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.

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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.

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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

 

 

Me & Carol – Part Two

TTrigger Warning:
This post contains subject matter that is difficult to read. It includes discussion of suicide including suicidal ideation, a suicide pact and suicide baiting.

This post is Part Two of my last post (Me & Carol – Part One). I recommend that you read that earlier post before reading this one.

As one of my favourite writer’s wrote:

“…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

It was Friday, when Carol had been discharged but I was still an inpatient at the local psychiatric hospital where we had got to know each other. Back then, 20 years ago, while mobile phones were common, it was certainly not everyone that owned one. I didn’t have one so relied on being able to use the patient telephone to make contact with anyone outside of the hospital.

Carol and I spoke by phone that day and she told me that she wanted to go ahead with our earlier plans (our suicide pact) to die the next day, but as I wasn’t able to be with her that she would do it alone.

It is fair to say that I totally understood her desire to die. I wanted to die too. While I’m not sure that I outright encouraged her to go ahead with the plan, I am certain that I didn’t discourage her. At the end of our conversation, she told me she was turning off her phone and that we would not speak again. I guess that we ended by saying goodbye, but I don’t remember that aspect.

What I do remember is the terrible dilemma I sat with for the next 24 hours. Would I tell someone or not? Would I get help to stop her planned suicide attempt?

The short story is that I didn’t tell anyone, and that is something I will always have to live with.

Saturday came and went, and I continued to be torn apart by what I knew, and what I imagined was happening, eventually coming to the conclusion that my friend was by now dead. I heard nothing.

It was three days later when my then-husband Dave arrived to visit that night, armed with a letter that had come in the mail. It wasn’t something I was expecting. On opening it I found that it was a ‘suicide note’ from Carol. It was hard to disguise my distress from Dave, but essential because he knew nothing, as did anyone else.

It was some days further on before I got a phone call. It was Carol, and she was in ICU. She had survived but had sustained serious damage to her heart which she would carry for the rest of her life. I admit that I was struck by a terrible dichotomy of feelings. Relieved she was alive but disappointed that she hadn’t achieved her goal. You see, I could understand her despair and desire to end her life. Our hopelessness was something we each carried, but also shared together. In my sickness, I really wanted for her pain and suffering to be over. I was disappointed for her.

In the months that followed, Carol and I went separate ways. It wasn’t something that we wanted, it’s just what happened as a result of unrelated circumstances. I shifted to another city, and after eventually ending my marriage, did not return to Wellington. We eventually lost contact and today, I have no idea where Carol is. I have looked for her on social media with no luck.

♦♦♦

Now I am setting out into the unknown. It will take me a long while to work through the grief. There are no shortcuts; it has to be gone through.
– Madeleine L’Engle

Of course, this was not over when Carol and I parted company. There was a lot for me (and presumably her) to process and work through. What I had done, in agreeing to this pact and then ‘allowing’ Carol to go ahead with the plan, was monumental. We were no longer together but I carried guilt with me from that time on. As my recovery from mental illness began, I found myself carrying more and more guilt. I began to understand the implications of what I had done. And now that we had no way of contacting each other, there was no way of working through it.

I think that it’s fair to say that friendships between people with severe mental illnesses can become pretty intense, pretty quickly. It is an emotional rollercoaster that while on that journey we gather those around us into. My experience is that particularly when you are in a group therapy environment, that rollercoaster gets bigger and faster. In group therapy, you are often sharing intimate parts of your life with other participants. You get to know each other well. But it’s an artificial environment, controlled to some extent by the therapist. At some point, it comes to an end, and in my experience, you can expect the friendships to last forever, but that often doesn’t happen. Outside of that controlled environment (for Carol and I it was the hospital), there can actually be nothing to tie you together.

In my years of mental health treatment, I can think of a number of my friendships that have been intense but actually didn’t last once outside of the therapuetic environment. I think this is what happened for me and Carol.

You may rightly wonder why I am sharing the journey I went on with Carol. Why would I even admit this stuff? Good question. I am opening myself up to all kinds of abuse.

