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

Quitting Cold Turkey

A few weeks back I read an excellent post by my friend Brett Batten about his efforts to give up smoking.  I laughed.  I laughed so loudly, that I think he heard me in Canada, and regret to say that maybe I laughed a little too loudly.  Having only tried to quit myself (and failed) several weeks earlier I guess I took a little too much glee in his struggles.  So my apologies (again) to Brett…  and if you’ve ever tried to quit, go and have a read.

If you want to follow my saga of abolishing the need for nicotine in my life, you will need to cast an eye over Giving Up Nicotine and Unseen.  If you don’t want to read those, the short version is that I tried to quit in September, but had to give up on giving up because the pain caused by nicotine withdrawal was simply too much for me.  It was much worse than the usual pain I am used to from having fibromyalgia.  It was always my intention to try to give up again, once I had access to some pain medication that would make life bearable while I went through the withdrawal.

My attempt to make that happen by getting off lithium (Ten Years Later, And I Have My Answer) failed, and so did my attempt to get my doctor to give me some stronger medication.  So there goes that plan.  Initially on failing both points I decided to just keep smoking for a while longer until I came up with Plan B.  That was until I was told that my Graves’ Disease (Is There a Sign On My Back?) is on its way out of remission.  The problem with this is that smoking makes the problems a whole lot worse, and is probably what is causing me so much eye pain, let alone an accelerated heart rate.  So it’s time to quit… again.  It won’t fix the problem (the Graves’), but hopefully it will ease the symptoms.

Last time, I used nicotine replacement patches, but a long conversation with the pharmacist yesterday left me with no options for nicotine replacement.  Because of the combination of health issues I have, I can not use patches or any other form of nicotine replacement, not even gum, and so I will now be going cold turkey.  And yes, it has occurred to me that if I can’t use nicotine replacements I really shouldn’t be smoking in the first place.

Right now I’m considering that being asleep for at least a week might be the best option, but as that won’t work I’m going to be grumpy and emotional for at least a week, so be warned.  And if you thought I already was, you ain’t seen nothing yet.

What interests me is that no one in the health sector seems interested in helping me to do this.  My doctor even refuses to admit that pain will be an issue.  He just thought I’d “been on the internet again too much”.  At least the pharmacist readily admitted it would be a problem for me.

The New Zealand Government now insist that cigarette and tobacco packaging must have graphic images of diseased body parts resulting from smoking.  They’re adamant that these images will stop us smoking.  Actually since they were introduced a few years back I have just ignored them, as have many others I know who smoke.  I don’t know of anyone who has given up because of the images, even though the government continue to go on about their success.  But now that I want to stop, and their images do nothing,  no one will help with the pain I will experience in the coming days.

I guess I could pay for hypnotherapy or something, but I don’t have the money; and I would be saving the government a whole heap if they just gave me a small amount of medication to get through the pain of the withdrawal.  But no…  because a week’s supply might turn me into an addict apparently.  I am a little concerned about my mental health (my mood)in all this, but I really don’t accept that a week will make me a drug addict, when I haven’t turned myself into one so far in this life.

There was one other suggestion put to me by one of my regular readers.  John has suggested the method by which he successfully gave up.  Smoking cigars without inhaling.  Ever since I was a child I have loathed the smell of cigars, put off by an aunt who smoked them.  She wasn’t the problem but I just couldn’t bear the smell.  I just don’t think I could do it.  But thanks for the idea, John.

Oh, and I refuse to eat my way through withdrawal.  I am not going to put on weight just because of no nicotine.  I absolutely refuse.

So what all that means is that you’re stuck with me.  I have to make it work this time.  As I was reminded by a family member yesterday, I can be stubborn when I want to be, so I guess I will just have to use it for good.  Wish me luck.

“The man who thinks he can and the man who thinks he can’t are both right.  Which one are you?” 

―    Henry Ford

Foraging In Dark Places

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

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

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

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

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

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


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

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

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

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

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

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

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

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

 – Joan Kerr

Is There a Sign On My Back?

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

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

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

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

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

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

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

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

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

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

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

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What do I choose?

