Limitations

Image via boulderpainrelief.com

I’m learning that I don’t like having limitations placed on me.  If I am told I can’t do something, I want to do it even more.  I have limitations placed on me now thanks to fibromyalgia, which has left me with chronic pain, fatigue and it being seemingly impossible to get enough sleep.  I hate it.  I used to love the occasional excuse for an afternoon nap but everyday?  It loses its attraction.

In the past couple of years I have been slack in the physical exercise domain.  There are reasons for that:  I couldn’t afford a gym membership, my knees were too damaged by running and well, I just find it hard to leave the house and even walk down the road.  It’s illogical because I know that no one is really going to care what I might be doing as I walk/run down the road but it’s like home is my safe haven and it’s just hard to breach its boundaries.  I have good reasons for not feeling safe although I admit that perhaps it is time to let go.  Mostly I have learnt to overcome my issues, but leaving the house is still one I struggle with.  Another difficulty is that my history is such that I get into a regular routine of exercise and I can’t stop.  I over-do it.  I have done this so many times that sometimes it just feels easier to not go there at all.

But now I have this thing called fibromyalgia and I’m told to exercise.  So I walk one and a half kilometres, and later get told that was too much.  Too much?  Are you kidding?  Sadly not.  And here is my problem: I suddenly find I want to run marathons.  Even walking one would do.  I’ve been told I can’t and that just triggers me off to want to climb mountains.  Put limitations on me and I will achieve amazing results, although not necessarily the desired results.  Except this time I can’t do much.  I know there are forms of exercise I could try but that’s not the problem.  The problem is I hate being told I can’t do something.

Next is a pattern that I have got to know so well,  a downward slide into depression.  It happens out of frustration.  I can’t do what I think I want to do so I decide that this is my fate… and I hate that too.  I start to withdraw and it becomes harder and harder to put myself out there amongst my friends and family.  I expect that they will be thinking I should be able to do more too, so withdrawing avoids having to listen to their criticism of me.  Let me be clear though that on the whole it is not their criticisms I have to fear, but my own.  I am vicious – on myself.

Image via grant_margison.com

Somehow I feel like I’m at the top of a very tall cliff.  Those on the west coast of New Zealand, like seen the movie ‘The Piano‘ with Sam Neill and Holly Hunter, spring to mind.  The land drops away to the beach very quickly and there’s no forgiveness for mistakes.  I am at the top and stand near the edge on damp, long grass.  Damp perhaps due to the night dew or maybe the sea mist that is rising from below. One false move and I slip.  I slide feet first down.  Because it’s dark I can’t see where I’m sliding until something allows me to come to a sudden halt.  The weather has closed in and I can no longer see how far it is to the bottom of the cliff, if in fact I might have already got there.  I rest… safe in the knowledge that I’m no longer falling.  But I can’t completely rest because maybe I am just on a ledge that might give way any minute.  And then I will plunge further into darkness and despair.

That’s depression to me.  I’ve been down that cliff face many times before so I know how it feels.  My biggest task for now is to step away from the edge.  Sometimes it’s possible to actually stop the fall before I slide, sometimes it isn’t.  Let’s hope this time it is.

And to lighten my mood, as well as yours, I’ll finish with this.  Why not aim for something better, flying through the air rather than wallowing in the pond scum?

Image source unknown

Playing Tag

Image from allaboutlemon.com

I used to hate playing tag as a child.  Running madly around the school playing fields was not my idea of fun because I wasn’t one of the sporty kids and I would be tagged early on.  What’s more, it didn’t seem fair to me that the same kids always won.  So while I know playing blog tagging is different, my first thoughts when Kevin from Voices of Glass tagged me, was of a groan of here I go again (instead of the cartoon’s Whoaa!).  Not completely rational but just a reminder of the sometime unfairness of youth.

That said, I am here.  The rules of tag are:

  • Post the rules that are a part of this game.
  • Answer the questions the tagger set for you in their post, and then create eleven new questions to ask the people you’ve tagged.
  • Tag eleven people and link to them on your post.
  • Let them know you’ve tagged them! (but of course).

Firstly I am not going to tag anyone at the end.  Yes I am breaking the rules but I still want people to like me (just can’t get away from that need sometimes) and if I keep making awards or tagging, I will soon have the thought that people are sick of me.  So apologies if you unlike me and just desperately want to be tagged.  I am sure someone else will be along shortly to tag you.

Okay, so Kevin’s questions follow:

1.  What is your favorite mini-series?

It’s an old, soppy Australian one for me.  The Thorn Birds.  There’s nothing wrong with an old romance once in a while (just don’t give me too many).

2.  What song is currently stuck in your head?

I hope you Dance‘ by Lee Ann Womack

3.  Who’s one guy and one girl you have a crush on? You must choose one of each.

Okay now this is getting the brain cells pumping.  I’m sure I’m too old for this but I’m going for a younger than present Robert Redford and Catherine Zeta Jones.  So many choices, so hard to choose.

4.   If you got to choose any occupation you wanted and money wasn’t an issue, what would you choose and why?

I’d be a cross between an aid worker and a print journalist.  Why?  Because every day would be different and I would feel like I was making a difference (see below).

5.  When you’re using numbers to make a list, do you put periods, parentheses, or something else (if so, what), after the numbers? Why do you think you have this preference?

