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

 

Uncharted Territory

“Life is uncharted territory. It reveals its story one moment at a time.”

Leo Buscaglia

 

When I was first dealing with mental illness, I found myself in a world where people wanted to know about my feelings. Feelings? I thought myself an intelligent person, but feelings were something I knew nothing about. Actually, I knew so little that I thought I was being asked what I thought.

I don’t remember  ever talking about feelings in my family while I was growing up. Actually, I’m pretty sure that we simply didn’t talk about how we felt. Even into my adult years, my parents would never talk about how they felt, so I think it’s pretty safe to say that feelings were simply not an issue for discussion.

When I found myself in the offices of doctors, therapists, and psychiatrists, they all wanted to know how I felt. And I had no idea. How I felt simply did not register with me.

In time I found myself able to explain what was happening for me using imagery. I could paint a word picture, and if the health professional had the time to listen, I was able to arrive, through the imagery, at what I was feeling.

I was depressed (apparently). I simply knew there was something very wrong. Even now, after many years of therapy to unearth my feelings, perhaps my first sense, when my mental health is on a downward spiral, is that there is something very wrong. I’m just not that sure what it is.

Using imagery I would eventually arrive at fear. Yes, I was terribly afraid.  I felt like I had fallen off a very high cliff face. I had no idea where I was. And as I fell, I wondered where I would land. It was uncharted territory.

In my mind, this cliff face was in the Waitakere ranges, west of Auckland. I lived in Auckland for a time during my childhood and later as my mental illness was revealing itself. I had childhood memories of walking in the Waitakere’s with my father and brothers. I always felt very safe with them, even on days when we might end up a little bit lost. I don’t remember there being any great rock faces from which I might fall, but my mind’s image was clearly here.

The problem when you fall, you often can’t see where you are or what is above or below. You don’t know whether you have landed at the bottom and so can’t fall any further, or whether you have landed on a ledge. And you don’t know whether the ledge you might be on, might give way and you fall further.

With depression, I found myself falling often. I would think it was rock bottom, and it couldn’t get any worse. But then, worse would come and I would be falling again. I thought I couldn’t possibly feel any worse. I couldn’t feel any more despair. But I did. Over and over.

That’s why Penny Redshaw’s (of Motivating Giraffe fame) drawing hit a note with me. It was my experience of living with depression.

rock-bottom
Image credit: Penny Redshaw,  Facebook/Pics by Penny

Thankfully, I’m not at the bottom of a very big cliff called Depression right now. But I do feel like I’m being dangled over the top of a cliff, and I am very scared terrified of what might happen next. At the moment my doctor (who doesn’t know me very well) and a psychiatrist (who doesn’t know me at all but has somehow ‘assessed’me without me being present!) have decided between them that I should come off lithium, a medication I had previously been told I would need to be on for my lifetime. The doctor has asked what I think but basically ignored my both my thoughts and my fears. It’s happening anyway.

So back to word imagery, I feel like I am being dangled over this very big cliff by these two doctors. There has been a fence (its’ name was lithium) which protected me from a fall but that’s gone and my toes are over the edge. I am currently clinging onto the few bits of greenery, the odd tree also clinging to the edge. I hope they will have strong enough roots to hold me safe (think skills I learnt in the years of therapy which might, if I am lucky, hold me fast to my well-being). Will it all be enough?

I don’t know. And if I fall, I don’t know whether it will be a ledge on which I land or the bottom. I don’t know how hard I will land.

I.Am.Afraid.

As I said, I just don’t know. We never know. With a physical illness, there is often some sort of chart, maybe just a pamphlet or maybe a book, to tell us what to expect.Sometimes it’s called a prognosis. That’s not the case with mental illness. We never know what will come next. That’s just one of the reasons why we need our friends who are on a similar journey. They ‘get’ that uncharted territory can be a scary place to go.

Stay tuned. Hopefully, I’ll be able to grab a passing tree root to stop the fall.

Thanks for reading

 

Cate

 

 

 

September 11 – A Birthday ‘Girl’

There were times when I thought birthdays were simply a kick in the teeth. A day which celebrates your life? When you’re seriously depressed? Exactly. It doesn’t work.

I would fight my family, especially my Dad. There was no way I wanted to celebrate my life or my birthday. Love him as I did, Dad couldn’t get why I didn’t want to celebrate anything, and having an eating disorder (think Anorexia) I had no desire to face any extra food. Why was all this so hard to explain? And why do all celebrations centre around food?

