When The Mind Breaks

Rock-a-by baby On the tree top,
When the wind blows The cradle will rock.
When the bough breaks, The cradle will fall,
And down will fall baby Cradle and all.
                                                    – Mother Goose, c.1765

A nursery rhyme that has always struck me as (just a little) scary. Who puts a baby in a cradle, and then in a tree? What do you expect? The baby IS going to fall.

Right now (and actually for a long while previously), my life is dominated by minds that have perhaps been put in a metaphorical tree, the bough has broken and so has the mind.

Firstly, the onset and continuing existence of mental illness in my own life. Mental illness has been very obvious for around twenty years now, although thankfully (for now) it’s not quite the crisis that it has been previously. There’s always the possibility, though that the branch may break again. With the diagnoses and history I carry, I would be a fool to deny that possibility.

But now, I’m living the day-to-day reality of caring for my mother who has Alzheimer’s Disease. It is different from my own broken mind experience yet there are some very real similarities. Sadly, at this stage of medical knowledge, there is no light at the end of the tunnel with Alzheimer’s. Rather it is getting steadily worse and will continue to do so. People don’t survive Alzheimer’s. Not yet, anyway.

That breaking of minds is something I could write about endlessly. Both my own mind, and more recently my Mother’s. But it’s not where my thinking is today. Rather, I’m thinking about what is left when the mind has broken. That thinking comes from the image below, one I came across yesterday on a great Facebook page, Alzheimer’s Sucks – Memories for Joe Hennington. As an aside, I can tell you that Alzheimer’s does indeed suck, so that immediately tells me this page is a good one. It is worth a visit.

16730420_575462969313755_7719776991444878516_n
Image credit: Permission to reproduce obtained from FB: Alzheimer’s Sucks – Memories for Joe Hennington

Let me say from the outset, that it is not my intention to conclude whether or not the message contained in this image is correct. I don’t know the answer to that, and I wonder whether anyone really knows. I share it because it made me think, and so I want to discuss it. To hopefully at least start to sort out my own thinking, and maybe find a little of what others think.

This image stopped me in my tracks. “The heart holds what the mind can not“.

I had seen a similar statement before but perhaps because of where I am at with my mother’s Alzheimer’s journey, it really made me ask yesterday:

“When the mind breaks, does the heart step in and protect what really matters (what the mind held)?

Is what was loved, sustained?”

Yes, that is what I want to know. I know the easy way to look at this. I can tell myself, “yes, my mother still loves me now and will continue to do so when she no longer knows me“. That is, of course, what we all want to believe.

And what about with severe mental illness? When my mind was so terribly broken (in an admittedly different way) and I didn’t want to know my family, I suspect they might have wondered “did she still love us?” Clearly, there were times when my actions and words indicated otherwise.

I can remember my then-husband wondering “do you still love me?” Such a question came at a time when he was having to watch me continuously, primarily because the mental health services were simply not available and someone had to make sure that I stayed alive and ate something. I hated it (and I’m sure he did too). I reacted in such a way that he must really have wondered. It probably appeared that I hated him. Perhaps I did.

I don’t think I had the capability to love him (or anyone) at that time. My mind was very much broken and was fighting for survival in such a way that I wonder if love was even possible. If you could magically take away the mental illness then, of course, I would say then that I loved him. But magic isn’t real life, is it?

My mother’s Alzheimer’s Disease is different. She’s not having to fight me for her survival, in the way that I had fought my husband. There is also not some hope that we will get her back, as she was. The mother I knew, has largely faded. I don’t buy the train of thought that the person with dementia has already died and that we are simply left with her body. But that’s a whole other post so I won’t go there right now.

A few days ago Mum and I were in her room looking at something that she has always loved. I said something about it, and I saw her looking at it as if she had never seen it before. Then she looked to me and clearly wanted some explanation. It was an object rather than a person but I found it startling because it was an object she had loved. Only in the last few weeks, she had referred to it with affection, but now she had no connection to it.

And so I wonder, what about when it is a person. When it is me? When the time comes that she doesn’t recognise me, will her heart still hold what the mind has lost? Will she still love me?

I want to believe that she will, even though she won’t even be able to communicate it. Who wouldn’t want to believe this? But I suspect that it’s not quite that easy. Maybe that’s the glass half-full person I am. I don’t know.

Perhaps too, it comes from my own broken mind. I have struggled to believe my mother loved me for most of my life. We haven’t had an easy relationship. It’s difficult for me to believe that her love will be sustained when I’ve spent nearly fifty years doubting the existence of that love.

What matters is that I will keep being there for my mother, even if that love has gone. More so, perhaps I need to turn all of this around. What I need to know is that she will still know that I love her.

And in terms of my own broken mind journey, perhaps what really matters is whether I could still somehow comprehend love from my husband and my family. Actually, I’m pretty sure that I couldn’t and perhaps that was part of the problem. I’m really not convinced that my heart could hold what the mind had lost.

I suspect these are questions for which there will perhaps never be adequate answers (for me anyway). Something I perhaps have to accept as it is, without understanding.

What do you think? When the mind breaks, what happens to what the heart held? But please don’t tell me that of course, my mother loves me. If you do, I will know that you have missed my point.

