It’s All In Your Head!

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

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

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

Here’s a quote from that article:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

♦

“Each patient carries his own doctor inside him.” 

―    Norman Cousins,    Anatomy Of An Illness

♦

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

Auden, W. H.

Related articles

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

Don’t You Hate It When…?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

♦

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

―    Alain de Botton,    Status Anxiety

Related articles

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

…And She Flew

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

Related articles

• Facts about kiwi  (conservation.govt.nz)
• 7 Keys to Savvy Traveling with Fibromyalgia (myrestoredhealth.com)
• Fatigued Hope (infinitesadnessorhope.wordpress.com)

Fatigued Hope

Hope has been important to me for a while now.  Finding my own, and then holding onto it has been a break through for me in terms of my mood and my mental health.  But once I’ve got it, I admit that it’s not always that easy to hang onto.  This time it’s not my mood which is directly affected, although it’s clear to me that if I don’t get a grip on it soon, my mood could easily start to falter.

Right now I am so tired.  Fatigued seems a more appropriate word to use because tired just doesn’t quite capture the extent of it.  You know that feeling when you’ve taken sleeping medication, and your eyes are getting heavy, and you can’t concentrate any more?  I feel like I’ve been taking sleeping medication three times a day regularly, and am still trying to function as a normal, awake adult – without sleep.  It’s really not working.

I know that this is just standard for fibromyalgia, but right now my fatigue is worse than my pain (but don’t be fooled because that is still substantial).  All I want to do is sleep.  Give me a few spare minutes and you’ll find me drift toward my bed.  “Just a few minutes“, I tell myself.  But it will never be enough, and so usually I just keep going.  Actually right now I would have said I was sleeping better than usual.  But I wake up exhausted, and that is simply the way of fibro.  Apparently we don’t get any deep sleep, and so I find myself like this often.

My eye lids have been twitching (I’m sure there is a proper word but you’ll hopefully get the idea) for about five days now.  Initially I was worried, and wondered what was wrong with my eyes, but now it seems like it’s becoming normal.

I sat in therapy today struggling to comprehend what my therapist was saying.  I don’t have brain fog as I usually know it but it was just too tiring to follow one end of his sentence to the other.  And when I tried to explain it?  I didn’t get the message across.  He had been surprised that I was sitting there in pain (I’ve only had fibro for a year and been seeing him throughout that time).  Seemingly I should have had a sign around my neck.  While he heard that I was exhausted (and I appreciate that he did) it was difficult to get the full extent of my struggle across.

I’m getting the clear impression that if I look fine to others, then apparently I must be fine.  And isn’t that the difficulty of an invisible illness?  Fibro is one of many illnesses where a sign around the neck is important.  Of course I can tell people how I really am, but the repetition would drive anyone to sleep (including me).

Instead of driving people to sleep I keep it too myself largely. “I don’t want to complain“  “It doesn’t matter.”  There are lots of things I can tell myself but the reality is that largely it’s just easier to keep it to myself.  The thing is that quietly my hope is fading.  And I hate that because I just don’t want to go back there.

So what is hope in respect of an illness like fibro?  I don’t know.  This is a chronic illness.  There is no cure.  At the moment I can’t get medication to treat either the symptoms or the pain.  Oh, and I can’t afford alternative treatments right now either.  So how does hope fit into this scenario?

I have this sense that somewhere inside myself I need to come to a point of accepting the illness.  But how?  I don’t want this pain and fatigue for the rest of my life.  So how do I accept it without resigning myself?

My symptoms have got significantly worse in the year since I was diagnosed.  How do I have hope for my future with that in mind?  Right now my symptoms are dictating how I live my life.  I want to choose how I live my life, not have an illness do it for me.  How?  How do I be the one in control?

If you’ve had any flash of inspiration I’d love to hear it.  But don’t just tell me it will look better tomorrow, because I doubt that.  Tomorrow might be different levels of pain and fatigue but they will still be here.  That’s just the way it works.