Can’t you tell?  I use periods! Period.

6.  What sorts of books do you like to read, and why?

Like my choice of music it’s varied and it’s easier to say what I don’t like.  I can’t stand Fantasy and Science Fiction.  I just simply don’t get what the point of them is.

7.  You’re driving for at least four hours by yourself. You don’t have a CD player, and you can’t hook up your mp3 player or smart phone to your stereo. How do you occupy yourself?

This is easy but it comes with a warning that you might decide (if you haven’t already) that I am completely bonkers.  It’s okay.  I am.  Anyway back to the question.  If I was driving anywhere for four hours I would have my favourite teddy bear (Ted) with me in the passenger seat and he and I would be holding a very animated conversation for at least the length of the trip.  Who needs music?  PS.  This picture is not Ted.

8.  Do you believe in anything supernatural? If so, what?

Yes.  Where do I start?  I believe in God, as in the God that Christians believe in but I believe in other stuff too.  I believe that everyone has their own beliefs about this stuff and that’s okay with me.  I believe in spirits, but admit I don’t understand them.  I have just seen enough and heard enough to believe that they are real and powerful.  I’d like to understand more but I admit I’m a little scared to go there.

 

9.   Why do you visit Kevin’s blogs?

Because I like them.  I learn and I’m entertained.  I guess that’s what I expect from a blog.

 

10.   If you have a smartphone, which 5 apps do you use the most? If you don’t have a smartphone, why not?

I do have a smartphone but regard myself as somewhat of a beginner.  My nephews (aged 14 and 12) had to teach me how to use it and just hoped I would get so frustrated and donate it to one of them.  It didn’t happen and I’d point out that they didn’t own phones but still knew how to use mine.  Huh!  As for Apps, now I’m struggling.  WordPress is there and a NZ (news) site Stuff.  Apart from that I have no idea.  Actually I’m still quite tempted to trade the phone with my 16 month old niece.  She’s got a lovely, bright coloured one that makes all sorts of exciting noises – and is SO much easier to use.  It might not fit in my pocket but it would be cheaper.

 

11.   What is the most important principle for you to live your life by, and why?

Image source unknown

I don’t have just one principle that I live by but a collection around empathy, tolerance and not judging another.  Also, making a difference is important to me (no matter how small or large that might be).  This story sums it up for me:

“An old man walking along a beach at dawn noticed a young man ahead of him picking up starfish and flinging them into the sea. Catching up with the youth he asked what he was doing. “The starfish will die if they are still on the beach when …the sun roasts them with its mid-morning heat,” came the answer. “But the beach goes on for miles, and there are millions of starfish,” countered the old man. “How can your effort make any difference?” The young man looked at the starfish in his hand and threw it safely in the waves. “It makes a difference to this one,” he said. “
                                           – Unknown

Cost Benefit Analysis Ramblings

This fibromyalgia thing is doing my head in.

Every day I am trying to gain more knowledge about this illness that has hit me like a 10 tonne truck.  It doesn’t help that I am in pain, I am more exhausted than I thought possible, and sometimes my brain just seems to turn to mush… without warning.  I’m wondering why I get out of bed in the morning, especially when the mere act of getting out is both a war on the fatigue but also a revelation of what is going to be painful today.  I know enough that anyone with fibro struggles with this every morning but I also know that if I don’t get myself out of bed I am quickly going to slide into a deep hole of depression.  And I don’t just mean a bad day where I feel sorry for myself.  I mean the chronic depressive disorder I have faced so many times before.

I think what is hardest right now is knowing who to listen to, who to believe and how to work out what is right for me.  Since my diagnosis a few weeks back I have been repeatedly told by health professionals that physical exercise will help.  Interestingly that’s about the only thing they have been able to tell me, apart from telling me that I can’t have any effective medication for it and that I should simply accept a life of codeine addiction.

What is confusing is that when I talk to anyone who has fibro I am told exercise causes pain.  And now I have worked that one out for myself.  A few days ago I went for a walk.  At the most I might have walked 1.5 kilometres, on flat land.  That’s not far.  I haven’t been exercising regularly lately (because of how bad I feel) but not that long ago a five kilometre walk would be nothing.  But this time? By the time I was finished I was exhausted.  My feet ached, my calves felt like they were exploding and my hips were feeling stiff.  Moving took effort.  What I have learned is that the next day is the test and I can tell you I was so sore.  My feet always ache but now my hips hurt every time I moved and my back was suffering.  I think it is only natural that I ask,

what did I do that for?

After two days of exhaustion and pain I am moving again and I headed off this morning to see my newly found physiotherapist who is teaching me the skills of cognitive behavioural pain management.

I think it is important to say at this point that I failed cognitive behavioural therapy (CBT) when I was being treated for depression.  Yes failed.  To the point where those involved in trying to teach me this gave up.  Actually I was discharged from the local adult mental health outpatient service because I had not responded to CBT and the psychiatrist in charge didn’t know what to do with me.  Simple, “take her off my books and then I don’t have to worry about her!”  It made me feel great!  Actually it didn’t and as an aside it didn’t help that the Eating Disorders Service and recently taken a similar approach.

When my rheumatologist recommended I see this physiotherapist I was doubtful.  Mention the words cognitive behavioural and I am ready to run a mile… except I can’t now because I’m too much in pain and fatigue.  I have now seen him twice but have to admit that at the end today I avoided the issue of another appointment.  But that’s because I am confused and I need information, reliable information.

