I’ve Got Nothing To Complain About

First things first, let me say that I have been missing in action for too long. Somewhat ironically to this post, I have been sick. This is something I have been living with symptoms for about six months now (I know this is relatively nothing).

With this physical illness has been a bad dose of brain fog. If you’ve had it you’ll appreciate why it’s hard to write while dealing with a brain that amongst other issues, I haven’t been able to finish my sentences and I have been mixing up my words, if I can at all bring to the surface of brain the words I want in the first place. I still have little idea as to the ‘why’ of the illness. That question is yet to be answered. I try to take advantage of the good days, and so far, this is one.

♦

I have only been anywhere near homeless once. Nearly 20 years ago. I use the word ‘homeless’ with what has to be a stretch of the imagination, but I use it for a purpose. At the time, I was mentally ill. Actually, that mental illness was far out of control and I was usually (at the time) resident in a psychiatric hospital. Actually, I spent most of 1997 as an inpatient, sometimes as a voluntary patient, and others as an involuntary patient. Neither was pleasant.

One day I was given the opportunity to go on a ‘van outing’. Wow! I don’t remember my status as a patient at the time, but I know that because I had been self-harming, I was initially told I couldn’t go, until the last-minute. While out on the van trip (to get ice-cream) I chose to run away, with another patient. There was no plan to run, on part anyway, just making the most of the opportunity. I am still embarrassed by my actions, given circumstances I took advantage of. It was plainly wrong, in so many ways. There was no way that staff could stop us because of the staff member’s incapacity. That’s why we did it.

I split up from my co-conspirator fairly quickly. She was largely interested in getting drugs, not something I was after. I spent the rest of the day walking the streets of Wellington, New Zealand trying to avoid the possibility of seeing anyone I knew, or being caught by Police. I had soon self-harmed and needed medical treatment, but I kept walking anyway. I didn’t want treatment.

For a ‘few’ hours I had no home, that was accessible to me anyway. Eventually, I was picked up by Police, taken to the local Emergency Department before being escorted back to the psychiatric hospital.

Why have I told you this? It was a long time ago but it was the closest I ever came to being homeless. I recognise that I wasn’t homeless. I just couldn’t go home. And I didn’t want to either.

Today I read an article about having a chronic illness while being homeless (in the United States). It focused on chronic physical illness, which I am now battling more than I was then battling mental illness. The article opened my eyes to something I had not stopped to consider. Living in my nice warm home with chronic illness, I have nothing to complain about when compared to the hardship faced by homeless people living with chronic illness.

Have a read.

The Impossibility of Managing a Chronic Disease While Homeless by Maralyssa Bann 

http://www.theatlantic.com/health/archive/2016/03/homeless-patients/475830/

“Living on the street, even something as simple as finding a place to store medicine can be an insurmountable challenge.”

It made me think about my attitude to my own illness. I have got nothing to complain about. I hope you are challenged in reading the article too.

Thanks for reading

 

Cate

Time To Call In The Troops (aka I Can ‘Do’ Tough!)

These troops are on their way from Space as you read.
By Cambridge University Spaceflight (University of Cambridge Department of Engineering) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

Whether you have a chronic physical illness, a mental illness, or whether you’re just ploughing through life keeping one foot in front of the other, and your head above water… sometimes it’s time to realise that just perhaps… it’s time to call in the troops.

Sometimes I’m a little slow to realise that the time has come.  Sometimes I think I can just keep plodding on by myself and “I’ll be okay“.  Sometimes I’m standing, gazing at the sky, wondering just when the troops are going to arrive.  It doesn’t matter that I haven’t called them, I just assume that somehow, magically, they will know I need them and come running (or flying in the case of the image above).

Other times I get a whack in the side of head and realise that unless I ask, it just won’t happen.

And vague mentions of stress are not enough.  When I finally work that one out and actually specify to someone who can help that I need their help… then I’m finally getting somewhere.

That whack in the side of the head (not literal) came yesterday and today, I asked for help.  I called in the troops.

Just in case you haven’t got it yet, that is a major accomplishment for me.