“I want to explain how exhausted I am. Even in my dreams. How I wake up tired. How I’m being drowned by some kind of black wave.” 

―    Elizabeth Wurtzel

Nothing More Lonely

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

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

Image credit: FB/A Beautiful Mess Inside

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

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

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

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

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

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

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

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

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

♦

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

―    Marcia Angell

The Black Mark Against Mental Illness

‘DSM-IV’ Image credit: Wikipedia.com

There’s been quite a bit of conversation going on in different places about the upcoming Diagnostic and Statistical Manual 5 (DSM-5), which will finally make itself useful in May 2013.  There’s a lot of controversy over various elements of it and I could take up many posts just discussing those. I must remember to get back to the intended change of name for Borderline Personality Disorder (BPD).

For today though I want to talk about the issue of the stigma against mental illness and how it is making itself seen, and heard in the fibromyalgia world.  At the outset it’s important to point out that fibro is NOT a mental illness, nor is it categorised as one.  But there is a new disorder mentioned in the DSM-5 that has a lot of people with fibro worried.

Under the DSM-5 there is a new diagnostic category called Somatic Symptom Disorder (SSD) which will apparently mislabel some people with medical disorders as have a mental disorder.

A person will meet the criteria for SSD by reporting just one bodily symptom that is distressing and/or disruptive to daily life and having just one of the following three reactions to it that persist for at least six months:

1) ‘disproportionate’ thoughts about the seriousness of their symptom(s); or

2) a high level of anxiety about their health; or,

3) devoting excessive time and energy to symptoms or health concerns   (1.)

The concern of fibro patients I have been reading of in recent days is that their fibro will be re-labelled as SSD if they have this high level of anxiety and thought to their fibro symptoms.  As a fellow sufferer of fibro I know all too well that it is very hard not to be anxious about symptoms.  They are literally new every morning, and there is a constant worry over how to treat, and manage the symptoms as well as getting through daily life.  So I get their concern that they might be labeled with SSD.

Do I want yet another label?  Not particularly, but I fail to see the whole issue with quite the level of dismay I have read recently.  I will still be a fibro sufferer, and therefore a medical patient.  SSD does not take away my fibro.  Regrettably what it does is give me, and no doubt millions of others, an extra label.

I know for many fibro patients, they fight hard against suggestions that fibro is ‘all in their head’ and has a psychological component.  For me though, I am quite happy to accept that there is a psychological element in my fibro, and actually one of the most helpful treatments I have is access to my psychotherapist.

That doesn’t mean my pain and fatigue isn’t real.  I can assure you it is.  But I recognise that my emotional well-being plays a part in how much pain I am in.  Most people though, don’t want to think this way and I suspect that stigma and the general public’s view of mental illness is the reason for this.

What  concerns me is the fear that I have seen fibro patients display as they write about being labelled as having a mental illness.

“WTH! I’m not mental!”

“This is such BS!! I know my pain is real and not in my head and has it made me crazy? Yes!! But I wasn’t before fibro moved in!!”

“this made me want to cry… people already do not believe me so I push myself everyday to prove some one hurting so much everyday can be strong…. so they call us crazy when we just want to know whats wrong with us, be normal, and happy…”

“My doctor told me all fibro patients just need a good psychiatrist !”

“the pain is more than real…its not in our heads!!!”

“I have nightmares about people close to me not believing what I go through with FM and belittling the severity of it. I wake up crying and feel awful for hours afterwards.”

“Please don’t make it harder for all of us than it already is. We are in enough pain as it is.”

“This is not a made up illness. It is real. People are suffering immensely.”

“The pain is REAL.  I have it right this minute in my whole body and it is excrutiating (sic), is that all in my head.”

If you are led to believe that your medical illness will disappear, and be replaced by a mental illness that takes no account of the level of pain and suffering you experience on a daily basis, then I can understand people being concerned.  But I don’t think that is exactly what is happening.

