Facing The Mundane Realities Of Chronic Illness

There are some things which are obvious about chronic illness, although admittedly when it is an invisible illness even those obvious things are hard to see and be aware of.  I don’t mean for this post to be a ‘moaning Maggie‘ post, so forgive me if you think I am heading there.  But this is on my mind.  With most posts I publish it is my desire that people read them (ok, I’m stating the obvious), but this time I admit that the shame involved in posting leaves me with mixed feelings.  Yes, I want you to read but yes, I am ashamed of what I say.

I read awhile ago that Fibromyalgia doesn’t kill you but you just keep getting sicker.  I don’t know if that is true, or another internet rumour, but this past year certainly seems to have been worse than before.  I feel a bit like fibro has become just one long line of flare symptoms, with little or no break.  My head seems in a permanent fog.

On Tuesday I have a small army of people coming through my house to do yet another assessment of earthquake damage left from 2010/11.  Yes, you’re quite right.  That was a long time ago but recovery takes… forever it seems.

They always promise ‘minimal disruption‘ but around ten people going over (and under and through) the house with a fine tooth comb is not ‘minimal disruption‘.  That’s ok though as I am just happy that someone is doing something.  Maybe one day there will be a decision on just what to do with my poor home.

From many of these assessments before, I am fully aware that they will see everything… including the fact that my house is not just untidy, but also unclean.  And yes, it’s got to that stage where it’s plainly obvious.  I am ashamed at the state of the place, but it has become like that simply because my fibro has been bad enough to prevent me from doing housework.  I also know , like a promised added extra, that when I actually get to cleaning it is likely to land me in bed for a week, simply from the effort involved.

So why am I telling you about my shameful dirty house?  Because if you looked at me you wouldn’t see a reason why I couldn’t have kept on top of it.  I look healthy.  I look able.  I look like there is nothing wrong with me.  Yet I can’t keep up with what is simply a small two bedroom house with only one person to mess it up.

I don’t have a lot of people come to my house usually.  I admit to being somewhat of a hermit.  I have no idea of what judgements those who have been here lately will have made of me.  There is always silence.  And uncomfortable silence where you wish to god that they would just say something.

Right now I am very aware of the judgements that this army of people might make on Tuesday.  Yet there is very little I can do about it.  I can hardly stop them at the door and say “BTW excuse the mess, I have fibro“.  I really don’t think they will care for excuses.  You see, I look fine and so the judgement will be made that I am fine, but lazy.

That old adage “don’t judge a book by its cover” applies in so many ways.  If you walk into someone’s house and notice it is unclean and untidy, stop to think that there may be a reason.  Most of us don’t choose to live in such a state, but some of us find ourselves having to.

You see, apart from when ten people are about to come through my house, I can kind of overlook the state of my home.  I don’t like it, and I would love for it not to be the reality, but my priorities are largely my health and my mother’s welfare.  After those, if I have no wellness and energy to deal with housework, it simply has to be as it is.  I’m learning to live with it, even though I will probably never like it.

It’s not just chronic physical illness that can prevent us from staying on top of such mundane tasks.  Mental illness can too.  Certainly for some people with mental illness, they can find it therapeutic to do those things but for others, it is simply too much.  For some, their illness can be affected by the state of their home, but for others illness almost keeps us from seeing the obvious.  Actually I have no difficulty in seeing the obvious today.

We need to find ways of being kind to ourselves.  I could choose to beat myself up about what I can’t do right now.  It would make sense as more than likely I am going to be judged by it shortly. But this time I’m trying not to get stressed.  If cleaning happens, it happens… and I’ll probably spend the rest of the week in bed.  If I can’t do it, so be it.  It won’t be the end of my world.

And now comes the big question… do I publish or not?  This is, afterall a post about housework and my unclean house.  Can I swallow the pill of shame in order to say out loud that this happens.  It’s real.  Actually I bet it’s real for many more than just me.  Maybe it’s not the housework.  Maybe it’s some other mundane reality of chronic illness.  We can talk about the illness, but there’s more to it than just symptoms.  There are all the realities of just keeping life going.  The best we can do for each other is to be real about them.