“You’re so beautiful,” said Alice. “I’m afraid of looking at you and not knowing who you are.”
“I think that even if you don’t know who I am someday, you’ll still know that I love you.”
“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”
“Then, I’ll tell you that I do, and you’ll believe me.”

— Lisa Genova (Still Alice)

Thanks for reading

 

Cate

Advertisements

My Saddest Day…

The Saddest Day That a Daughter Has To Bear. That’s right. Today is my saddest day.

I’ve been there with the death of a parent, and yes, that was tough. My father died suddenly nearly six years ago. He wasn’t well, but no one expected he would die. I pounded on my father’s chest doing CPR for twenty minutes. It was just fortunate that I had learnt CPR about 25 years earlier. With the help of Emergency Services on the phone, I roughly knew what I was doing. Enough, anyway.

I felt it as one of my father’s ribs cracked beneath my pressure. I remember thinking he would be grumpy with me afterwards with his broken rib. I didn’t stop to think that my efforts to revive him wouldn’t work. I guess I couldn’t afford to think that he might die.

By the twenty minute mark I was so exhausted, and every muscle in my body ached. When you see actors doing CPR on the television, you don’t realise that actually it takes an enormous amount of energy and strength. But then they’re not really doing it. Are they?

I was so exhausted I had to stop. Unthinkable really, but I simply had not an ounce of energy left in me. I had done long-distance running and knew what that point of utter exhaustion felt like, but this was so much different and so much more. Fortunately, it was at the very minute the first paramedic came through the door. You can draw your own conclusions about how that happened right at the very moment I had to stop. The paramedic carried on for another twenty minutes. Beyond the call, really. My Dad had gone and my mother and I watched and waited for the funeral director to come. This was a new stage in our lives.

Losing my father was terribly hard. He was my best friend, hero and someone who had believed in me every step of my life. Now he was gone. I carry a diagnosis of fibromyalgia now as a reminder of the trauma, both physical and emotional, that I bore that day.

But today was quite different. Today I was ‘losing’ my mother to the Alzheimer’s Disease which has increasingly swallowed her up. She hasn’t died. I guess I haven’t really lost her. But then, I know that I have. There is no coming back from this.

Today I moved my mother into a secure (read locked!) dementia care unit. It was the saddest moment when she said in a pleading voice “you’re not going, are you?”. I had done my best to make her new room familiar, I had walked her into her new home and now it was time for me to leave. Time to let the staff take care of her.

Mum hadn’t known where we were going today. To have told her would have been wasted. We were simply going for a walk (her new home is on the same property as the old). When we got to her new room, she thought it was my room. She looked around and recognised a few of her things. Theo, the teddy bear she had once made was on her bed, as was a cushion she had embroidered back before she was married. These were her things. This was her room.

I’m no expert on Alzheimer’s Disease but perhaps since my father’s death, I have become somewhat of an expert on my mother. She’s scarcely the woman I knew. She’s barely the woman who raised me.

We used to argue day in day out, but that tension is gone. Now she depends on me for her life. When I’m not visiting, she spends hours looking for me. I have become her link to life, because while physically she’s holding on, mentally she is a shell. And today I took that shell out of her semi-familiar surroundings today and gave her a totally unfamiliar new home.

I came home and I cried. Cried for the mother I have lost. Actually, I never thought that I would cry for her. We just didn’t have that kind of relationship. Actually, we barely had any relationship. It’s not that I didn’t care, or that she didn’t care. It’s just we had never found a way to get along.

One day, my mother will die and I guess I will cry again. But the woman I knew for fifty plus years has almost totally gone. Simply leaving a shell. And that makes this my saddest day.

Thanks for reading

 

Cate

 

 

This Is My Fight (Song)

This is my fight (song) right at the moment. It feels like I am fighting all the time, which is a little ironic because I can’t stand fighting.

Put a television scene of any form of violence in front of me and I visibly flinch. I can’t bear to watch so will look away, to the extent of moving my head AND covering my eyes. I just can’t face (excuse the pun) it. Whether it’s violence against human, animal or if it is being self-directed, I can’t go there.

Even violence conveyed as sport is too much, and perhaps that’s why I am a rare kiwi who doesn’t like rugby. There is just too much violence in the game for me.

But then there is one type of violence that I don’t flinch at, and that is when I direct violence at myself. I’m not talking about self-harm, although as I’ve written often enough, it is a battle I lost for many years. It’s not even violence per se that I am referring to, but rather a fight.

I’m fighting my body right at the moment. Imagine this:

An about one inch (two and a half centimetres) below your eye is a one inch round lump. But you can’t see it when you look in the mirror. No one can see it, but if you feel around your cheek with your fingers, you can feel it. It’s solid and it feels enormous. Only you and your doctor know it is there. To everyone else, it can’t be anything because they simply can’t see it.

Yes, I am talking about myself. The lump is on the left side of my face, and it’s really doing my head in. I first went to my doctor about this about nine months ago. She told me that it didn’t matter and that no one (she meant specialists) would remove it because there were more important matters to deal with. I’m not exaggerating.

Well, that doctor and I parted company not long after. It wasn’t the off-hand way she dealt with this and another issue, but rather her inability to understand sufficient English language (my native language). We were constantly struggling to understand each other. I was seeing her because my previous doctor had retired, and I was given little choice. But it got to a point when I realised it was REALLY important that I have a doctor fluent with my language. It sounds silly, until you end up in the situation.

