Monday, 16 July 2018

Bipolar and Saying No: Why I Can’t Always Do Fun Things with You

An open letter to a friend by Julie A. Fast

Dear Friend,

It really upsets me that I have to say no all of the time. I see that you are going to the coast and staying in a cabin while having a barbecue. That really sounds fun. A few of you went to New York last week for a vacation. That sounds amazing. Another friend often has a TV night with her friends and sleeps on the couch if she has too much wine. That sounds like fun!

Some of my friends work a seventy hour week and it sounds exciting.

Others go to sporting events and sit way up in the stands and tell me it was amazing!

I want you to know how much I appreciate it that you ask me to do these things and then explain why I can’t join you.

It’s the bipolar. I don’t ever use bipolar as an excuse for bad behavior. That is why we are such good friends. You trust me and I trust you. But I know that my inability to be as social as you might like can cause us some problems.

If there is a party, I might say no or I might have to leave early. I will never hang out all night for New Year’s Eve and that block party that everyone says is so much fun is just a lot of noise in my bipolar brain.

You are not the reason I say no. In fact, I want you to continue to ask me to do things. You might have noticed that I sometimes do say yes to the evening or day long plans!

But for now, I want you to know how much I appreciate it when we meet for breakfast. Tea or an early happy hour is really great. I love going to karaoke by the hour because we can get there early and leave early. We still get to sing!

I LOVE it that you have so many friends and that you invite me to your parties. I know it is frustrating when you hear me say I am lonely, as I am the one who often says no to your events.

I’m writing this so that we can keep our friendship strong. Here is how you can help me and here is why I appreciate your friendship SO much.

  1. Bipolar is a sleep disorder. If you think of it that way, it will help you see why I have to say no to anything that disrupts sleep. You know how you can do a hood to coast run, stay up all night manning a booth for your other runner friends, meet for pancakes the next morning and then sleep it off the next day? That is not possible for me. That situation could put me in the hospital. I know. It’s crazy, but sleep is that important.
  2. Bipolar is predictably unpredictable. I never know for sure when I will be triggered but I know my basic triggers. Crowds — so sporting events and concerts will always be hard on me. Meeting new people. I CRAVE new experiences, but my bipolar brain interprets them as stress. So anything new is a challenge.
  3. I’m easily tired out by life. Work and seeing you for coffee might be all that I can do in one day. I hate this. I really do! But I have not been in the hospital for years and my friendships are stable because I am so careful.

These are just a few of the reasons I have to say no to things you find enjoyable and easy. And here is how you can help me.

  1. Encourage me to try new things and let me know that I can leave if it gets too rough. I am NOT saying I should say no to everything. That is unreasonable. I want to say yes, but let me have an outlet. For example, if I make it 90 minutes at a party, that is a success! If I have to leave a concert early, I probably enjoyed the first part a lot!
  2. Remind me that I am in control of my life and taking care of my bipolar is what makes our friendship strong.
  3. Remind me to think of YOUR needs. I can’t say no to everything you like and expect you to only do what I like. I truly want to find middle ground. You are my guide with this. Be honest with me. I can learn!

Thank you for being such a great friend. It has been fifteen years and counting. You are the best!

Julie

 

About the Author

Julie A. Fast is the author of Loving Someone with Bipolar Disorder, Take Charge of Bipolar Disorder, Get it Done When You’re Depressed and The Health Cards Treatment System for Bipolar Disorder. Julie is a board member of The International Bipolar Foundation, a columnist and blogger for BP Magazine, and won the Mental Health America journalism award for the best mental health column in the US. Julie was the recipient of the Eli Lily Reintegration award for her work in bipolar disorder advocacy. She is a bipolar disorder expert for the Dr.Oz and Oprah created site ShareCare.

Julie is CEU certified and regularly trains health care professionals including psychiatric residents, social workers, therapists and general practitioners on bipolar disorder management skills. She was the original consultant for Claire Danes for the show Homeland and is on the mental health expert registry for People Magazine.

She works as a coach for parents and partners of people with bipolar disorder. Julie is currently writing a book for children called Hortensia and the Magical Brain: Poems for Kids with Bipolar, Anxiety, Psychosis and Depression. She struggles a lot due to bipolar disorder. Friendships keep her going.

You can find more about her work at www.JulieFast.com and www.BipolarHappens.com.

 

Thursday, 12 July 2018

No Promises Asked For, Offered, or Needed. A Vacation Postcard to My Best Friend.

Monday July 9, 2018

Dear Fran

It is 7:10 p.m. here in the UK. 2:10 p.m. with you in Maine. This hour is our hour. Usually we would be on Skype, catching up on our news and our plans. Just hanging out together, as friends do the world over no matter where they live or how far apart in miles those places might be.

This isn’t a normal week, though, is it? I am on vacation here at Ambleside in the English Lake District. Travel – on either my part or yours – inevitably means some disruption to our routine. One Skype call per day instead of two, for example. Or shorter calls. Occasionally none. That used to hurt. These days not. Or not so much. We have learned to trust.

We are doing okay so far this week! We had video calls on Saturday and Sunday evenings, down by the jetty opposite the fish and chip shop. It is always fun to be on with you when I am “out and about,” able to not merely tell you what’s going on for me but show you.

The lake here at Ambleside (technically, where we are staying is called Waterhead, but it is part of the town of Ambleside). The roar of motorbikes leaving the car park next to where we were sitting yesterday. (Sadly, Skype doesn’t yet permit the sharing of smells: I would so have liked to share with you the tangy aroma of exhaust fumes as one biker revved her Harley in my face!) I showed you inside the Wateredge Inn, your first English pub. Maybe next time we will stay for a drink.

We touched a couple of times on chat earlier today to share our respective good mornings, and our weights. (At 185.2 lbs mine was close to the lowest it has been in many months which is especially rewarding given I’m on vacation when good practice is harder to maintain.)

No call today, though. Whilst I am enjoying the peace and tranquility of Borrans Park at the very northernmost point of Windermere (note I say tranquility, not silence: I can hear the lapping of waves at the shoreline, the call of birds in the air and on the water, voices from the pub, traffic, and a troupe of teenagers making their way in a very orderly fashion through the park) – whilst I am enjoying all this and taking photos and writing these words to share it with you later – you are out with friends having adventures of your own!

All being well – no promises asked for, offered, or needed – we will have our call tomorrow evening. And then you are off on a mini vacation of your own to Monhegan island! Four days. Three nights. No promises asked for, offered, or needed – but we will do our best to connect. To share words, the sounds of our voices, video, photos – the essence of who and where we are in the moment.

Because the moment is what we have to share. It is all any of us have. Seven plus years of moments have brought us to here as best friends. A heap more will carry us wherever we are set to go. Calls or not, Fran, I will be with you when you are away. As you are with me here today.

Hah! You just messaged me:

Milkshake AND ice cream. On boat.

– I figure you’re having fun! It’s not just that we are best friends, of course, is it? There is more to it than that. There is trust. And honesty. And vigilance. You messaged me earlier today:

Should I bring risperdal? I wonder if I am bordering on mania.

You mean today? Or for your trip? Definitely on the trip (it is on your packing list already). Worth bringing with you today if you are asking the question.

And so, at the mention of “milkshake AND ice cream,” I remind you to keep an eye out for that edge of mania. And that is how we are. We can switch seamlessly from whatever it might be that we are doing or talking about, into a deep and yet simple caring awareness that works both ways. (Not everyone gets that – that you are here as much for me as I am for you. In different ways, perhaps, but no less.) Thank you.

See you soon.

Marty

 

Wednesday, 11 July 2018

How Writing a Memoir Has Helped Me Talk More about My Mental Illness

By Peter McDonnell

I’m going to dive right in and begin. I hope people with similar problems with psychosis and anxiety can relate. Since writing a memoir of my experiences with psychosis, anxiety and recovery I have found that I can talk much more easily about my mental health issues.

Before I began my memoir in 2015 I had no interest in sharing how I was feeling about my illness with my supportive team (my parents who are both qualified psychiatric nurses, my various psychiatrists, my care coordinators etc.), friends, family and work colleagues. Now, just try and shut me up!