“When you argue with reality, you lose, but only 100% of the time.”

― Byron Katie

Who’s Going To Look After Me?

Who’s going to look after me?  Well, I guess that’s Me!

(If you’ve got this far then you’ve got the answer now, so if you choose to skip the rest of the post below, I’ll understand ;-) )

I live on my own and have done so for a while now.  Actually to many people’s surprise, I like it that way.  And I’ve learnt how to look after me, simply because there is no one else who is going to do it.  That means that I know how to do many things that others assume need two people.  Chronic illness (and low income) mean I know how to fend for myself with whatever is in the house, and whatever is missing.  Sure, sometimes it would be nice to have someone look after me, but I don’t need it.  And that is a huge advantage in my life as it is right now.

Today was one of those days where I woke up immediately knowing that fibromyalgia was here for a visit.  With an anthem of Beethoven’s Ode to Joy ringing in my ears (thanks to the still ever-present music hallucinations) I can’t say I was overly enthused about the day.  Played once is lovely but when it’s gone on repetitively for about 30 times, any music turns to beyond ugly.

Add to that, a feeling around my head that brain fog was back (oh yay!) and my body feeling the presence of a hundred rocks and shards of broken glass.  Nothing was looking good, although I don’t want to misrepresent things.  There are plenty of days which are worse, I just knew that today I needed to rest.  Otherwise bad would probably become worse.

As usual there were things that weren’t going to happen.  Perhaps most important (to J anyway) was that I wasn’t going to get my nephew’s birthday present wrapped and posted in time for his birthday on Saturday.  Sorry J.

And the usual support I give to another human being most days, was also not going to happen.  She’s used to this.  She doesn’t necessarily understand the existence of chronic illness in my life but she knows the consequences for her.  And that’s what matters in her world.

I rang and made my apologies.  Right now is the time I most need to hold onto looking after me.  It would be very easy to give in, regardless of how bad I feel, when I hear on the other end of the phone:

What About Me?

followed shortly after by

Who’s Going To Look After Me?

Those are really hard questions to answer, especially when you’ve had almost a lifetime of wonky learning that I have had to re-learn for myself with many hours of therapy and self-talk.  I should stick in right here that actually there wasn’t necessarily anything wrong with the teaching I got.  It simply wasn’t detailed enough.  You see I learnt half the message, and more often than not, failed to get the important part.  While I don’t have children and so I don’t know a whole heap about teaching them, it strikes me that many times something I needed to learn as a child was simplified so much that I entirely missed the point.

I’m not blaming anyone for this. It just happened.  I missed the point so many times, but I know many children taught the same lesson, got it.  Maybe I just learn differently.  Maybe I just needed more specifics.  Maybe… anything.  It’s simply that what I got in the way of teaching didn’t work for me.

One of the things I learnt, rightly or wrongly, was to put other people ahead of myself.  My lessons with Christian based and there is plenty in the Bible that I could misinterpret to believe (as a child) that everyone else was more important than me.  This isn’t a biblical post so I’m not going to get into what the lesson really was meant to be.  What matters is what I learnt.  Anyone on this planet was more important than me and I had to put their needs first.  It’s just a shame that no one realised how wrong I had got this.

While I’ve now learnt that I matter and that I need to take care of myself, the damage was done and in spite of many hours therapy, and many hours talking to the person who taught me as a child, if I’m not careful I still find my thoughts going back to putting everybody else first.  It’s nothing to do with selflessness either.  Just me not realising that my needs mattered.  Actually the line I learnt (from a Sunday School song) was “Jesus first, Yourself last and Others in between”.  It spelt J-O-Y and I was under the impression that I would be happy if I put myself last.  It is still very firmly stuck in my mind, and I have to consciously change my thinking.  It’s really no wonder that I ended up deeply depressed years later.