Anyway back to my fight. My new doctor has recently referred me to a specialist to get the lump removed and analysed. Great. (It took me a while to raise the issue again, after being fobbed off the last night.)Although the New Zealand Health System can operate at a very slow pace (usually when you want immediate results) and I have yet to learn how long I might wait.

Meantime I am fighting with myself, because while no one else knows, or wants to know, how important the immediate removal of this lump is to me, it is tearing me apart. In addition to being able to feel the lump in my fingers, I can now simply feel that there is ‘something‘ on my face and the need to get it out is at times unbearable.

I admit I have always been a ‘picker’ (not quite to the extent of dermatillomania ever being diagnosed) and I have a great deal of trouble letting lie any perceived imperfection on my skin. I struggle to let any wound heal itself without needing to pick at it. As early as I can remember I would frustrate my mother by picking at my childhood scabs and so it would take longer to heal and leave a larger scar.

This picking was perhaps the innocent start of my self-harming days. When mental illness started to take over, I simply became more violent and picked up a blade.

Do you see the problem? There are times when I just want to rip this lump out, but a rational me doesn’t because… well, this is my face and I could make a terrible mess. Sadly, other times I don’t feel anywhere near as rational as to  be able to caution myself.

I did tell my doctor of this. I didn’t want to confess to her lest she choose to send me direct to the nearest psychiatrist rather than a plastic surgeon. But she needed to know how urgently I need the issue addressed. Knowing her as I am getting to, I doubt it would make much difference. I just doubt she understands how volatile my mental well-being can be. She has never seen that side of me, and I’m sure she hasn’t had time to read back 20+ years of medical records.

And so I fight, even humming the tune. I fight to be rational about this. I fight to protect my face from unnecessary injury. I fight to preserve what mental health (health not illness! There is a difference.) I currently have.

Every time I do something (or don’t do something) to preserve that mental health, I win. No one else sees the lump. Or no one else sees the fight. But it’s in me, and I will win. I have to.

And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me

[from ‘This Is My Fight Song’ by Rachel Platten]

Has this been a completely weird post? Perhaps. Certainly, my mind has gone everywhere while I’ve written. But then, for me, that’s exactly how it is. I hope you’ve been able to follow me. One final note that sadly, this is not the only lump which my body is fighting right now. More about the other one in time.

Thanks for reading

 

Cate

Human 2 Human

Relationships with other humans have to be one of the most difficult and complex aspects of life. They are for me anyway, and there have been a few issues which have reared their ugly head for me in the past few days.

I know that friendships, family connections and intimate relationships are really hard for me and now days I am inclined to pull back from all of them.

With one failed marriage behind me, along with a string of failed relationships, I am alone and pretty certain that I will remain alone. I believe now that I not supposed to have  someone by my side. I have never believed that there is a soul mate for everyone, nor will everyone find their soul mate. Actually,I suspect my soul-mate might just have been and gone.  And sometimes circumstances just get in the way and block the way for what might have been true love.

On the other hand, it was some years ago now that I also came to the conclusion that close friendships were perhaps something I would be best to avoid. You may call it sad but I call it safe. After being let down by a number of friendships, I made a specific decision that friendships I might have been able to rely on were no longer worth it. Yes, I do have friends but not many and I try hard not to rely too much on them. I am inclined probably too much to withdraw rather than depend.

And then there is family. I have been fortunate to date with my family connections. Maybe they didn’t always understand me or my needs, but they did seem to love me. I think they still love me, but their availability  for me to rely on them is perhaps changing.

I know that my Borderline Personality Disorder (BPD) plays a part in how I relate to other humans. I’d like to say it isn’t part of the story. I’d like to say that I have it ‘under control’. But it is part of me, part of my personality if you like, and no matter how many ways I learn to control or even recover, I know that it will always be there.

An article I read highlighted for me some of the issues that float in and out of importance as issues for me with BPD:

“Most patients named gaining control over emotions, mood swings and negative thoughts, followed by reduction of municipality, self-harm and other destructive behavior and improving self-acceptance and self-confidence. However, improving relationships and improvement of social participation, social competence and job situation has been mentioned as important.”

It speaks of the issues important to patients with BPD in the treatment they need. But I use it as it easily highlights in a paragraph issues I deal with when connecting Human 2 Human.

It’s hard. It’s constantly hard, and with those issues at play perhaps it is easier to understand why I choose so often to withdraw.

This week someone important to me said:

“I don’t care…” [about you]

Ouch! Actually, it was more than “ouch”. It was fuck! Under my breath, of course.

The rest of their words no longer mattered. I had heard that they “don’t care” I didn’t matter anymore. They possibly weren’t even aware of having said it, but it was loud and clear. Maybe this person was someone I could no longer rely on (for any number of reasons). Maybe this was connected to my having BPD. Maybe I was too much. Maybe I had misinterpreted what another person might have taken differently. But then maybe it was simply about their issues not connected to me. It hurt anyway.

Do you see why Human 2 Human is hard?

Another relationship came up on my Human 2 Human radar. I know my mother’s Alzheimer’s Disease is not about me, but how I respond to something that is ever-changing is totally about me. I can’t escape this one.

