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

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“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

‘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