So today when the question “Who’s going to look after me?” came through the telephone I had to consciously stop myself from leaping to look after her.  I had to put my needs first, and I know that if I hadn’t it would be longer before I could be back to her.

Maybe it seems so simple, and I know there have been a few therapists in my time who didn’t seem to understand how much I had this stuck in my mind.  I guess when I learnt this as a child, even though I got it wrong, I held onto it.  Tight.  So much so that many years later, it is a constant battle in my head to change that almost automatic thinking.

Today I’m looking after me.  Tomorrow I will be too.  And for the third person in this post?  I left her with a few ideas of how she could care for herself today.

“If I had my child to raise all over again,
I’d finger paint more, and point the finger less.
I’d do less correcting, and more connecting.
I’d take my eyes off my watch, and watch with my eyes.
I would care to know less, and know to care more.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I’d run through more fields, and gaze at more stars.
I’d do more hugging, and less tugging.
I would be firm less often, and affirm much more.
I’d build self esteem first, and the house later.
I’d teach less about the love of power, and more about the power of love.” 

— Diane Loomans

 

Going Around In Circles

For a while now this song has been going around in my head.  My head has been going around in circles.  It’s getting tiring.  I just want it to stop.  I just want some clarity about what do I do now.

 

“Oh, Delilah Blue, what do we do now? What do we do now?
Magnolia memories fill my eyes and the sweet bird of youth done flown away
But don’t let anybody ever say
This old dancer never had her day
’cause this old dancer always knew we’d make it through, Delilah Blue.”

There is a growing amount of stress in my mind.  It’s caused by a number of things.  Health, wealth (or absence of it), family, oh and let’s not forget life in general.  Admittedly the first three are perhaps giving the biggest stress, and then because the stress grows inside my head, it eventually becomes a case of everything.  Everything has my head turning in circles, and it don’t feel too good.  It’s time to take some action on the things that I still have a little control over.  Maybe that will make the uncontrollable things seem less daunting.

Some of you might know that I started another blog recently.  If you didn’t know, it’s just that I hadn’t got to you yet.  For those that did know, the blog no longer exists.  I quickly realised that it wasn’t going to serve the needs I had.  Everything is now gone, so if you missed my most recent posts there, then you’ve missed.  Apologies if you think I messed you around.  That wasn’t my intention.  It’s just sometimes it’s easy to see that “this ain’t going to work“.  It didn’t.

For those of you who didn’t know I started a new blog, life goes on as it was.  In time, I may (or then again, may not) publish the material from there on here.  Meanwhile I’m still answering my question “what do we do now?“.

Back to the real purpose of this post though.  There’s one thing I really hate and that’s not being in control.  I spent years with an eating disorder all about that issue.  I couldn’t control aspects of my life so I chose to control how little food I put in my mouth and how many hours exercise I did each day.  So I know control has the potential to bite me (excuse the pun).  Not just on food though, I know it has the potential to destroy me… if I let it.

I seem to have little control over my physical health right now.  I have got into a pattern of going from (fibromyalgia) flare to flare, with nothing in between.  Where are the good days?  They don’t happen and still having not resolved the issue of pain medication, it isn’t fun and it’s doing my head in.

Wealth?  Well most of us have that issue don’t we?  Especially if having to rely on government welfare.  Especially having to face medical costs.  I guess I find winter even harder for the wealth issue, thanks for power bills.  A house that constantly leaks warm air (thanks for earthquake damage) is not helping.  I seriously considered this week shifting myself entirely into just one room of the house.  Impractical as it was, I was reminded of a children’s story I loved when growing up.  The main character broke her back and was shifted, bed and all, into the family lounge so that she could be part of the family.  Considering this for myself left me unsure whether I wanted to laugh or cry.  Anyway, I didn’t do it.

