What’s In A Word?

If you’re like me, you’ll struggle to find the word. You might just hit a blank, and not for the life of you be able to come up with the word you want, or maybe you might blurt out a completely different word than the one you intended. Where did that come from?

It’s called brain fog. Or cognitive dysfunction. Or cognitive impairment. Maybe specific to your illness, it might be fibro(myalgia) fog or maybe chemo(therapy) fog. I’m sure there are others related to other illnesses. I battle with brain fog thanks to two chronic illnesses (fibromyalgia and Graves’ Disease).

They said it might be a problem when I have a flare of my fibro, but actually, it is a constant for me.

I used to be paid to talk. I was employed to train people how to be managers, and so I was either in front of a classroom, talking all day, or other days I might be on the telephone for most of the day planning training programmes.  Even outside of my work, I talked. Leading groups.

I spoke fluently, without hesitation. It didn’t worry me whether I was speaking to one person or 200. Much of my speaking was off-the-cuff and I would only have minimal notes to guide me. I was good at this. It was my chosen career until severe mental illness cut me down, but that’s another story.

Now, I struggle to string a sentence together. I stutter, I hesitate, I lose the words I want to use, or completely wrong words come out of my mouth. It doesn’t matter whether I speak to one person or a group, I am constantly battling my brain to come out with the right words at the right time.

I feel like an idiot. I imagine what people must think of me. They would have no idea that I am actually an intelligent person because I really do sound like an idiot.

Worse yet, is speaking to people for whom English is their second language. Most of the staff in the dementia facility where my mother lives are immigrants. My problem is that I struggle so much to say what I want to say, but if they don’t understand me, I have to start all over again. They are trying to guess what I want to say, and I get flustered and my speech gets worse.

I am so frustrated by this today but it is like this every day. My inclination is to isolate myself, so that I don’t have to speak. But I can’t do that. I don’t want to answer the phone and actually fear that it will ring.

This is a constant problem for me. Anxiety is up, so is depression because I am so frustrated with the simple task of speaking. For those who think I should be out there working, I couldn’t work. I couldn’t do my job, because my job is talking. I retrained as a social worker, but wouldn’t manage to do that either. I just constantly stumble over my words. (By the way, there are other substantial barriers to me working, but my speech is just one more invisible problem.)

And that isn’t the Cate I always knew. What the f*ck happened to her?

Thanks for reading

 

Cate

Questions Of Suicide

TRIGGER WARNING: This post is a discussion that may be distressing to some people as it looks at suicide and suicidal thinking. There are no details of suicide and no discussion of methods. If you are distressed and don’t know where to access help, I recommend that you use the resource Befrienders Worldwide to find your local support agencies.

 

You’d have to be totally without wi-fi not to know that two American celebrities have died by suicide in this past week. I admit I hadn’t heard of one of them, but I still knew that it had happened.

I wonder how it is for their families to see, at least the western world, discussing the tragedies in so much detail. I wonder how it is for their personal friends also trying to grieve their loss with the media looking on so intently.

But also…

What about the families and friends of the other people who have died by suicide this past week? I haven’t sought out the statistics of how many people across the world die by suicide each week, but my guess is the number would be alarmingly high. How must it be for those friends and families to watch as the world focusses on only two deaths when every death by suicide is a tragedy for us all.

What about the people across our world who attempted to die by suicide in this past week? Again, that number is too high, whatever it is. While we talk of the celebrities who died by suicide this week, do we know who attempted suicide? Were either our friends or our families one of those who was suffering so much that they lost complete hope and tried to end their lives. That’s a really hard place to be. And what do we do about them?

What about the people we know who might have struggled to hold onto hope this week? Do we know if our family or friends are struggling that way? Do we know if those closest to us, might be thinking they can’t go on any longer? Maybe the struggle is too much and they’re thinking about ending it all. Dying by suicide. Do we know?

What about the people in our lives who live with depression? Do we know who they are? Have we considered reaching out to them, letting them know that they’re not alone? Or do they go on thinking it’s only the celebrities that matter?

What about the people who think they don’t matter? I suspect there are no statistics on this one, but I also suspect that the number would be higher than we might think.

What about the people who live with daily pain, disability and sickness? How do they feel seeing the world focused on two lives? What about them? Do they have enough hope to hold onto and keep fighting? Or have they had enough of their battle, and do they matter to you and me anyway.

There are a lot of questions that I have asked, with the sole purpose of thought. They are the questions I began to ask myself this morning. Where do I fit in amongst those questions, but also where are my friends and family in it? Do I know who in my world is struggling with life, and needs my support? Or do I just go on blithely living in my own world? It’s easier that way if I can ignore the fact that people around me are suffering. But should I? And could I do something to alleviate suffering?

What really worries me is how we get involved in discussing the tragedies of two celebrities who have died by suicide. We (particularly social media) will go on discussing it for maybe a couple more days and then we will be back to ‘normal’.

Back to ignoring the fact that too many people die by suicide every day. And too many people attempt suicide each day but don’t get any support to enable them to grab hold of life again. We ‘pump their stomach’ and send them on their way again. How will that help?

Are we ignoring the numbers of people suffering (and I mean suffering!) from mental illness. Stigma is a ‘great’ thing isn’t it if we can push those people into a corner and then forget about them. Are those people in your or my family? What are we doing to support them in life, or is it easier to let them lie hopelessly in that corner?

