Saturday, 9 December 2017

Season’s Greetings, by Roiben

Christmas and New Year can be a difficult time for many people, for many reasons. The pressure on finances alone can be enough to increase stress and worry. This is without factoring in Mental Illness or a Chronic Condition.

Towns and Cafes become more crowded and frenetic and can make simply going outside feel harder than normal. Then, there are the expectations to socialize – to see friends and family and partake in the celebration of the Season. A Season with short, cold, wet days and long dark nights. A Season filled with the pressure and expectation to be happy and together and well.

So what happens, when you cannot afford it? When you are separated from your family by circumstances that won’t change? When you have a Mental Illness or Chronic Condition that means the sheer pressure and stress in the build-up to The Day mean you use up all your energy, all your strength, all your will-power and social acumen just to get through the month. By the time The Day arrives, it is not unusual to be disenchanted at best, and miserable and anti-social at worse.

So, what can be done? I have learned a few tricks over the years that have made the Season slightly more bearable. Firstly: Be open and honest. If you are too tired or stressed, or your emotions feel too battered, allow yourself time away. Ask if you can retire to a quiet room for a while. I have made it the norm that I will do this.

Only join in with family games around the table if you feel up to it. If not, maybe use this as your quiet time. If you do join in, don’t be afraid to bail out if it begins to feel too much.

Have at least one contact who you can be completely honest with. Whether over the phone, online or in person. There is so much pressure to be happy that it is a relief to have someone who accepts when you say “I am struggling”. I have felt suicidal on Christmas Day before now which is the opposite of what people expect. I will be the first to say it is very hard and wearing to put your feelings aside in the presence of others. Being able to state the truth to at least one person can be a life-line.

If you can, avoid alcohol. It interferes with most medication and is in itself a depressant. If you do choose to drink do so carefully, in the presence of others who can look after you should the alcohol affect your mood or well-being.

Be sure to take your medication. If you are travelling over the Christmas period, make it the first thing you pack and make sure you have enough to last you until the doctor’s surgery opens again. They can be closed for anything from a few days to an entire week, so get your prescription sorted in plenty of time and if need be, ask for more to last you through.

I have learned to take the Season slowly, and carefully. Pace yourself is the best advice I can give. Know your limits and don’t be afraid to stick to them. In reality, no one wants you ill or suffering because you have pushed yourself too far.

Whatever you do, and however you make it through the Season, I hope you make it through and without too much in the way of pain and suffering. I won’t wish you a Merry Christmas, as I appreciate the last thing we need is more pressure to be happy and well. Instead, I wish you a memorable Christmas. Focus on making memories, any way you can.

About the Author

You can find Roiben on Twitter (@roiben).


Wednesday, 6 December 2017

Untitled, by Brynn McCann

The flame of a thousand fires…
dances in her head...
a forethought, an afterthought.
Someonewhereinthemiddle thought.
burning through her brain like
so many candles in an ocean of brain waves.

He wants to dance with her
but is afraid of the bonfire she builds
nightly in her mind... he’s looking for
a balance that only exists between water
and fire. A place where darkness ends
and the sun sets peacefully on another
day of nine to fivers. A world where everyone sleeps
at night or exactly when they are supposed to...
and finds their dreams
in the dark with an easy breath.

But breathing for some isn’t always easy,
And sleeping for others doesn’t
mean sleeping.
It means... finding rest where you can find it
and building fires to keep you warm at night
when the winds of your mind pick up
and blow your house down over
and over and over again.

It means living in a world
that runs on daylight
and breathing through it and in it.

It means putting up with sun people
and hugging the moon when it’s full
And since the moon controls the tides and the
waves of her mind are an ocean deep enough
to drown the earth,
she chooses to surf in her waves
rather than fight them..
understanding that dreams will find her
when she lets go of what she wants.


Wednesday, 29 November 2017

Communicating Is a Two Way Street, by Roiben

I was first diagnosed with a Mental Illness when I was twelve years old. I am now thirty-five. So I have grown up with Mental Illness and all that it entails. I have had many experiences through the years with both my own Mental Illness and other people’s and there are a few things I have learnt along the way. Some of these I will share here.