I often have to remind myself in general conversations that though my mental health and recovery fascinates me, other people are usually not as interested in my experiences as I am (but sometimes they are!). I had my annual appointment with my psychiatrist two weeks ago. She asked how I was, and so I began.

I am doing really well. I’ve been a bit blocked up with constipation – I understand that my medication (Clozapine) can sometimes affect this. I’ve been eating lots of fruit and veg and I bought some prune juice earlier today, so I expect the prune juice to work and I should be fine by tomorrow.

My anxiety is still improving, it’s at such normal levels now that I’m not really thinking about it and I’m not sure it’s any higher than what normal people get from time to time.

But I am wary that I’ve been challenging myself less recently. My nieces and their parents lived in London until a few months ago before moving to Denver, and taking the train or driving up to see them fortnightly was a challenge that helped me keep my abilities to stay on top of anxiety I think, and I do wonder sometimes if not having this regular challenge might make me rest on my laurels a bit and get too comfortable. For the last few years I have found that remembering to keep well is sometimes very important and if I forget to, I feel a certain dip in my general mental health.

I keep well by doing a mix of little and big things. Sometimes it’s just a case of asking my brain in the morning what kind of positivity I want to feel that day, and for reasons unknown to me, it works and eight times out of ten at the end of the day, I find that I have felt exactly how I told my brain I wanted to feel!

Other times I have found it helpful to push myself a bit and do more challenging things, like spending the day looking after my nieces in London. They lived in Chiswick and I’m very close to them, they are two and four years old. I think looking after them taught me responsibility and some of how to be a mature adult, and after doing the parenting thing for a bit, whether for an afternoon, overnight or for a few days and nights I felt very in step with the world.

It’s at this point that the doctor senses that I am doing well. I sense her sensing it. I then decide that I have more to say.

My psychosis and ideas of reference are still there, but I am controlling them well. I used to feel like people in queues and waiting rooms could read my thoughts, but it’s happening less recently. When it was bad I’d be standing behind someone in a queue and my ‘Telepathic Tourette’s’ would start and if the person in front of me was very ugly, then I’d hear in my mind “fuck me aren’t you ugly” and because of my stupid and annoying telepathic abilities (that I don’t think I have anymore) I’d think they heard me.

Then in my mind I’d feel like I had to explain to them, telepathically, that I don’t really think they are ugly, even if they looked like a Hyena. I am a nice person who doesn’t insult the afflicted; I’m not a ten out of ten myself!

But then like Tourette’s syndrome all the other insulting thoughts come out and the people around me can hear them, like ‘you’re a prick with a stupid haircut’ or ‘you smell like a landfill site’. It’s annoying, but recently it hasn’t been a problem and thoughts are appearing in a softer way in my head in these situations, so that’s a good bit of progress.

My job is going well, I used to get anxiety at work a few years ago, but I don’t anymore. My mental health memoir and website is coming along, I recently had a friend with lots of Facebook friends share a link to it and I got 2000 visits in four days. I have been working with a website guru to improve my website which is going well too.

By this stage my Doctor begins indicating that she isn’t interested in a haphazardly scattered lecture and that she has other people to see. So I wind it down and she does the usual thing, checking that I am still taking my Clozapine without any problems and she says that we could do a full check on everything via blood test, a sort of annual check-up of glucose levels, lipids, Amylase, B12 and calcium etc. She says that I seem to be doing very well. She gives me a blood form to take to the phlebotomist and we say goodbye.

I throw her an accidental curve ball as I remember that I wanted to ask if she could recommend a popular online psychosis journal that I might write a paper for. She says “No, sorry – but good luck with your writing, Peter”.

So that’s how I tend to speak to my psychiatrist. I hope it shows that a person can be comfortable talking about whatever they like to them. When you are ready, open up.

I rarely opened up to people about my mental health before I started writing about it in my spare time. For me it wasn’t really stigma or the taboo factor that made it difficult to talk. It was that the words were hard to find. It’s not easy to talk about why a panic attack may have started, or the processes involved with bringing about a period of good mental health, and often it’s complicated to answer a simple question like ‘how are you’ when you are at the doctor’s office. One is supposed to elaborate when they are asked how they are by their psychiatrist. In regular daily exchanges ‘fine thanks’ is sufficient.

If you are like me and have or have had limited social conversations due to staying at home a lot, because of anxiety issues perhaps, then the power of descriptive speech can begin to fade. Lots of people get embarrassed when discussing their mental health too.

Before I wrote my memoir, talking about the finer points of my mental health often felt like a fruitless endeavour – an impossible task. I felt like I could talk if I wanted to, but that there was no way I’d find the words to be understood properly. For many years I had very little insight or understanding of my illness. It felt like there was no way my team could understand it any better by me talking about it, because I didn’t even understand it myself.

But these days I talk about it all the time and talking is helpful for mental health for hundreds of reasons. So helpful in fact that there is a phrase assigned to the action of talking about mental health – ‘talking therapies’. Talking can help you take charge of your well-being.

The thing that allows me to verbalise it all is my writing. I have been writing about my mental health and recovery for at least four years now, including a book, articles like this one, papers for online mental health journals, travel articles and my blog. Writing has instilled a sense of enthusiasm, so now I find that my mental health and mental health in general (especially how my own experiences with mental health compare with other peoples) is my favourite subject. I can also find the right words when I need them and I am keen to pick up knowledge and tips through conversation.

If you want to use talking to feel better about your mental health I would recommend writing a journal of your thoughts about your mental health at the end of each day. Then when someone asks you how you are, either a friend at work or your psychiatrist, you will remember your journal and feel like you have some thoughts to share. You will often feel more enthusiastic and the words will be ready to go on the tip of your tongue.

About the Author

To read more of Peter’s writing about his journey with mental illness and recovery visit his website petermcdonnellwriter.com which has extracts from his memoir, articles written for other websites, his blog, a guest post page and more.

 

Wednesday, 27 June 2018

Being Jimmy Perez: Shetland and the Art of Listening

Spoiler alert: this post touches on aspects of the British television crime drama “Shetland.”

Photo credit: Doris Pecka.

Fran and I watch a lot of tv and movies together. Our talking done for the evening, Fran turns her laptop (and thus me) to face her television and we settle down to Netflix, a DVD, or occasionally a tv show.

We can see each other reflected in the screen: Fran on her couch and me in my desk chair. We might comment on what’s going on or ask a question but it’s hard to hear each other unless Fran pauses the show. So for the most part we sit and watch – and listen – in companionable silence.

It sometimes feels like we do this a bit much. We used to talk more, sharing what had gone on for us that day or making plans for whatever was coming up. We still do that, of course, just less than we did. There are reasons for the change, not least the fact that Fran’s fatigue has been especially hard on her this year. By the time we get together of an evening she is often too tired to talk much. But the other night as we watched the British detective drama “Shetland” something fell into place for me about the value and importance of listening.

We both love the show: the stunning scenery, the gritty city environment of Glasgow, the accents, the superb writing and storylines. We’ve taken the characters very much into our hearts. Played by Douglas Henshall, Detective Inspector Jimmy Perez is one of very few male roles I’ve ever identified with or wanted to emulate. This series has seen him navigate a range of personal challenges, most notably with his detective sergeant Alison “Tosh” Macintosh (played by Alison O'Donnell), his stepdaughter Cassie (Erin Armstrong), and Cassie’s biological father Duncan (Mark Bonnar). Jimmy and Duncan have a close, awkward, almost brotherly, relationship that is beautiful to watch.

What struck me is how good Perez is with people going through crisis and change. (He is less good with his own crises and changes, but isn’t that the way of things? The series closes with a hint he may finally be finding a way forward.) Whether interviewing a suspect, talking with witnesses, confronting a violent crime boss, or engaging with colleagues, his stepdaughter, or a new lover, Jimmy Perez is usually calm and measured, although he can be assertive when necessary. He doesn’t always get it right but he owns his mistakes. He comes across as honest, genuine, and caring. He is someone you’d feel safe with.

It is this aspect of his character that most interests me. More and more I find myself in a listening role. I don’t always know what to say but I have learned that what matters most is showing up, being present, and being prepared to listen. It is good to see this demonstrated so clearly, even if it is in a fictional setting.