I questioned him on why I would want to exercise when the result is so bad.  I understand why in a normal, healthy situation regular exercise is recommended.  But why is it recommended by medical professionals for treatment of fibro when all it seems to do is make my symptoms worse?

Apparently if I don’t exercise, my fibro symptoms will get worse.  Is this true?  I don’t know but it took 30 minutes to get that out of him, there was a fair amount of avoidance to get there.  And according to him if I regularly exercise at a level appropriate to where I am at, I can beat fibro.

Image via jesuspaez74.wordpress.com

This was the first time someone had told me that it was possible to beat fibromyalgia.  I’m wondering, is this true or was he telling me what would stop me asking difficult questions.

I was referred to a book ‘Explain Pain‘ to help me understand why my head is doing this.  Because apparently it is all in my head and that is why I walk but I end up with a sore back rather than sore legs.

The thing is I don’t know who to believe.  Those of us who actually experience this illness on a day-to-day basis tell a different story than health professionals.  And my experience to date is that health professionals have given me very little information even though I’ve constantly been pushing for it.

I recently said that I didn’t think I needed to understand something in order to believe that it worked.  I’ve changed my mind.  I don’t get fibromyalgia.  It makes no sense.  Perhaps that is why I failed CBT when it was applied to my mood.  Perhaps now I am failing it again.

I would love to hear your thoughts if you have fibro or have knowledge about it.  What do you think?  Is it possible to beat fibro?  Only this afternoon I read on a site that fibro symptoms don’t decline (if I don’t exercise) and it isn’t possible to recover.  So you tell me, what do I believe?  I’m confused.

Actually I think I’m having a bad day.  This has left me grumpy with everything.  All I want is a straight, consistent answer.  Is that too much to expect?

Meanwhile have a great day yourself.

The Season For Awards

I am delighted to tell you that today I have (twice) been nominated for:

The Versatile Blogger Award

by Reversing Insanity and

Kevin from Reson8 Freedom.

I much appreciate their votes of confidence and support for my blog. So a huge thank you to both of you.  This award requires that I now  tell you seven things about myself which you might not know and that I nominate somewhere between 10 and 15 (am confused over how many are required) other blogs which I follow.  Shortly I will tell you the seven things but I am choosing not to nominate right now because there seem to be a lot of awards floating around  and it would seem sensible to wait for a bit.  So I hope I am not breaking the rules too much, but I want to make my nominations worth something.  I don’t want to just tell you who I read but would rather tell you the ones I really enjoy and get a lot from.

Seven things about me:

Image via Karen in the Kitchen

1.  My favourite fruit is chocolate dipped strawberries.  Yes, and the chocolate is essential and for my purposes is regarded as part of the fruit.  And white chocolate is not acceptable as it is really just an imposter.  Okay in small doses if necessary but otherwise I stick with the real thing.

2.  The childrens book I have the fondest memories of is ‘The Little Red Hen‘ by Carla Dijs.  I’m not sure why, except it is the earliest book I can remember and I always felt good when I read it (or looked at the pictures).

3. A book that I have no hesitation in recommending, and was once very useful to me is ‘How I Stayed Alive When My Brain was Trying To Kill Me‘ by Susan Rose Blauner.  This is a really great, practical book for anyone struggling with suicidal thoughts.  It is easy to read and the suggestions are practical.  When I was struggling with suicidal thoughts it offered a way of thinking that just made sense.

4. My favourite perfume is FCUK.

5. I am divorced with no children (for a variety of reasons that I will get into one day.  Watch this space).  I am in between pets, after my cat Penny died recently (check out my blog post Rest in Peace).  I can’t decide whether I want another cat or a dog.  Again, watch this space.

This was so me - in a former life!
Image fromdietbookjunkie.com

6.  I used to be an addicted gym junkie.  Fibromyalgia and lack of motivation has ruled this out for now, as well as ruling out the running I used to do.  I loved the gym and was there daily.  To be honest, as part of my past anorexia I often over-exercised and was not only exercising daily but several times a day.  Completely addicted at various times but thankfully the addiction is gone now.  Rest in peace!

7.  I like a variety of music.  It’s hard to pick a genre but music has always been an important part of my life, mostly through singing and playing the flute.  Unfortunately it is another thing that is resting in peace as I seem only to find time to listen nowdays.  I love New Zealand music and here is a clip of one of my favourites from Neil Finn.  I hope you enjoy!

The Fibro Fighter (and another Award)

Wow!  I have had quite a week of fighting fibromyalgia and so was overwhelmed to receive The Fibro Fighter Award from purplelawlady (fibromodem.wordpress.com).  I am only  a few weeks into this world of fibro, still learning lots but enjoying being able to share my journey with you.  The award is given to recognise a  blogger for educating, supporting, enlightening, informing, inspiring and motivating people about and with Fibromyalgia.  I hope that I can live up to that, but you be the judge.  Meanwhile thank you purplelawlady.