I hate that two celebrities died by suicide this week. I wish that we as a world could have reached out and helped them so that they didn’t see suicide as their only option. But we’ve been here before. Celebrities who die by suicide generate chat. But how would it be if we take this chat and turn the tables. Turn the conversation of a couple of days into the action of seeking out and supporting those of our circle who need our help. If we stop talking and reading our screens so avidly, for now, and ask the necessary questions of suicide. I believe we can do something of good.

“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’
No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.”

— Dalai Lama XIV

Thanks for reading

 

Cate

 

“In Restless Dreams I Walked Alone”

It is a dark and lonely place, sat in front of the keyboard, ready to write, knowing not how one’s words will be read, whether they will be read at all, but hoping, maybe, to reach at least one person who also walks alone.

That’s me. I want to share with you something I don’t easily talk about. Something that keeps me restless. Something of which I am ashamed.

Drove the night toward my home
The place that I was born, on the lakeside
As daylight broke, I saw the earth
The trees had burned down to the ground

It was twenty years ago that I stopped drinking. There have been drinks since then, too many, but I finally stopped for good about five years ago when I accepted that one drink was never going to be enough. And no matter how much I drank I would never succeed in what was driving those drinks. I needed to no longer be me.

To cut a long story short, declared an alcholic I turned straight to another addiction. Smoking. Actually it was endorsed by my doctor. And I kept adding addictions as I sought to no longer be me.

I stopped trying to kill myself (to be honest, I’m not sure why) about the time I stopped drinking, but while I might have looked better to anyone looking, I was battling myself so hard that I needed a vice.

I’m not going to tell you what my vices have been. No one knows and it would detract from the point of this post. You see the point is that no one knows. You think you know me well enough to know? You’re wrong. It has all been hidden. From everyone.

Paint yourself a picture
Of what you wish you looked like
Maybe then they just might
Feel an ounce of your pain

Years ago, when I was battling severe depression, my mother used to tell me that I had to tell people how I was because they had a right to know. A sideline is that what she meant was they had a right to know because they were praying for me. That was actually one of the biggest points that put me off Christianity, but like I said, that’s a sideline for another day.

What happened instead, was that I withdrew. Pulled down the covers and hid. If they didn’t know then they couldn’t hurt me by their judgments, their meaningless comments and their complete inability to ‘get it’. Because let’s face it, who does ‘get it’ …unless they’ve been there themselves?

And more important to this post is who gets addiction? Who understands what can drive an addict to destroy themselves trying to achieve some nameless and often unknown goal?

I need(ed) to not be me. I need(ed) to distract myself from what I’m feeling.From the pain within. Maybe even destroy that pain, or just feel better… for a while (in reality, maybe a second).

It’s hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

It might seem boring, but the only visible sign of addiction now is my smoking, everything else is truly hidden (but still destructive). Even my smoking, I do alone. I’ve given up telling anyone when I try to give up, because there have been so many attempts. Too many. And now I’m not just ashamed of the need for nicotine, but also of my inability to give it up.

The thing is though, that there are two sides to me. Always. One side wants to give up. That side needs to give up because aside from my health, cigarettes are really expensive in New Zealand and there are other things I could be spending my money on.

But then there is the side of me that wants to smoke. Yes, really. She’s still there, and I know that it is her that stalls the ability to stop. She likes smoking. She likes it when people cast judgment her way. She laughs when her neighbour coughs as she passes. The New Zealand Government wants to do away with smoking by 2025, and she is determined to still be smoking past then. Just because. Because she can.

She wants to stop herself from feeling, stop herself from being …her. She knows there are healthier approaches to life, but she also knows that she can change to a ‘healthier’ addiction but that any addiction can (and will) become unhealthy. She’s stuck on a treadmill. No matter what it is, she will take it to the extreme. Just another addiction. Just another attempt to stop herself from being her.

In this proud land we grew up strong
We were wanted all along
I was taught to fight, taught to win
I never thought I could fail
No fight left or so it seems
I am a man whose dreams have all deserted
I’ve changed my name, I’ve changed my face
But no one wants you when you lose
I never thought this would be me. You don’t even know the worst, but if you’d looked at me 30 years ago, you never would have thought it would be me either.
The short answer is that perhaps this is what trauma does to you. Trauma that keeps repeating, and keeps having you fight not to be you anymore. Because if you can do that, then maybe the trauma will end.
They don’t see the angel
Living in her heart

The good news is, there is an angel living in my heart. Actually, that angel is probably what nearly everybody sees. Because either they’re not looking, they see only what they want to see, or I don’t want them to see. Shame drives it all.

That angel wants to conquer her demons addictions. But it’s hard when shame pulls the curtains. Recently I metaphorically fell on a programme available in my area to help my angel conquer those addictions. All I have to do is go, at the appointed time. Tuesday at 6pm.

That’s not hard, is it? But it is. Three Tuesdays at 6pm have passed since I found the programme and I can’t get myself there. I can’t get there because I’m scared. The anxiety is enormous. There are too many “what if’s” and “yes, but’s”. Every Tuesday (so far) I choose to not go (because I know it is a choice) and choose to stay with my addictions. There is a fierce battle going on inside of me. I need the help but I just can’t quite do it. Yet.