A friend said to me the other day, “The distinction between hearing and listening is important.” She’s right. So often we imagine we have been listening to someone when really all we did was register the sounds they made. Listening is as much about the spaces between the words (and at the end of them) as it is about the words themselves. It is not as easy as it might seem.

At a meeting last week with our company’s mental health team I suggested setting up a small lending library. I have lots of relevant books at home and am more than happy to bring them in. One is Gail Evans’ Counselling Skills for Dummies: A Practical Guide to Becoming a Better Communicator and Listener. It has lots of useful information, tips, and techniques. It is well worth checking out if you get chance. I might read it again before I take it in.

Genuine listening involves far more than letting someone talk. (Or write. Much of my listening takes place online using social media, instant messaging, and emails.) There are certain things not to do. Don’t interrupt. Don’t leap in with potential fixes or your own experiences. These get in the way and are rarely as relevant to the other person as you imagine. There are specific things you can do. Check in now and again to confirm you are picking up what the other person wants to convey. Ask for clarification if necessary. Encourage gently. If you want to know more, check out the Dummies book – or ours.

Best of all, practice. That means engaging – with your friends, colleagues, partner, children, strangers. We are all different and our needs are complex and wonderful. This was brought home to me on a neurodiversity workshop I attended recently at work. The course material was good but what I found most valuable was listening as the trainers and others in the group shared their experiences, and I shared mine. (I have just noticed I am wearing a Stigma Fighters t-shirt today with the slogan “Sharing Our Stories.”)

This is where the magic happens. We can aspire to no higher calling than to be someone others feel safe enough with to be vulnerable. Be like that. Be like Jimmy.

 

Wednesday, 20 June 2018

Looking Back on a Productive and Positive Week

Saturday, June 16, 2018

I am at Tynemouth Metro station this morning. The weekend market is relatively quiet so far. Bustle without the hustle. I have a large Americano from the excellent Regular Jo’s coffee stall, and the table to myself. [Later, I was happy to share with two very dapper gentlemen I’ve spoken to before.]

I’ve caught up with my diary and written to one of my oldest (ahem, longest-standing!) friends. It is time to open my Midori notebook and think about this week’s blog post.

It has been a busy but very positive and fulfilling week for me on the mental health front. I spent an hour last evening editing the latest in a new series of articles by a great friend, renowned author and family coach Julie A. Fast. Julie’s posts are always amongst the most popular on our site. This latest one focuses on managing paranoia.

Fran and I received several messages this week from people who have read or are reading our book, or have connected with us in other ways. We’re not in the advice business but it means so much when our words resonate with others or if we have been able to shed a little light on someone else’s situation. It sounds trite but that really is what it’s all about for us.

And we gain so much in return. At the moment I am working on what will be my sixth article for Bp Magazine. (You can find the first four on my author page. The fifth will be posted up in a week or so.) My latest topic is the glamour (in the sense of enchantment) of euphoric mania. I am working from our own experience (as many of you know, Fran was in mania when we met back in 2011) but am also drawing on the experience of others who have shared with me and are happy to contribute. This kind of collaboration expands my knowledge and hopefully makes for a more rounded article. Fingers crossed on that score!

Speaking of collaboration, as I’ve mentioned elsewhere I am working with some fabulous people at the company where I work to get some new mental health initiatives off the ground. It is early days but we are beginning to pull some ideas together.

It is hard to overstate how much it means to me and I am determined to make the most of the opportunity. It has already led to new connections and conversations, new training including a half-day session next week on neurodiversity and an excellent dial-in last week on resilience, as part of Carers’ Week.

That I can do this at all is down to the support and encouragement of my boss Judith. When people care for those around them as much as she does — at work or in any other environment — anything is possible. That is the culture our newly formed mental health team is looking to foster. I drafted Vision and Mission Statements this week for us. They may be amended or someone may come up with something better altogether! But for me they capture the essence of what we are about.

OUR VISION is a working environment in which we all feel safe, supported, valued and heard.

OUR PURPOSE is to foster a workplace culture and practices free from mental health stigma and discrimination, by raising awareness of mental health conditions, support services, events and organisations, encouraging relevant education and training including Mental Health First Aid (MHFA), and providing appropriate support to colleagues, including signposting to internal and external services.

Okay. I’ve just about finished my coffee. It’s time to take a look round the market. Who knows what I might find. I am curious to find out. That’s kind of what life’s about, I think.

[I was delighted to find a superb vintage tweed jacket by Haggart’s of Aberfeldy on one of the stalls. Exactly what I have been keeping an eye out for.]

 

Saturday, 16 June 2018

Effective Strategies to Manage Paranoia in Bipolar Disorder and Schizoaffective Disorder

By Julie A. Fast

In part one of this blog, Exploring Bipolar Disorder and the Sister Diagnosis of Schizoaffective Disorder, I talked about psychosis in bipolar disorder and how some of us with bipolar also have a separate diagnosis of a psychotic disorder. Bipolar with a separate psychotic disorder is called schizoaffective disorder.

In part two I explore the topic of paranoia, a psychotic delusion. All people with bipolar disorder live with the possibility of paranoia. It’s more common than most realize. Paranoia is quite a friendship wrecker. I lived with paranoid thoughts and behaviors for many years before I learned how to control them. I still get paranoid but I’ve learned not to take it out on my friends the way I used to.

As a side note, please know that people can have paranoid behavior without having a mood disorder. Paranoid personality disorder is an example. This article is relevant to anyone who experiences paranoia.

How I Manage My Paranoia

I’ve taught myself to know what I think, say and do when I’m paranoid. I explain how I use this process in my Health Cards Treatment Plan for Bipolar Disorder. It is the only way I have found to manage my bipolar disorder as I can’t take many medications. Before I learned this system I was a tiny boat on a raging ocean of moods. I still have mood swings but I know now what they are and am able to control them. You can learn to do the same. If you’re a friend or loved one of someone with bipolar disorder or schizoaffective disorder, you can also learn to use this system to help. Here is how it works.

What I Think, Say and Do When Paranoid

What I think when I’m paranoid. Please note that I use the word ‘think’ but with delusions it really is more of a feeling than a thought.

Something isn’t right with my friend. She is upset with me and doesn’t want to tell me the truth.

People are meeting and having dinner parties and doing things without me. They don’t want me there, so they don’t invite me.

Friends think I don’t know what is going on, but I do.

Someone is upset with me. I can feel it.

No one is calling me. They are upset with me.

This is not a safe place. I have to get out of here.

Someone is following me in the car.

What I say. This is where I used to get into so much trouble! I would either say these things out loud or send an email.

I write an email or text and accuse someone of not wanting to contact me.

I ask friends, “Are you made at me?” or, “Is there something you want to talk to me about?” Or ”Is something wrong?”

I tell people, “I’m not stupid and I know that there is something wrong and you should just tell me the truth!”

J’accuse!

What I do.

I can’t look people in the eye.

I obsessively pour over emails and texts and search for hidden meanings.

I can’t sleep.

I look in my rear view mirror and see that cars are way too close. Someone is following me.

I look for recording devices. Maybe someone has hidden cameras in their kitchen.

I cut myself off from people I feel are harming me by not talking to me.

These are just a few examples. I’m interested to know if you have experienced anything listed above, either as a person with bipolar or as a friend. This paranoia symptom is often missed as it can be subtle. The internet has made paranoid communication much easier and people are very quick to accuse when it takes just a few seconds to send a message.

What if the Paranoid Feelings are Real?

I live in the creative world now and I often see my work used by other people. This is deeply distressing as you can imagine. The difference between this and what I describe above is that in most cases people actually have plagiarized my ideas. I tend to keep quiet about this as it can lead to actual paranoia, but sometimes I do have to take action. The main difference between paranoia and noticing that someone is using one of my ideas without credit is that paranoia is NEVER real. Can the two get confused? Yes, if I am paranoid I can think that someone is using my work who isn’t. This is why I use my Health Cards and never say anything unless I have facts to back me up. Even then, I might not be right!