It was only last week when I was diagnosed with fibromyalgia after months of pain and tiredness.  I (like I understand most people experience) had gone through months of feeling like I wasn’t being listened to, that it was all in my head and almost giving up on the medical profession.  Finally an answer last week brought news with it that there was no medication I could be treated with for fibro because of the interaction of other medication (namely lithium).  I was devastated because months of paracetemol and codeine, and then anti-inflammatories had done nothing to reduce my pain.  I had been lead to believe once I received a formal diagnosis I would be able to be put on ‘proper drugs’.  No such luck.

Image from vocus.com

Now I am faced with the option of paracetemol (what you might take for a standard headache) and codeine, neither of which does much.  I understand there is a medication called Pregabalin (Lyrica) that can be taken with lithium but in New Zealand it costs around NZ$200 per month.  Ouch!  That is way more than I can afford and so I have to rule it out.  I have developed a codeine habit over the past months that I am keen to knock on the head.  It leaves me drowsy and I struggle to type straight.  I get the right letters, just not in the right order.  So this week I convinced my doctor that I am coming off the codeine.  If you are anywhere near me I’d look out because the headaches so far haven’t been nice.  I don’t know how long it will take to come off but I’m on my way to being codeine-free.

Earlier this week I also saw a physiotherapist who specialises in cognitive behavioural pain management, at the recommendation of my rheumatologist.  It was different that any trip to a physio ever before and actually I came away quite motivated.  I heard him telling me that there were still options for me.  By then I was feeling pretty doomed so his positive spin on fibro helped.  He showed me how to harness the strength I still have in my body but to be honest when he told me of another fibro client who he had running triathlons I have to admit I became a bit skeptical.  This was not the sort of thing I had read or heard.  Anyway I agreed to come back for one more appointment (because I’m desperate) but finances are going to make it hard to sustain this kind of support.  By the next day I was as sore as ever again, and was struggling to move.  This continued for several days and really didn’t surprise me.  I might be new to this but I already know that while I get told to exercise, there is always pain that follows.

Eager to take advantage of anything free, this weekend my city is hosting a range of alternative healthprofessionals in the ‘Heal Christchurch‘ event. In

this a team of qualified health professionals from around the world would provide free treatment to people who are stressed as a result of the earthquakes.  I have mentioned our earthquakes before and can only say that the stress as a result of the loss, the ongoing quakes and the very long repair process has left many of us, including me with a very large amount of stress.  My father also died during this time, as a result of his stress, and that has added to the pile for me to cope with.  My understanding is that traumatic stress can lead to the onset of fibro and therefore I am picking that it is these events that lead to where I am today.  The offer of free treatment was too good to refuse.

I have to say at this point that I am a little skeptical of some alternative treatments, but I figured as long as it didn’t harm me then what was there to lose?  My first stop was to an Australian chiropractor who was doing NET treatment (Neuro Emotional Technique).  This treatment was the main focus of the event and was new to me.

Image via syigimsharif.blogspot.com

“NET practitioners are trained to locate stress patterns and assist in the completion of the body’s normal mind-body healing process. Once the correction is made, the body’s unresolved stress pattern can start to move toward stability and balance. It is important to note that NET does not cure or heal the patient, but rather removes blocks to the natural vitalism of the body, “allowing” the body to repair itself naturally.”

That’s apparently what she was doing.  It involved a lot of testing the strength in my arm (to the point where I had a sore arm) and what seemed like piano playing on my wrist and hand (using her hand).  Then I somehow rather awkwardly had to wrap one hand around the other, put one hand on my forehead and bend over as if to hug my knees.  There I was meant to stay until I felt some relief.  Hmmm.

I can’t say I really felt relief but instead it brought a lot of emotions to the surface, particularly regarding the earthquake damage and the loss of my Dad.  I was crying by the end but am not sure whether it was her treatment bringing emotion to the surface or because the subject tends to be emotional for me anyway.  I was administered with rescue remedy and then told I needed some body work.  Well I know I need work on my body but not the kind she was suggesting.

My free half hour was up but I was referred to a Healing Touch practitioner anyway.  I had never heard of Healing Touch and again was slightly skeptical when I saw what was being done with others.

“Healing Touch is a relaxing, nurturing energy therapy.  Gentle touch assists in balancing your physical, mental, emotional, and spiritual well-being.  Healing Touch works with your energy field to support your natural ability to heal.  It is safe for all ages and works in harmony with standard medical care.” 

Basically I sat on a chair for about 20 minutes while she moved her hands over my body.  Not actually touching me for most of it but about 10 centimetres from me.  She had a small pendulum which she was apparently using to assess the energy in me.  At one point she put her hands on my feet and she

Image via stickershoppe.com

seemed to start shaking.  She told me later that there was a lot of energy in my feet.  Interestingly one of the worst sites for pain for me is in my feet.  She also put her hands at the base of my skull (right where the neck and skull meet).  The same thing happened and again that is another bad site for pain for me.  I hadn’t mentioned either of these to her.

No I didn’t feel better.  I’m not going to pretend.  I really felt no different and wasn’t sure whether in those examples of her shaking was caused by me or by her.  She was keen to link me up with a therapist in Christchurch (aren’t they always?) but I politely explained that I couldn’t afford more treatments.  Did I want more?  Well, I’ll see how I’m feeling tomorrow.  That seems to be the test of everything related to fibro.

So what do I make of all this?

