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

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

 

To See A Light That Shines

Source: To See A Light That Shines

“For me, and maybe for you, if you’re in a similar situation, it became harder to let my light shine as I got older. As my mental illness took over, it became a life and death battle to keep that light shining. Depression wanted to suck the life out of my flame. It wanted to kill the spirit within me. It wanted to change, and even murder, who I was. Actually, there were times when Depression, Anorexia and Borderline Personality Disorder did a good job.”

To See A Light That Shines is my latest post on A Canvas of Minds…

Bloggers Unite for Peace

peace1

Regular readers will remember that peace is something I feel strongly about, although I admit that it has been a while since I wrote on this subject.

I feel so strongly that today I am posting twice. Unheard of! But I want to be a part of this movement (Bloggers Unite for Peace), and I encourage you to be a part of it too (details below on how you can do this).

The only thing necessary for the triumph of evil
is for good men to do nothing.”
Edmund Burke

~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~
~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~

“We are normal, everyday hard-working people with a common hobby, blogging. We hail from far and wide. We reside in different lands, on different continents. We speak different languages, eat different foods, and are of varying ages, professions, and religious and cultural backgrounds.

We do have one thing in common…

We believe that terrorist attacks, wherever they may be perpetrated; whether in France, Tunisia, Canada, Iraq, or in Denmark, Turkey, UK, Algeria, Yemen, USA, Lebanon, or in the skies over Egypt, or in India, Saudi Arabia, Australia, Afghanistan, Nigeria, Kuwait, Libya, Bangladesh, Syria, or Mali are nothing less than attacks on humanity itself. The list is long, and probably many more besides. In every place, in every country, we, as a community of human beings, are always the innocent victims.

However, we, as members of this humanity, have found we have much more, not less, in common than those who seek to polarise our global community through indiscriminate murder of our fellow brothers and sisters.

These attacks are carried out in the name of, or in support of, a cause few of us, irrespective of religious conviction, can even start to comprehend. Murder is murder, irrespective of whatever motive or cause. As a community of bloggers, standing together for peace, we say simply this…

We will not be separated or forced to cease our friendships.

We will not change our ways – we are happy as we are.

We are all different, and proudly so, and stand together as one.

We respect each other’s right to life.

We want to live in peace”.

*****

If you want to be a part of this movement check out the original post (below in green) on the blog, Uncle Spike’s Adventures. It gives you a number of ways in which you can be involved:

UNCLE SPIKE’S ADVENTURES

Thanks for reading

 

Cate

Never Say Never

I did say ‘never’. More than once. Actually I said it repeatedly for about 20 years. That’s a long time to say ‘never’ but I was sure of myself. I was sure that I never wanted to do this again. I’d been, got burnt several times, and wasn’t going to go there ever again.

About six months ago I had my first inkling that perhaps I had said ‘never’ with a little too much certainty. But I had never pictured myself in this situation, ever. While I was still saying ‘never’, I was starting to realise that I might have to change my mind sometime in the future.

I can tell you that I hate that! Having been adamant for so long, having been sure that this would never happen, and now because of a number of decisions I had made over recent years, I knew that I should never have said ‘never’. Never say never, Cate!

I have shared in past posts that my mother has Alzheimer’s Disease. It’s a cruel disease. Everyone says that but I had little idea just how cruel it was. I had seen my grandmother’s journey through Alzheimer’s. An uncle’s journey more recently. And one thing that’s sure is that I’m nowhere near the end of this Alzheimer’s journey yet. I know now that contrary to past thinking, it’s a much worse experience for my mother than it will ever be for me.

I remember being told “at least they don’t know what is happening to them”. That was a somewhat comforting thought. Just yesterday someone told me “they’re really already dead” (ouch!). But research has now found that patients do know. It’s just they don’t know what they can do about it. It’s a good reminder to me that no matter how hard this is for me, it is much worse for my mother. That’s enough for me to never say ‘never’.

For all of her life, my mother has gone to church. It has been central to her life as a child and as an adult. She was married to a minister. Now it continues to be a key aspect of her life, although she is more limited in the extent of her church activities. Apart from perhaps when she has been in hospital (rarely) I can’t think of a time when she didn’t go to church on Sunday.

When mum had to give up her driver’s licence and so couldn’t get herself to church, we set up a system where another brother (who went to the same church) would pick her up and take her to church. I would be waiting outside church at the end of the service to take mum home. Many times I have been invited to go to church with her, but I was saying ‘never’… quite firmly. I had absolutely no intention of going. But the system we had set up worked.