In a conversation with my mother, I discovered that her memory has gone so much that she appears to know nothing of my life beyond my name and that I am her daughter (I am thankful that she still knows this). She also appears to know nothing of her life when I have been a part of it. Of course, I knew that this was coming some day but that day had arrived and it cut deep. My own mother doesn’t know me. Maybe even I don’t exist for my mother anymore.

My father passed on nearly six years ago, and it seems that while my mother sits in front of me, she is in some way gone too. I have heard the expression of grieving for someone who still lives, and that is even harder than it sounds. I feel like the wind has been blown out of me.

My parents have always been very important to me, although I admit that my mother and I have never been close, never even been friends. The tension between us has gone now. Something I can’t totally explain. But maybe she has gone too.

Perhaps my feeling of loss this week connects to my BPD. I know there will be a connection because there always is. It’s just that I have yet to work it out, to be able to put it into words. Meantime it hurts. Both instances I have described here. I need to hide away and lick my wounds.

I want the luxury of time with my therapist again, but I have no therapist anymore.

All I can do is write. I don’t claim to have any answers. Just questions. I hope that what I choose to write and share with you makes even the tiniest ounce of sense. I suspect it will make more sense with others who travel with a Borderline mind.

Thanks for reading

 

Cate

 

Me And Mum

World Alzheimer’s Day – 21 September

Image credit: courtesy of digitalart at FreeDigitalPhotos.net
Image credit: courtesy of digitalart at FreeDigitalPhotos.net

I hadn’t intended to post again so soon after my last post, but World Alzheimer’s Day today is too good an opportunity to say let’s support the people in our communities who live with Alzheimer’s. People who have the disease, people who support those with the disease, and people who are employed in working with both groups of people.

In writing about Alzheimer’s and my family’s journey it is really important to me that I don’t take advantage of my mother’s plight. She deserves her privacy, something which she has always held tightly to. She doesn’t deserve to be some kind of joke. The struggle she lives with is real, but she is also real. She has feelings. Part of my task in supporting her is to protect those feelings, even though she might not be able to express or even understand them.

This post comes from my own reactions to my mother’s illness. I have tried to write from a perspective of my journey, rather than my mother’s. I hope that in doing so, I have preserved at least some of Mum’s right to privacy.

It’s funny how things happen. I think I would be pretty much the last person my mother expected or even wanted, to be there for her as she traverses her last years – with Alzheimer’s Disease.

“The phrase ‘Love one another’ is so wise. By loving one another, we invest in each other and in ourselves. Perhaps someday, when we need someone to care for us, it may not come from the person we expect, but from the person we least expect… [ someone] whose love for us has assigned them to the honorable, yet dangerous position of caregiver.”

Peggi Speers, The Inspired Caregiver: Finding Joy While Caring for Those You Love

Mum and I never got on. Not when I was a child and not for most of my adult life. It might seem harsh but the reality is that I think Mum and I tolerated each other for the sake of my (now late) father. I always got on great with Dad, but Mum didn’t appear to understand me and I didn’t understand her. I fully expected that when she was old, we would simply go our own ways.

My father died suddenly nearly six years ago. My parents had been temporarily living with me (after they lost their home in the Christchurch 2010/11 earthquakes). I remember the night after Dad’s funeral, I looked across the room at Mum and wondered how we would go from here. Mum hadn’t been diagnosed with Alzheimer’s at that stage, but both Dad and I were clear that she was showing symptoms.

You see, Alzheimer’s runs in my family. My grandmother died of it, as did one of my uncles more recently. Earlier generations possibly bore it’s burden too. I have known it for most of my life, being only about ten when my grandmother was moved into residential care back in the late 1970’s.

Sadly, it’s something we have grown to expect. Mum never talked about this family heritage, but I’m sure she was probably quietly terrified. Frankly, I’m quietly terrified of it myself. But I’ll face that when I get there. My fear is not the focus for today.

It wasn’t long after Dad died that I got a very clear sense that he would want me to ‘be there’ for Mum. People have since told me “don’t be silly, he wouldn’t put that burden on you” but that’s not the way I saw it. To me, it was just one last thing I could do for him. I never stopped to see it as some type of burden. It was just the way it was going to be. Strangely, doing it for Mum never came into it back then. Supporting her would be definitely something I did for my father. Perhaps that’s just the way I needed to see it back then.

Mum was finally diagnosed about two years ago, but symptoms were obvious to those of us who were with her regularly, about six years earlier. And I’ve been learning ever since. I thought I knew the disease, but I really didn’t know anything until I learnt to live with it daily. There are new lessons each day.

Our relationship has changed enormously. It’s still not what I would call a typical close mother-daughter relationship. It never will be. Our relationship centres around her, and what she needs. My needs don’t really come into it. Some days that is really hard. Some days when I’m not well myself I want to scream “what about me?”. But mostly it’s okay. While Mum isn’t able to acknowledge it, I know that she needs me to prioritise her. This is her time now.

Mum needs me. She is living in a rest home, so yes, her basic needs are met. But I see her most days. I am clear that when I am not there, the staff take good care of her, but they are clear that Mum needs (and wants) my presence.

I’m the one that meets all Mum’s other needs. It might be the little things that no one would ever think of, or maybe bigger things like making decisions for her. I’m the one that notices the dirt on her shoes and stops to scrub it off just before taking her out to church. Maybe the dirt doesn’t matter, but it would have mattered to her… and so, now it matters to me.