And as for family?  Sometimes, and more often than not right now, I feel exceptionally helpless.  I can watch but can do so little.  This week I have felt incredibly alone with this burden.  Loving someone but not being able to make it better, hurts like hell. And it seems like when I’m not there because of my own health, their health suffers too.   It’s a lonely road, and I know there are few answers that I can actually make happen.  I just have to be there, and often that’s harder than anything.  I guess my family had to watch me fade from their eyes for what was a very long time (thankfully I eventually came back).  I think what I feel now is a little like that.  Watching someone fade.

It hurts.

“Are the days of winter sunshine just as sad for you, too? When it is misty, in the evenings, and I am out walking by myself, it seems to me that the rain is falling through my heart and causing it to crumble into ruins.”

— Gustave Flaubert

 

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

These troops are on their way from Space as you read. http://upload.wikimedia.org/wikipedia/commons/3/3e/Teddies_in_Space.jpg By Cambridge University Spaceflight (University of Cambridge Department of Engineering) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

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

 

Flared

Today is day two of my latest fibromyalgia flare.  There seems to be less and less space between one flare to the next.  Actually I’d go so far as to suggest that I have had a bad case of brain fog (it usually partners a flare) for at least a month. I am shamed to admit that the other day I couldn’t do a three-year old’s jigsaw puzzle for the life of me.  My niece, L was keen for me to ‘participate’. I realised quickly that what she was after was for me to do the puzzle and she would ‘assist’.  Hmm.  The only problem with her plan was that I had absolutely no clue what I was doing. My brain was out to lunch.

Eventually L’s father, who was watching this, came to my rescue.  Brothers are so good… when they want to be.  Anyway he had the puzzle sorted in a matter of moments and while I quietly swore at brain fog, I was equally glad that L’s teenaged brothers hadn’t arrived home from school yet. They would have loved that Aunty Cate couldn’t do a three-year old’s puzzle.  They laugh enough when they have to show me how to use my phone.  If it’s not too late I might have to take out a confidentiality contract with L and her Dad.

But back to the flare. I’m used to these.  More often than not they spring up unannounced and unwelcome when there is something going on in my head. No wonder I get fog, there’s simply not enough space in my head.

Today has been Mothers Day here, and I admit it is always a difficult day for me. Last year I skipped the issue by being on the other side of the planet.  Not so easy this year.

I’m not a mother. Never have been, never will be. Aside from pets and the odd ( not that odd) teddy bear.  And don’t think I’m somehow mourning for the mother I am not. I’m not. I am perfectly satisfied with having opted not to have children.  Actually I am relieved I saw sense at another time when my brain simply wasn’t working.

What is difficult for me is my own relationship with my mother. Out of respect for her, I’m not going to go into details except to say that we have always had a difficult relationship.  We have impacted each other’s lives in ways we probably didn’t intend and possibly regret.   At this stage it is something that I don’t expect we can ever resolve for a number of reasons.  It just is.

Actually my mother, at 86, relies on me a lot now. A situation I would never have imagined, but then sometimes life has surprises for us along the way.  I am the person she most relies on, and just as that’s not easy for me, I don’t imagine for one instance that it is easy for her either.  We simply go on from day to day, doing what has to be done.  Personally I think that is more important than grand gestures.

But I draw the line at Mothers Day. It’s not the occasion itself but more the hype.  As we fill lives and screens with pink sparkly images of perfection… Me? I cringe.  Perfection is not always what is real, and it seems to me that we are more able to accept that not every father is perfect than every mother being less than the ideal.  The hype, drummed up by marketers usually, ignores what is real.

I don’t in any way want to be critical of any mother, including mine. I simply think we need to be real. Mothers Day for me today meant picking my mother up after her church service, as I always do, and then back to her home for a shared lunch. Mothers Day wasn’t mentioned.  If that makes me a cruel, heartless daughter, then so be it.

The cost, of course, for me bas been this latest flare. The rest of the day has been spent in bed in a lot of pain. I hope it will ease tomorrow.