Despair or Hope?

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

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

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

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

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

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

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

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

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

―    Ellen Bass

I Wanted To Be Sick

In more ways than one!

For the longest time I actually wanted to be sick.  I know I’m not meant to say that, but it’s true.

Not more mental illness, I wanted to be really sick.  I wanted a physical illness that could be seen and that could be put down to something going wrong in my body.  I was tired of this overwhelming sense that my mental illness was my fault, it was all in my head,  and so it wasn’t a real illness.

During the time that I have had a diagnosed mental illness, most of that time that illness was described as Major Depressive Disorder.  Depression.  There was a big part of me that said it was just an excuse.  I just couldn’t pull myself together.  It didn’t help when people said all I needed was… and that sentence could be completed with a man, a baby, a job…

Seriously people thought that if I had those things, everything would be okay.  No wonder I wondered for myself whether this was real.  Let me say that had I had those things I suspect I would have killed the baby (yes, really), killed myself to get away from the man (well, yes I tried that more than once), and the job?  I couldn’t have got myself a job if I tried.

I stopped eating when I became depressed and eventually I was diagnosed with Anorexia.  And that actually felt better.  It was something that could be seen and it definitely wasn’t something that would be solved with a baby (not possible considering my body weight and lack of ovulation), a man or a job.  The weird thing was that even though I was skin and bone (literally), and I looked awful, people continued to tell me how good I looked.  The most compliments I ever got about my appearance was while I was Anorexic.  There was nothing good about how I looked but some people think any weight loss is good.  The only problem is that Anorexia (or any eating disorder for that matter) is not about weight loss.  That’s just the by-product.

So I went back to wanting a physical illness.  It didn’t matter what.  A cast on my leg would do, anything that would show I was sick.  It didn’t happen.

Fast forward a few years and I have physical illnesses. In 2010 I was diagnosed with an auto-immune condition, Graves’ Disease, which mostly affects the thyroid, heart and the eyes.  That was caused by spending too many years taking lithium, and unfortunately a doctor who forgot (for a while) to check my thyroid and lithium levels.  I felt so sick that it really didn’t occur to me that I now had my physical illness.

Then last year came the symptoms of Fibromyalgia.  It wasn’t diagnosed until March of this year and one of the problems I had was that nothing could be seen.  It wasn’t until I convinced my doctor to send me to a Rheumatologist that I got a diagnosis.  Having the diagnosis helped me feel like this was actually real, but still it’s not something you can see, so how would one know whether it was real?

I know it’s real.  I know that I am in pain all the time, that I am incredibly tired all the time, that I have unexplained rashes on my body, I am dizzy for no reason and more.  There are lots of things I know, but I still struggle to know whether anyone else thinks it’s real and will accept that I am sick.

I read an interesting article from FibroTV called When Emotional Pain Turns Into Physical Pain.  It tied up with what I’ve been thinking for a while now.  They say that Fibromyalgia is often caused by some sort of trauma, they also say it can be brought on by an auto-immune disease (like Graves’).

So I find I’m back to denying that my emotional pain is of value and is significant.  If the trauma theory is correct then I suspect that my Fibro comes from the trauma of our earthquakes in 2010/11 and my father’s death shortly after.  It’s interesting that I have never felt so physically exhausted as I did the day Dad died and I had to do CPR on him for 20 minutes, while waiting for the ambulance to get through a city blocked by earthquake damage.

If you’ve ever had to do CPR you’ll know that it is exhausting and that 20 minutes is a long time.  I have run 20 kilometres before (several times) and hadn’t felt so exhausted.  What I’m driving at is that it wasn’t just the emotional trauma but the physical trauma of that day.  But you know I’m still back to the realisation that my physical difficulties from fibro are perhaps caused by emotional pain, and to be honest I hate that.

