For Her Sake Or For Mine?

World Alzheimer’s Day – 2017

I haven’t been blogging much lately. It’s not because I haven’t wanted to. I have. And generally, I still have a lot to say.

But my brain isn’t functioning too well, and it gets in the way of getting the thoughts (and feelings) from my brain onto my screen. I start plenty of posts but they simply don’t end up saying what I want. And so I don’t even start to write. It’s easier that way because as a writer, there isn’t much worse than not being able to get the words out. Don’t mistake this as writer’s block. It’s not.

The problem I have is called brain fog (aka cognitive dysfunction) and I currently have two chronic medical conditions which make this a daily reality. Then there are several medications I take which contribute to the severity of my brain fog. And let me just say for those who have never had it, that the term ‘brain fog’ drastically underestimates the issue.

It was only a few days ago that I tempted the derision of another by raising the issue with my doctor (again). My brain fog has been so bad lately that I feared some type of permanent brain injury had somehow taken place, or perhaps even early-onset Alzheimer’s Disease. (There’s enough Alzheimer’s Disease in my family to know that it could well be a reality for me some time ahead).

My doctor told me to take a multivitamin. There is a lot I could say about her response, but I won’t because well, this post isn’t about her.

Regular (yes, I realise there has to be something to read to become regular) readers will remember that my mother lives with Alzheimer’s Disease. You can read previous posts that address this aspect of her, and my life here and here, as a starter. What’s important to know is that World Alzheimer’s Day is important to me. It’s right up there as far as awareness days go. Not just because of my mother’s current fight, but also the past fights of an uncle and my maternal grandmother, and of course, that one day this may well be my fight too.

Mum has been living in a secure facility directed at dementia care for nine months now. In that time, I have witnessed her fight become more intense. I have watched as she now struggles to recognise anyone but me. Sometimes she knows I am her daughter, but other times she is adamant I’m not her daughter, and that instead, I am a long-standing friend. Then other times I’m not altogether sure just who she thinks I am, except it is clear that I am of meaning to her. Only a couple of times have I got the sense that she had no idea who I am. Yes, all of that leaves me sad. I am grieving for someone who stands in front of me.

All of that leaves me thinking about why I do what I do?

Why do I spend time with Mum most days, often while I am in a great deal of pain, and often when brain fog is leaving me struggling to even speak with her (and/or the staff)?. Why is it important to me to be there for her, regardless of what physical, emotional or mental toll that has on me? Or simply when I could be doing something else?

I am the only person in her life that she actually recognises now. I find this terribly hard. Each time I have the realisation that she doesn’t recognise someone, it hurts. Each time she tells me she doesn’t remember being married, or the man she was married to, it hurts. I find that one particularly painful, simply because she was married for 53 years (to my Dad) and her brain has shut out all those memories.

But I have a unique opportunity to attempt to keep those memories alive, whether that maybe in telling her about aspects of her life, or simply keeping the memories alive in me. I can do that for her. And I can be her voice in a world she finds increasingly bewildering.

Imagine if you knew only one person. That person would be so important to us, and we would probably rely on them a great deal. I would hate for my mother to not have that one person, and so I do what I do for her sake. For her sake, to have a person in her life.

Realistically though, I know there will come a time when she no longer recognises me, but I am determined to be there anyway. Determined to be that person for her, even if/when she isn’t aware.

The truth is though, that I do what I do for me too. A year or so ago I would have told you that I am there for Mum for the sake of my late father. Doing what I thought he would want. But I know now that I also do it for my sake.

I have never had a good relationship with Mum. Actually, we now have the best relationship we’ve ever had. This is my opportunity to have a relationship with my mother. It might not be the sort you would hope for, but we have a connection. It is unique, it is largely one-sided, but it is something I have never had.

I’m not making up for lost time, but rather simply having what I am fortunate enough to be given at this time. Perhaps neither of us were ready for a relationship before, but now we both benefit. It is for her sake, and for mine.

And with that note, I will take my multivitamin (because I’m just a little scared not to).

Thanks for reading

 

Cate

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

 

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

 

Something Better Than Today

Every few months I get a little bit desperate.

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

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

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

…and so anything will do (almost).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

― Alison Lurie, The Last Resort

Beating Myself Over The Head With a Hammer

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

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

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

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

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

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

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

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

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

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

Being Compassionate To Myself

Ted 002

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where Is My God When It Hurts?

Last week I wrote about struggling to find hope in the midst of the chronic pain and fatigue of  fibromyalgia (see Fatigued Hope). I admit I’m still battling this one. I don’t think there is a simple answer, yet I am frustrated by having previously written about hope, but not being able to find it to apply in this situation.

A number of people commented, in relation to that post, that I should perhaps look to my spiritual beliefs. Hence my question: where is my God when it hurts? The question is phrased as it is because I believe that spirituality is an individual thing, and as such where your God is when I hurt is not actually of much significance to me. It is in terms of how you might find comfort in your trials, but for me personally, it only about my perception of who my God, or higher power, or whatever I like to call it, is for me.