“She preferred imaginary heroes to real ones, because when tired of them, the former could be shut up in the tin kitchen till called for, and the latter were less manageable.” 

― Louisa May Alcott, Little Women

Whatever Happened To Lucy?

Remember my post Lucy In The Sound Dome With Diamonds from just over a month ago?  Lucy (that’s me!) was waiting to see a specialist after being told she probably had a tumour being played out in music hallucinations.  Yes, that’s right, a tumour on either my ear drum or my brain.  I had a whole list of other symptoms which I had no idea whether or not they were connected.  Thanks to one of my brothers I finally found a way to be seen by a specialist.  This specialist was an Otolaryngologist (I can’t even say that, let alone spell it!), which means a Head and Neck Surgeon, including the better known Ear, Nose and Throat.

I admit that the night before my appointment I was perusing websites selling hats.  I had, by the time I had nearly three months of hallucinations, convinced myself that I was going to need surgery and what’s more I was going to lose my hair.  All of my hair.

The good news is I’m not losing my hair, but I have decided that hats would be a good look for winter (fast approaching) anyway.

Instead of answering the question I desperately wanted to know, the specialist started off on what I thought were the minor but annoying symptoms – dizziness, nausea, loss of balance not to mention more dizziness again.  I could hardly stand up straight.  By looking at my eyes (it’s a while since anyone has been looking into my eyes!  He had to stand on his tip toes to do so.) while dizziness was induced, he could apparently tell that something was going on with my ears that usually happens after brain injury.  No brain injury here and he couldn’t tell why it had happened to me.  He simply manipulated my head in all sorts of strange directions and sent me into a spin like no spin has ever been.  I admit I swore…  the room was spinning so fast.  He ignored my colourful language and insisted that I keep my head where he’d left it for another 20 seconds.  Easy for him to say.  …and apparently it was fixed, as long as I slept half sitting up for a couple of nights.

But onto the important stuff.  The supposed tumour.  He had an old MRI from a few years ago which apparently told him I was tumour free. It’s still beyond me how an old MRI can tell him how I am now, but the fact that I didn’t have to fork out for another MRI was good.  And he gave every impression of knowing what he was talking about.   He seemed to be one of those doctors who are very knowledgeable but a lacked a little in terms of sharing that knowledge with the patient.  Actually he appeared to be getting tired of my questions, but for the money I was paying why shouldn’t I ask a question or six?

That’s the good news anyway, and don’t get me wrong I am very happy to be tumour free.

But the bad news now.  It may seem like there could be no bad news. After all, tumour-free is fantastic.  But I still needed an answer as to what was causing the music blaring in my ears most hours of the day.  It might not sound that bad to you, but it is like a form of torture and my biggest fear was that I would be told I just had to live with it… forever.

The music hallucinations are apparently being caused as a side effect of the pain medication I use for Fibromyalgia.  It has taken two years to find a medication I could use (in this case, Codeine), and now I can’t use it.  What’s more he was quick to add that the only other pain medication I had been able to use (Tramadol) is also likely to cause the same side effect.  In other words, I can’t use either.

Understandably the specialist wasn’t an expert on pain and so has sent me back to my usual doctor to work out what I do now, but it looks very much like I am back to only being able to use over-the-counter medication,  which does nothing.  Lucy is not happy.

Do I want pain?  Or music?  That might seem easy, but I don’t want either.  Maybe I’m expecting too much.

At least I don’t have a tumour.  At least I am not going to lose my hair.  But nor am I going to lose the pain or the music.

But hey, I bought a couple of hats!

“He took his pain and turned it into something beautiful. Into something that people connect to. And that’s what good music does. It speaks to you. It changes you.” 

― Hannah Harrington, Saving June

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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

Prescriptions And Privacy

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

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

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

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

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

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

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

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

Gotta love doctors (and counsellors) like him.