When my rheumatologist told me there was no medication for me, she recommended I try alternative therapies.  She suggested a chiropractor or an osteopath, and she recommended the cognitive behavioural pain management.  She also recommended I take up yoga and/or Pilates.  I’m not completely closed off to trying any of these but the simple fact is they all cost money.  In these remedies (and who knows what else?) I could spend as much as the medication would cost…  but I simply don’t have that sort of money.  Once upon a time I had money, I had a good income, I owned a house but in 18 years of mental illness and now fibro too, the money is gone.  What concerns me is how am I going to find the money to treat myself?   I don’t know but the way I’m feeling I can’t see working being a possibility.

In case you don't know, this is how it is...
Image via Flickr.com

Did the treatments today help?  I have no idea and tomorrow morning when I wake up will be the test of whether they did harm.  I can’t afford to try other treatments, not can I afford the medication.  So for now I’ll carry on fighting fibro with paracetemol (which really does nothing) because for some reason that pleases my doctor.  And I’ll keep up with the psychotherapy because that will help my frame of mind.  Maybe it’s time to hit the NZ Government for better funding for fibro medication, but then I’m not sure I have the energy for that fight right now.

 

“The most beautiful people we have known are those who have known defeat, known suffering,
known struggle, known loss, and have found their way out of the depths. These persons have an
appreciation, a sensitivity, and an understanding of life that fills them with compassion,
gentleness, and a deep loving concern. Beautiful people do not just happen.”
―     
Elisabeth Kübler-Ross

ECT – How It Was For Me

CAUTION: This post contains one brief mention of self harm which may be triggering.

 

Image from Wikipedia

My earliest memories that psychiatric treatment of any sort existed was from English classes at high school.  Firstly ‘One Flew Over The Cuckoo’s Nest’ by Ken Kesey and then perhaps creating a more lasting impression because it was based in New Zealand was Janet Frame‘s autobiographical trilogy of ‘To The Is-land’ ‘An Angel At My Table’ and ‘The Envoy From Mirror City’.  These books were later made into the film ‘An Angel At My Table’ in 1990.

These books, and later their movies gave horrific accounts of psychiatric treatment from the past, including details of Electroconvulsive Treatment (ECT).  At the time I had no diagnosable psychiatric illness but the mere thought of it made a lasting impact on me.  I never once stopped to think I might have to undergo the same treatment one day but it left me with a lasting fascination of mental illness.  One of the most horrific scenes in my eyes was the description of ECT, without general anaesthetic and without muscle relaxant, as it was done in those days.

In 1995 I agreed to undergo a series of ECT treatments.  I was very badly depressed, had been for 18 months and my only thoughts were of killing myself.  I had been on a variety of anti-depressant and mood stabiliser drugs, and nothing had worked.  My doctors were stuck.  My husband was desperate for his wife back.  I was at a point where I really didn’t care anymore.  I was admitted to a nearby private psychiatric hospital for the treatment.

The following is an excerpt from my book (Infinite Sadness, 2009) which outlines my experience:

“Following that first ECT treatment the day after I was admitted, I had about eight more treatments,
every second or third day. 
My memory was definitely failing.  I couldn’t remember one day from the next.  Nothing seemed to stay in my mind. Even events before the treatments had gone from my mind.  I felt so stupid.
It was like everything was gone.   Although it was now February/March, I was writing September as the date.
Visitors came and went but I couldn’t remember them being there let alone what we had talked about.  I was in a daze; I had no idea what was happening.  The only thing I did know was that I didn’t like what was being done to me.” (p.94/5)”

At the end of that my psychiatrist declared that I had wrecked his career because I was the first patient he’d had who didn’t respond.  It had failed, and I went on being treated by a variety of doctors and hospitals in the years that followed.  I chose not to see that particular doctor again (unsurprisingly I was just well enough to not appreciate his statement about his career).

In 2001 I reluctantly agreed to try again at a different hospital and a different doctor.  Again I was desperate, clinging onto life only just.  I just had sufficient will to live to agree to treatment (but only for my cat).

“Several weeks later I was admitted again, this time after I had carved the words ‘I hate me’ into my stomach with a craft knife.  I was given the option of more medication or another course of ECT.  I reluctantly chose the ECT but didn’t hold out much hope.  “I wish there could be a guarantee that ECT would make a difference.  I wish for many things, but what I don’t wish for is more of the same.  I’m fed up with this …  I’m fed up with not being able to live.  I’m fed up with trying new treatments but nothing actually making a sustained difference.  I am just so tired of all of this.” 

I had six ECT treatments in late 2001.  I knew there would be headaches; I knew there would be memory loss.  What I didn’t expect was that I would regularly wet myself when I had the treatments.  This hadn’t happened the first time, although maybe I just didn’t remember.  It was apparently a result of the muscle relaxant used.  I would simply have to walk back to the ward (from the ECT Treatment Room in the geriatric ward) with wet jeans.  Just one more indignity to bear.  I wasn’t even alert enough to care and no one was going to care for me.” (p.164/5)

This time it worked!  I wanted to live again… for me, not just for the cat.  I could start to take an interest in things around me (even if it was only on the ward to start with).  It was such a relief, I didn’t care about all the side effects that had struck me.  Even the constant headaches didn’t worry me anymore because I had my life back!  And I really did.  I was discharged from hospital and was able to plan and make some changes in my life for the better, including shifting to Christchurch where I now live in order to get more support from family.