Mum never appears to have any difficulty knowing who I am. She’s never once hesitated over my name and has no problem telling anyone who will listen that I am her daughter. That said, there are times when it’s quite clear to me that she is talking to me thinking I am my father. Other times I am a mystery third person, who she was eventually able to reveal to me was her sister (she never had a sister!).

I know that Mum has a great deal of difficulty knowing who most other people are. She’s confusing names or having to ask me who someone is. I admit that I try to keep the family names alive in her mind. I talk about my brothers (by name), about her grandchildren (again by name). I talk about my father because I can’t bear to think that she might forget the man she was married to for 53 years.

Maybe I do all of that for my own sake. Maybe I make decisions for her in such a way that will save me from having to see her suffer. I don’t know if it’s that I don’t want her to suffer, or that I can’t bear her suffering. Does that make sense? The two things are different to me.

Alzheimer’s Disease is a terribly cruel illness. I’m not the first person to write that. I see it’s cruelty daily as it robs little pieces of my mother.

I see the pictures in many Alzheimer’s publications of two brains side-by-side. On the left is a ‘normal’ brain and on the right is the smaller ‘Alzheimer’s’ brain. I wonder what my mother’s brain looks like now. How much has it shrunk? And for how long it can go on as it is? I don’t know.

The future of the journey which Mum and I are on is unknown. There is so much that is unknown. Each day, I don’t know what it will contain. Even though I already see my mother struggle so much, I know the struggle will only get worse. It’s just a matter of time. Will it be today? Or some time ahead?

What I do know, is that I have a remarkable opportunity to serve a woman, my mother, in her final days. What an honour. Seriously. I never thought I would say that, but Mum’s willingness to let me be there for her is a gift.

I read that “being a mother is about protecting your children from every conceivable thing that might cause them hurt”.  I’m not a mother myself but I now see my role as protecting my mother from everything that might cause her hurt. Sometimes I can achieve that but sometimes I can’t. At least I can try.

By choosing to look at our journey in these ways makes it bearable for me. I dearly hope that I am somehow making it bearable for Mum.

Thanks for reading

 

Cate

 

Other Posts You Might Be Interested In

Bewildered

Never Say Never

 

Please Don’t Mess With My Meds

WARNING: This post does not contain the hope that might usually be found in my blog. I’m sorry about that, but I have to be real. I hope (yes, really) that ‘normal’ service may resume soon.

It’s pretty simple. Just don’t mess with my meds.

Don’t change anything, don’t add anything, don’t stop anything. That should be simple enough, shouldn’t it?

It’s like a huge cauldron of… smoke. Me.

Yes, smoke ( see the image above). The fire beneath burns red through the hot coals. You might not be able to see the coals, but I can. I can see them and I can feel them. They will burn me in their wake and if you get too close, they will burn you.

But the smoke? It looks innocent enough but will strangle, suffocate and kill you and me both. Even at a distance.

Did you read my last post? If you did you will know that I just experienced lithium toxicity (it’s not an experience I would recommend). That is, too much lithium in my blood.

Beyond what I wrote in that post, I was sent home from hospital to detox. That involved coming off the lithium, cold turkey. The withdrawal wasn’t too bad, perhaps because the symptoms of toxicity were pretty awful and over-rode absolutely anything else.

But that wasn’t the end of this issue. Nearly a month later…

I went back onto lithium and have suffered for the decision. Now, I have had two times when lithium toxicity was thought to be the issue resulting in some major physical symptoms, and a total of four changes in lithium dose.

This week my doctor suspected I was toxic again, but after more blood tests finally concluded (yesterday) that I wasn’t. My levels were simply ‘too high’ and I needed to come off lithium again.

I’m struggling to keep up with this,so I will completely understand if you are too.

The whole time what is most on my mind is my mood. When the doctors are most worried about my medical condition, and getting the lithium out of my kidneys. Yes, I get that is important, but my worry is my mental health. Four changes in dose of any drug for your mental health and you might just be reeling too.

It’s when people start messing with my meds that my mental health is what pays.

And now I’m paying. My mental health seems to be dropping by the day and perhaps the biggest thing addressed in my blog – hope – is nowhere to be seen.

Hope is replaced by irritability on a good day, and sheer raging anger (mostly contained internally) on the other days.

Hope is replaced by a belief that I am now completely alone. Everyone in my life has gone, or so it seems.

Hope is replaced by thoughts (but not plans or actions yet!!!) of self-destruction.

And of course, hope is replaced by paranoia. Somehow I have annoyed everyone in my life, and they hate me, so they have either left me (yes, alone again) or despise me.

Hope is replaced by depression (of the sad and angry type right now – no tears yet)

Hope is replaced by nothing. Void.

About a week ago I have to admit that I came scarily close to keying someone’s car. Yes, that’s right. I was going to take a key and run it down the side of this car, leaving hundreds of dollars of damage in my wake. For at least a moment, I didn’t care.

That’s not me! I have never vandalized anything before in my life, but I was so close to doing it. I didn’t. Somehow I woke myself up from a bad dream and walked away, relieved but more than a little bit shaken.

I have been here before.

Not the vandalism, but the Depression and Borderline Personality Disorder (BPD) taking over my functioning. It is perhaps most likely that the symptoms of these mental illnesses rear their ugly heads when people are messing with my meds (my physical AND pyschotropic).