What does concern me is that when I read the comments above, I see how fearful people are of being labelled with a mental illness.  From this range of comments is suggests that people see mental illnesses as made up, not real, all in our head and of no significance.

And while I know first-hand that the pain of fibro is very real I know that the pain of mental illness is just as real, if taking a slightly different form.

All I can take from this is that while fibro sufferers have a shared fear of not being taken seriously, more worrying to me is the sheer size of stigma which makes people fearful of having a mental illness.  If everyone shares this fear, then they are likely to not seek treatment if they think they have any sort of mental illness.

Actually mental illness is real, but it is also survivable.  If the SDD diagnosis can be used carefully and appropriately then maybe people with overwhelming and disabling worries about their illness, whatever it is, can be helped.  That doesn’t need to stop people with fibro getting the treatment we need.

I am inclined to think there is a little scare mongering going on.  A little information is blown out of proportion.  And then the masses get scared.  Maybe I’ll be proven wrong.  But then I’m so used to mental illness, another label really won’t worry me.  I’ve got plenty already.  It does seem though, that stigma is alive and kicking and it’s not at all helped by scare tactics.

Related articles

• What My Doctor Won’t Tell Me (infinitesadnessorhope.wordpress.com)
• Your Physical Illness May Now Be Labeled a Mental Disorder (psychologytoday.com)
• Mislabeling Medical Illness As Mental Disorder (psychologytoday.com)

What My Doctor Won’t Tell Me

My doctor won’t tell me anything.  I think he has perfected the art, no doubt taught in medical school, of ‘keeping the patient in the dark’.  My guess is that they have a unit on this topic every year of medical school, and it is continually repeated throughout their career when they take off to tropical islands courtesy of drug companies.  Along with taking the Hippocratic Oath, I am coming to the belief that they also take, and renew annually, an oath to keep the patient in the dark.

My suspicion that this is an industry wide oath is because it’s not just my current doctor who does this.  My experience is that 95 per cent of doctors I have seen across my life (and I promise you I’ve seen more than my fair share) have been firmly committed to this way of working.

Information (Photo credit: Wikipedia.com – heathbrandon)

Why would they do this?  Probably simply because it saves time.  They can push me out the door, while welcoming another patient in, all the while earning more dollars.  It makes sense…  for them.  It makes no sense for me, the patient.

I also believe it is about power.  Doctors like to be looked up to, seen as the one with all the answers.  It’s great for their egos and probably even helps them deal with the patients they lose along the way (through any number of means).  If my doctor keeps me in the dark, then I have to rely on him to act when necessary, and he loves that.  The problem though for me is that experience tells me that my doctor has far too many patients who rely on him, too little time, as well as perhaps not enough incentive to make sure I get the care I really need.

Nearly a year ago I was diagnosed with fibromyalgia.  It was my second big diagnosis within 18 months, and yet again I had been sent off to a specialist (this time a rheumatologist) to confirm the general practitioner’s (GP) suspicions.  After a rather large amount of money had exchanged hands, and a very thorough (well, what seemed thorough to me, but how would I really know?) assessment I was told I had fibromyalgia.  She then dumped the news on me that she couldn’t offer me any medication for this condition and that I would just have to get used to it (it was said a little more kindly than that but not much).  And that was the end of my appointment.

Silly me.  I walked back to the reception desk and when the receptionist handed me my receipt, I half expected her to hand me a ‘Welcome to Fibromyalgia’ pack.  You know how when we join a new bank, for example, we get a brochure explaining the services of the bank, details of opening hours, the web site addresses we will need to access the internet banking?  Wouldn’t it be great if doctors provided us with information?  It would suit my information junkie tendencies perfectly.

Being an information junkie runs in my family, and my skills aren’t nearly as well honed as some other family members, but I am one of those who immediately needs to look for information when I am faced with a new issue, problem or just a new subject I get interested in.  I need to read all I can about it.  I search the internet, I look for books, I want all the information I can possibly get my hands on.  For a medical matter I want my doctor to hand over all the information s/he has.