For a big chunk of my life, I had gone to church. I had grown up in a minister’s family so church was central to our family activities. As an adult, I had continued to go to church.

Several things happened in my teens and twenties. They dulled my enthusiasm, although I never said anything and I kept up my participation. When I was first diagnosed with a mental illness, in my late 20’s, a number of statements made to me by a few unwise people, left me concluding that church was no longer the place for me. I felt judged, and I felt uncared for. To the extreme perhaps, people who had hurt and abused me were somewhat more important to some church people than I was. My needs for safety and protection were seemingly unimportant. My experience was that church was not the compassionate and accepting place they said it was.

And so I stopped going to church… about 20 years ago.

Until now.

My thinking has driven me further away from the church. But just sometimes, it’s necessary to put that aside. My mother now needs someone to be with her when she goes to church, otherwise she probably wouldn’t be able to go for much longer.

I made a choice. I would go to church with her until the point where she can no longer go (with me).

Aside from my own beliefs and thoughts, I’m not ready to see mum unable to go to church. It is very important to her, even with her disease. For some reason that I don’t fully understand yet, I’m prepared to help her keep it in her life.

Ok, so I have only been once so far. There is little that has changed in 20 years, except some of the music. It wasn’t somewhere I felt comfortable, but my comfort was not what this exercise was about. I don’t call myself a Christian, and suspect that will continue. I didn’t agree with everything that was said. It is a middle-class church and I wondered where the inclusion of others was.

But I will be there, with her, again this Sunday. And the Sunday after. And for as long as Mum can make it.

This is about being there for my mother. Making sure that something so important to her remains in her life, and setting aside my own thinking, I hope, for her sake,  that we can keep doing this. You see, when we can’t keep going, a very large chunk of mum’s life will have been taken away by Alzheimer’s. And that will be tragic.

It’s going to be a hard road for me. But I am willing to do it, not because I love her but simply because I hate to see this disease swallow up someone’s life before it has to.

Thanks for reading

 

Cate

“looking at my reflection, in the window opposite, hollow and translucent, I see a woman disappearing. It would help if I looked like that in real life – if the more the disease advanced, the more ‘see-through’ I became until, eventually, I would be just a wisp of a ghost. How much more convenient it would be, how much easier for everyone, including me, if my body just melted away along with my mind. Then we’d all know where we were, literally and metaphysically.”

― Rowan Coleman, The Day We Met

Image credit: "across enemy lines" Flickr.com newkidontheblock/4884118391 Creative Commons 2.0

How Borderline Personality Disorder Feels To Me

CAUTION: This post contains issues of self-harm and suicidality, although not in any great detail (but you have been warned).

I have Borderline Personality Disorder (BPD).

That’s no big news for regular readers but if you’re new, it is important that I say this from the outset. I have BPD. That’s the angle that I am coming from.

Many people with BPD choose not to admit to having it, mostly for the simple reason that there is a great deal of stigma attached to the disorder. But that’s not what I want to talk about, although I hope that what I say might be in some small way helpful towards smashing that stigma.

Another reason people with BPD don’t talk about their disorder is that it is a very difficult disorder to talk about. There are many variations (think over 200), and that means that what people feel and experience is going to be different for practically every person who has it.

If there is one thing I have consistently failed at as a writer, it is to describe what BPD feels like for me in a way that satisfied my desire to get it across to others. I have tried many times. I just haven’t managed to describe it as I really feel it. Every time I have written a post about BPD I have finished feeling dissatisfied. I might have got some aspect across, but I didn’t describe how BPD is for me.

While I was diagnosed as having BPD some five years ago, I admit that for as many doctors who have said I had BPD, more said I probably don’t. They said I wasn’t typical of people with BPD. Even more said it wouldn’t be good for me to have that diagnosis (in my mind a strange thinking for diagnosing a health issue). Only those who said I do have BPD were willing to listen and hear that my experience is that BPD matches both my emotions and behaviour.

To me, it wasn’t specifics that spelt BPD but rather an intrinsic way in which I deal with my emotions and my relationships with others. Face it, that’s hard stuff to talk about.

But here are the issues for me (in no particular order).

I  am completely paranoid. I expect that friends/family are about to leave me or say awful things about me. They are constantly (in my mind) one step away from leaving me or hurting me.