Across the last 13 years I have tirelessly taken my prescribed medication every day. There wasn’t a day when I didn’t take the medication prescribed simply because I was terrified that if I missed a day, then I would go back to the psychiatric hell that was 1993 to 2003.

I had been told in 2003 that I would have to take two medications (particularly) for the rest of my life. One was lithium. I believed the doctor.

After my experience of (particularly) the last month, and admittedly some other problems I have had with the drug over the 13 years, it has been recommended that I come off lithium permanently.

The only problem I have with this is that the doctors involved seem only interested in my medical well-being. Sure, that is a major issue but my desperate desire not to return to what was the pit of hell for me, is a much greater issue for me. I don’t want to put my life at risk, and that is what it will involve. I know it.

The doctors treating me now didn’t know me when I was in that pit. Perhaps they think I am exaggerating how bad it was. I am terrified in the possibility I could go back.

When people (yes, doctors) mess with my meds, they have to consider ALL the consequences, and they have to be listening to ME. I know myself better than they do.

Of course I know that the worst may not happen if I come off lithium completely, but I have to do my darnedest to protect myself from the possibility. I would be crazy not too.

We would all be crazy to not do this when changes to our health regime are made.

Thanks for reading!

 

Cate

The Day The Music (Lithium) Died

It was Thursday when every came to a peak. I have been sick for nearly a year.

I’m talking sick beyond that which I would call ‘normal’. Because regular readers (and I know it’s difficult to be a regular reader when I haven’t been posting anything, so thank you for hanging in there) will know I have Fibromyalgia, which makes it hard to define anything as ‘normal’.

Getting doctors to hear me has been hard, but I have persisted. Over the year I have been diagnosed with Osteoarthritis, Stress, raised white cell counts and lowered kidney function.

But the music died with one last blood test. The results showed I had lithium toxicity. It was time for the music to die.

Lithium toxicity is serious. You can die from it, and that’s the reason my doctor sent me straight to hospital (do not pass go!). Not quite serious enough to warrant an ambulance, I spent yet more money (I don’t have!) on a taxi to the hospital beacuse by now I had been ordered to stop driving.

Yes, they’ve been expecting me. My bed was ready and my name was on the wall.

It’s fair to say that I was nervous (beneath the myriad of symptoms on display and feeling decidedly unwell. Check Google if you want to know about the symptoms ). I know some doctors don’t understand that not all lithium users have Bipolar. I don’t. I was prescribed lithium for chronic suicidality and treatment-resistant depression. At the time, no one realised I had Borderline Personality Disorder.

But the more pressing concern I had is that not all doctors understand that you don’t just stop lithium. What I needed was a psychiatrist, who understood these things, but at that time of day, there was not a chance.

I was to a large extent, now at the mercy of the medical profession. Many hours passed as I lay in my allocated bed next to the nurses’ station (read that this means they were fairly concerned about me). I was in an assessment unit, and with my barely functioning head, I watched staff go hither and thither assessing what I guess is about 40 medical patients.

Eventually, the rush of staff around my bed died off. I wondered why, but later came to the conclusion they had decided I’m not about to die. Phew!

Finally, a fully-fledged doctor (read not simply a medical student sent in to ask all the embarrassing and not-so-embarrassing questions) came and announced that my lithium intake has to stop (immediately), and I had been admitted for four to five days, to “watch and see what happens”. Now, that’s scary!

My heart sunk. I’d been in plenty of hospital beds before, and I knew I didn’t want this. To start with, the pillow was horrendous (I was well enough to have worked this out). I was struggling to speak by now (probably the toxicity but no one is really sure) but I struggled to utter that I’d rather do this waiting at home.

Several more hours passed before the head doctor arrives at my bed. She agreed that I can do the waiting at home (the New Zealand Health System is such that I knew ‘they’ wouldn’t want to keep me in an expensive hospital bed if they don’t need to) but she lists off her demands. Blood tests every day, no lithium, etc… go directly to hospital if I feel worse.

Several more hours passed before the paperwork is done and I am discharged into what is a cold, winter night.

An aside at this point is that I am scared of the dark. Yes, an adult scared of the dark. Actually terrified. Think PTSD. I am alone and I am still feeling dreadfully unwell. I’m still struggling to speak. Oh and my heart rate is still pounding. But sent off into the night I had been and eventually I found a taxi home. I somehow convinced the driver to drive up my long drive to stop at my front door.

So the music (lithium) had been stopped. Remember when I said I was nervous that this would happen. Well, now I am terrified. For 13 years I have taken lithium (perhaps religiously) and in that time I have regularly been told that I should not stop taking my lithium. I realise this is something of a medical emergency, but still… I’m not meant to stop taking my lithium.

And what is going to happen now?

I describe lithium as music simply because taking lithium set the music going again. It saved my life. I went from an out-of-control, mentally ill, struggling-to-stay -alive (Scrub that! I was doing everything I could to end my life) person. I had been like that for about 10 years. It’s amazing that I hadn’t achieved my purpose. In desperation (because me and the doctors had tried everything) the doctor suggested lithium. And it changed my life. Maybe not overnight, but in time the music started again. My life was back. Obviously life was changed, but the important thing was that I had it back.