Unfortunately it didn’t last and in 2003 I underwent more ECT treatments, this time as an outpatient.  I had 12 treatments this time, before it was concluded it wasn’t working this time and they really felt I had been given too much ECT.  I try not to think about what that meant but it was still worth a try.  The effects were the same.  Many headaches followed each treatment and my memory was quickly lost.  It was very hard doing this by outpatient and while I didn’t want nor did I need to be in hospital, I’m not sure that I would recommend it this way.  You need a lot of support both during and after the treatments.

Image from madedition.com

The thing about ECT is that no one talks about it.  It’s all hushed up.  It’s bad enough to talk about mental illness but to talk of ECT and experiences of this incredible treatment that still no one really understands?  No.  We keep quiet.  That’s why I felt drawn to write about my experience.  I’m one of those people that wants to read all about what I experience and in the days before blogs it was hard.  There still isn’t much written about ECT and especially about personal experience.  I have a friend who is currently undergoing ECT treatment and I was struck with how little information there was for her and for her family and friends.  People need to know what this is all about… and we need to be talking about it.

Image from cmap.ihmc.us

I had three series of treatments but only one series worked.  For me it also had lasting effects. I have to say that even now, years later, my memory is hazy.  I really can’t remember much of about a year surrounding each series of treatments.  In 1995 (the first round) I had a husband to be my memory but by the time the second and third rounds happened my marriage was over and I was on my own.  I had no one to remember for me.  I was told each time that my memory would be affected for the time the treatments took place, but it was much more than that for me.  I need to point out that for each person the impact on memory is different, so if you’re contemplating this all I can say is it hopefully won’t be like that for you.

I was also told that the time around my treatments was a bad time for me and so I wouldn’t want the memories even if I could have them.  That seemed fine at the time but in hindsight, it does matter to me.  There is basically three years of my life I can’t remember.  Add to that the hazy memory caused by various medications I was on, a lot of this is really all a big blur.  To be honest, the only reason I can write about my experiences is that at the time, I wrote as a way to deal with what was happening.  It’s only because I have that recorded I can give you any clear idea of my treatment.

So…

the question on your lips maybe would I do it again?  And to be honest I don’t know.  There are costs of all sorts associated, some which I still carry.  But each time I was desperately ill and close to death.  The second series (that worked) I would do again.  Sure, if someone can guarantee it will work then I would definitely do it.  The problem is no one can give me that guarantee.  And just like my friend doesn’t know if her treatment will work, it is a guessing game.  When you get to a stage where the doctors are recommending ECT, you’ve already tried everything else.  There really is no choice.  You just have to hope.  Because there is little else to hold onto.  And I hope for my friend that her treatment works, and that her memory damage is minimal.

“…in a world I’d never known among people whose existence I never thought possible,
became for me a concentrated course in the horrors of insanity and the dwelling-place
of those judged insane, separating me forever from the former
acceptable realities and assurances of everyday life.”

Janet Frame, An Angel At My Table

I got a Tell Me About Yourself Award

Today I am very proud to tell you that Kevin from Reson8 Freedom has very generously nominated me for a Tell Me About Yourself award.  Thank you very much Kevin.  I love that you have nominated me and very much like the sense that my writing is appreciated.

I have to tell you that I much appreciate that my blog has been nominated, not least of all because of this blog’s relative infancy.

According to the rules of the award I, in accepting the award, have to now…

Thank the person that nominated me first and link the blog to that person before you start.  (Which I have done)

Then I have to tell the world 7 things  you might find interesting about myself.

Then I have to add my 7 nominees.

My parents kitchen in Feb 2012. The building has now been demolished,

7 things about me1. I live in an earthquake shattered city (Christchurch, New Zealand) and have experienced 10,000 quakes in the last 16 months.  Like most residents I can pretty accurate pick the Richter scale of an individual quake without reference to geologists.  My house is very badly damaged and continues to decline as more quakes hit and I expect that I maybe have to wait up to four years to get it repaired.  If you are a builder, there are plenty of job vacancies in my city!  On a good note it does seem that finally the after shocks are subsiding… but if they suddenly pick up frequency again I will know it was all my fault for say this.  Meantime I’d rather be here than in Japan.

2. My favourite beverage is… coffee.  real, strong and with low-fat milk thanks.  I don’t actually drink a lot (maybe two or three cups a day) but I need what I have.  My choice is a (large) trim flat white.  For those readers not in my part of the world that means half espresso, half hot (low-fat) milk.  Can’t beat it!

3. I regularly get up at before 5.00am (without the benefit of an alarm).  I used to struggle to get up in the morning whatever time the alarm went off.  The snooze button was my best friend.  After years of severe depression I finally realised that my mood gets significantly worse as the day goes on, and that actually I am a morning person… and I should make the most of it.  So I altered my bedtime so I avoid the bad moments at the end of the day and now get up early to enjoy some morning chill out time… and the sunrise (can’t beat it!).  For some bizarre reason I love being awake when most others are still in bed.

image from blog.kir.com

4. I ran an official half marathon just before I turned 40, as well as several unofficial ones in training.  I was never a natural runner but I loved getting out in the early morning and running around the nearby river.  I admit I ran the most appalling time in the half marathon but only because I pulled a hamstring within the first two kilometres and hobbled the rest of the way (determined that there was no way I was pulling out).  By the end I could scarcely walk.  But I did it!