How I Changed

One day, after a really terrible situation where I sent an awful email to a friend and effectively ended our relationship, I realized I had to change. I write about this experience in my Bp Magazine article Relationships and the Bipolar Trap. Was it easy to change? No. In fact, I still have to watch myself very carefully even though it has been almost twenty years since I sent the letter to my former friend. Here is what I do now.

  1. I memorized what I think, say and do when I’m paranoid. I can’t trust my ill self, but I can trust my well self. The well me creates the Health Card (you can simply create a list of what you think, say and do) and I then use it when I start to get paranoid. Yes, you can teach yourself the signs you are paranoid and you can learn to stop the episode from going too far. It is NOT easy. I first had to see my paranoia was a problem and then had to stick to documenting my behavior so that I could use it later.
  2. I made a promise to myself (and for the most part I have kept it) that I will NEVER, and I do mean NEVER, send a text or email or any form of communication that is accusatory. I stick to my own feelings and my own experiences. This has helped greatly. I no longer say You did this! or You are thinking this! Stopping this one action — the writing and accusing — has saved me a great deal of trouble and saved many of my relationships.
  3. I accept that I still get paranoid. My symptoms are still here but I have learned how to minimize the symptoms.
  4. I do not use any hallucinogenics. This means no cannabis (THC is a strong hallucinogenic and even when I tried low THC, or what was labeled as no THC, I got psychotic.) I keep away from any spiritual journey drugs such as magic mushrooms or Ayahuasca. My brain is too fragile to handle anything that is hallucinogenic.
  5. I tell my friends what to look for. In the beginning I needed a lot of help from others. I needed people to say, “Julie, you asked me to remind you if I thought you sounded paranoid. I am reminding you now.” This helped me a lot. Eventually, I was able to control it on my own.
  6. I keep away from people who are paranoid. I don’t have friends who believe in conspiracy theories, government cover-ups or chem trails. This doesn’t mean they are wrong and I am right. It means that this kind of person is not safe for me. It makes me ill to be around another person with paranoid thinking and talking.
  7. I put my thoughts in a journal and they STAY there. I am always shocked to go back and read what I wrote when I was sick. I think, “Good heavens. I was really paranoid. I am SO glad I didn’t say anything!”
  8. I take meds if needed. They help a lot.

It’s incredibly important to listen to others if you have the symptoms of paranoia. Your brain is not your friend when symptoms are raging. I had to ask for help with all of this.

Tips for Friends, Siblings, Family Members and Health Care Professionals

Make your own thinks, says and does list so that you will not get caught in a Bipolar Conversation. You can then decide how you want to approach the issue. I believe in preparing scripts to use when a friend is not doing well. For example,

Julie, you have been very honest with me about your bipolar disorder and I appreciate this. Right now, I feel that we are in a situation where the bipolar is doing some of the talking. I am concerned about what you are saying and feel you are in a mood swing. I’m here to discuss this with you.

Or

I know that these thoughts come up when life is stressful. I can tell you that I have not changed and you have not changed. The thoughts you have and the feelings you are experiencing sound intense, but please know they are not related to us. We can work on this together.

It helps to have a plan in place that you discuss when your friend is stable. You can ask, “What would you like me to say when I can tell you are paranoid?” And then use the words another person created for you.

Do you have signs of paranoia? Is paranoia causing problems in a friendship with someone who has bipolar? Please know that paranoia rarely goes away. It is a symptom that needs to be managed. Doing this as a team makes a lot of sense!

Julie

PS: My next post will be on trigger management. I’ll cover how I recognize and remove triggers to manage the paranoia as well as other aspects of psychosis.

 

About the Author

Julie A. Fast is the author of Loving Someone with Bipolar Disorder, Take Charge of Bipolar Disorder, Get it Done When You’re Depressed and The Health Cards Treatment System for Bipolar Disorder. Julie is a board member of The International Bipolar Foundation, a columnist and blogger for BP Magazine, and won the Mental Health America journalism award for the best mental health column in the US. Julie was the recipient of the Eli Lily Reintegration award for her work in bipolar disorder advocacy. She is a bipolar disorder expert for the Dr.Oz and Oprah created site ShareCare.

Julie is CEU certified and regularly trains health care professionals including psychiatric residents, social workers, therapists and general practitioners on bipolar disorder management skills. She was the original consultant for Claire Danes for the show Homeland and is on the mental health expert registry for People Magazine.

She works as a coach for parents and partners of people with bipolar disorder. Julie is currently writing a book for children called Hortensia and the Magical Brain: Poems for Kids with Bipolar, Anxiety, Psychosis and Depression. She struggles a lot due to bipolar disorder. Friendships keep her going.

You can find more about her work at www.JulieFast.com and www.BipolarHappens.com.

 

Wednesday, 13 June 2018

Frustration and Codependency: Getting It Wrong Is Okay

When Fran and I were developing the ideas for our book I kept a series of “Scrapbook” documents. In them I recorded anything that occurred in our lives which seemed relevant and might prove useful or helpful. Excerpts from our conversations, social media chat, and emails; snippets from my personal journal; ideas and questions; links to websites, books, and other reference material. This post is taken from notes made in December 2012, with a few minor edits for clarity.


Frustration and Codependency: Getting It Wrong Is Okay

Thursday December 13, 2012

Last night at 11 p.m. I was waiting for Fran to get home and come online. She messaged me to say she was home and was going to send [her friend] a happy birthday message. I was happy to hear that and thought she wouldn’t be long ... then she messaged that she was going to check my Facebook Wall. I started to get impatient. I felt Fran could have come on cam with me while she did that. But I put on some gentle music and did some meditative breathing while I was waiting.

Fran came on cam a little later around 11:25 or 11:30 and the first thing she said was that she had found the “two minutes of calm” video I’d posted and had meditated to that (and in fact rather longer than two minutes). I did feel pissed off then, partly because I had thought Fran and I could have done that together (which we did, later, once I had regained my composure).

Part of me recognised that — of course — Fran was and is free to do whatever she wants to do before coming online to meet with me, and she’d been out all day and must have wanted and needed a little space to herself first… But another part of me was feeling aggrieved, thinking that she knew I was waiting for her and would be eager to see her. It was a classic pouty moment!

Of course, it didn’t last too long! Fran was great with me and allowed me to feel what I was feeling, until I was ready to let go of it. THAT is why we work so well together. We understand how these things work. The day before she had been all uptight about not having heard back from [her friend] about accommodation for their trip to Barcelona and I gave her space to feel and express that so she was ready later to talk with [her friend] and get things sorted. That is what we do for each other.

All that led onto something else that is really important regarding our book.

Fran said the book needs to include difficulties the well one (caregiver) experiences as the ill one moves towards wellness: the shifts in role, the sense of abandonment. The sense that all this care has been given and what is the caregiver going to get back in return? It fit what had just happened: me feeling Fran should want to be with me as much as I wanted to be with her, whereas in fact she was taking care of herself and paying attention to what she needed in a very healthy way.

It also fit with my abandonment responses at different times, when Fran has wanted and needed to find her own space. We have plenty of examples to draw on! This is a really important topic.

 

Wednesday, 6 June 2018

Seven Things I'd Quite Like to Do in 2018: A Midyear Update

This is a midyear update on a post I wrote back in January: Seven Things I'd Quite Like to Do in 2018. Let’s see how I’ve been getting on!


1. Read Two Books

Back in January I selected two books to read (actually, to reread): Talk Like TED, by Carmine Gallo, and Peter Matthiessen’s The Snow Leopard. I have read maybe half of Talk Like TED, so I’m going to declare this one as “ongoing.” Fran and I are reading the first Outlander novel by Diana Gabaldon which counts too! I have recently thought to reread The Owl Service, by Alan Garner, not least because of its relevance to an article I am researching on the glamour (“magic or enchantment”) of mania. This was inspired by a quote from Tennyson’s Idylls of the King.

And called her like that maiden in the tale
Whom Gwydion made by glamour out of flowers

The ancient tale of Gwydion and Blodeuwedd is central to Garner’s story, which I have known and loved for years.