Now that Dad has been gone for over five years, I know he just wanted to take the bad stuff away, see me happy; and now I would give anything for him to have been here today. I would even have put up with his sometimes, over-exuberance for my life.

Sometimes birthdays are just as much about who is there, as who is missing.

This morning I took my mother to church (we do it pretty much every Sunday). I go so that Mum can continue her life-long habit of church involvement. If I didn’t go, she wouldn’t be able to. With Alzheimer’s to contend with she doesn’t altogether understand that this is the only reason I go, but that’s okay.

While I used to have a Christian faith which would fit with my mother’s church, I admit that now days I find it frustrating, bordering on annoying to even angry-making. I admit today was at the angry end of the spectrum.

So my mind wandered, out the window, and I watched as firefighters were preparing for a 9/11 commemoration ceremony across the road. I watched as they tied both American and New Zealand flags to the handrail going over the bridge. I could just see the two beams from the World Trade Center towers, which are now the focus of the Fireman’s Reserve here.

There have been times since that I hated that 9/11 was my birthday. It is a reminder of a very dark time in my life. 2001, I was desperately suicidal and had planned to be dead by my birthday. Instead, I was in a psychiatric hospital in Dunedin.  I was close to psychotic and the staff would tell me they were running out of ideas of what to do with me. I was becoming a hopeless case. I certainly felt hope-less. Without hope.

Each year when 9/11 is commemorated, I am almost forced to remember my own hell of 9/11. I actually want to think of anything but. That morning (it was actually 12 September by then in New Zealand, but that didn’t matter) the nurse woke me and told me “the world had gone mad“. I wondered what I had done. Why else would she say that?

That was fifteen years ago, and much has changed. I’m glad it has changed, and actually, I’m glad I have a birthday today. Yes, I did just say that (for the benefit of family who may be reading). Today I can remember my 9/11 hell and not have it pull me down into despair. I remember my time in Dunedin but I know it is firmly in my past.

When I see the American and New Zealand flags side by side on 9/11, I can remember what happened that day, and the people who died, but I can remember my American friends too. Without having gone through my own version of hell back 2001, I probably wouldn’t have some of the friends I now have. I’m glad I have them.

Happy Birthday to me.

Below is my gift today from my niece L, still my favourite little person in the world. She makes being alive worthwhile.

livy-birthday-001

I know you might not be able to read the message, but that’s for me anyway. The picture is of her and I. I love it.

The fact that I can now love anything, anyone and especially my five-year-old niece tells me that there is hope. I would never have imagined being able to enjoy a birthday or enjoy L.

Life isn’t perfect, I wouldn’t even say it is great. Life is what it is, and often that’s really hard. But it is worth being alive.

And that makes 9/11 worthwhile for me.

Thanks for reading

 

Cate

Spring Follows Winter

I was wrong.

There. I’ve said it. I was wrong when I suggested in my last post that there was no hope. I wrote that instead of hope there was only a void.

I don’t mean to deny how I was feeling, but that’s the point. It was a feeling, and I was forgetting what I know.

Think about it. What I know is that there is hope. At the time I wrote I was feeling that there was no hope in my life, but really, that didn’t replace what I knew.

I might feel down, discouraged, and even depressed and frustrated, but deep down…

I still believe there is hope.

It will get better.

I don’t know when, and I don’t know how, but I know it will happen. Even if I can’t rely on my own knowledge. Even if I get so down that what I forget what I know.  I know that other people who love me know there is hope (see my post Borrowed Hope).

“I am a success today because I had a friend
who believed in me and
I didn’t have the heart to let him down”

 – Abraham Lincoln

This past week I met someone who I knew about 20 years ago. I only met him once but he was a friend and work colleague of my then husband. It was at an extremely difficult time in my life. I was struggling with severe depression, PTSD and Anorexia Nervosa. I was being judged by all sorts of so-called friends and extended family.

But this man seemed to accept where we were at, and he supported my husband at a time that he needed all the support he could get. I know that I was far from easy to be married to at that time.

This week, this man reminded me that spring follows winter, and dawn follows night. It was a simple reminder of something I knew, but had forgot.

Spring starts in New Zealand this week, although it’s been a few weeks early. The weather here has been great and the spring flowers are blooming.

Image credit: Anita Martinz, Wikipedia.org Colorful_spring_garden.

Perhaps spring is my favourite season for this reason. I need to be reminded over and over again that spring follows winter. There is an end to the dark and cold. Even to the depression and despondency. It might not come for me this week, but I have hope that it will come. And that’s what matters.