When I google the question ‘Where is God when it hurts?‘ I find that Google kindly has about 95 million responses for me including a book title, by that name, by a Philip Yancey… which I’m sure my father owned.  I suspect I would have come across it as I dealt with Dad’s enormous collection of books after his death.  Maybe I should have stopped to read it, although I would have been there forever if I had taken that approach to every book that caught my eye.

Quite frankly the answer to all my questions was probably in my garden shed (that’s where Dad kept his library), or maybe I could say right under my nose.  What’s more, if my father had been alive, he would have been quick to answer my question for me.  He was, after all a Christian minister, well versed in theology and my blief in God is based on the Christian god figure (although not some of the organisational aspects of churches).  But even if he had been here, that would have been his answer, not mine.  And I suspect I would have been still wondering.

The reality I learnt long ago is that other people’s views on spirituality actually don’t answer my questions.  They might provide the answers for them, but I have to find my own answers.  So I’m not even going to bother with Google’s suggestions, or what I know would have been Dad’s.

I believe that religion  serves a different purpose for each person.  Nothing is right or wrong, as we are each different people with different needs.  My own beliefs form a basis for how I treat other people, and I think I’m slowly forming a means of how I treat myself.

Translating that into hope in spite of trials is not something I have yet achieved.  Oh, I was trained well and can quote a million Bible verses at myself about having hope and trust in the God I was brought up to know, but that doesn’t actually cut it for me in terms of finding purpose in my suffering.

I find it incredibly frustrating when I am told that everything happens for a reason.  Maybe it’s true, maybe it isn’t, but it seems an incredibly cold way of comprehending, and giving reason to why some people suffer so much.

This posted started in terms of my own struggle with pain and fatigue.  I know that it is nothing compared to what some people suffer each day, and actually in that I can find a little peace for myself.  I can be thankful for what I have and have not.  But I will find it incrediblyy annoying and frustrating if you tell me to find joy in my pain, just because my Bible tells me to.  It just doesn’t work that way for me.

A book that I have found useful over the years, mostly to dive in and out of because I have yet to read it cover to cover, is Harold Kushner’s When Bad Things Happen To Good People.  I like this book because it is written by someone who has had plenty of bad things happen.  He knows suffering yet he still somehow believes in who he sees as God.  Here is an excerpt:

“I have to believe,” one friend said, “that everything that happens in life, happens for a purpose.  Somehow or other, everything that happens to us is meant for our good.  Look at it this way.  You were a pretty cocky guy, popular with girls, flashy cars, confident you were going to make a lot of money.  You never really took time to worry about the people who couldn’t keep up with you.  Maybe this is God’s way of teaching you a lesson, making you more thoughtful, more sensitive to others.  Maybe this is God’s way of purging you of pride and arrogance, and thinking about how you were going to be a success.  It’s his way of making you a better, more sensitive person.”

 Harold Kushner – When Bad Things Happen To Good People  (p. 30,31)

It’s a pretty common way of thinking.  Suffering is God’s way of teaching us a lesson and making me a better person.  Me?  I hate it when I am told that.  Everything in me gets angry because I think things like ‘What was wrong with me before?‘ and ‘Why do I get this lesson in suffering when others get off scot-free?‘.  Oh, and,‘Why does God hate me so much?’

That frame of thinking is easily said to another person (sadly) but for me it makes God into a hateful , hurtful and vengeful god.  And that’s not who my God is.  My God doesn’t want me to be hurt, and has great compassion for me and all others.  If it works for you, that’s great but it doesn’t work for me.

Having said that, I know what doesn’t fit for me but I still have no answers in terms of needing to find hope in chronic illness.  I still need to find some purpose to it, and I still need to find a way of accepting it as my reality.  Some years ago I came to the point where I could accept my mental illness.  It’s not that I liked it, but I could accept that it is part of me and what makes me who I am.  I can even see some purpose to it in terms of sharing my experiences hopefully in a way that will encourage others.

But accepting the physical illness is not easy for me.  I’m struggling to find purpose in day after day of pain and fatigue.  I struggle to live with it because my life becomes so impaired by it.  I also struggle with the invisible nature of it, which means that people around me assume and expect me to do more than I am physically capable of.  Yet I want to be able to do those things.  I don’t want to be so limited, but I also need compassion from people.  If I accept these illnesses and the chronic nature of them, I feel like I am giving in to them.  I don’t want to do that.

So where is my God when it hurts?  Actually I’m not sure.  Quote the Bible at me, and it will leave me cold.  I know all that in my head, but my heart struggles to find personal purpose and hope.  I admire people who are able to take their faith and apply it to their current situation, but right now that isn’t working for me.  I guess I’m still a work in progress, and I hope my God treats me gently.

I finish with something my mother used to say to me when I was young.  I had no idea what it meant, but somehow it’s still stuck in my mind.  She just used to quote the first part.

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.