2. Bring My Weight Back Under 180 Pounds

I cannot tell a lie, I am not doing at all well with this one! My weight is holding more or less steady, but around 191 lbs give or take the pound or so which represents the normal “noise in the signal.” This noise is present no matter what a person weighs or whether their weight is fundamentally stable or trending up or down. This is why I weigh every day. It is the best way of tracking the genuine trend though the noise. I have (mostly!) stopped having sandwiches (or anything else to eat) late at night, which is my main failing when it comes to establishing a healthy regime. It’s clear I need to pay closer attention to what the numbers are telling me. (And to Fran who is doing a lot better at this than I am these days!)


3. Have One Weekend Away From Home

This one is achieved, although not in the way I might have expected. (That said, the possibility was at the back of my mind at the start of the year.)

My mother died on March 8 and I travelled down to Liverpool with my family at the end of that month for her funeral. Despite the circumstances — or perhaps because of them — it was a meaningful trip for me on many levels. My key memories are of walking by the riverfront with Pam, Mike, and Emma on the morning of the funeral, and the three of us reminiscing at the hotel the night before.

After the funeral I spent some time on my own, walking beside the marina. Some lines came to me which I will share here. Not poetry, perhaps.

Wandering
Wondering

How do I feel
What do I feel

Release
Relief

Re birth

Stillness
Silence

Un known
Un homed

Un tethered

Still
Calm

Centred (thank you

— Liverpool, March 26, 2018


4. Attend Two Speaking Engagements

I’ve not (yet!) had been invited to give a talk like I did at last November’s Talking FreELY event but I was asked to perform at the recent Laughing Lasses pantomime here in Newcastle for Mental Health Awareness Week. I read two of Fran’s poems, A Wild Hair and Urgency, and excerpts from our book High Tide Low Tide.

I have also been invited to read at a fundraiser for mental health charity MIND in November, which I am really looking forward to. (Thanks, Aimee!)

Last week I took up the opportunity to read two of my poems at the Newcastle Literary Salon’s event on the theme of Love and Loss. I read Valentine’s Day (massacred) and What Happened to the Lovetrees? which fit the bill perfectly. It was the first time I have performed any of my poetry in public. I think I did okay.


5. See Three Movies at the Cinema

I saw Darkest Hour at Newcastle’s lovely Tyneside Cinema. I enjoyed the experience but found the film itself disappointing. Gary Oldman was feted (and won numerous awards including an Academy Award for Best Actor) for his performance as Churchill. It was certainly an amazing performance by the makeup department but I simply didn’t feel it. The cinematographic technique of having the camera zoom out rapidly (and vertically, twice) was cumbersome and unnecessary. Likewise, the couple of battle field vignettes added nothing to the story. A few historical inaccuracies are to be expected, but the scene where Churchill took to the Tube to mix with the “common folk” was beyond ridiculous. On the other hand the critics loved the film — so what do I know?

Fran and I have watched several good movies together (via Skype) on DVD and Netflix. My Best Friend’s Wedding and My Big Fat Greek Wedding were great (our nod to A Certain Other Wedding). Ditto Notting Hill, an old favourite of mine. The TV drama Shetland is brilliant, by the way, if you get chance to see it. That’s what we are watching at the moment. It could almost persuade me to go live on a tiny island in the North Sea. Except, yunno, Wi-Fi.


6. Find a Use for My Standard Midori

This one is accomplished! After a few false starts last year I have settled on using my “big” Midori Traveler’s Notebook for planning and writing my blog posts. I started early in the year when I filled one insert with daily updates on Fran’s month-long trip to Mexico. Since that time most of my posts for our blog and all my articles for BP Magazine have started life in my Midori.

Once drafted, I type up my notes and edit them on the PC but writing with my fountain pen in my Midori allows me to “just write” more freely than I manage when at the keyboard or on my phone.


7. Shoot a Roll of Film

I am a little disappointed in myself that I have nothing to report on this one. In retrospect it would have been good to take my father’s Kodak Brownie 44B camera down to Liverpool when we were there for my mother’s funeral but it didn’t occur to me at the time. This is one I definitely want to focus on (pun intended!) in the months to come.

Did you set yourself any resolutions, objectives, or “things to do” for this year? If so, how are you doing with them?

 

Wednesday, 30 May 2018

Who Are You, Really?

By Charlotte Underwood

What is our identity? Isn’t it just a compilation of every moment between our first breath and our last? It’s our name, our background – our story. Our identity has to be who we are, surely?

“You are the author of your life” is a quote that really changed my thinking. Our life, our time on this earth creates our own novel, where we are the main character. Each event, each heartbreak and tear of joy creates a story that tells others who we are. We have the ability to shape our lives, to make a novel, the book of our life, as simple or as extravagant as we desire.

However, I do have this problem, this little tick that sticks like a thorn in my mind. Who am I, really?

I struggle a lot with understanding my identity. It’s not a split personality thing, more of an uncertainty of my true self. Years of abuse and bullying have left me confused with my own self. It seems that as soon as I think I am being true to myself, I get uncomfortable in my own skin.

This is where my story seems to become a muddle, where the plot does not thicken but seems to go around in circles. It becomes especially hard as I suffer with mental illness. How can I know who I am, when I have always been ill? Surely my true self is the one before these feelings that plagued my mind? But when was that, what version of me was that?

I know it is typical to go through many relationships and jobs and change your life goals but for me this seems to be an annual thing – I can’t seem to commit with complete confidence. I’ll start a new course and learn a new subject in certainty of my future career but months in I’ll get bored and move onto something new. It explains why it took me so many relationships before I could settle down and get married. Although I am certain that my husband and I will last forever I worry that in twenty years, will I change my mind and get bored like history tells?

I have a huge level of envy for all those who seem to have a life plan, who know what they want, go after it and become successful for it. I mean, I am twenty-two and can’t drive, haven’t finished college and have no idea what I will be doing in three months’ time. Shouldn’t I have it figured out by now?

I am hoping that by working hard on my mental health this year and trying to put myself first, with the addition of a load of self-care, that I can start to find out who I am. It can be so hard when you live with constant self-doubt, but even more so when you feel like you are in a race against your peers and your car won’t even start.

All I know, for now at least, is that life is short and can end suddenly; that’s just fact. However, that doesn’t have to be a bad thing. Maybe it just proves as a reminder that we need to reprioritise our lives, focus on really living instead of living for others. So what if I am ‘falling behind,’ maybe my life just holds other things? Right?

As my father always said, “The only thing that really matters is your own happiness”.

 

About the Author

Charlotte Underwood is a twenty-two year old from Norfolk, UK. She is a growing mental health advocate and writer who aims to inform and education on mental health. The goal is to be a friend to those in need. She believes no one should feel alone. Charlotte blogs at charlotteunderwoodauthor.com. You can also find her on Twitter and on Facebook.

 

Monday, 28 May 2018

Under Ophelia

By Jen Evans

How came you to this place and why?
It’s never as simple as a stone.
She sways unto the voices,
hearing all and heeding none.
she is collecting a myth —
a tiny island
away from ghosts,
and each twig procures a remedy.
She missteps with one foot in the water.
Is there nothing colder
than my lord’s love?
This is warmer and deeper.
She summons the sand,
his hand smoothing salt on her neck.
How the sun dried each grain to their bodies.
She never wanted to bathe.
And the sun gave her a parting gift.
Too much light isn’t enough for some.
Another foot in the river.
Oh for a simpler life,
a smaller hamlet further from the shore.

 

In memory of Heidi Sue. My best friend and soul sister.
May 28, 1972 – December 30, 1993.
Love Jen

 

Saturday, 26 May 2018

Tribe and Untribe (A Trip to the Pub)

Almost exactly a year ago I wrote about visiting Wylam Brewery Tap Room at the Palace of Arts in Exhibition Park, Newcastle. I returned today and as I sit (inside, because there’s some sort of food festival going on outside in the beer garden) I am thinking back over the months that have passed since I was here last.

My wife Pam and I have enjoyed three vacations in Cumbria: a week last July in Bowness, a week in October just outside Brough, and a week this April in Appleby. Christmas was spent quietly at home. In March we travelled down to Liverpool with our two adult children for my mother’s funeral.

At work, well I’m still “doing the same job in the same place” which hasn’t challenged me for quite some time. However, as of the past two weeks I am feeling far more optimistic and engaged. She refuses to take any of the credit but this is very much down to my brilliant boss Judith, with buy in and encouragement from senior management all the way up to and including our Chief Exec.