For those of you that aren’t familiar with the ‘joys’ of fibro, it involves periods of worsened pain, fatigue, and what’s known as fibro fog (my brain doesn’t operate properly and feels like I’m trying to move it through a thick fog of resistance).  These are called flare-up’s.  My experience is that sometimes I can predict these coming on, and sometimes it’s just a case of waking up in the morning and discovering you’re in the middle of one.  Interestingly the first flare-up that I had (after I was diagnosed and knew what was going on) was at Easter this year.  The significance of it was that it was also the anniversary of Dad’s death.  I hadn’t done anything physically to bring on the flare up, like more exercise than normal, for example.  I spent the five days of the flare-up adamantly denying that the anniversary had anything to do with it.

Some weeks later I had another flare-up.  I crawled to my therapist, determined to keep an appointment I would have to pay for regardless of whether I was there, and came to the eventual conclusion that actually there was some emotional reasoning that could be given to that flare-up too.

As I’ve explained before I am unable to take medication for my fibro, nor am I able to afford alternative treatments.  If this pain and sickness, which is far from pleasant, is caused by emotional pain, what I am going to have to do is work through it with my therapist.  But to be honest, I’m having a hard job accepting that.  If this is caused by emotional pain I trust my therapist to be able to help me but it’s weird.  Getting my head around feeling so bad physically because of my emotions is really hard when I’ve spent nearly 20 years struggling to accept emotion anyway.

Does that make sense?  It’s like a whole new way of thinking for me.  It doesn’t help that I’m looking over my shoulder waiting for my friends and family to say “all she needs is a baby, man,  or job”.  I’m convinced they’re going to say it.  Maybe not the baby.  Hopefully they’ll accept I’m too old for that but only recently I was told to get a job and everything would be alright.  Somehow I have to accept for myself that actually it’s okay to be sick, and no, I might not have that cast on my leg, but I am in sick.

I’m coming to the conclusion that this attitude of mine is a kind of stigma.  Now it’s not just against mental illness but also physical illness.  I struggle to accept that it is okay to be sick, when no one can see what is causing the pain.  In my head, I can tell myself this is okay for anyone else in the same boat.  But accepting it for myself is so hard, but if I want to reduce stigma, I’m going to have to start with myself.  I have to accept that it’s not only okay to have a mental illness but it’s also okay to have an invisible physical illness.

After all, when a stone is dropped into a pond, the water continues
quivering even after the stone has sunk to the bottom.” 

― Arthur Golden,    Memoirs of a Geisha

‘Sick’… Is Driving Me Crazy

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I recently read a great blog about what the writer has learned in 10 years of being sick.  It’s worth reading:

10 Tips from 10 Years Sick by Toni Bernhard
(What I’ve learned from 10 years of chronic illness.) 

Her first tip is to take time to grieve your old life and then create a new one.  I think this is what I’m trying to do now.  Whatever it is, it’s not easy and I hope I can adequately explain how I’m feeling and what I’m thinking.

Firstly, I don’t really think of myself as sick, so actually I nearly passed over this blog thinking it wasn’t for me.  Yes, I have Fibromyalgia and am in pain most of the time.  I am also struggling with fatigue and the inability to get refreshing sleep.  All of which are symptomatic of fibro.  I also have a mental illness (Borderline Personality Disorder – BPD) but that doesn’t make me consider myself as sick either.  But when my busy sister-in-law recently came and did my vacuuming, because I couldn’t manage it, I felt a combination of embarrassed, humble… and perhaps sick.  Maybe she helped me in more ways that one.

I stopped work in November 2010, after being diagnosed with Graves’ Disease.  This left me with a racing heart, eyes literally bulging out of their sockets, insomnia, a bulging goitre (an over-grown thyroid gland) and an all over body tremor.  Actually while it was all pretty unpleasant it was the tremor that was the most difficult to manage.  I struggled to hold a pen or type, and clients were welcomed by me shaking all over the place.  I was supposed to be the calm one.  They were coming to me for help.  It was just after the first and largest of our earthquakes, so to appear nervy was nothing unusual in this city.  But I was taking it at least 10 steps too far.

But I still didn’t consider myself sick.  I had a medical certificate to be off work but somehow I attributed my failure in the workplace to be more about my BPD symptoms (but again didn’t regard this as sick).  I was having difficulty working with my colleagues, and actually I’d got to the point where I regarded them all as fools that I wasn’t keen to work with anyway.  Perhaps my intolerance was related to BPD but I think it was also a reflection of how sick I felt physically, even though I couldn’t admit it.