 – 1 Corinthians 13:12  – King James Version

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

Honour Thy Parents

English: "Honor thy father and thy mother...
English: “Honor thy father and thy mother, that thy days may be long upon the land which the Lord thy God giveth thee.” Exodus 20:12 (King James version), illustration from a Bible card published by the Providence Lithograph Company (Photo credit: Wikipedia)

Recently I’ve started to wonder what this is all about when we are instructed in The Bible ‘to honour thy father and thy mother’.  While I’m not sure that I’m going to reach a definitive answer, I am realising that I get a clearer impression of what it means as I age, and as my parents age.The place I learnt this instruction from as The Ten Commandments.  They were one of the first things I learnt at Sunday School as a child, and I remember having to be able to recite them.  I even at a silver charm bracelet which had 10 charms representing each commandment (in a shortened form).  What I learnt as a child included the reason why I should do this.  The commandment in Exodus 20: 12 says:

“Honour your father and your mother, so that you may live long in the land the Lord your
God is giving you.”

Actually even when I looked at the whole commandment I still never really knew what it meant.  I assumed I would die young if I didn’t honour my parents, but then I was never sure what honouring meant anyway.

The Free Dictionary defines the verb honour (or honor) as:

vb (tr)

1. to hold in respect or esteem
2. to show courteous behaviour towards
3. to worship
4. to confer a distinction upon
5. (Economics, Accounting & Finance / Banking & Finance) to accept and then pay when due (a cheque, draft, etc.)
6. to keep (one’s promise); fulfil (a previous agreement)
7. (Performing Arts / Dancing) to bow or curtsy to (one’s dancing partner)

Even from there, it’s not very clear exactly what is meant.

My mother will be 85 in a few weeks, and my father died suddenly, at the age of 76, in April 2011.  A number of things since his death and even in the couple of years before Dad died have led me to realise that we adult children have a responsibility for our elderly parents.  I guess the issue for me is how does that apply to me and my family.  That time appears to have arrived.

Early this year (before I started blogging) I published an article about my father’s death and how that related to the Christchurch Earthquakes of 2010/11.  A member of my family was very upset with what I wrote, and said I had dishonoured both my father’s name and our family name.

I was pretty upset by that accusation and had to do some serious soul-searching.  Even though I wasn’t totally sure what was meant by the word ‘dishonour’, I was mortified at the thought that I might have done this.  My father was very special to me, and I would never have wanted to put something bad on his name.

Eventually I decided that what really mattered was what my mother felt about what I had written.  Actually she was happy with what I wrote, and so I concluded that while I would have liked to, it’s just not possible to please all the people all the time.  As long as my mother was at peace about what I wrote, and she felt that Dad would have been okay with it, then I wasn’t going to lose more sleep.

I don’t generally write a lot about my mother in my blog for a number of reasons.  Firstly some people who may follow my blog are friends/family/people who know her personally.  It’s simply not fair on her for me to be  saying all kinds of things about her in that case.  She is also a very private and reserved woman.  If she wouldn’t be saying these things, then I don’t feel it’s my place to say them either.

And finally Mum and I have never shared a close relationship.  Anything but.  Our relationship has always been strained, for as long as I can remember.  We are simply two very different people, although my brother reminded me recently that we have some similarities (which I wasn’t so sure I wanted to know about).  I guess that’s family for you.

All that said, she is my mother, she is ageing, she is now widowed and alone, and I am the family member who is physically closest (just five minutes down the road) and the one who has the time and perhaps inclination.  That has been the case now for the past 10 years so we have already been through a lot.

At the moment my mother needs support from me and it looks like that is going to increase significantly in the coming months ( contact me directly if you need that explained).

I don’t have a problem providing the support she needs because to me, that is what honouring her is about.  It’s also about honouring what my father would have wanted me to do, and perhaps because I was closer to him, that is the stronger thought right now.

My therapist and I fall apart at this point because he considers that I’m trying to replace my father.  I’m trying to be a husband for my mother.  I don’t agree.  I simply see a woman who raised me, had a husband for 53 years, and now finds herself alone and with failing health.

Dare I say it, I expect it will all go down hill from here in terms of her ability to maintain her independence and mobility.  Quite frankly, it puts me off old age.  I see what she faces and I see what some of her friends and relatives face, and I’m inclined to think I’m not interested in being old.  Perhaps I’m not meant to say that, but hey, I’ve said it.  I’m sure I’m not the only one with elderly parents who is thinking the same.

What I have yet to work out is how I honour my mother (and my father), and provide the support she needs while still looking after my own physical health and needs.  I suspect that is actually going to be the biggest battle.  The past few days have not been easy because I haven’t been well, but Mum  needed me.  But it was manageable and we have got through.

I’m also not sure how I protect my mental health through this, although I am fortunate to have a couple of close supports who are simply wonderful.  It’s difficult though, because our relationship has always been rocky and often my mental health has suffered.  I can’t afford for that to happen.  If I don’t maintain my own health, then I won’t be able to be there for her.

I’m wondering though, what do you think honouring your parents means?  And how do you do that, if it’s at all possible, when your parents have caused you harm in the past?  If honouring your parents isn’t important to you, how do you view your role in their old age?

“I want to grow old without facelifts… I want to have the courage to be loyal to the face I’ve made. Sometimes I think it would be easier to avoid old age, to die young, but then you’d never complete your life, would you? You’d never wholly know you.” 

―    Marilyn Monroe