It occurs to me this is the third Newcastle pub I have been in this month, which must be some sort of record! It’s not the alcohol (though I would be hard pressed to fault the pint of Collingwood Pale Ale I’m drinking). Rather, it’s a growing confidence in myself as someone who needn’t feel out of place in a social setting. I am reminded of something I wrote some time ago:

Be aware of the stories we tell ourselves, especially those that begin “I'm not the kind of person who ...”

Although I’m here on my own today, an important aspect of this is that I have people locally who are glad to see me and places and events where we can meet. As I wrote recently, I have found my tribe.

Of course, if there is a tribe there must be an untribe. Fran and I have been talking recently about the importance of boundaries and distinguishing healthy connections from unhealthy ones. About those people we recognise (and are recognised by) as “our people.” Those we resonate with. Those we feel safe with and respected by.

This doesn’t mean we get to ignore or behave badly towards people who are not our tribe. (I’ve come a long way from the days when I had an Inner Circle of “Special People,” and I’m not going back there!) But it does mean we get to respect our boundaries and decide where to focus our time and energy.

There is a flipside, of course, which is that we may find ourselves on the outside of other people’s boundaries. There will be (there are, I guarantee it) people for whom we — our attention, our attitudes, life choices etc. — are fundamentally unhealthy. Even toxic. And that’s okay too. Respect the other person. Respect yourself. And move on.

I’m here. I’m me. I’m growing. I’m learning. I’m flawed. I mess up. I fess up. I love. I am loved. It is enough. I am enough.

Mine’s a pint, by the way. Cheers!

 

Sunday, 20 May 2018

#MentalHealthAwarenessWeek 2018: Finding My Tribe

Today — Saturday, May 19, 2018 — is the day of the Royal Wedding. I wish Harry and Meghan well in their life together but I brought myself out to the coast to avoid the media, and social media, onslaught. It’s just not something I feel a part of. Here at Tynemouth there is calm and space and air and sky and sea. And a bench where I can sit and write.

A week ago I was also writing. Not here but in the café at the city library. At the suggestion of my boss Judith I was drafting a piece about Mental Health Awareness Week for the corporate blog at the company I work for.

I submitted the article on Monday morning. It was published Tuesday lunchtime and to be honest I’ve been blown away by the response. It’s been picked up by management up to and including our CEO. I have a meeting next week with one of the senior managers to explore how I can get involved with the company’s mental health initiatives.

This week has also seen me out twice socially. That’s not a typo — TWICE! Both events were organised for Mental Health Awareness Week. The first was an evening of music, poetry and comedy at the Dun Cow in Jesmond, organised by The Kindness Project NorthEast and Newcastle’s Recovery College Collective.

The second event was a pantomime version of “The Wizard of Oz” at the Cluny in Ouseburn, organised by Laughing Lasses, at which I performed a reading from our book High Tide, Low Tide. I read two of Fran’s poems (“A Wild Hair” and “Urgency”) and excerpts from two of the chapters: “What Is the Secret of Your Friendship?” and “Why Do You Do It?”

The events were a lot of fun and raised much needed funds for local mental health projects. They meant a lot to me on a personal level too. I came away with a stronger sense of belonging than ever before: of belonging to a local community of people who accept me, who are genuine and open, and passionate about making a difference. Borrowing words from Fran, I feel I have found my tribe. And that’s a powerful thing.

I’m confident this new sense of engagement locally is going to complement my involvement in the wider mental health community. Published on May 6 for Mental Health Month, my Q&A interview for It’s Not Your Journey renewed our connection with Rebecca and Joe Lombardo, two tireless and inspirational workers in the mental health arena.

This week Fran and I published the first in a new series of articles by mental health author, speaker and family coach Julie A. Fast. The story of how Julie and I met online and the unfaltering support she’s shown me and Fran over the past five years is worthy of a blog post in itself. For now, I will just say thank you, Julie!

Campaigns such as Mental Health Awareness Week and Mental Health Month attract their share of resistance and criticism for not addressing some of the bigger issues. For me their principal value, and why I support them, is that they bring like-minded — and like-hearted — folk together. That has certainly been my experience. It is in such ways that we build connections, relationships, friendships, communities. It is in such ways that we empower ourselves and each other to address wider concerns and “make a sodding difference.”

In a recent post Fran and I described how we pool our respective skills and experience in our mental health work. Each of us complements and supports the other. It occurs to me that this is a wonderful template for wider collaborations too, and I look forward to whatever the next week, the next month, the next year may bring.

Who’s with me?

 

Saturday, 19 May 2018

Exploring Bipolar Disorder and the Sister Diagnosis of Schizoaffective Disorder. Is My Friend or Sibling Underdiagnosed?

By Julie A. Fast

Fran and I are delighted to present the first in a new series of articles by author, writer, and family coach Julie A. Fast. Please read Julie’s book Take Charge of Bipolar Disorder to learn more about bipolar disorder management. You can post questions and comments below and we will pass them along to Julie.


Hello everyone! This is Julie A. Fast. It’s an honor to work with Marty and Fran to help the world discover their important work and how those of us with bipolar disorder so deeply need our friends. Friends (and siblings who are often our friends) need help understanding the up and down nature of our moods as well as our other symptoms that might not fit easily into a depression or mania category.

My goal is to teach you how people with bipolar disorder think and why we act in certain ways so that you can be a part of our healing as well as our happiness. We want and need you in our lives! I am also passionately vocal about the responsibility we have as people with bipolar disorder to Treat Bipolar First and not overwhelm friends with our mental health needs. It’s a tough balance, but it is possible.

This two part series is one close to my heart. In part one I explain the difference between bipolar disorder and schizoaffective disorder. In part two, I explain how the psychotic symptom of paranoia can ruin relationships if the symptom is missed or misunderstood.

Let’s get started!

Exploring Bipolar Disorder and the Sister Diagnosis of Schizoaffective Disorder. Is My Friend or Sibling Underdiagnosed?

Bipolar disorder is a genetic illness that affects a person’s ability to regulate their mood. People with bipolar are average in terms of mood when stable, which means that bipolar is not a part of our personality. It’s an illness that sits on top of us as people. This is the main difference between bipolar disorder and personality disorders such as borderline or narcissism. People with bipolar have zero symptoms when they are not manic or depressed whereas people with borderline or other personality disorder illness will have symptoms which are consistent over time.

Without exception, bipolar mood swings are episodic. They can be darn long, but they have what is called a discrete beginning, middle and end. The only thing consistent about bipolar is that our moods are not consistent!

Anything that is consistent over time and is not episodic can’t be traditional bipolar. This is confusing as our mood swings of depression and mania can look exactly like other illnesses such as narcissism, borderline, hypochondria, explosive anger and schizophrenia. But bipolar symptoms are always encased in either a manic or depressed mood swing. And although I am repeating myself this is such an important concept I’m going to say it again: bipolar disorder mood swings have a beginning, a middle and end, after which the person with bipolar always returns to stability even if it is a brief stability.

My bipolar is disorder is chronic but I still know what it feels like to be stable. Stability is a rare rainbow unicorn for me, but it’s there and is always a goal.

(Please note that it’s uncommon for people who only have bipolar to self-harm. Suicide behaviors are common in bipolar but are not the same as self-harm. This will help you figure out what is happening with a friend: if you see self-harm you are seeing more than bipolar.)

What is Psychosis?

All people with bipolar disorder have the possibility of psychosis either during a depressed or manic episode, depending on their particular type of bipolar. What exactly does this mean? It means that the bipolar brain when depressed or manic can easily slip into psychosis as well. This is more common with full blown mania in bipolar one, but many people with bipolar depression get psychotic and simply don’t know what to look for in terms of symptoms.

Psychosis is simple. It’s a hallucination or a delusion. To reiterate, and to truly hammer this point into the ground, people who only have bipolar disorder can absolutely get psychotic, but it will only be when they are manic or depressed.

Hallucinations are of the senses. If you take your finger and point to your eyes (visual hallucinations are seeing something that is not really there,) your ears (audio or aural hallucinations are hearing something that is not really there), your nose (olfactory hallucinations are smelling something that is not really there,) your skin (tactile hallucinations where you feel there is something on your skin that is not really there) and finally your mouth (gustatory hallucinations where you taste something that is not really there) you have just described sensory hallucinations.