One of the most important things I have learnt in my life is that communication – real, open, honest communication – is the key. By which I mean, without communication you cannot have a relationship of any kind with another person.

I took a long time to learn this lesson and I learnt it the hard way. I have spent most of my life not talking about what was going on inside my own mind. Not talking about my likes and dislikes, why I acted certain ways at certain times and, ultimately, what I needed to feel safe and loved. It has led to the destruction of more than one relationship, including my relationship with my parents. My Mum does not believe in my Mental Illness. She does not get it and is of the general impression that I “make it up from stuff I read online in order to get attention”.

This belief of hers meant I stopped going to my Mum with how I was feeling and why – since the majority of the time it was intertwined with my Mental Illness. Then, over time and by extension, I stopped talking to my Dad about it too, since they shared everything I said between them. Gradually I stopped talking to them about the majority of things. Our conversations became one-sided; questions with one or two word answers. In the end, our relationship broke down.

My parents could no longer handle the surprises and shocks of my Mental Illness at its worse, when one minute I would appear fine and then the next be threatening suicide and have the police or an ambulance at the door. As a result of this my parents effectively kicked me out of the house. I now live in a little Studio on my own, and to be honest this works much better for me. I am no longer putting on a front whenever I want to walk to the kitchen and get a drink.

Communication is the key to opening many doors. When I started to open up a little and admit that I was struggling and needed help, I realized that a lot of other people felt the same way and were also struggling. Being honest also led to friendships that were far better than those I had had to date.

I learned to be more discerning with my friendships. Those who were only there to get something from me or who were not supportive of me as an individual became nothing more than acquaintances. Those who shared, back and forth, pieces of themselves, gelled and became friends, boyfriends, lovers and more. I met people on forums and on twitter, as well as friends from the days of University that I have kept in touch with. Many of these have their own stories to tell and are all the better for telling them.

More specifically, I learnt something that I now believe to my very core – communication has to go two ways. Life is a two-way street. If you are only focused on yourself and not willing to meet in the middle, your “friends” will walk the other way until they find someone who will.

Another point to make here is: Mental Illness is not an excuse to not be a good friend. I have been actively Suicidal in the past — frankly, I have been literally swallowing pills — while talking to friends online to offer them support through their own struggles. I have been on forums as a “Supporter”, actively helping others through problems with Mental Illness, whilst going through my first known episodes of Psychosis.

Being Suicidal means it is hard to drag yourself out of bed. To exist becomes a daily chore and you are out of fight, and energy – what energy? However, it is not a constant. Being Suicidal ebbs and flows with time and emotions. Even if someone is feeling at rock bottom, there will be moments when they can peek their head above the water’s edge and communicate with friends, even if just to say “I am sorry you are feeling bad right now, I am feeling uber bad”. Or, at times when even those words fail: “hugs”.

Evenings are particularly hard for me and I struggle to get out of bed in the mornings. But through the middle part of the day, even at my worst I can pass for any other person on the street. It is often at these times that I reach out to my friends and communicate about how they are, how they are holding up and what is going on in their part of the world.

Even at the most evasive, self-isolating moments, I have had instances where parts of me have reached out for another someone to understand. This action, complicated and difficult as it is, has in no uncertain terms saved my life more than once.

So, what is my message? Communicate. Both ways. Ask someone you know how they are today. Compliment people — you never know when someone may really need a kind word. Ultimately, do not struggle through this world alone. It is harsh enough WITH other people.

Loneliness is one of the world’s biggest killers. Break down its strength. Reach out.

About the Author

You can find Roiben on Twitter (@roiben).


Wednesday, 22 November 2017

Welcome Home! Post-Vacation Support for the Bipolar Traveller

The traveller with bipolar disorder faces a number of challenges. Leaving behind proven routines and support structures, the journeying itself (especially if different time zones are involved), and the excitement of new places and opportunities are all intrinsically destabilising. Good planning including a Travel Wellness Plan goes a long way to mitigate the risks. Factoring in some post-vacation support is valuable too.