5. I have a degree in social work and sociology, having completed it as a mature student (the first time anyone called me mature).

Broadfields Mushrooms
Image via lucys.co.nz

6.  My favourite vegetable is mushrooms.  I’ll take them any way they come.  I am lucky because one of my brother’s loves me so much (that’s what I tell myself anyway)that he bought a mushroom farm a couple of years back.  Wonderful mushrooms and I’m not in the least bit biased.

7. I love nail polish… it’s just I never get around to putting it on.  The thought is there though and that’s what counts.

And my nominations for the Tell Me About Yourself award go to (in no particular order):

Flibbergibbetsanonymous (flibbertigibbetsanonymous.wordpress.com)

Fibromodern (fibromodem.wordpress.com)

Reversing Insanity (reversinginsanity.wordpress.com)

Falling out of the fog (fallingoutofthefog.wordpress.com)

Stick-to-itiveness (sticktoitiveness.wordpress.com)

Hopes and fears (colinaquila.wordpress.com)

Mike Anubis (mikesanubis.wordpress.com)

StephinToronto’s Daily Rants and Raves (stephintoronto.com)

Hindsight

How many times do I have to bang my head against the wall before I learn?

How many times do I have to let myself be hurt?

Since starting my blog recently I have been debating with myself whether to make use of the Trigger Warning Symbol, used by many of the mental health-related blogs.  I can see that it is helpful for some people to have a warning of something that might be upsetting, and in the on-line mental health support groups I am involved in warning systems like these are used.  The thing is, they don’t work for me.

Bloggers who use the system commit to where possible, indicating by the use of the symbol that the subject is of a sensitive nature and could cause distress.  The idea behind it is that the reader makes their own decision whether or not to read the post, in order to protect their own mental health and safety.  It’s a great idea and I fully support their commitment to use this system.  But I know from experience over and over again, that it doesn’t work for me.

Image from unknown source

A trigger system, or whatever words you choose to use just doesn’t work for me because I seem to like taking the hard road.  It has to be the longest route and most dangerous.  In my head I know that if I see the warning, then it has been put there for a purpose and I should heed it.  But I don’t.  I think…

1. I’ll be fine

2. I have enough skills in my bag to stop me from being affected by this,

3. I want to know just how sensitive and disturbing it is

4. I’m going to test myself to prove I am tougher than that

5. I want to punish myself and make it hurt (a kind of self harm on my brain)

6. And then sometimes… I just don’t think

Yesterday I  was in a position where I really had a physical trigger warning sign in front of me.  I ignored it.  Not completely, because I was being asked to read a letter which I knew would not be complimentary of me.  I asked twice, “are you sure you want me to read it?”  What I didn’t stop to ask myself was whether I wanted to read it.  I knew enough from the outset to know that it wasn’t going to be nice.  I also knew that other people’s opinions of me are just that, an opinion and I don’t need to be destroyed by that.  Actually I can choose to pay no attention to it.Day 264 - turn back now

Hindsight is a wonderful thing damn it, but it’s no use to me by then.  All the warnings I needed were right there in front of me.  But I still ploughed on in.  I should never have even cast an eye on what was being put in front of me.  I already knew what the person thought (well some of it anyway) and I knew it wasn’t something they intended for my eyes.  At the time I thought I was being quite grown up about it, but really I was using the opportunity to beat myself up.

I know I struggle with depression.  I know I struggle to make sense of my emotions because of Borderline Personality Disorder.  I know my self-esteem, while growing, is still fragile.  I know enough to not put myself in that position.  I also know that because of fibromyalgia some thing like this could  affect by body in days to come.  Yet I did read it.

I’m not going to use the trigger warning symbol because it doesn’t work for me.  I accept it works for many, and for them I think that is great.  But for me it is like a red rag to a bull.  I just can’t help myself.  I just have to go there.

But all I end up with is hurt feelings.  Dumb.  Really dumb.  And yes, today my body aches and my head is still a bit battered.

Silliness is good for my soul!

Image from unknown source

Then a woman said, “Speak to us of Joy and Sorrow.”

And he answered: Your joy is your sorrow unmasked.

And the selfsame well from which your laughter rises was oftentimes filled with your tears.

And how else can it be?

The deeper that sorrow carves into your being, the more joy you can contain.

Is not the cup that hold your wine the very cup that was burned in the potter’s oven?

- Kahil Gibran, The Prophet

***

Sometimes (actually often) both mental and physical illnesses have a habit of robbing us of fun, and laughter.  There is not much funny about ongoing pain, regardless of the type of pain it is – mental, physical or emotional.  For me, being silly has been a way to relieve that pain, to distract my mind onto something else, and to manage the despair.  Sometimes like the sheep above I have to say ‘I’m going to have fun, and you can’t stop me’.  To do this sometimes it helps to know who you can be silly with, and when I think about my life there are certain people I know I can be silly with without losing the perspective on my pain.