Delusions are more complicated. Delusions are false beliefs. They are not false thoughts or false sensations such as hallucinations. Delusions go much, much deeper into what is called an unshakable belief. Paranoia, the topic of part two of this series is a delusion. Delusions involve the real world and are combined with an imaginary world that feels just as real as what we call reality. For example, when a person believes they are being followed, they believe it. It’s not a hunch or a possibility; it’s a strong belief that has to be acted on. It is set in stone. It’s unshakable.

Psychosis is more common in bipolar one simply because the majority of full blown manic episodes come with psychosis, but many people who are depressed can get psychotic as well. It is very rare to have psychosis with hypomania. Think of psychosis in bipolar as case by case and the possibility that your friend or sibling may not even know they are having psychosis until someone explains the symptoms.

For example, if you notice that your depressed friend often asks, “Do I smell bad? Do I smell dirty?” you can look into other areas where they might be having hallucinations and make sure their health care team knows of this symptom.

And now, I’m finally to the topic of this article! I like to take the audience on a journey to get to a big topic as simply talking about schizoaffective disorder without explaining psychosis and the role psychosis plays in bipolar disorder makes the topic difficult to understand. But you are now ready!

What is Schizoaffective Disorder?

Schizoaffective means schizo (psychotic) and affective (mood). It is a genetic illness where a person has a full diagnosis of bipolar disorder and a separate diagnosis of a psychotic disorder that is made up of hallucinations and delusions. It is not bipolar disorder plus schizophrenia, as I will explain below. People with schizoaffective disorder get manic and depressed. They still can have psychosis when manic or depressed, but they can also become psychotic when they are not manic or depressed. In other words, they can be psychotic when the mood is stable.

(Please note, there is a schizoaffective disorder called depressive type which means a person has unipolar depression and a separate psychotic disorder. If you have bipolar and a separate psychotic disorder, it’s schizoaffective, bipolar type technically. But to be honest, most people mean bipolar type when they say schizoaffective disorder!)

I have schizoaffective disorder which means that I can go to a university class and be really happy to be there with a stable mood and then the overwhelm of the big class and being surrounded by people can trigger something in my brain that brings up paranoia (a psychotic delusion.) It was one reason college was so difficult for me.

To recap: people with schizoaffective disorder have bipolar disorder and a separate psychotic disorder. This is often misdiagnosed as bipolar disorder with psychotic features. There is not really a diagnosis of this type. The correct diagnosis is schizoaffective.

Does Schizoaffective Mean Schizophrenia?

NO. There are many types of psychotic disorders with schizophrenia being one of them. Those of us with bipolar disorder who get psychotic when we are NOT manic or depressed have a separate psychotic disorder that is made of hallucinations and delusions. We simply get psychotic. This is not schizophrenia. Schizophrenia has hallucinations and delusions, but also carries many more symptoms that people with schizoaffective disorder do not experience.

Please stick with me here if this is your first time reading about this diagnosis! It does get easier as you read more about these very interesting and interconnected mental health disorders.

If a person has bipolar disorder and psychosis (hallucinations and delusions) when not manic or depressed, this is schizoaffective disorder. If a person has bipolar disorder and schizophrenia, an illness that includes psychosis as well as many, many other symptoms this is not schizoaffective disorder. It is considered a separate diagnosis of bipolar disorder and schizophrenia.

I really like the Mayo Clinic webpage for a very basic explanation of mental health symptoms. Here is what they have to say about schizophrenia. Notice that it is much, much more than hallucinations and delusions.

If you are reading this and you visit the page about schizophrenia and you think, “Oh my goodness. My friend or sibling is showing signs of schizoaffective disorder or even schizophrenia,” what is your next step?

Here is what I recommend.

  1. Find out how aware your friend is about psychosis in bipolar disorder by asking questions. Part two of this article will show you how to talk about paranoia with a friend.
  2. Do your own research into the other symptoms of schizophrenia such as hygiene challenges, eye contact, social skill decline and cognitive changes and think about your friend or sibling’s behavior outside of mania and depression.

Then, decide what you need to say or do in order to keep the friendship stable and intact. It’s not the job of a friend or sibling to change another person. Our job as a friend or sibling is to learn what we can and then decide what we need from a relationship. You can’t save someone with a mental illness, just as I can’t save someone with a mental illness. But wow, can we make an impact by learning the signs and symptoms of bipolar disorder and possibly schizoaffective disorder or schizophrenia and addressing our fears and worries about what is means to care about someone with these symptoms.

By being honest with ourselves and admitting, well, it looks like my friend gets psychotic or my sibling is showing a lot more symptoms than just mania and depression, we will not be confused, but empowered.

Julie

 

About the Author

Julie A. Fast is the author of Loving Someone with Bipolar Disorder, Take Charge of Bipolar Disorder, Get it Done When You’re Depressed and The Health Cards Treatment System for Bipolar Disorder. Julie is a board member of The International Bipolar Foundation, a columnist and blogger for BP Magazine, and won the Mental Health America journalism award for the best mental health column in the US. Julie was the recipient of the Eli Lily Reintegration award for her work in bipolar disorder advocacy. She is a bipolar disorder expert for the Dr.Oz and Oprah created site ShareCare.

Julie is CEU certified and regularly trains health care professionals including psychiatric residents, social workers, therapists and general practitioners on bipolar disorder management skills. She was the original consultant for Claire Danes for the show Homeland and is on the mental health expert registry for People Magazine.

She works as a coach for parents and partners of people with bipolar disorder. Julie is currently writing a book for children called Hortensia and the Magical Brain: Poems for Kids with Bipolar, Anxiety, Psychosis and Depression. She struggles a lot due to bipolar disorder. Friendships keep her going.

You can find more about her work at www.JulieFast.com and www.BipolarHappens.com.

 

Wednesday, 16 May 2018

Crossing Roads

By Roiben

We all hope in today’s society with its constant rush and pressure that people can still be good, helpful and polite. That we would, upon seeing a person in need, stop like the much-fabled good Samaritan, and help. That we would hold doors open, offer to carry heavy bags and help an older person across the road.

However, there is such thing as being a little over-eager to help and perhaps misguided in how to go about it. I have recently begun using a long cane. Michael Cane, my new and trusty friend, is helping me get about my daily life. I had been warned that using the cane does have its drawbacks, in attracting overly helpful people. It was still a shock to the system when it happened.

I was walking a well-known route from an underground station to work. This involves crossing a few roads. I stopped at the traffic lights to the first road and prepared to wait for the lights to change. Out of nowhere a man grabbed my right arm (the arm holding the cane). He had said nothing to me up to this point. He pulled me forward a step, then signaled for me to stop by pulling my arm backwards. At that point he said “It’s red.” It took me a few moments to realize he meant the traffic light, not my stripy cane. We waited, then a lady on my right (who apparently was with the man) said “Go” and we all walked across the road.

I was glad to get across the road safely, but would have much rather done so under my own steam like I do every other week-day. The key thing here is not that the couple wanted to help me. It was how they went about it.

There is a rather over-zealous belief in today’s society that the disabled need to be helped. By this I mean a belief that we are not capable of making decisions and doing things for ourselves, so we need help to do it. In taking my arm, the man had decided I needed help to cross the road, due most likely to my cane. In doing so he removed my ability to choose for myself whether or not I wanted assistance.

This is a common thing: people “helping” disabled people because they have a cane, a wheelchair or otherwise. I have heard stories of people being pushed across the road when they did not in fact want to go that way, or being dragged to places they had no intention to go to. All because someone has assumed that is what is wanted and wants to “help”.

So, what point am I trying to make? Yes, it is a good thing to want to help your fellow human. However, doing so in a way that removes their independence, choice and in many cases dignity, is not good. I would ask that if you want to help, do one simple thing first: Ask. Ask the person with the cane, or dog, or wheelchair if they want help. They may say yes, they may say no. The point is that it should be up to the disabled individual if they require assistance in that moment.