To be fair, I know that spring can also contain it’s challenges. Life will be better but it might not be all plain sailing.  There might still be times of darkness. That’s the reality of mental illness. I think I’ve got to a point in my life where I can accept it, even if I don’t always like it.

Thanks for reading

Cate

Image credit: தகவலுழவன் (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

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

Image credit: Healing From Trauma: Welcome To My World

Watched**Stalked**Traumatised

He was watching, from across the road, as I stepped off the bus.

He was (also) watching from across the road, as I came out of church with my friends.

He watched as I walked down the hill from the school gates.

He drove past, three times in half an hour, as I was sitting in my friend’s car chatting.

He was sitting on his motorbike watching as I came out of work.

It took about one to two weeks for him to track me down after I had shifted house. And there he would watch as I arrived home.

He sent flowers. My skin crawled. The flowers were ugly and I gave them away.

My flatmates were interrogated, either on the phone or at the gate. What was their relationship to me?

I was visiting my friends and he saw my car parked outside. They were his friends too. As he knocked on the front door, I snuck out the back door. I never visited my friends at home again.

I came out of a church from my friend’s funeral. She had died in a car crash. He was across the road, on his motorbike, watching waiting for me. He “just wanted to talk”.

He was watching, waiting, always. But he never touched me.

♦♦♦

I was stalked by two men at the same time. They weren’t aware of each other. They never touched me while stalking me, and in those days that meant the NZ Police couldn’t do anything. The Police gave me advice, but I knew all that by now.

Constantly trying to avoid, trying to hide where I was, confidential phone numbers. The only friends I spent time with were those who would support my demand for privacy. The stalking went on for around 14 years in total. It started when I was 14, and I finally brought a stop to it when I left the city permanently at 28. It was a long time to convince myself that leaving town wasn’t giving in. It was taking control.

Post Traumatic Stress Disorder (PTSD) was diagnosed some years later, when I finally sought help (when I knew that help was actually available). You see, it wasn’t until after the stalking that I let out a breath and could finally feel my fear. I crashed. But relief didn’t come until I had the help. Meanwhile, I was still hiding, mistrustful of all.

♦♦♦

The triggers started to play on me… they included, but weren’t confined to…

Every man, who wasn’t a blood relative, was potentially unsafe to me.

Anyone who expressed a romantic interest in me, especially if they were ‘too keen’.

A gap in the curtains still meant someone could be watching me.

Motorbikes, especially the sight of them.

Going back to the city where it happened brought on terror in some suburbs and hypervigilance in all places.

Church

Dreams, nightmares.

The gift of flowers.

Later on, ‘friend requests’ on social media.

And many, many more.

After years of therapy for these and other issues, I really thought I’d finally beat the PTSD. The triggers controlling my life had lasted much long than the stalking, even though that had been long enough. It had been a long time since I had felt that all too familiar fears.

Then a few weeks ago, a man shifted into the house next door. Because of where I am living (temporary housing for earthquake recovery) our houses are very close. His kitchen looks into my bedroom. Our lounges look in on each other.

When I first shifted here there was a woman living in the house, and it was her practice to keep all her curtains pulled shut all of the time. Now I could start to understand why. I didn’t want anyone looking in on my bedroom and I have taken to keeping the curtains permanently shut for the windows facing his kitchen. Regardless of who he is, and what he does, I see him as a threat.

I hadn’t met him at this stage… but when I eventually did, I felt that familiar feeling. Elements of his personality ring warning bells for me. The fear instantly builds, and I admit that I don’t have much rational thought. I’d describe the type of man, but I can’t. And it wouldn’t be fair. Rationally I know he has done nothing to make me afraid, but this is exactly what PTSD does to me.

I just don’t want to be anywhere near that sort of man.  I’m simply afraid. It’s difficult to know that this is about memories, and feelings, from a long time ago.

I’m afraid, and while I thought I had completely dealt with PTSD, I realise I haven’t. It’s not over for me yet.

Since meeting the man I have simply done my best to stay away, but I irrationally want to move out. I’m terrified that this man is going to do what I refer to as “turn into another stalker”. I know he has done nothing to stir up this fear. I know it is completely irrational. And actually, I irrationally think that every man will eventually “turn into another stalker”.

And do you know what? It really pisses me off that those stalkers of years ago can continue to have such a hold on me. I thought I was truly over it, but this man has shown me (by doing nothing) that I’m not. And that is so disappointing.

Thanks for reading

 

Cate

Both images contained in this post remain the property of  Healing From Trauma: Welcome To My World. I hope you’ll take the opportunity to visit this great Facebook page.

 

 

 

 

 

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