♦

Yesterday I walked away from a situation in tears, out of sadness for a person I love, and an inability to know how to make a positive difference in that person’s life.  I wasn’t even sure it was possible, but meanwhile I felt helpless and frustrated.  Aside from the other person’s needs, I could feel my own stress levels had skyrocketed again.  Again, because I was going through the same helplessness and frustration day in, day out.  And it wasn’t getting any better.  If anything it was getting worse.  What’s more it was something I simply couldn’t run away from (although you can bet I considered it).

I realised that I could sit, feeling helpless and frustrated, hoping that someone would come along one day and help me… but I knew (finally) what wouldn’t happen.  The help wouldn’t come (certainly not magically) and I would simply get sicker, both mentally and physically, as my stress levels continued to rise.  I finally realised that I had to find a way of getting help for myself before I become helpless, not to mention hopeless.  I know myself well enough to know that I walk a very fine line.  It doesn’t take much to tip the balance and end up in despair, depression and hopelessness.

♦

So with all this wise thinking on board, today I went out to ask for help.  It turned out not to be quite the help I was hoping for.  It seemed that bureaucracy got in the way.  Doesn’t it always?  But almost miraculously (maybe that’s going over the top) I got enough help to change my mindset, and actually that’s what I think is the exciting part of all this.

Somehow literally walking down the street and into an office to ask for help, lifted the feeling of helplessness and hopelessness.  Even though the person I spoke to saw me for maybe five minutes at the most, I realised I wasn’t helpless.  Actually I have a hard task ahead of me.  One I would rather not have.  But I’ve got it and today I’ve been able to suck it up and really accept this role.  I’m not helpless and the situation is not without hope (although definitely pretty bleak).  It’s just tough.  But I can ‘do‘ tough.

No one said this to me.  I just got the message myself.  Sometimes weird things happen that way and we find our own strength to do what’s needed.  Somehow by going out to look for help from another source, even though I didn’t get exactly what I was looking for, I did get what I need.  I really hope that’s not too confusing.

Today’s quote might seem like it’s not really relevant, but actually it is totally relevant to my situation and my effort today to take back some control in my life.  If it only means something to me, then that’s okay.  Perhaps the relevance is contained in the parts I couldn’t share.  My apologies.

♦

“The death of democracy is not likely to be an assassination from ambush.  It will be a slow extinction from apathy, indifference, and undernourishment.”

 – Robert Hutchins

 

What’s Fair?

I caught myself out last week, saying a sneaky little “It’s Not Fair!!!”  It’s easy when I take a somewhat child-like view of ‘everything is against me‘ and so…  ‘it’s not fair‘.  It’s so easy to slide down that way and to end up feeling completely sorry for myself.

In my family, my second oldest nephew is well known for his “it’s not fair!“.  Of course, being the second oldest, and worse still, the middle child, is first on his list of what is ‘not fair‘.  There’s sometimes bigger issues at stake for him too.  I’ve heard his father (my second oldest brother and a middle child) give Master Thirteen his reasoning for why actually it is fair.  It’s something to do with being fair or equitable.  Actually it’s lost on me, but then his speech was never for me anyway.  Sometimes though, it would be helpful to have someone who would remind me of a better way to look at things than ‘it’s not fair‘.  Sometimes it’s too easy to forget.

Last week I went to the doctor after a few weeks of what seemed concerning and slightly weird symptoms.  I’m never very good at getting myself to the doctor but googling some of my symptoms left me with the clear instruction to do exactly that.  Go to the doctor.  Now.

To cut a long story short (I know you don’t have all day), the doctor started using the words ‘likely tumour‘ and began the process referring me to an ENT specialist.  As he said, my symptoms were out of his league.  I guess at least he was honest.  Then again, that ‘T‘ word is a bit like the ‘C‘ (cancer) word.  Words we don’t want to hear. I didn’t want to hear what he had to say.

I think I was only in the car park when I began on my ‘it’s not fair‘.  Doesn’t it seem like some people go through life with not a problem?  No serious illnesses, no big crises, not even huge relationship breakdowns.  They just glide through life.