Image from thebooknosher.blogspot.com

My Dad, who died nearly a year ago was one of those people.  As he grew older and perhaps because he had more time, we could just have fun together sometimes.  A good imagination helps in the pursuit of silliness, and Dad and I shared this.  My ex-husband was also one I could be silly with.  Our marriage was filled with a lot of pain for us both but, we managed to find a way to relieve that pain sometimes.  He even called me Silly Billy (which I honestly didn’t much appreciate at the time, but it was a sign of how silly we could be with each other).  There are also specific friends I can also be this way with.  I am very blessed to have these people in my life.  They put sunshine in an otherwise rainy day.For each one of us, we need to find what being silly means.  For as many people who read this, there will be many more ways to create silly.  Maybe you can’t be as silly as me, but be silly in your own way.  One of the ways for me (and you’re probably about to think I’m totally bonkers!) is combining silly with imagination.  I rescue abandoned and orphaned vintage teddy bears.  There… I’ve said it.  Think'Gray' short for Graham I’m crazy if you like but hey, I’m happy.

Why do I rescue vintage teddy bears?  Well someone has to.  The world seems to be full of uncaring people who just toss their teddy bears in a box in the garage, if not worse.  bears that have no doubt put years into serving their owners faithfully.  And what do they get?  Tossed aside.  If you read my book ‘Infinite Sadness’ (2009) you will read in chapter 15 that I have a very special teddy bear called Ted, who while too shy to show his face on my blog, has definitely encouraged me into this rescue service.

This bear to the right is Gray (short for Graham).  His rescue mission was completed two days before my father died last year and so it seemed appropriate to name him after my Dad.  He is between 40 and 50 years old and was about to be taken on a one way trip to the dump (refuse centre).  That’s an appalling way to treat a bear so I bought him.  Now he lives happily on my couch.

Don’t think I have a house full of vintage teddies, because I don’t.  Unfortunately people who don’t want their teddies anymore still expect to be paid a handsome price for the rescue.  Personally I think this is appalling and people should pay me to take their bear into retirement care, but alas I seem to be alone in this thinking.  Being on a rather limited (to say the least) budget, I can only afford to step in occasionally.  Thankfully I Stuffed... in more ways than oneknow there are  others keen to rescue bears and so I can live with knowing they go elsewhere sometimes.

While I’m on the subject I have to introduce ‘Stuffed’.  He’s worth a special mention because he really seems stuffed (in more ways than one).  He arrived with practically no fur and what looked like a gunshot hole in his side.  I suspect it was a child’s finger that went in there repeatedly.  Before I saw him I was warned that he was on his last legs, but even I didn’t expect that someone would let a bear get into this state.  I even considered euthanasia  in his case, but he tells me that he’s quite ok and would like to live.  Who am I to argue?  And personally, just as I could never sell a bear (why do people in their right mind’s do this?), I could also never put one to sleep when he says he’s fine.  I always go with what the bear wants most.

By now you’re probably thinking I’m stark, raving bonkers.  Maybe you’re right.  Maybe you should read Paddington Bear  and see I’m not the only crazy one.  But seriously, a little silliness is what helps me get through, whether it is this rescue mission or something else, it works for me.

Don’t get me wrong I’m not ignoring my pain (or trying to bury it) but sometimes a distraction from it is necessary to be able to bear it (excuse the pun).  The thing is people forget that depressed  and sick people can laugh and smile.  We can.  Only thing is it doesn’t remove the pain, but for the moment the focus is on something else…  and that is quite a relief.  Look at the clown doctors that are being used in hospitals today to bring a little sunshine particularly to children in pain.  This is a great idea.  It’s a shame that they don’t have enough resources to stretch to psych hospitals or even adult wards.

So what do you do to be silly?  And have you used it to distract you from your pain?

“The most wasted of all days is one without laughter.”

E.E.Cummings

“Laughter is the sun that drives winter from the human face.”

 Victor Hugo

Bricks… courtesy of a friend

Image from salforddaily.blogspot.comSometimes, someone else can say it better.

This time I read the entry on my friend’s blog reversing insanity and knew she said it so much better than I could…  it says so much to me about what goes on that I asked her permission to reblog.  But when I did, I lost all the formatting so have had to do it as a new post.  So please be clear, it is not my work but that of my good friend.

Bricks
by Reversing Insanity

Private garden, surrounding serene

Encapsulates beauty, but remains still unseen

Behind a tall wall of foliage and brick

No one knows what’s inside it or what makes it tick

Flowers can bloom the cast of moonglow

Or ivy can dance with the wind as it blows

Sometimes it bites like a thorn to your thumb

On occasion in harmony it creates a sweet hum

But that was before, long before the war

It’s so sad what went on behind that garden door

The internal struggles just became too much

Those walls kept out all of those with loving touch

Afraid to expose, to have the ugliness seen

Keeping everyone out, left on no one to lean

Things started to die, little by little

Start on the outside and worked toward the middle

The decay of the place was simply quite tragic

But to reverse what’s been done would need some strong magic

Convincing something to live that feels like dying

An impossible feat, but it’s surely worth trying

As the vines shrivel and the sweet blooms retreat

The soft moss grows hard and surrenders defeat

Nothing dances in here, at least anymore

The joy is depleted and can’t be restored

If you could get in there, it’d be no place to roam

Even wildlife and insects won’t call it a home

It’s full of sorrow, it’s just given in

The bricks are now so high, the sun can’t even get in

It just sits on a plot of dirt and dead trees

It’s fortress so tight, can’t feel a warm breeze

Climb the wall if you dare, but you’ll never get out

I’m not really a garden, I’m your head full of doubt