A few months back, was the story of Michelle Carter and Conrad Roy, where Michelle (by text messages) encouraged her boyfriend Conrad, to kill himself. Michelle got 15 months prison time for her encouraging texts. At the time, the court announced it’s decision, there was a lot of fierce and hateful comments on social media towards Michelle. I hung my head while the antagonism towards Michelle Carter was in the news because I felt if people only knew, they would target me with abuse too.

What was so different in that case from what I did to Carol? It seemed the only substantial difference I could see was that Carol survived her suicide attempt. Conrad didn’t. While it was reported that both Conrad and Michelle were depressed at the time of his suicide, I suspect too that the mental illness Carol and I were both experiencing was more severe. But no excuse.

I can’t justify anything I did (and didn’t do). It is actually hard for me to imagine doing what I did, but then I am not as severely ill as I was, so perhaps I can claim to be a different person. But some people do bad things when they are severely mentally ill. Many of them end up in prison, forensic psychiatric care, or with severe consequences for what they do. Many have to live with the burden of what they did.

While thinking out loud (that’s what I do on my blog) I am struck that the biggest hurdle is perhaps to forgive oneself for what has been done while mentally ill. I think that is where I am at now. I realise that I need to forgive myself for having let Carol down. I wasn’t a good friend to her because I was so caught up in my own hopelessness that I couldn’t find hope (or help) for her.

I can’t have this conversation with Carol. I don’t even know whether she is dead or alive. But I have to find a way to forgive myself so that I can live on.

*Names have been changed to protect privacy

Thanks for reading

 

Cate

Me & Carol – Part One

TTrigger Warning:
This post contains subject matter that is difficult to read. It includes discussion of suicidal ideation, suicide and a suicide pact.

Twenty years ago, I had a year that can best be described as hell. 1997, I was living in Wellington, New Zealand with my (then) husband Dave. I had already (privately) decided that my marriage was doomed, but 1997 saw things spiral down for Dave and me. It took me until mid-1998 (and six months of intensive residential therapy) before I actually left Dave but 1997 was tough, admittedly on both of us.

But it was the year I met Carol, and for that reason, it was a very good year. Weird really, such bad and good together.

Carol was one light in a very dark period. I met her near the beginning of the year when we were both patients at a local psychiatric hospital. We were both being re-admitted pretty much as soon as we were discharged. It was a policy issue, but that’s another story. I was admitted over twenty times that year. I wasn’t being discharged because I was well or even off the crisis list. I was being discharged because they needed the bed for someone else and, so they said, they didn’t want me to become institutionalised. I think it was a little late for that. As I’m sure you can imagine, I spent most of the year there. Carol, who had Bipolar Disorder, was in a similar traffic jam and we very quickly became very close friends.

Carol Bear, given to me by Carol. On the right arm is a friendship bracelet she gave me.

Dave didn’t like our friendship. He was pretty conservative (putting it nicely because this story isn’t about him) and he objected to the friendship Carol and I had primarily because she was a lesbian and because she smoked (I hadn’t started smoking by then nor was she the catalyst to me starting). Actually, Dave wouldn’t ‘allow’ Carol in our house (at times when we were both discharged) for these reasons. I don’t know what he expected might happen if she did come to our home but I was furious and just didn’t tell him when she had been there. What he didn’t know…

I was going through a time of rebellion from my life. I had seen myself as a “nice Christian” and didn’t want to be that person anymore. That rebellion was perhaps part of the reason I had so many hospital admissions that year. As awful as hospital life was, I can now admit that in some ways it was great. I was away from my “nice Christian” marriage and with some like-minded people. I didn’t have to worry about anything, because someone else (usually a nurse) would worry for me. I had no responsibilities and the worst I might get is a night in isolation, but only if there was a bed available.

That said, I was terribly depressed and anorexic. I was recovering from Post Traumatic Stress Disorder (PTSD) and while I hadn’t been yet diagnosed with Borderline Personality Disorder (BPD) I was very clearly showing symptoms. My psychiatrist had already declared that they simply didn’t have any staff equipped with the skills to help me. I was literally said to be beyond help. Perhaps a culmination of all these psychiatric issues was chronic suicidal ideation. At that point, I had thought about and acted on suicidal thinking constantly for about three years, including my biggest suicide attempt in 1996.