Unfortunately this is where I come to a fast halt.  I get a “let’s just see how it goes“.  I hate that.  I want to know ahead of time how it might go.  I want to know what problems I might come up against.  I even want to know what I can do to avoid those problems, and if I can’t avoid them I want to know what to do.  Sadly doctors never see it my way.  And that means relying solely on what information I can scramble together from sometimes dubious sources.

You see I want to be empowered as a patient.  I want to be prepared.  I want to feel like I can have some control over what is happening to me.  But there seem to be very few doctors, both in general medicine and mental health, who are prepared to help me do it.  I know doctors struggle for time, but I also know that when I know and understand what is happening to my body, then I need my doctor less.  A win-win for both of us.

One of the very real difficulties with a condition like fibro is that everyone’s experience is different.  No one can give me a list of exact symptoms I might face.  And so I don’t get told anything.  Everything comes as a surprise.  Everything that happens to my body, I have to wonder why or what is going on here, and with more than one condition I am always left wondering which one is causing the problem.

Over the past few weeks I have noticed that I have put on a little weight.  Not a lot, but to the extent that my clothes just feel tighter.  I admit that weight gain is a really hard issue for someone who is a recovered anorexic, so I have been quietly starting to panic because there’s one thing I know… I’m not eating any more or less than I was.  All the old fears come into play of being out of control and the need to take back that control by restricting.  I’m not about to do that, but it is a very real war in my head that any recovered anorexic will tell you.

With one of my conditions (Graves’ Disease) I am meant to panic and get straight to a doctor if I have a sudden weight loss.  With the other I had no idea whether it was even an issue.  So information junkie Cate had to start searching again, and found that unexpected weight loss or gain can be an issue for people with fibromyalgia.

For a moment there I could breathe again.  Perhaps that’s the explanation, then again maybe it’s not.  I wouldn’t know because my doctor hasn’t helped me get the necessary information I need about this illness.  Maybe it’s a peace of mind thing, but it would have helped me considerably to know this was a possibility.  Actually it would also explain why last year I had been losing weight without any adjustment to my diet or lifestyle.  I’m just hoping the scale tips shortly and I start losing again.

I know these are not life and death issues I need help from my doctor, but I do feel like fibro is a runaway train riding close to out of control.  The place I get my information from tends to be from other sufferers, and that’s great to have that but it feels like fibro is just happening and I have no say about it.  Not being able to access medication makes it harder.  It seems like I just have to let it happen to me.

I didn’t like it when I had to let depression happen to me for so long, and I don’t like this feeling that fibro has completely taken over my life.  I might have fibro, but fibro is not me.  I need to find a way of taking back the reins and I’d very much appreciate my doctor coming on board with this.

Except I think I’m dreaming.  I don’t think he wants me to be empowered.

♦

“My own sex, I hope, will excuse me, if I treat them like rational creatures, instead of flattering their fascinating graces, and viewing them as if they were in a state of perpetual childhood, unable to stand alone.” 

―    Mary Wollstonecraft,    A Vindication of the Rights of Woman

All I Want For Christmas

There’s a few things I’d like for Christmas.  If that’s too much to ask for, there’s a few things I need to buy.  While I’ve been either lying in bed, or lying on the couch over the past few days experiencing the full on fibromyalgia attack (note, not a flare!  See Namby-Pamby Flares) I have realised there are a few things I need.

Firstly I need a laptop.  Please Santa.  I’ve been ‘writing’ posts in my mind as I’ve lain there unable to sleep.  They probably didn’t make much sense, but if I had a laptop I wouldn’t have to transcribe onto paper for later when I could sit at my desktop computer.

Even my two year old niece was watching Dora The Explorer on her mother’s laptop the other day.  If L can use a laptop then surely I should be allowed to write my posts from bed, or the couch.  Shouldn’t I?  My bank account says otherwise so I’m really pinning my hopes on Santa.  Really Santa, I do believe!  Everything you say is true!  Absolutely!