♦♦

At this point, I have been off lithium for six days and I see my doctor today to decide what happens next. Do I go back onto lithium or do I accept that lithium has done its day and I can’t have it anymore?

And that’s what terrifies me. What happens to me if I don’t have lithium? It saved my life. Ok, so it turned my life around. I am still alive because a doctor had the sense to try just one more drug. And she got the ‘right’ drug for me.

I am scared terrified that my mental health will plummet into the depths. Will my hold on life disintegrate? I simply don’t want to go back to the life I struggled with 13 years ago. No hope. No desire to live.

My ability to blog has been seriously affected by my health over the last year. It hasn’t just been about lithium toxicity, but rather a whole lot of issues that have yet to be resolved (or at least managed). That said, I love writing and I love blogging. I am going to try to get this going again. That way you can read what happens next, and maybe I can share the hope.

Meanwhile, some music:

Thanks for reading

 

Cate

I’ve Got Nothing To Complain About

First things first, let me say that I have been missing in action for too long. Somewhat ironically to this post, I have been sick. This is something I have been living with symptoms for about six months now (I know this is relatively nothing).

With this physical illness has been a bad dose of brain fog. If you’ve had it you’ll appreciate why it’s hard to write while dealing with a brain that amongst other issues, I haven’t been able to finish my sentences and I have been mixing up my words, if I can at all bring to the surface of brain the words I want in the first place. I still have little idea as to the ‘why’ of the illness. That question is yet to be answered. I try to take advantage of the good days, and so far, this is one.

I have only been anywhere near homeless once. Nearly 20 years ago. I use the word ‘homeless’ with what has to be a stretch of the imagination, but I use it for a purpose. At the time, I was mentally ill. Actually, that mental illness was far out of control and I was usually (at the time) resident in a psychiatric hospital. Actually, I spent most of 1997 as an inpatient, sometimes as a voluntary patient, and others as an involuntary patient. Neither was pleasant.

One day I was given the opportunity to go on a ‘van outing’. Wow! I don’t remember my status as a patient at the time, but I know that because I had been self-harming, I was initially told I couldn’t go, until the last-minute. While out on the van trip (to get ice-cream) I chose to run away, with another patient. There was no plan to run, on part anyway, just making the most of the opportunity. I am still embarrassed by my actions, given circumstances I took advantage of. It was plainly wrong, in so many ways. There was no way that staff could stop us because of the staff member’s incapacity. That’s why we did it.

I split up from my co-conspirator fairly quickly. She was largely interested in getting drugs, not something I was after. I spent the rest of the day walking the streets of Wellington, New Zealand trying to avoid the possibility of seeing anyone I knew, or being caught by Police. I had soon self-harmed and needed medical treatment, but I kept walking anyway. I didn’t want treatment.

For a ‘few’ hours I had no home, that was accessible to me anyway. Eventually, I was picked up by Police, taken to the local Emergency Department before being escorted back to the psychiatric hospital.

Why have I told you this? It was a long time ago but it was the closest I ever came to being homeless. I recognise that I wasn’t homeless. I just couldn’t go home. And I didn’t want to either.

Today I read an article about having a chronic illness while being homeless (in the United States). It focused on chronic physical illness, which I am now battling more than I was then battling mental illness. The article opened my eyes to something I had not stopped to consider. Living in my nice warm home with chronic illness, I have nothing to complain about when compared to the hardship faced by homeless people living with chronic illness.

Have a read.

The Impossibility of Managing a Chronic Disease While Homeless by Maralyssa Bann 

http://www.theatlantic.com/health/archive/2016/03/homeless-patients/475830/

“Living on the street, even something as simple as finding a place to store medicine can be an insurmountable challenge.”

It made me think about my attitude to my own illness. I have got nothing to complain about. I hope you are challenged in reading the article too.

Thanks for reading

 

Cate

Fighting Tooth And Nail

That’s what I am doing. Fighting ‘Tooth and Nail’. Nothing seems easy and it’s as if it’s one thing after another. Know the feeling?

When I was at high school I read a book that affected me profoundly. It was New Zealand book Tooth And Nail: the story of a daughter of the Depression by Mary Findlay. I read it firstly because at the time I was interested in the era of The Great Depression. I think we had been studying it in History class. My second reason for reading it was that the author, Mary Findlay was the great-grandmother of one of my closest friends.

She fought Tooth and Nail.  Amazon describe the book as this:

“This a the true story of Mary Findlay during the bitter days of the Depression. When her mother dies and her drunkard father harasses her, Mary is forced to fight tooth and nail for food, work and a place to live.”

It affected me profoundly not just because of the connection to my friend but also that it was a life lived much harder than anything I had ever known. My life seemed easy by comparison.

Right now nothing seems easy. There is one thing after another. I’m sure there are those in my life who still think I have it easy. I don’t have a 60 hour a week job, I don’t have, say four children, nor do I have a partner to think about. It’s true. Compared to Mary Findlay’s life I perhaps have it easy. But to me, nothing seems easy right now. And when it all boils down, it is the person’s own perception that matters.

I could easily write a post about each of what I see as my current hardships. But I haven’t. Mostly because at the time there haven’t been words, and so you won’t have seen posts from me since before Christmas. But here is a taste.