I have had many people ask me if I want assistance. In most cases I say thank you, but I am okay. Because in all honesty, in most cases I am fine. I know where I am going and how to get there. I am still so new to using the cane that I haven’t yet been in a situation where I have needed help. I have not got lost yet or had my normal route changed to the point of disorientating me. It will happen, eventually. It just has not happened yet.

There are some indicators that a person may need help and that help would be gratefully accepted if offered. Firstly, as with non-disabled people, if someone is standing looking lost or distressed, especially if it is somewhere with many junctions, such as a tube station. Or, if someone with a guide dog is standing or sitting, and the harness is not being held (but the lead is). This may mean the individual needs assistance. In both of these cases, you should introduce yourself and then ask if assistance is needed, and what assistance that may be.

A person in a wheelchair who is just sitting looking around may well be taking in the weather – so don’t assume they need help and certainly don’t go about pushing them around places without first asking. They may have a mobility impairment but that doesn’t mean they are incapable of making decisions for themselves.

In my experience those of us with disabilities are great at adapting to the world we are faced with and are fabulous problem solvers as a result. Some of the cleverest people I have ever had the pleasure to meet have been disabled.

 

About the Author

You can find Roiben on Twitter (@roiben).

 

Wednesday, 9 May 2018

Team Gum: How Fran and I Share Our Mental Health Journey

“You’re stuck with me now, Frannie. I hope you realise that.”
“Like gum on my shoe.”

Fran and I are a team. Team Gum. That’s the starting point for pretty much everything we do, especially in the mental health arena. Our book. Our blog. Our social media presence. Podcasts. Interviews. Events. Book readings. Everything.

There are no hard and fast rules for how we balance things between the two of us and with the many other aspects of our lives. It depends on the nature of the work itself, our individual skills, experience, and preferences. It also depends on our commitments, health, and whatever else may be going on in our lives at the time. I thought it would be interesting to take a look at how it all works for us.

Mental Health Experience and Awareness

It is no secret that before I met Fran I had little knowledge or awareness of mental health. Fran had a lifetime’s worth which she shared, and continues to share, openly and honestly. Mania. Depression. Suicidality. Fatigue. Pain. Insomnia. The realities of living with chronic mental and physical health conditions.

I learned from what Fran told me and by spending time with her every day. I also learned from the books I started reading, from courses and workshops, and by engaging with others.

None of this means I really understand what it means to live with illness but I do believe it helps me set Fran’s lived experience, and that of others, in a broader context. And I have grown first-hand experience as a friend and caregiver.

Technical Skills

Fran worked as a highly successful electrical engineer before illness struck. She is technically competent which is a huge benefit, given that we live three thousand miles apart and do everything together online.

I work in the technology services industry (but please don’t ask me to troubleshoot your laptop or printer!) and have a fair measure of web, graphics, and computing experience. I love the technical side of running our social media, website and blog. When either of us is away from home I take the lead in ensuring we can keep in touch.

Writing and Creativity

Fran is a far more natural writer than I am. She is also a keen and accomplished photographer. She took the portrait photographs for her book For the Love of Peaks: Island Portraits & Stories: A Collection.

On the other hand Fran’s creativity depends a great deal on her health, energy and focus. The effect of illness on her motivation to create, her ability to do so, and the nature of her output (her writing in particular) can be profound. This is something we describe in our book. It makes it hard for Fran to work steadily at a project over a prolonged period of time.

I am more methodical and structured when it comes to writing. These are valuable traits when working on a long term project like a book, or committing to a blogging schedule as I recently have with bpHope.com, but they come at a price. I struggle to connect with the creative flow, not least because I tend to self-edit as I write. It is something I continue to work with. For example, I am currently experimenting with writing my blog posts out longhand in one of my Midori notebooks and typing it up later for editing.

Energy and Focus

Creativity aside, the tidal nature of Fran’s symptoms means she does not always have energy or focus to devote to projects. I provide the more or less stable structure to our work, keeping things moving forward so that Fran can contribute as and when she is able.

As far as possible we schedule our work around Fran’s health, allowing time in between for rest and recovery. At least, that’s the theory. We don’t always get it right. In the months leading up to our book’s publication we were working flat out with our publisher to get everything finished on time and to standard. I did most of the editing but each chapter, indeed every sentence, was proofread several times by us both. Fran was heavily involved at every stage including contract negotiations and book cover. She took a series of photographs which contributed greatly to the concept development, although they weren’t used in the final design.

We had an online cover reveal, and a book launch which was hosted online by us both and in person by Fran. This was followed by a book reading and charity fundraiser at a venue in Portland, Maine. Almost all the physical work for that fell to Fran and she hosted the event, with me attending virtually on a big screen at her side via the magic of the internet. In addition to all this we arranged interviews and podcasts, and there were marketing and promotion leads to be followed up.

It was the culmination of four years’ work. It was very rewarding but also exhausting and frustrating. It led ultimately to Fran getting severely fatigued and sick. She needed a prolonged period afterwards to recuperate.

Mental Health Community

Early on, our mental health contacts were all on Fran’s side of the Atlantic. Mostly these comprised her professional support team and people she had met over the years. As Fran’s friend and caregiver I got to know, and be known by, many of these people and organisations. Maine Health. It Takes A Community. NAMI Maine. Family Hope. Over time we started connecting with mental health groups and individuals online. Many of these were also in the US, including Stigma Fighters and No Stigmas.

At some point I recognised that I needed to up my game and connect with the mental health community here in the UK. My first approach was to Time to Change, the UK-wide charity campaigning to end the stigma and discrimination associated with mental illness. It was one of my wisest moves, and led to me connecting with many wonderful folk.

Much of our outreach is done online through social media but I have taken up the opportunity to attend events here in the north-east of England and further afield, including speaking at a mental health event last year in Ely.

For someone who used to have no social life and little in the way of social skills (the two facts are not necessarily unrelated!) it is a wonder and a delight to me that my life has changed so much.

It is interesting how our social skills complement each other. Fran is brilliant at meeting new people, which is a boon on vacations where she will strike up conversations with folk she has never met before. She finds it harder to maintain connections and friendships long-term. I have always felt more comfortable with established relationships, although I am learning to relish new connections and first time conversations. I have certainly “come out of my shell” to the extent that I now enjoy the people side of our work.

Visibility and Risk

Much of our motivation for working in the mental health area is to challenge stigma and discrimination, and to share the message that living with mental illness does not preclude or prevent deeply meaningful and mutually supportive relationships. The flip side of that coin is that stigma and discrimination really do exist and are rarely pretty. We risk negative reactions any and every time we raise our heads above the parapet. Every Facebook post, every open and honest conversation, may bring unwanted and unwarranted reaction.

The risk falls more on Fran’s head than mine. She is the person living with illness. She is the one with the diagnoses, the one whose symptoms, behaviours, and situation are being described or explored. With very few exceptions I have felt listened to and supported when talking about our friendship, about our book and work together, and about other crisis events in my own life. Fran on the other hand has personal experience of harsh and stigmatising treatment at the hands of others, and we go out of our way to protect against that happening again. It is part of the reason I am more of the “public face” of Team Gum.

Commitment and Motivation

A few years ago Fran and I spent some time coming up with vision and mission statements for our mental health work.

VISION: Our vision is a world where no one is too far away to be cared for or to care.

MISSION STATEMENT: To inspire connections between the ill and the well for a stronger more compassionate world.

Fran expresses her commitment with characteristic simplicity on her social media profile: “Passionate about making invisible illness visible.”

I recently changed my Twitter handle to include the words “#MentalHealth Author and Advocate.” This has brought me some negative feedback from people who see it as self-aggrandisement, or that I imagine I always know what to do or say to someone living with a mental health condition. Nothing could be further from the truth! I thought long and hard before claiming these labels. Doing so acknowledges how central our work has become to my sense of who I am and what I can contribute. No more, no less.

Just about everything I do or am involved in is part of our joint commitment to effect positive change. If I often take the lead it is because I have fewer challenges to face, not because I am more committed or passionate about what we are doing. I am encouraged and supported by Fran at every step.

We bring different things to the party and complement each other well. It is fascinating to me to witness how we have grown and learned from and with each other over the almost seven years we have been friends.