So don’t be afraid to let them show
Your true colors
True colors are beautiful
Like a rainbow
Quotation Credits
‘The Sound of Silence’ by Simon & Garfunkel
‘Don’t Give Up’ by Peter Gabriel
‘True Colors’ Cyndi Lauper (Songwriters Billy Steinberg/Tom Kelly)
‘Skin’ by SiXx AM

Becoming Mindful

I admit to being a reluctant participant. While I understood the principle of mindfulness, I had no desire to make it part of my life. I know, I’m not meant to say that. But I have.

Maybe it was the fact that it was recommended to me by so many people in so many places. It would help my depression. It would help with anxiety. It would definitely help my Borderline Personality traits and would help my dissociative disorder. On and on have been the recommendations. Apparently it would help with almost any disorder. Don’t get me started on how mindfulness was meant to help with chronic pain. The only thing was that if someone recommended something to help me, I was more than likely to do the opposite.

It’s not that I didn’t want help. I just pushed away the help that came my way. There have been too many recommendations from all types of quarters from my (ex) mother-in-law to the best of psychotherapists, psychiatrists and pain specialists. Most things recommended actually didn’t work. Some have actually caused me more harm rather than good. I just didn’t want to know anymore.

So any time someone mentioned mindfulness or a programme including aspects of mindfulness I just gave a non-committal answer and quietly backed away. I didn’t want to know. That was until recently.

Before I go on, it’s important to clarify just what I’m talking about when I say mindfulness. So here’s a definition from my fav Oxford Dictionary:

“A mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.”

I got thinking one day about what is a daily activity for me. It’s one that you might be surprised I am linking to being mindful. Most days I spend time with my mother in the secure Dementia Care facility when she has lived for the past 15 months. Not only do I spend time with my mother but also the twenty-odd other residents and the staff. They have all become a bit like family to me.

It occurred to me that when I go through the locked doors, I leave everything behind me and focus on what is happening at that moment. I can’t focus on any of my stuff. That gets left at the door because Mum needs my complete attention. She is also not well enough to be able to give attention to my stuff. It’s not exactly mindful meditation, but it is focusing on the moment.

Then today I was reading a blog by a woman with early-onset dementia. She said:

Once you’ve got your head around the diagnosis, don’t dwell on the losses or the future as you have no control over each. Instead enjoy this moment as there are still many adventures and laughter to be had”

She made me think that aside from finding a mindful approach the only way to cope with visiting my mother, it was also an approach for those facing diagnosis of illness. It’s far from an easy illness, or an easy place to visit, let alone be there day after day. But there are fun moments. There are adventures to be had. I leave my troubles at the door and venture forth into Mum’s reality. That is all that matters for the time I am there.

While those thoughts have been gradually forming in the background of my mind, I almost literally stumbled a few months ago onto a more conventional form of mindfulness through meditation. I was truly desperate to quiet the tinnitus in my head one night. Having bought a new phone I had lost the app that I used to use a night for nature sounds.

Instead, I came across the app Calm which offers mindfulness meditation. I was listening to it before my rebellious mind had a chance to say no. What’s more, I found the sleep story I listened to, was quietening my mind, focusing on one thing. Now.

For as long as I remember, I have had trouble with over-thinking while I am supposed to be going to sleep. It has been like an automatic switch that pings me into thinking and worrying about everything. As a sufferer of anxiety and Post Traumatic Stress Disorder (PTSD) I didn’t have a hope of getting to sleep until I finally collapse in exhaustion. Using sleep stories to focus my attention, I am getting to sleep much quicker and not becoming anxious about the whole night time and sleep thing.

Having found mindfulness useful in sleep I have started using meditations offered by Calm. Yes, really. Me. I admit I have been amazed at how calm I can be after meditating and how it helps me throughout the day.

But I am slow to change my daily routine to make sure I build into each day some time for meditation. I also still find myself amazed to even be going here. Me? Mindfulness? I would have said never. Not for any really solid reasons but simply because I had got a thing in my head and simply wasn’t going to go there.

Well, now I am.

I finish with a rather long quote, but one that I wish I had read, and had the willingness to take on board, many years ago:

“I’m simply saying that there is a way to be sane. I’m saying that you can get rid of all this insanity created by the past in you. Just by being a simple witness of your thought processes. 

It is simply sitting silently, witnessing the thoughts, passing before you. Just witnessing, not interfering not even judging, because the moment you judge you have lost the pure witness. The moment you say “this is good, this is bad,” you have already jumped onto the thought process. 

It takes a little time to create a gap between the witness and the mind. Once the gap is there, you are in for a great surprise, that you are not the mind, that you are the witness, a watcher. 

And this process of watching is the very alchemy of real religion. Because as you become more and more deeply rooted in witnessing, thoughts start disappearing. You are, but the mind is utterly empty.

That’s the moment of enlightenment. That is the moment that you become for the first time an unconditioned, sane, really free human being.” 

― Osho

Thanks for reading!

 

Cate

All That Glitters Is Not Gold

Back when I was a child, I remember eyeing up the presents under the Christmas Tree. We were not allowed to touch them until the appointed time when the family would gather around the tree and carefully open the presents one gift at a time. Before that moment came though, I (with my brothers) would eye up which present looked the best. Maybe which was the biggest, maybe what gift wrap was the shiniest, a ribbon added for extra effect, anything that would indicate that one might be better than another. I would conclude from this which present I wanted to be for me. But there was no handling the gifts to see who the gift card determined the present to be for. It was very much a guessing game.