The next part of the story is difficult to tell, but I feel like I need to tell it. I didn’t even accurately tell what happened when I published my book, Infinite Sadness in 2009. I was ashamed and I feared reaction. Would what I had done be the final straw, particular for my family? Would they turn their backs on me?

Carol was also chronically suicidal, and while both in the hospital we eventually formed a pact to die by suicide together. It was planned for a specific date and our goal was to both be discharged so that we could carry out our plans. We would say whatever was needed to achieve discharge.

Carol managed to convince staff that she was ‘safe’ for discharge but I didn’t. I was kept in hospital. I was really angry, perhaps mostly with myself.

“I was bruised and battered, I couldn’t tell what I felt.
I was unrecognizable to myself.
Saw my reflection in a window and didn’t know my own face.
Oh brother are you gonna leave me wastin’ away
On the streets of Philadelphia.”
– Bruce Springsteen

This is a good place to stop this story because actually, this post is not so much about the story. I will continue the story in a later post but what is important to me is how the heck did I end up part of a suicide pact?

I was “unrecognizable to myself”. I was “unrecognizable” to my friends and family. They didn’t mean to leave me “wasting away” but they didn’t know how to help me. Even the health professionals didn’t know how to help. I can’t imagine what they all would have thought if they had known about our suicide pact. Well, now the truth is out and a song just won’t be enough.

Had you told me five years earlier that this is where I would be, I would never have believed you. It just wasn’t possible that I would slide so far down to consider not only my own death but also supporting my friend’s eventual suicide. But that’s what mental illness does. Not for everyone, but when you go down as far as I went down, anything is possible at the same time as nothing seems possible. There was no hope (in both my mind and apparently in that of the experts), and because of that I was prepared to consider both Carol’s and my own death. A completely foreign thought to the Cate I had been five years earlier.

I saw this meme this morning. I found it interesting:

http://www.facebook.com/depressionyouandme/

That’s not who I was. I didn’t know I would be ok, I didn’t understand that people still loved me. I had already been told they couldn’t help me, just keep me safe! And I didn’t hope to be well anymore. I just wanted an end. I wanted an end for myself (and for Carol). Yet I was described as being depressed. I had depression.

My point is that depression looks different for different people. I hope that people who are depressed today can say each of the statements in that meme above. But it’s not where I was, and I need you to understand that I was a long way from that point when I considered our suicides.

To be part of another’s suicide plans is not right. I know that. And there are no “Buts…’

I had crossed a line. But whether I was aware of that or not, I can not tell you. I don’t remember the feelings attached to that time.

If you are to have any understanding of what I was doing, know this: I was severely and chronically mentally ill, and my thoughts were far distorted from whom I had previously been. This decision Carol and I made to die together was so badly distorted that perhaps there is no way for outsiders to understand. There are no other explanations. It just was, for both of us. It was perhaps a very clear ‘mark in the sand’ of hopelessness.

When we look at mental illness from the outside it is almost impossible to fully understand. I suggest the meme above offers a ‘nice’ image of depression and one easy for ‘outsiders’ to accept. For many, that will be how it is, but it’s not at all where I was at.

I was wrong to do what I did, but I really had little understanding of right and wrong at that time. Perhaps that is one of the reasons I had no hope.

They say “love changes everything”. I say:

“mental illness changes everything”

It’s not an excuse for what I agreed to with Carol. Her life was worth more than that. So was mine. But it happened because we were both suffering from severe mental illness. You can have no idea how you would act in similar circumstances. So please, choose not to judge us.

Part Two of Carol and my story will continue in a future post. It’s too much to contain in one post. Certainly too much for me, and maybe too much for you. I don’t promise that it will be my next post, but it will be soon so please follow so that you can be sure to read it.

  • Names have been changed to allow for privacy.

Thanks for reading

 

Cate

My Christmas Wish?

Is it too early to be publishing my Christmas wish? Surely not? My neighbours have had their rather interesting Christmas decorations up since 1 November, so surely I can get away with just one little wish.

No beating around the bush on this one. I want a new medical team. Yes, a whole team. I’m sacking the lot of them simply because I don’t trust any of them to have my best interests at heart, nor do I think their expertise are up to the challenge of my chronically bad health.