Next…

I Want To Float

Image credit: flickr.com/photo/40571874@N00/1101392997

Why do I want to float?  Because with fibro, pressure from anything hurts.  Whether I am sitting on a chair, lying on the bed, anything.  Even standing makes my feet hurt.  So I don’t want to be on anything.  I want to float.

What are my options?  Well, we’re short of swimming pools in my part of Christchurch thanks to the earthquakes of 2010/11.  The two public pools that were on my side of the town have been destroyed.  We’re waiting on the replacements, like many other things.  No doubt we’ll be waiting a while and I don’t mind.  Personally I think fixing homes is more important, but the Government didn’t ask me and I see they’re fixing children’s paddling pools at parks.  So swimming pools can be too far off.

I live only 10 minutes drive from the sea so I could take to the beach.  The only thing is that if I’m going to float in the sea I really have to have my eyes open to watch for stray waves, and perhaps sharks.  Somehow I just don’t see that as practical.  It wouldn’t be very relaxing.

One of my favourite television programmes is the English Absolutely Fabulous.  I love it, and actually when required, I can do a pretty good Eddy impersonation.  Eddy had a floatation tank in her house.  While the idea of getting in a tank and closing the lid leaves me a little claustrophobic, the length of the tank she had seems like just what I need.

I have a bathtub in my house but I’m tall, and I can’t stretch out totally and float.  What I need is an extra long bath.  Maybe seven and a half feet long.  I’m thinking that when the earthquake repairs are finally done to my home ( before, or after the swimming pools) I can have the bathroom extended to include my extra long bath.  It would be bliss.  If yoiu can’t find me, that’s where I’ll be.

Whether or not the insurance company and government combination responsible for the repairs would be willing to help is questionable.  But I might just remind them that my fibro was apparently caused by earthquake trauma.  How can they say no to that?

One more thing I want while we’re at it…

I want to float

Yes, again I want to float.  But this time, not on water.

Image credit: Kropsoq / Wikipedia.com

As I’ve said before (see Serious Attitude Problem), Christmas is not my favourite my of year.  I might not have been doing anything practical this week in terms of getting ready for Christmas, but I have been thinking.  Unfortunately I haven’t been doing the thinking I needed to like ‘how am I going to get my shopping done and not stress out with all the crowds now that school is out?‘  Instead I’ve been thinking ‘how can I get out of this?‘

Much as I have no desire to repeat those years, the years I spent Christmas in hospital or respite care had their very definite advantages – the ability to ignore reality.  In hindsight I admit that it was very convenient to have to miss everything about Christmas just because I was entombed in a psychiatric hospital.  You have to admit, it’s a pretty plausible excuse.  I’m not going back there and I know now that I’m a ‘big girl’ and I have to face reality, but don’t we all need our own escape plans?

Mine?  Well New Zealand is said to be the adventure tourism capital of the world, so the last thing I want is a hot hair balloon.  That way I can just float away when it all gets too much.  That wil be me running from the family Christmas barbeque (remember it’s summer here), jumping in the basket… and away I float.  Bliss  And by the way,in true introvert style, it will just me… and someone who can drive/fly this thing.  Wish me luck.

♦

“You never really know what’s coming. A small wave, or maybe a big one. All you can really do is hope that when it comes, you can surf over it, instead of drown in its monstrosity.” 

―    Alysha Speer

Related articles

• Namby-Pamby Flares (infinitesadnessorhope.wordpress.com)
• Serious Attitude Problem (infinitesadnessorhope.wordpress.com)

Namby-Pamby Flares

’1970′s flares’                      Image credit: Wikipedia.com

If you were thinking that I was off doing the Christmas shopping… you’d be wrong.  If you thought I was preparing Christmas menus…. that would be the biggest joke.  No, I haven’t been doing anything Christmassy, and no doubt I’ll pay for it.  This week I’ve been struck with a fibromyalgia flare.