Of course, what we thought would be the best, what we thought would be gold, was not always as we suspected. Sometimes that gold was simply gold paint. We were duped. All that glitters is not gold.

150781_429835517105020_1440966427_n

A few years ago I received a gift, a gift that over time I concluded to be gold. It looked so good. All the right words were there. All the right sentiments. What seemed to be the right motivations. It was an unexpected gift. I didn’t go out looking for it, but instead, it just seemed to happen. Maybe I couldn’t be let down by the gift, because I didn’t set out to get anything from it.

But it wasn’t that easy. Nothing ever is. Even when you think what you are getting is gold.

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Image credit: L.L.Musings https://www.facebook.com/LLMusings/

It’s true. Most people in my life thought the gift was a beast. Not gold at all. Many people were quick to judge. Judge it and probably me. Fair enough, I suppose. We all form opinions and sometimes make judgements on only a very small amount of information. Usually wrong information.

I learnt this very quickly when I was spat at for my association with my gift. I had been fortunate enough to have never been spat at in my life. I can tell you that it’s quite a wake-up call.

I realised very quickly that my decision to accept the gift had consequences. Some of those consequences have continued to live on to this day, even though the gift is no longer mine. I lost along the way, in ways that will not be obvious to anyone in my life. I am of no doubt. I lost a very great deal, and in ways I did not expect.

To be clear, this gift that I thought was gold was not without its faults. I could see that. I was going into it with what I thought were wide open eyes. It’s just that eventually the gift turned. It turned from one of gold to one of darkness. One of lies and a lack of respect for me.

In hindsight, I learnt my gift to be one of darkness and pain, but I very clearly believed it was one of goodness. Do you know how cheated I felt when I learnt? I had gone to bat for the integrity of the gift. There was both financial and emotional cost involved in accepting the gift. The air was literally bashed out of my lungs and I struggled to breathe, let alone accept and move on from the gift.

I have learnt a few things in this journey:

  1. If it glitters it probably isn’t gold. While it seemed wonderful for a long time, wonderful was the last thing that it was. It was a con. And it hurt me a great deal, more than I  ever said to anyone.
  2. How quick humans are to judge, usually on the basis of just a scattering of opinions and of course, very big assumptions.  Because while we all know that all that glitters is not gold, we also know that just sometimes, what looks like shit is actually gold. We all hope our gift will be gold. How can we determine either way, on just a few pieces of information? It doesn’t matter anyway because people will already have judged, already have spat.
  3. Not all monsters are hiding under the bed. Some are lying in the bed with us. Others are very much installed in our minds. I encountered all of them. All installed by the gift.
  4. I finally accepted that I am scared of the dark. Maybe not so much scared of the dark as what might be hidden in the dark and is actually right in front of my eyes without me realising.  That is downright scary. So yes, I’m 52 and I sleep with the light on. Actually, I sleep so much better
  5. The only possible way forward from this gift was forgiveness. That’s right. I had to forgive the gift for everything because without being able to forgive the gift, I truly would have been destroyed. I forgave the gift (eventually), not for the gift’s sake, but for my own healing and survival.
  6. I also had to forgive myself. For decisions I had made on the basis of things I didn’t know, for missing/ignoring what was staring me right in the face, for ignoring the gut instinct that warned me without me realising and for simply being me, a person who in spite of all the flaws you could all see in this gift, I chose to see beyond them.
  7. Sometimes we are bound to get it wrong. I might think that gift is going to be so precious to me that it is a soulmate but in fact, is a thief. It just happens and while it seems entirely impossible to survive, somehow we do. We are, of course, only human, even when it hurts like hell.

This isn’t something that has happened to me only recently. Rather it is something that hurt so much, that it is only now that I feel able to write about it. I simply didn’t have the words, and I’m not sure I yet have adequate words. Sometimes it takes other people’s words to explain too, and that is always okay with me.

sometimes we’re silent
because our soul knows
how it feels, but hasn’t
found the words that
the mind can understand.”

 – JmStorm

I felt too, that I owed the gift some privacy in spite of the pain it inflicted on me. I know better now. I don’t owe that gift anything. All that glitters is not gold. And when it’s not gold, you don’t owe it a thing. Sometimes I’m slow to learn but eventually I get there.

Thanks for reading!

 

Cate

 

Other Reading

Grieving For My Red Balloon

Letting Go Of Balloons

 

 

 

 

“He Gives Me The Creeps”

Even before I have started, this post runs the risk of being full of generalisations. I hope you will excuse this. I really don’t mean it to be this way but it’s just where my thoughts are at today. I know a good number of very good men, so don’t get me wrong. I am not, nor will I ever be a ‘man-hater’. Actually, there are many times when I prefer the company of men over women.

So many good women have dealt with the wrong man and so many good men have dealt with the wrong woman that, by the time you two finally meet, you’re BOTH afraid of each other… so afraid, you run the risk of ending it before you’ve even given it a chance.” 
 – Unknown

I wasn’t able to establish a definitive author for this statement. More than one voice seemed to claim it as their own words and I admit I have eventually given up searching in order to focus my efforts on what it is that I want to say. Please forgive me for this, and let me know if you know for sure, who is the author. Meanwhile, the words are sadly, perhaps the story of my life.