And that’s where I got in my rating of fair.  I didn’t need to go any further than mental illnesses and chronic physical illnesses.  It seems like it’s one thing after the other.  I won’t go through all my other woes.  If you’ve been reading you will have an idea of them.  If I simply look back at the last five years?  Wow!  Crisis after crisis.  Wouldn’t it be nice to have a quiet patch?  A space in which life would just flow easily?  Is that too much to ask?

I started to think about what ‘fair‘ actually means.  I didn’t get very far.  What dictionaries suggested was that “fair  was the right way to treat someone, and what they deserve“.  But what does that mean?  Who gets to decide what is right for my life compared to what is right for say, yours?  And even more so, who gets to decide what I deserve?  That starts to suggest karma, and I have to admit that I actually don’t believe in karma (I’ll probably be shot down for that one).  Karma, in terms of retribution makes no sense to me for the same reason as fair makes no sense.  Some people get such a rough deal in suffering when they’re actually very good people, where others just sail through life and are scoundrels.  I can’t accept that this is because of what they might or might not have done, or even what they deserve.

So I’m choosing not to say this latest blow at the doctor’s surgery is fair or not fair.  It just is.  It’s just the next thing that I’m going to go through.  It scares the hell out of me but I don’t deserve this any more than anyone else would.  It’s not about fair, it’s simply about what is.

In the meantime I just have to wait.  The New Zealand Health System is such that I just have to wait my turn to see the specialist.  The doctor told me I am likely to get bumped up the waiting list because of what he called the serious nature, but I still have no idea how long that will take.  Hopefully not too long as some of the symptoms are getting on my nerves, and I sure can’t claim to being a patient person.

♦

“The world isn’t fair, Calvin.”
“I know Dad, but why isn’t it ever unfair in my favor?” 

― Bill Watterson, The Essential Calvin and Hobbes: A Calvin and Hobbes Treasury

Being Compassionate To Myself

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

♦

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

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

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)

Happiness Is…

Source=[http://www.flickr.com/photos/45654212@N00/3339462422/ supreme happiness]

Do you remember the ‘Love is…’ cartoon series?  They have been running forever and were originally the work of Kim Casali ( a kiwi).  As a teenager I thought they just had it all in terms of the answers to that question all teenage girls wonder about of what is love.  For some reason the cute couple depicted in the cartoons had worked it all out.  If we just did what the cartoons told us, then love would be perfect.  Hmm.  In reality?  Not quite.  Well, should I say, it never worked that way for me.

Actually this cartoon series still continues today and in my research I found that “Love is… buying your girlfriend a domain name” and “Love is … letting your girlfriend choose your blog banner”.  Again, hmm.

I got thinking about that series when I was thinking about happiness.  I had been discussing with some people whether happiness was possible, especially in the middle of mental illness.  Now I’m no happiness expert, and I know there are many people who get paid extremely large amounts of money to surmise just what happiness is, so I’m not going to do their work other than to say what it is for me.

My introduction to what happiness is came pretty much from birth.  I was raised to believe that happiness was found once I had God in my life.  My conscious recollection of this comes from a song we sung in Sunday School back in the early 1970’s.  We knew the song as ‘Happiness Is…’

Happiness is to know the Savior,
Living a life within His favor
Having a change in my behavior,
Happiness is the Lord

Happiness is a new creation,
Jesus and me in close relation
Having a part in His salvation,
Happiness is the Lord

Real joy is mine,
 no matter if teardrops start
I’ve found the secret
It’s Jesus in my heart
Happiness is to be forgiven,
 Living a life that’s worth the livin’
Taking a trip that leads to heaven,
Happiness is the Lord

(By Ira Stanphill)

Even if your personal beliefs don’t fit with these words, have a look at it from the perspective of, say a five year old child.

I understand that I started at Sunday School at three, and so I would have been expected to sing this song from then, but I imagine the words might not have sunk in for a few years.  But when they did sink in, they were there to stay.  I haven’t actually sung, or heard, this song for probably 30 years but it didn’t take long for all the lyrics (word for word) to come back to me when I started think about it.  It would have been one of the earliest songs I ever learnt.