I’ve had plenty of time for thinking, although the quality of those thoughts is probably dubious.  Brain function tends to go with a fibro flare.  One of those moments when I was lying there hoping for death as a relief from pain, I started thinking, why do we call it a flare?  My bet is that it was named by a doctor who had no personal knowledge of what it’s like to live through a ‘flare’. Hmm.

This is what I know about flares.  Flares were trousers in the 1970′s.  I had a purple pair which I was very proud of.  There was no such thing as skinny jeans, instead everything was flares.

The other flares I know are the flares you take with you on a boat.  Not that I have a boat but I know they are required in this part of the world.  They’re like a manual emergency locator beacon way before the days of Global Positioning Systems (GPS).  You boat breaks down, so you fire a flare into the sky and hope like anything that someone back on land sees your flare, and has the ability to come and rescue you.

Neither type of flare has anything remotely similar to a fibro flare.  Certainly a fibro flare lights up the sky (in some ways) for the sufferer but to call it a flare seems more to me like talking about 19th century swooning women.  Let me assure you there has been no swooning here.  I might feel like I want to die, and I might be frequently dizzy but

I do not swoon … ever.

Where my thoughts are going is that to call this a flare is way too gentle.  It just doesn’t describe the magnitude of pain, fatigue and brain deterioration.  It’s time for a better word if we’re going to get noticed by anyone.  And not be thought of as a bunch of over-achieving, over-complaining women (remember there’s plenty fo men too).

We don’t call it heart attack a heart flare, do we?  Or an asthma attack, an asthma flare?  I admit I’ve never had a heart attack, although as a side issue, right now my doctor tells me my heart is surging.  As yet he has no idea why.  Every so often it just speeds up to tachycardia levels.  That’s why I had to hit the smoking on the head once and for all.  It’s not pleasant, so with that knowledge and the experience of watching my father having a heart attack a number of years back, I know it’s not at all a nice experience and to call it a flare would simply be an under-statement and ridiculous.

I did once have an asthma attack.  It’s not the sort of thing that you usually have only one of, but I’m quite glad I only had one.  It was awful, I ended up in hospital for a few days and I wouldn’t even joke about calling it a flare.

What I want to suggest to my fibro friends, and everyone else who is still reading wondering where I’m going to with this, is that we change the name.  No more fibro flares.  Let’s call it a fibro attack.

Say the word ‘attack’ and you can feel the force of the word coming out of your mouth.  Say ‘flare’ and it’s just some namby-pamby nothing word.

We talk of wanting people to understand the viciousness of fibromyalgia, and for that matter other chronic pain illnesses, but we use a nothing word like ‘flare’ to describe it.  ‘Flare’ doesn’t describe the pain I’ve been in over the last three days.  It’s an ‘attack’ when on one side of me the bedding hurts my skin just because the two are touching, and the other side of me the mattress is too much pressure.  I can’t bear for anything to be touching me.  [More to come on this.]

I can’t sleep because the pain is too much.  My skin feels like it is on fire, I have electrical currents running the length of my spine, my ankles and wrists feel like they are bone rubbing against bone, and my muscles weigh a million tonnes and ache terribly.  I am exhausted, and my brain won’t function.  I can’t bear the light in the room even though the curtains are pulled, and any noises make me jump in my skin.  This is not a flare.  This is a vicious attack, and all I can very much hope is that tomorrow when I wake it will have eased.

So if I talk of a fibro attack from here on in, you’ll know what I mean.  I suggest you change too.  It’s just one of the ways we can get this terrible illness taken seriously.

♦

To finish, I’m wondering about this.  Where am I going wrong?

“The  aim of the wise is not to secure pleasure, but to avoid pain.”

- Aristotle

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

Related articles

•  Giving Up Nicotine (infinitesadnessorhope.wordpress.com)
• Unseen (infinitesadnessorhope.wordpress.com)
• Ten Years Later, And I Have My Answer (infinitesadnessorhope.wordpress.com)
• Is There a Sign On My Back? (infinitesadnessorhope.wordpress.com)