Am I a good woman? I don’t know and I wouldn’t dare to say. I’m sure there are more than a few who would say I am not. What I do know is that I have come across the wrong man too many times in my life. More than just the wrong man, but the true determination of a wrong man (in my eyes) as a ‘creepy man’ and usually sometimes dangerous man. Certainly dangerous to me. Sometimes dangerous to me physically, but even more so, emotionally and mentally dangerous.

It is the point at which I label a man as “giving me the creeps” that I know that I am at a turning point. The best thing to do would be to run like hell, but I admit there have been times when I have been fully immersed in a relationship when I finally conclude he “gives me the creeps”. Then running like hell is still the best course of options (for me), but can be easier said than done.

Yesterday I came home and muttered to anyone who would listen:

“…(he) Gives Me The Creeps”

It was not about anyone I am in a relationship with, not the least reason being that I have previously concluded that a relationship is the last thing on this earth that I want to be in.  Yes, too many ‘wrong men’ have set me on this course, but more so, and completely outside the scope of this post, I have simply decided that a relationship of any sort, with man or woman, is not what I want for my life.

This particular man maybe not be relationship material (for want of a better phrase) but still can stand as a threat to my personal safety and wellbeing.

When anyone who would listen to my mutterings hears me say “he gives me the creeps” they know that this is a turning point for me. I can hear my own gut instinct speaking (finally) and take it as a fair warning, a threat to my wellbeing, particularly my emotional wellbeing and I should run like hell. That would be the logical thing to do. Many times it is exactly what I have done regarding both creepy men and women. But there is another option. It may not be the most sensible option but it is often what comes to mind first.

My experience of ‘wrong men’ (sadly more than one) has left me carrying the burden of Post Traumatic Stress Disorder (PTSD). The summary of this you will find recorded in many posts on my last blog Infinite Sadness… or hope? so I won’t go into detail here. As healthy (and recovered) as I usually like to see myself, there are still triggers to my feeling of being unsafe. They can come up in all kinds of environments, but they often eventually carry the statement “he gives me the creeps”.

When those words come from my lips I immediately want need to hunker down in my own version of a safe house/bunker. I want need to shut all the doors and windows, pull the curtains, unplug the (landline) telephone and go off-line. Before those words are uttered my gut instinct has not kicked in. I have perhaps been oblivious, maybe naive. I have wanted to be friends with anyone… until now when I am reminded that there are more than just one creep in this world (sad but true).

The events in my life that lead to the PTSD were across a long period of time. I came to know that “safe house/bunker” existence as normal. Yes, that’s right, I did say normal. I was constantly afraid. In terms of relationships, I feared that every man was a ‘wrong man’ and would eventually turn into a ‘bad man’ who could would hurt me. I couldn’t trust anyone. I had determined that my gut instinct could not be trusted and that every situation was one in which I could be would be in danger.

I’m not quite so afraid nowadays (after a whole lot of therapy and time), but that feeling that ‘a person who gives me the creeps’ is the first step to me feeling I am in danger. And it can come for any number of indicators, sometimes just even a hunch.

Of course, I know the reality to be that I am not always in danger when I determine someone to be ‘a creep’ but it’s still a turning point in how I regard a person. I admit that when I came home muttering this about someone I encountered again yesterday, I knew I needed to be careful around him.

Yes, careful in the sense of keeping myself safe but also careful in the sense of not going overboard in barricading my life. The difficulty is in getting the right balance and recovery from PTSD never taught me how to get that balance. I guess balance is something that comes with time and experience. Meanwhile, I realise I am not as recovered from PTSD as I thought, but rather I live and fight it every day. Oh, and yes, the barricades are up!

One last note, if you’re reading this and “think this song is about you”, (yes, I’m borrowing the lyrics) please don’t. This song post is not about you.

“Alone with thoughts of what should have long been forgotten, I let myself be carried away into the silent screams of delirium.”
― Amanda Steele, The Cliff

Thanks for reading

 

Cate

 

 

Here Comes The Sun

This week you may be thinking things look a little different around here. Even though this blog has just begun, I realised almost immediately that things were just not quite right and that I needed to do some tweaking. And so I did.

The theme got changed first. Sometimes it’s hard to tell if a theme is going to work until you actually work with it. It didn’t, and I’m hoping the new theme you’re seeing will work for both you and me a whole lot better.

Then I needed to incorporate some new images to make everything ‘just right’. The first one, the wings, is one you will have already seen on my first post. I liked it so much, and some readers told me they did too, so I built it into the look. Remember wings are about flying. Yes, I know you could work that out without me saying it but flying really is my favoured superpower. I want to be sure that those who are giving out superpowers remember which one I want. What’s more, there is nothing better than getting on a plane and flying up above the clouds.

But more importantly, living with chronic health issues does mean taking that extra step, to see if we can fly in spite of those issues. I want to have these wings right in front of me when I’m looking at, and working on my blog. I do have wings. And I can use them.

sunrise

The second image I have added is about flying too. I wanted to add this image because it is a picture of a sunrise over the Pacific Ocean, taken in Kaikoura, a little under 200kms north of  Christchurch, where I live. I just love seeing the sunrise from anywhere but there’s not much better than seeing it come up out of the sea. Wow, it really does get my heart rate up and reminds me that I’m alive. I am so lucky that for me it is only a 10 minute drive to the ocean to see a similar sight.