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

― O.R. Melling, The Summer King

Being Heard

ISOH Ear

It’s amazing how some of the most simple words can have such an enormous impact.  I think it is a fact that we all too often forget, or pay no heed, but Anna Rose of Rose with Thorns wrote a comment on my last post.  It was, exactly what I needed.  She said that she had heard, as other readers would have.  Being heard is one of those things that simply makes everything better.  Someone has heard me.

The post I wrote was not full on detail and that’s just the way it had to be in order to protect other people’s privacy.  I know that when I do that, it is going to be difficult for readers to fully grasp what is going on in my world.  I nearly deleted the post simply because I knew I couldn’t say what would make my pain make sense to the reader.  But there are lots of times in blogging, and in life where what we say might not make sense to the reader.  That’s okay for me.  For me what I need to know is that someone heard.  And Anna Rose, probably without realising how important it was to me, told me very simply that I had been heard.

When I think about what I most want to achieve in blogging, it is to be heard.  That someone has heard the thoughts I haven’t been able to speak (often) in my own world.  I don’t need you to agree with what I say.  I don’t need advice even. I don’t even need you to understand what I say.  Unless you have been through exactly the same experience, you can’t possibly understand exactly what I am going through.  All you can do is try to understand…  but we all know how limiting that can be.

“Being heard 
is so close to being loved 
that for the average person, 
they are almost indistinguishable.”

― David Augsburger

I came across the quote of David Augsburger above and asked myself whether being heard is the same as being loved.  For me, I don’t think so and that is because so often the people who come out of the blue and indicate they heard me, are not the people I would expect to be loved by.  So often for me, it is an almost complete stranger who will tell me I was heard and will make that big difference for me.  So often complete strangers will get it.

That said, if someone who loves me, also hears what I say, then that kind of seals the deal in some ways.  It is after all, what we often want from the person who says they love us.

I think too often we listen with the intention of understanding, and while that is an admirable wish, it seems like something that usually we won’t ever achieve.  Unless we walk in the world of the person we are listening to,  Unless we experience the same hardships and the same stressors, then it will be very difficult to understand entirely what they tell us.

I would rather someone listening to me, ensure that they hear what I say.  I don’t expect people to understand what, for example, my mental illness is to me.  They probably won’t because while others have the same collection of diagnoses, they don’t have the background I bring to it.  Their experience of that mental illness is going to be different, although admittedly sometimes similar.  If they are too busy likening their experience to mine, they are likely to miss exactly what I have said.

Stephen Covey said we listen to reply.  I think there’s truth in that.  We listen, and as we do we’re thinking of what we will say next.  By doing that, you’ve missed exactly what I said.  And that piece that you miss might just be crucial (to me) that you hear.

This doesn’t just apply to mental illness though.  Take for example physical illnesses which are often very difficult to understand if they are what is termed invisible illnesses (where you can’t see the evidence of the illness).  Because you might not have the same illness and symptoms as me, I don’t expect you to understand how limiting my pain is.  I’m way past the point of needing people to understand the nerve pain associated with my fibromyalgia (unless you have the same illness in which case we might have the same symptoms).  But what makes the difference to me is when you hear how this is for me.  I don’t expect you to take it away.  I don’t even expect that you will understand how that nerve pain feels.  I just want you to hear how it is for me.

I suspect that is a common wish for us all… to be heard how it is for us.  I suspect if more of us had that in our lives then there would be more acceptance of our individual burdens, there would be more sense of togetherness, and actually I’m sure it would result in less suicide and less mental distress.

Being heard made a difference to me in something that I knew most people would not understand the detail, because most people simply haven’t had that specific experience in their life. You don’t need to understand me.  You probably won’t.  But if you’re prepared to listen and hear, that’s enough for me because I, and my words are now valid.  Thank you for hearing.

“Listening is the most dangerous thing of all, listening means knowing, finding out about something and knowing what’s going on, our ears don’t have lids that can instinctively close against the words uttered, they can’t hide from what they sense they’re about to hear, it’s always too late.” 