You name it, a lightbulb might blow… to an argument with a friend/family member, and I will (over) react by thinking it’s time to kill myself. Yes, it’s time to kill myself because it is an assumption that one day I will commit suicide and people would always be better off without me. It’s just a matter of time! Remember this is thinking rather than actions, although given enough thought and common depressive thought, BPD will drive me in that direction.

I think that the best thing for me is to leave you… before you leave me. It would be best to quit my job just in case my boss is about to sack me. Actually this is exactly what I did in my last job. I thought they were about to sack me, so I quit. Actually I later found out that they had no intention of sacking me and were disappointed when I suddenly left.

While I haven’t self-harmed for about four years, I regularly mull over thoughts of self-harm, particularly if something in my life goes bad. It’s not that I ever got any form of high from my years of self-harming (it was about control), but I just don’t value my body enough to say “no!” to myself. Thankfully it has been four years of fighting the urge rather than actions, but to be honest, it doesn’t get easier.

Self-harm, for me, is not just cutting, etc but also includes substance abuse, extreme dieting, smoking, and excessive exercise. That’s my way of thinking about it and I accept that you may not agree. For me, it is all the negative ways I use to control myself and my body, not to mention exerting pain on myself. Not surprising now that I experience more physical pain through fibromyalgia, I am less likely to think about exerting physical pain, through self harm, on myself.

I constantly think in ‘black or white’. Good or bad. Right or wrong. I can’t for the life of me even comprehend ‘grey’. It would be so much easier if I could. I try, but I am yet to master seeing the whole spectrum.

It is possible for me to have no idea what I feel. Is it happy or sad? Is it hate or love? It is difficult, at times, to know. Maybe I feel both, at the same time. It can be right on the borderline.

My emotions can cause me pain. The great Marsha Linehan says that people with BPD are like emotional third-degree burns victims. Personally I’m not fond of that analogy, but perhaps because I don’t see that my emotions hurt me as much as physical burns victims suffer from their injuries. I hasten to add though that I claim that statement as my own but not for others. I get that for others their emotions cause as much pain as physical pain. I know many people who have BPD who would say Marsha Linehan’s analogy is completely appropriate for them.

I admit, with some reluctance, that I am inclined to think that everything is about me. In a time of extreme unwellness, I thought that 9/11 was about me. I can’t remember my reasoning but it made perfect sense to me at the time. But more commonly I assume that negative events, such as arguments and the like, are my ‘fault’. Interestingly I don’t apply the same logic to positive events. Perhaps I am only interested in destroying my health, happiness or well-being.

I have a tendency to be impulsive. I admit I have shoplifted (ok, so only once). As a child, I regularly stole from my parents. I constantly have to be careful not to engage in compulsive shopping, spending, drinking and thinking. All that said, I have rarely been impulsive in relationships, even if at times, I have failed to think things through as much as I ought

And lastly, because this is one that appeals to me, people with BPD are sometimes prone to, what one author I read called, magical thinking in which they use unrealistic thoughts and beliefs to solve problems in their life (Robert Friedel in Borderline Personality Disorder Demystified, 2004). I admit that I do this (I’m not going to go into detail), although have never before seen it attributed as relating to BPD. My psychiatrist prefers to call it my ‘weirdness’.

Having written all that (and apologies for the length), I think I have gone somewhat closer to describing BPD as it feels to me, but, I am somewhat terrified. Firstly, how are you going to treat me now that you have seen inside? But secondly, I need to remind you that this is me. It is not how it is for others with BPD. Maybe some of it might apply, but just as easily, some of it won’t.

With the distinct possibility that I have not succeeded in what I set out to do with this post, I am including a link to another person’s version of what BPD feels like. I found it very useful and the temptation was to post it simply as it is. But I needed to do the ‘Cate version’, which would only ever be written. I hope you take time to watch. For each person who chooses to tell what BPD feels like to them, I believe more will learn and experience what BPD really is, and maybe one day the stigma against us will reduce.

I have such an unstable sense of self that I fear my post will somehow destroy me and my relationships. Somehow it will confirm what I have suspected to be your earlier suspicions that I am a fake, a fraud and just too much work. I am posting it anyway because I know that writing this has somehow been a good journey for me. As much as I hope you have learnt something, I know that I have learnt. It is good for me to be able to say “this is how it feels to me”.

One last thing I need you to know. You don’t have to try to somehow assure me that I’m not that fake, fraud or whatever. You don’t have to assure me of anything. All I wanted to do is done. I have shared how it is for me.

Thanks for reading

 

Cate