A few years ago I was flying over Australia, heading east towards New Zealand. The flight was actually from Bangkok and it happened to be early in the morning. As a fluke, I was seated on the side of the plane (with a window seat) that enabled me to watch the sunrise – for literally hours. You have no idea the joy I felt. Actually, it was perfect timing because for most of my flight I had been feeling dreadfully sad, having left a close friend behind. It was one of those ‘wow’ moments I will never forget.

It’s not important what you believe about where nature comes from and who governs it, but whoever it is really gave me a gift that morning. I had an almost eight hour long, perfect sunrise. One thing that I believe is that sometimes we get gifts like I got, at just the perfect moment. We get them for a reason. I would soon be facing a great heartbreak (no, I’m not going to go into the details) and even though I had no idea of what was ahead of me this eight-hour long sunrise really was a gift I could hold onto when the going was going to get tougher than ever.

This blog is me. It is my journey with chronic illness. It is my journey of life. While the original images and themes used represented me, I came to the conclusion that wings and a sunrise were so much more appropriate to the theme I was building right from the name of the blog.

I hope you stay with me on this journey. There is much to come.

“At the moment that everything goes dark, the sunset in front of us becomes the whole story. But if we find courage enough to wait until tomorrow morning, we will suddenly come to understand that in reality yesterday’s sunset was only half of the story.” 
― Craig D. Lounsbrough

Thanks for reading

 

Cate

PS. This image of sunrise at Kaikoura, on the east coast of New Zealand’s South Island, is by Charlie Evans, Nelson http://www.kiwiwise.co.nz

Hopes For Another Year

What are you doing tonight? What I mean is, what are you doing for New Years? The great celebration of New Year’s Eve. It is great, isn’t it?

I’m not so convinced, but then you could just say I’m old, down on myself and I have few friends to spend it with. Any number of those might or might not be true, but for a long time now, I have been less than impressed by the ‘great’ New Year’s celebrations. Please, can’t we just skip to February and carry on as if nothing is different?

New Year celebrations are great if you’re twenty-something, physically and mentally healthy, have money in your purse, have mountains of people you want to spend that occasion with, and while I’m at it, you’re probably an extrovert.

Am I any of those things? The short answer is no. And perhaps that’s my excuse for planning to go to bed tonight, at the usual time (early by most people’s standards) and if I wake (get woken) up at any time while it’s still dark, my cat, Hobbes will have a lot of explaining to do simply because he’s the usual culprit (other than just normal insomnia).

Before I go on, it’s important to point out just what would happen if I didn’t do that, if I stayed up until 12.05am, or even say, 2am. I would be very likely to spend at least the next few days in bed in an unreasonable amount of pain, not to mention fatigue. And my brain would turn even mushier than usual (brain fog).

It’s just not worth it to stay up that late and have a change of routine. I have to spend too many days in bed as it is, the last thing I want is self-inflicted New Year celebration pain/fatigue/numerous other symptoms.

Health has been a determining factor in New Year activities for more time than it should. But that’s not about to end. My chronic illness is in it for the long haul. But even before that, I struggled with this occasion.

It’s really hard to celebrate yet another year when you’re suicidal. It’s even harder when mental illness has turned life to hell and getting through the next day seems impossible without facing 365 more days. It’s just not even a bad joke. It’s beyond thinking to consider that another year is ahead, and because you might be depressed in amongst other illnesses, you can’t bear to have another year like the one you’ve just had.

I saw a meme on Facebook yesterday that loudly proclaimed that 2018 would be a better year. Really? Who said? How do you know that 2018 will be a better year? Yes, I guess we can hope. And hope is all important, especially on this occasion, but what if 2018 is a worse year? Who’s to say it won’t be?

In her (and my) younger years, my mother used to like greeting her family first thing on New Year’s Day morning with a chirpy “Happy New Year”. That’s fair enough, isn’t it? I should add that she wasn’t out late celebrating the night before, and she didn’t drink so wasn’t nursing a hangover.

Lots of people will be saying ‘Happy New Year’ on Monday. I admit that I cringe every time I hear it. The first year I was suffering from Major Depressive Disorder and was quietly (I mean I hadn’t admitted it to my parents even though I was staying at their home) desperately suicidal she was a bit stuck. And so for the next following years (too many to count), she would skip the “Happy New Year” and give me a “Well, I hope next year is better than last”. You can’t argue with her thinking, but I didn’t want to even know I was facing another year. “Mum, can’t we just skip this and get on with breakfast?”

My mother hoped that the next year would be better, and I can look back and be thankful that she hoped on my behalf because hope was completely beyond me. It’s funny (okay, well not really at all) that I am left thinking about the year ahead in terms of both my mother and myself. This time I need to hold the hope for her.

I can say with certainty that because of Alzheimer’s Disease, 2018 won’t be easy on Mum. It’s a disease that just keeps getting worse. There’s no chance of recovery and there’s no chance that 2018 will be a better year than the one we’ve just had. The disease will continue to destroy her, bit by bit. There will be less and less of a functioning brain. How do you celebrate New Year when that is ahead of you?

My hope for Mum is that her suffering is eased by the love of those around her, even those who she no longer knows. My hope is that she won’t feel alone or scared. My hope is that she will have peace.

I’m inclined to think that those hopes were something of what Mum has hoped for me, particularly in my many years of disabling mental illness. What is sad is that Mum and I didn’t have, in those years, a relationship in which she could share that with me. We weren’t close, and she and I both knew that much of what she might try to say usually ended in harsh words. It was safer to keep the silence between us. Thankfully, our relationship has changed, although too late to have those conversations.

