stops in Sydney, Bangkok and Dubai before I get to my destination in England.  And that is the shortest possible trip I could afford.

31 hours of sitting on planes, and passing time in airports is not exactly many people’s idea of fun.  The most I have ever done is 15 hours and that was hard enough.  Now I am doubling that, and have to factor into the equation my fibromyalgia.

Anyone with fibro, or probably any type of chronic pain, will be wincing at the idea of this.  It is a huge undertaking when sitting for any extended length of time will see my body seize but, and walking through airports and waiting in lines will see the fatigue set in.  This is not going to be easy, or even pleasant.  But that has been part of the weighing up the risks for me.  I expect by the time I get to England I will be half dead, but it’s worth it.  I have no doubt of that.

I have done my homework on what I should expect of my body but  I admit I haven’t yet considered too closely what my brain function might be like by the end of this.  Will I be able to think straight?  Unlikely but Frank knows to expect a wreck off the plane.  If anything can test our commitment to each other it will be the state of me after that 31 hours.  While it would be nice to think I’ll be looking my best, I know I won’t be.  That’s just how it is.  Sometimes that’s life.

The difficulty with fibro is that I really can’t accurately predict how I will be.  I know sitting immobile is a factor, as is the difficulty of sleeping over that time.  I would love to have one of those seats where you can lie down properly to sleep, but they were way too expensive.  I also know walking long walkways in airports might be difficult.  But I might handle it all really well.  Let’s hope.

Meantime I did some reading.  7 Keys to Savvy Traveling with Fibromyalgia by Tami Stackelhouse, a Fibromyalgia Health Coach provided some interesting food for thought.  Some of it I admit I struggled with though.

One of the first ideas suggested was to use wheelchair assistance in airports.  Hmm.  It might be a good idea, because usually there is a lot of walking in airports, but I’m not ready to face a wheelchair just yet.  I’m struggling enough with hope right now (see Fatigued Hope), without going that far.  Maybe that’s pride, maybe it’s stupidity, and maybe it’s maintaining some sense of self-empowerment.  I think  I need that right now.

What I need from my blogging friends is to hear what works for you.  Have you travelled long distance with fibro?  What did you do to make this as easy, and preferable pain-free, as possible?  And if I wake the morning of departure to a fibro flare, how would I be best to manage that?

I am going to step to the edge, and fly (unlike the kiwi).  Whatever the pain, I know this is worth it.  But anything I can do to lessen that pain, would just make damn good sense.

“I am not the same having seen the moon shine on the other side of the world.” 

―    Mary Anne Radmacher