  • My 88-year-old (yes, she had a birthday) is deteriorating fast. Her physical health continues to be great, but her mental health in the form of Alzheimer’s Disease is going down hill fast. I’m learning as I go. Some days there is little to recognise the woman she was in my growing up years. And tomorrow? I face what happens to Mum next in terms of the care she needs now.
  • My doctor stripped me of Fibromyalgia. He says I don’t have it, even after four years of being treated for it and having originally been diagnosed with it by a doctor with more qualifications and experience. Apparently I simply need some Art Therapy (yes, really!) to cure my symptoms. Thankfully a few weeks after this pronouncement he announced he was leaving the country permanently. I am to be assigned a new doctor, and time will tell just what s/he will have to say.
  • My dentist has just presented me with a whopping $2,000 (that’s a whole lot of money in NZ) quote for the work I need to stop some corrosion happening in my mouth. Hear this, if you take medication regularly. The $2,000 problem is caused by dry mouth and having been on lithium for the last 12 or so years. Both of these have a terrible effect on teeth. Right now I’m still trying to pick myself up off the floor. I was gobsmacked! I am likely to have these dental issues for the rest of my life (if I listen to my Psychiatrist and stay on the medication for life, as we have previously agreed). I have no idea how I will possibly pay for this work but meanwhile, I am eating only soft foods to avoid further corrosion to my teeth (particularly my front teeth).
  • And I can’t forget the fibro symptoms of mainly pain and fatigue. You know the fibro that I don’t have? Well, those symptoms continue with more fatigue than ever. I go deal with whatever needs dealing, and then come home and collapse, literally. Day after day.

That’s just a taste, perhaps the really big issues, and maybe that doesn’t seem like a ‘tooth and nail’ battle. But it is. Like I suggested above, it’s how it seems to me that really matters. I might not be in the middle of the Great Depression like Mary Findlay, but it seems like my own ‘tooth and nail’ battle (emphasis on the ‘tooth’ because if I don’t find $2,000 soon I’ll be looking at whatever a pair of dentures cost).

It was a long time ago that I read Mary Findlay’s book but I still remember the impact it had on me. Maybe I didn’t learn this at the time I read the book but I know now that we can’t compare our hard times. As a 15-year-old reading that book, I thought her life was incredibly hard and mine incredibly easy. Actually, I was having my own pretty hard time back then, but I gave no value to my hardship. Now I have learnt that behind the scenes other people can be having incredibly difficult times. Harder than we can imagine. And it really isn’t possible to compare.

If I was to ask each one of you what are the hard things in your life right now, you could probably come up with your own list (like mine above but different). We all have our hardships, and all of those can have a bearing on  mental and physical health. Whether we tell others of our hard stuff or not, it’s there and we’re probably fighting a ‘tooth and nail’ battle to simply keep afloat.

I haven’t listed my current hardships out of wanting sympathy. Or wanting you to say you’re sorry for me. Rather I share it with you because maybe it reminds you that we’re not alone. We all are probably fighting ‘tooth and nail’. Life is hard, but we don’t do it alone. Just because your hard stuff is different from mine, it doesn’t stop me from being aware that you’re having a hard time. And that, makes a difference to me, so perhaps it makes a difference to you.

Thanks for reading

 

Cate

Bewildered

Bewildered was reflected in my eyes. I hadn’t seen it before, but there was something devastatingly familiar in that look. I couldn’t turn away from it.

I had been Bewildered in times past. It came as a symptom often not recognised, from too many anti-depressants, benzodiazepines, antipsychotics and even too much ECT (yes, it is possible to have too much). Those left me with little idea of the world around me. I didn’t know the people around me. I didn’t know the world around me. I was a little bit scared but mostly I didn’t care.

The Bewildered now reflected in my eyes was mostly not there to reflect mine in the days I needed it. I was mostly alone. It’s not that they didn’t care. I had just pushed away anyone who cared. I had moved away to places no one knew me. Those that cared were few in number. Well, that’s what Bewildered wanted me to believe.

Actually many people, admittedly at a distance, cared. Actually, many people, family and friends, wanted to care, but I couldn’t see it. Perhaps it was the psychosis, the depression or perhaps it was the drugs… they wanted me to think I was alone. Actually, Alone was the last thing I needed. Alone would kill me if I let it.

It’s what made me think when I saw Bewildered staring back at me last night. Alone is the last thing that Bewilderment needs. It’s not that it would kill them. Well, not yet and not in the way it threatened to kill me.

It is easier to stay away. Because it’s difficult. What do I say? How do I respond to Bewildered’s strange statements? How do I stay, when Bewildered seems to push me away?

I’m lucky in a way. I have my Grandfather’s example to follow. He wasn’t alive by the time I faced my Bewildered, but I know what he would have done because I’d seen him do it before. He would stare Bewildered straight in the face, and say, “I’m not leaving you”. And he didn’t.

Whatever Bewildered you find reflected in your eyes, I challenge you to stare them straight back in the face and say “I’m not leaving you.” It seems so small, but maybe if it can take out a little of the fear that Bewildered faces alone, it has to be worth it. It will probably be difficult, but still worth it.

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of these things and still be calm in your heart.”

 – Unknown

Peace is something that even the Bewildered deserve. No matter where that Bewildered is sourced, I believe that I can help someone Bewildered find even just a little of their own peace just by being willing to let that Bewildered be reflected back in my eyes. In that, they are not alone.

Thanks for reading

Cate