Mum no longer comprehends that I struggle with illness of any sort. When I can’t visit her, I tell her why but she doesn’t remember the past years nor the journey I have been on. That’s probably a good thing (if any good can be found in her suffering). Maybe it means that she can join in the New Year celebrations at the dementia care facility where she lives. If she can have hopes, maybe she can hope that 2018 is better for both of us. She doesn’t understand that illness deems that unlikely.

But hey, if you’re going out to celebrate New Year with friends or family, have fun. Be safe. And take a moment to think about what you hope for in 2018.

I leave you with a quote. I read this today and was inspired by it. Maybe you will be too. I guess it is my hope for myself for the coming year. To be nobody but myself in 2018.

“To be nobody but yourself in a world
which is doing its best day and night to make you like
everybody else means to fight the hardest battle
which any human being can fight and never stop fighting.”
― E.E. Cummings

Thanks for reading

 

Cate

Illness Doesn’t Stop For Christmas

I still remember Christmas as a child. We were pretty much happy and healthy. As a Preacher’s Kid, I knew that the day would focus on church. Actually, we only opened one present in the morning before going to church. Once that was out of the way we would gather around the Christmas tree, us kids eyeing up the gifts there, but knowing they had to be opened one gift at a time, one person at a time. My brothers would be the same as me in watching carefully to ‘make sure’ that the gift distribution was fair and even. There was never a whole lot of money in the house and so presents were small, but I never felt I was going without.

The next focus would be food, that my mother prepared. Turkey, sometimes ham, followed by pavlova, sometimes trifle and always, fruit salad. My parents didn’t drink alcohol and so we drank fruit punch. My mother, a dietitian, was a great cook and it was always a good meal, with leftovers that would keep the family going for days.

But that was Christmas then. This is Christmas now.

This Christmas, illness steps up and into the way. It is such a focus that it comes first before gifts and food. Before even, who we might share the day with. I’m talking about my illness, but even before that, my mother’s illness.

As an adult battling firstly mental illness, and more recently chronic physical illness, Christmas has sometimes been ignored because of the need to simply survive ( and I mean survive literally) the day. There was one year in the 1990s where I was far from home, waiting to be admitted to a psychiatric treatment programme. There was no celebration. No gifts. No family. Not even friends. And having Anorexia at that time, there was as little food as I could manage. You could tell that I hardly had the best attitude towards the impending treatment. I walked the streets of the strange city I was in. It was exercise, it was something to do. It helped to forget what the rest of the world was doing.

Another year, discharged from hospital on Christmas Eve, I was put into respite care, still not safe enough to be allowed home but no bed available in the hospital. I watched TV that year, with my minder, a fellow ‘inmate’ and at times, my then-husband. Again, no celebration. Severe depression ruled that there was nothing to celebrate. I simply didn’t care that it was Christmas. Mental illness does not stop for Christmas.

More recently it has been a case that physical illness also doesn’t stop for Christmas. Pain doesn’t simply go away so that we can celebrate freely. My feet and legs (currently worst for me right now) aren’t free of pain. Fatigue doesn’t lift so that we have the energy for all the Christmas preparations, let alone celebrating the day. It’s fair to say that it’s a case of ploughing on regardless of the physical illness. I will recover tomorrow. For today, no one is interested in such bare realities as pain.

640px-PohutukawaCornwallis
Pohutakawa Tree, or New Zealand’s own Christmas Tree because it flowers in December. Cornwallis, Auckland. By Ed323 at English Wikipedia – Transferred from en.wikipedia to Commons., Public Domain, https://commons.wikimedia.org/w/index.php?curid=3980193

And now, my mother’s health is the centrepiece of the Christmas table. Those of you who followed my last blog, Infinite Sadness… or hope? will know that my nearly 90-year-old mother lives with Alzheimer’s Disease. Christmas most definitely does not stop for Alzheimer’s Disease or any other form of dementia.

Since Mum was diagnosed a few years ago, each year has been something different in how Alzheimer’s has stepped up to interrupt Christmas. One year I was camped on her lounge floor, on the most uncomfortable sofa bed ever, because Mum had been wandering unsafely, and I was waiting to get her out of her own home (no longer safe for her) and into nursing rest home care. At the time it’s fair to say that Mum and I didn’t enjoy each other’s company. But that didn’t matter. I was all she had at the time, and actually, on that day, she was all I had.

Last year I had just shifted her into secure dementia care two days before Christmas because she had been assessed as needing a higher level of care and couldn’t remain where she was. Last year, Christmas dinner just didn’t happen for me. It was a welcome couple of hours break at home before taking Mum out for a visit to other family members. And that would be really hard work.

It’s taken me all those years, and many more, to understand that illness doesn’t stop for Christmas. Take the images we see on television, Netflix, social media and more. You would think that illness, particularly chronic illness doesn’t exist at Christmas. One would think that we are all healthy and happy, celebrating Christmas with our families. That everyone would have someone special to celebrate the day with. That everyone would have money for gifts and for food. No one would be in pain. No one would have lost the memory of those people they love. No one would be confused, depressed or suffering.

Mum has limited awareness this year of it being Christmas. Her residence is full to overflowing with Christmas decorations and a Christmas tree. She has already had one ‘Christmas dinner’ a few days ago, with her fellow residents. Some of those residents will get to go today to celebrate with their families. But they will all have limited understanding of where they are, who they’re with and what they’re doing. They simply don’t remember. And they are confused. Almost constantly.