Fibro followed, and while my symptoms of Graves’ eased, thanks to medication, I was faced with this never-ending pain and fatigue, so heading back to work hasn’t been an option.  Somehow though, it’s other people who are sick.  Perhaps people in hospitals, or with terminal illnesses or permanent disabilities.

The weird thing is that if you talked to my long-term friends and my family they would probably tell you I have been sick for 19 years.  Isn’t that crazy?  With perhaps the exception of the years I was at university, I have been sick with mental illnesses all that time.  I spent years in and out of hospitals.  Actually I have no doubt I was very sick at that time, but it’s still not how I viewed myself.  I think somehow I saw mine as a self-inflicted problem.  It wasn’t self-inflicted, but I felt I was to blame for some weakness that had caused this and the issues in my life that had led to mental illness, so how could I legitimately let myself be called sick?  This was all my fault, after all.

Sometimes when I’m talking, my words can’t keep up
with my thoughts.
I wonder why we think faster than
we speak. Probably so we can think twice.” 

– Bill Watterson

At this point I start to get into an argument with myself.  Don’t worry, I do this all the time.  I just hope you can follow because just in the past week or two I’ve started to think “hey, perhaps I am sick”.  Anyone who has fibro will tell you that this is not a nice way to be, and you spend a lot of your time feeling like the pits.  Basically it sucks.  Then another part of me pipes up with what I’m sure my doctor believes – that it is all in my head anyway.  It makes me so mad that this seems to be his attitude, yet I’m telling myself exactly the same thing.  Yes, I think that meets the definition of crazy (and I honestly don’t mind because I can see enough to know it is crazy).

So yes, perhaps I am sick but what happens now.  To be honest grieving my past life is hard because most of it recently I didn’t enjoy and don’t want to repeat (the last 19 years anyway), and what went before was mostly good but is just so long ago.  I get what Toni Bernhard means though.  Maybe now I have to accept that I am sick but the difficulty I still have is how do I move on and create a new life?

Fibro is a relatively new thing for me.  At this stage I can’t get any medication to treat either it, or the pain because of interactions with other medication I am on.  Added to that my doctor says he wouldn’t give it to me anyway because a lot of it can cause suicidal ideation as a side effect.  He won’t give it to me because of a history of trying to kill myself, although in my defence I would point out that it has been over 14 years since I tried.  Obviously some sins can’t be forgiven.  That makes him crazy in my books, but right now he’s the one with all the power – and the prescription pad.  And isn’t it crazy that medication that is basically anti-depressants and mood stabilisers can cause you to want to kill yourself?

I can’t get medication and I can’t afford alternative treatments and therapies, so I’m being honest with myself when I say the future isn’t looking so hot.  Creating a new life with sickness has a big question mark hanging over it.  I simply don’t know what is in the future and right now it seems impossible to set realistic goals for myself because I don’t know what is ahead.  Maybe in 10 years time I might be clearer?  But then I suspect I might also be very depressed.  Somehow I have to make a future for myself, so that I don’t end up depressed.  Actually right now, that is what I’m scared of the most.

I know that feeling of depression well and the last thing I want is to go back there.  Combine the unknown element of the future with the constant pain, fatigue and lack of sleep… and depression seems like a certainty.  The one thing going for me is that I know what I’m like.  I know what to expect from myself.  Unfortunately my track record is depression when I feel like I am stuck and without options.

But this is not some pity party, and if I can, I’m going to fight this.  Seems that while I can admit I’m sick, I better get in my car and head straight to my therapist.  Maybe between us we can fight this together.

PS.  I notice that Toni Bernhard has also written a book called ‘How to be Sick‘.  If anyone has read it, I’d love to hear what you thought of it.  Right now it’s on my wish-list but I’m not too sure just when my wishes will ever be granted.

The trouble with always trying to preserve the health of the body is that
it is so difficult to do without destroying the health of the mind.” 
~G.K. Chesterton