― Javier Marías, A Heart So White

Play Nicely With The Other Kids

As a child I am sure I was told by my parents on many occasions to ‘play nicely with the other kids‘.  And that’s what I did.  Mostly.  I wasn’t one of the popular kids in the playground, but was one of the next tier down.  The middle of the road kids who were okay.  I had lots of friends, no real enemies except for the one class bully, and even her, I tried to be friends with.  I guess I wanted to be friends with everyone, rightly or wrongly, and pretty much, I achieved that.

It’s not an easy task to get along with everyone, and now to be honest, I wouldn’t be so open.  Now I’m more selective, but as I child I did what I was told to do.  What’s more, at that time as a young girl, I didn’t have a mental illness that contributed to how I ‘got along‘.  Now I do.

You don’t have to look very far on the internet to come across the sites that talk about what awful people those of us with Borderline Personality Disorder (BPD) are.  Those sites, which I’m not going to quote or name, will tell you that Borderline’s are really hard work to have in either your family or circle of friends.  Actually they probably warn you not to have Borderline’s in your circle of friends.  And do what you can to distance them from your family.  They’re simply too much work, and you’re just going to get hurt.  Sites by health professionals are also in abundance telling you that Borderlines are the worst patients you could have, and actually if you are a health professional, those sites would probably just tell you to steer clear of us Borderlines.

Those sites are ones that I purposely avoid, as they simply contribute to the large amount of stigma that exists toward Borderlines.  And actually, that is not what we need.  Apparently we have low emotional intelligence.  We are also impulsive and  aggressive.  We act like children and we are very sensitive to rejection.  Basically we are too hard work, and as a non-Borderline you would probably best to run a mile (or 100 miles) from us.

I’ve been aware of those attitudes to Borderlines for a long time, but have wondered how much of that I am seen to fit with.  I know BPD is a difficult illness to live with (for the person who has it!) but I’m not convinced there is the need for such strong feeling towards us.

I know that I don’t fit the classic mold of a Borderline.  My psychiatrist would go as far as saying that possibly I don’t have BPD.  I can’t afford to keep visiting psychiatrists until I get a definite answer, but so far BPD does seem to fit for me.

But while I played with everyone in the playground, and in my early adulthood was referred to as being a ‘people person’ who got on with anyone (and I mean anyone!),  now I start to wonder.  I’m too much of a recluse for a ‘people person’ anymore. I prefer my own company, and my own world.  I am an introvert naturally, but more and more I prefer being alone.  There are lots of reasons for that, and I admit that one is to do with repeatedly being let down by other people.

The people around me in my life actually don’t seem to want to be near me.  I’m not feeling sorry for myself, or having a pity party.  I just don’t get on with people as well as I did.  And those in my life seem more interested in distancing themselves from me.  We just don’t fit anymore.

Earlier this year I was victim of some lies told about me.  It was a situation where there was very little I could do about it.  I simply had to let it be, and hope that people worked out the truth in time.  I became quite paranoid, mostly because I didn’t know who had been told the lies.  I became very wary of people.  Another reason to withdraw, and I admit I found it hard not to do so.

I continue to be wary of people.  It’s hard to know who I can trust, and it’s hard to know who would choose to be on my side.  Would they bat for my team?  Somehow life has changed so that the people I thought would bat for my team, I suspect won’t anymore. And that is rather sad to find that those I thought would always be there have different lives and lifestyles from me, and we just no longer fit.  Time changes.  And time has changed me.  I choose to be alone, so much more than I did.  My own world knows my name, and I can be content there.  Can’t I?

Has BPD changed me?  Have the events in my life changed me?  Maybe it is the other people themselves that have changed, but then it’s always easier to blame the psych patient, isn’t it?  I don’t mean to accuse anyone of anything in this post, but rather I simply see that there has been a radical shift in my life.  I’m actually okay with the solitude I have now, but I do wonder what happened to the little girl in the playground who was friends with everyone.

“I live in that solitude which is painful in youth, but delicious in the years of maturity.” 

― Albert Einstein