After a few years now of concentrating learning in Alzheimer’s Disease, I know that Mum needs to feel comfortable in her surroundings, and mainly because of that I will be ‘celebrating’ Christmas at the dementia facility where she lives, at her pace. If she’d rather doze in her chair all day, that’s okay. It’s okay to just be. Sadly, other family members are not available to be with her in any setting, and actually, at this stage, I am the only person she still knows so maybe it is for the best. Anyone else is just another stranger to her.

I don’t care that illness doesn’t stop for Christmas (sorry about the double negative). Whatever illness we face, we need to let it happen at Christmas. Otherwise, my experience tells me that we might suffer for days following. What I hope is that the people who matter to us will understand that. They will understand that illness is part of who we are and that we can’t just shake it off for a day. Illness doesn’t work like that. It’s not like in the movies.

Merry Christmas, Happy holidays for whatever occasion you might be celebrating today. I hope that you can enjoy the day, and I hope above all else that you can allow yourself to have your illness today too. Take my mother’s example and just be. I hope you have the freedom to do that.

Thanks for reading

 

Cate

 

 

‘DepressionandAnxiety’

Have you noticed how some people talk about depression and anxiety as if they are one condition? Or maybe that everyone who has one must have the other? It has been annoying me for a while now, but I think I’ve worked out why. Stigma. I’ll get to that in a while.

Before we get to it, have a look at this…

This is a television advertisement currently playing in New Zealand. from Depression.org, a mental health promotion organisation. I think they do a great job in spreading information about depression particularly. But I find some of what they share is a little misleading (including an unrelated idea put forward in this advertisment that everyone has this ‘A-ha!’ moment as a turning point to recovery. Really? Reading a book to my child will cure my depression or anxiety? But we’ll leave that for now. It’s not the point of my post).

Lately, the advertisements have been adding anxiety into the picture as if it is a simple add-on to depression. It’s fair to say that many people who are depressed also have anxiety, just as many people with anxiety also have depression. But it is not a given, and they are two quite different mental illnesses. Instead of speaking of

Depression and Anxiety

it seems more like

DepressionandAnxiety

It may well be one of those cases that you have to be seeing the range of advertisements put up by Depression.org all the time, and then you see that they run the two disorders together constantly. But maybe too, you have to be inside my head. And that is where the stigma lies.

It’s my stigma. My stigma against anxiety. Yes, for years I have been adamantly denying that I have any struggle with anxiety. Actually, I had completely convinced myself of this lie. Depression? Yes. Anxiety? Absolutely not.

Over this past year, I have been starting to realise just how much anxiety has me trapped inside a little box, refusing to let me live my life to the full.

There, I’ve said it. You have no idea how much of a big deal this is (for me).

Note to self: Cate, the world is not going to cave in for having said this.

I think that for a long time I didn’t want to have anxiety, because of memories of a friend who struggled with anxiety back when I was in my late teens. When I started to have mental health problems in my late twenties I always used to steer the conversation away from the possibility of battling anxiety along with other illnesses, because I (subconsciously) thought of it as how I had seen it in my friend. And I admit that was not the way I wanted to see myself.

While I’m sure the therapists I saw along the way knew I had anxiety, it was never something I was willing to accept. It was okay for anyone else to have anxiety, but not me. And while those therapists might have known the truth, I don’t remember any of them pushing me on the subject.

See? Stigma. (Ouch).

This week I read an excellent article, 11 Things Others Don’t Realize You Are Doing Because Of Your High Functioning Anxiety.  I’m not so convinced my anxiety is “high functioning” right now. I always get caught up on that term and never know where the line gets drawn, but the article is well worth reading.

It made me realise that when I postponed an important doctor’s appointment this week that I had waited over three months for, that there was a pattern developing in my life. I postponed the appointment on account of pain that was going to make it difficult for me to get to the appointment (it would involve a bit of walking because I wouldn’t be able to get a car park close by).

While the issue of pain was authentic, it was perhaps the angst over the issue of getting there and back (with a lot of foot and leg pain in tow) that had worked me into a state of anxiety. It wasn’t until later that I thought that perhaps the pain was all part of the anxiety I felt. Or maybe even the anxiety triggered the fibromyalgia pain. There were other issues related to the appointment that had me anxious too, but it’s fair to say that at the time, I wasn’t keen to accept it. Actually, I just didn’t even see it.

I have a whole lot more to work through in coming to terms with anxiety and how it affects my life. I realise that it has me backed into a corner and that while I thought I was managing my mental health okay right now, I realise that corner is getting tighter and darker.  Somehow I need to do something about it, and I suspect I’m going to need some help. That might sound brave and self-aware but this has taken me (gulp!) 25-odd years to even admit. I have a long way to go.

Ironically, from where I started this post, I want to finish with a quote from David Karp. He is writing about depression in his book ‘Speaking of Sadness’ but I think his words apply to me equally whether to depression or anxiety. I have ‘doctored’ it appropriate to my emphasis and hope the author will forgive me.

“Much of depression’s anxiety’s pain arises out of the recognition that what might make one feel better–human connection– seems impossible in the midst of a paralyzing episode of depression anxiety. It is rather like dying from thirst while looking at a glass of water just beyond one’s reach ”
― David A. Karp
 

Thanks for reading!

 

Cate