Yes, that is harsh. I know, and my health professional friends will be saying “give them a break!“. But really, that’s what I’ve been doing for too long. I can’t do it any longer. I can’t pretend I didn’t notice the inaccurate information and that I haven’t been treated as a person with unique needs, and not just a number.

I’ve had enough!

In the past six months, my need for good medical advice has been growing. By this stage, I had hoped to be well underway for getting treatment for identified medical issues. I thought I knew what was going on with my body, but it turns out that I don’t and a big part of that is down to getting incorrect information from my family doctor (GP).

I have an autoimmune condition called Graves’ Disease. I first had it diagnosed in 2010, and it has been assumed that I got it as a result of taking the psychiatric medication Lithium. At that time it was treated with medication and I eventually went into remission but I always knew it would probably come back at some stage. This year, I had all (okay, not quite all!) the signals that my Graves’ had relapsed and I have been waiting to see a specialist (an endocrinologist) for a while. I finally saw him last week.

In preparation for my appointment, I was sent to have a thyroid scan. I was asked several times whether I was taking anything with iodine, but I knew I wasn’t allowed iodine so was confident I wasn’t.

Except for a sneaky multivitamin, my GP has recommended I take some weeks earlier. Knowing I can’t have iodine I double-checked with the GP about something listed in the ingredients as “potassium iodide“. She told me (actually in writing via a text message) that “potassium iodide isn’t iodine” and so I could safely take the multivitamin. I thought that was the end of it.

Fast forward to last week and I am at the specialist appointment. He showed me the scan taken about a month earlier as well as my last scan in 2010. I expected they would be the same but they weren’t. He told me that this current scan doesn’t show any Graves’ Disease. He never said how I could have it in 2010 and not now, and because I was busy thinking about how sick I’ve been in the past months, I didn’t think to ask.

The consult went on until somehow I thought of the potassium iodide (which I had always thought was odd it wasn’t iodine). I think he asked to confirm I wasn’t taking any iodine. He was quick to tell me that potassium iodide is, in fact, iodine and I should never have been taking it.

Even more, because I had been taking it all of my blood tests and the scan would be wrong. Actually, he was pretty angry. There wasn’t quite steam coming out of his ears, but just about. The consultation came to an abrupt halt. I would have to wait three months for the iodine to get out of my body so that they would have some show of determining exactly what is going on. Meanwhile, I was clearly wasting his time!

I left feeling really angry at my GP giving me something that must surely have been pretty basic information. It was just one more time when she had made a mistake in the 18 months I have been seeing her. It’s time to find a new GP. One that will see me as a unique human being with needs that, while they might not matter to her, they matter to me a lot. More than once I had been her “first patient” with a particular issue. This must have been her first GP job!

But the story isn’t over. Less than a week later I received a copy of the specialist’s report and discovered that he had determined my eye problems over the past six months were also not Graves’ related. He hadn’t said this at the time, and I assumed that matter would be left to the Ophthalmologist appointment in two weeks time.

Now I am left with the big question:

If Graves’ is not causing my eye disturbances
(think chronic pain and double vision) then what is causing it?”

I find this rather disturbing. Of all my health issues, I think it’s fair to say that my eyes are my biggest worry. What is going on? And what will happen next? I have this probably irrational fear of being able to cope with everything else but “please don’t take my vision away!”. Ok, now I’m getting anxious!

Both of the specialist’s determinations  – no Graves’ Disease and no Thyroid Eye Disease may turn out to be wrong when in three months time the iodine is gone from my body and he sees me again, but all of this is unsettling. Autoimmune diseases don’t just vanish, so I don’t accept what he says. And my eyes? Well, apart from being constantly reminded that ‘something’ is going on with my eyes but who knows what? I think to say I am unsettled is an understatement.

Back to the point of this though, I’ve had it with doctors. I want new doctors who care about my concerns, know what they’re talking about and stick to their speciality base. I want to know my doctors have dealt (successfully) with this condition before. I get that I have multiple conditions, both of physical and mental nature. I’m not a patient who will come once a year for a flu jab. I have had great doctors in the past. I have also had terrible one’s, including one who has recently come out of prison having be charged with sexually abusing patients. I know that good doctors exist. I just want one for me. Is that too much to ask?

Oh, and I want a new dentist too. But that’s another story, for another post.

Thanks for reading

 

Cate