They’re what I would call nice words, but the message I got as a little girl, who had a few issues with self-worth even then, was that as long as I knew God I would be happy.  And even if I cried, I had Jesus in my heart and that’s all that mattered.  I know it is generalising, but that’s actually what I grew up believing.  It became my truth.  It was simplistic, but then what would I expect from a young child?  My knowledge of children is that they take things literally.

The problem was when things started to turn bad, I was left wondering what had I done wrong if I didn’t have that ‘real joy’ anymore?  To be honest, and it’s a whole other post, there were many similar things that left me asking the same question thanks to my years at Sunday School.  Eventually I concluded that joy, or happiness, was just not mine to have.  I just never was going to be happy.

After far too long of concluding that happiness was not mine to have, I’ve had a re-think and started to think about what happiness is for me.  A definition that actually means something to me, and is something that I can achieve.  Something that is possible within the midst of mental and physical illness, because I know only too well that feeling any joy in mental distress, let alone constant pain is difficult to identify with, let alone claim for myself.

It’s pretty clear to me that everyone has a view on what happiness is, and I don’t claim to have read nearly enough to have a firm grip on the general consensus.  Happiness is defined in the dictionary as:

a: a state of well-being and contentment

b: a pleasurable or satisfying experience (1.)

I found a definition that described it a little clearer for me in the Urban Dictionary.  It said (amongst other things):

“happiness is like peeing in your pants.  Everyone can see it but only you can feel the warmth”

Futhermore it also suggested such a thing as a Happiness Blip was:

“A moment of brief satisfaction in the midst of an otherwise unpleasant series of circumstances.”

There are mountains of theories about what happiness is.  Some say it’s a decision, others say it accepting circumstances as they are, others still say it’s a way of life.  That said, the moments of happiness, suggested by the ‘happiness blip’ is something I can live with.

I can have a moment of happiness, for example, when I spend time with my niece L.  Even if I am in pain, or depressed or angry, she has a way of lighting up the day for me.   Perhaps the real test for me is to take that moment with L and let the happiness last longer than just the time I am with her.

I love seeing the snow fall (it’s winter here) and my mood lifts as I watch the snowflakes fall.  The thing is that once I have to get out and clear the snow off paths, I’m not so taken with it.  That’s when pain and fatigue kick in, but if I can remember the happy part maybe it makes the whole thing easier.

With Borderline Personality Disorder (BPD) is far too easy to change moods.  One minute I might be happy and having fun, and the next I’m angry and hurt.  Somehow I need to learn how to take the ‘happy and fun’ and stretch it out.  It takes conscious effort but perhaps this is a way to help me even out my emotions.

Moments of happiness are manageable and realistic.  I don’t have to be on top of the world but I do have to take notice of what is happening around me.  Blink and I might miss it.  So I think that a decision to look for happiness in my life is appropriate.  Maybe it’s that first cup of coffee in the morning, or a visit with L.  Maybe it’s noticing a flower in the garden, or smelling the fresh, cut lawn.  They are simple things that make a difference.  But I have to be looking for them, and I have to appreciate them when I see them.  I hope then that I can carry those things over to parts of the day that don’t seem so good.

I always thought happiness was this permanent state of glee (and I’m not talking about the television programme).  It’s pretty hard, if not impossible, to find that in the midst of any illness, mental or physical, and so it doesn’t really work for me.  I thought God would make me happy, and that with him I’d always have a smile on my face.  That didn’t work for me either although let me be clear that I’m not knocking God, just the expectation I was taught.

In writing this post I came across many statements about happiness, but I think only one that really sat well with me.  I can live with this:

“Happiness is not a state to arrive at, but a manner of travelling.”

 – Margaret Lee Runbeck

Related articles

• Sustainable Happiness: Why It’s All About the Day-to-Day (psyblog.com)
• The secret to happiness. i found it, have you? (lif3asiseeit.wordpress.com)

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

Related articles

• Pain… 24/7 (infinitesadnessorhope.wordpress.com)
• When Emotional Pain Turns Into Physical Pain (fibrotv.com)
• Fibromyalgia: Information and Treatment by Rich Marsiglia (drbradshook.com)