In our book High Tide, Low Tide Fran and I describe how we managed our mutually supportive friendship whilst Fran was touring Europe with her elderly parents, as well as what happened on her return home. On that occasion, Fran couldn’t rest and recuperate, as she had to immediately look for somewhere new to live, pack up, and move home. Fortunately, not every trip is quite so traumatic!

Fran has just returned from a ten day vacation with a friend to Edisto Beach in South Carolina: a round trip of 2,200 miles. She arrived home last night around 6 p.m. her time (11 p.m. for me here in the UK). We met on webcam shortly afterwards.

Fran had warned me in advance not to expect too much from her on this first call. The journey north had taken two days, and the 22 hour drive had been compounded by car troubles and a less than satisfactory motel stopover. (Note to self: pay more attention to online reviews when suggesting travel accommodation!)

I imagined we’d be on for no more than ten or fifteen minutes: long enough for me to welcome her back and to briefly catch up on anything immediately pressing. Anything else could and would have to wait. As it turned out, our call lasted an hour and a half. Fran was exhausted, but needed me to hold space for her to release what she was feeling and thinking, so she could unwind. I got to contribute but we agreed I would have my turn later. This first call was for her.

We had our usual check in at midday my time today, and will meet later on webcam. There is no specific agenda but as we move through these first post-vacation days we will be focused on a few key areas.

Vigilance. It’s more difficult to help Fran keep an eye on her health when she is away from home. We kept in regular touch on this trip using chat, and had a few voice and video calls, but far fewer and shorter than usual. Getting back to our usual structure is stabilising in itself and will help each of us assess how Fran’s doing in terms of her physical, mental, and emotional wellbeing.

Catch up. I have a fair idea what Fran did while she was away because she shared things with me day-to-day and on her social media. But, as I mentioned to her last night, “I’ve had ten days of life too!” I look forward to sharing my news with Fran and hearing more of what she took away from her vacation.

Processing. We approach any experience as an opportunity for growth and learning. This curiosity has stood us in good stead in the past. We will take time over the coming days and weeks to explore what we’ve experienced while Fran has been away, celebrate our successes, and look for lessons learned.

For example, Fran mastered a new GPS (satnav) app on her phone, and successfully navigated the route to and from Edisto, as well as on day trips through the week. She and her friend also handled spending most of their time together on the trip, including the best part of four days on the road.

For both of us, being in less frequent contact always offers opportunities to explore connection, independence, and codependency in our relationship, and this trip was no exception.

Picking up the reins. We keep track of our individual and joint tasks on shared calendars and To Do Lists. We parked a number of things while Fran was away, so we will review these and pick up where we need to. This includes appointments, preparing for upcoming events and trips, and the holiday season (Thanksgiving, Christmas, and New Year).

Hanging out. One of the things I am most looking forward to is hanging out again with Fran, especially reading together (we are currently reading Outlander by Diana Gabaldon) and working our way through all eleven series of the American sitcom Cheers on tv.

Fran loves to travel, when funds and circumstances allow. We are already planning for further trips next year. With care and forethought we know she can travel safely. And with some dedicated post-vacation support we know we can grow and move forward, both stronger for the experience.


Wednesday, 15 November 2017

One Small Chip: Living with Psychosis, by Roiben

Psychosis is one of the biggest Taboos still around in the Mental Health world, and by extension, in the world as a whole. You don’t often hear of people talking about Psychosis, whereas nowadays you may hear more about Depression, Bi-Polar, Borderline Personality Disorder, OCD and so on. You don’t often get told “I have (or I experience) Psychosis”.

So, what makes Psychosis such a big Taboo? Is it the unknown element that comes as a part of it? By definition Psychosis is hearing, seeing, feeling and believing things which others do not experience. It is much harder to empathize with someone suffering from Psychosis because it is harder to imagine being in that situation. One can extend one’s level of understanding for example with Depression – because everyone can understand feeling unbearably sad, having no motivation, or even the emptiness of emotion that can come as part and parcel of the disease. Yes, these things are not all and everything of experiencing Depression, but one can understand that it feels more than this. One can empathize.

Psychosis is a level of unknown that is so different for each individual experiencing it, that it is much harder to generalize and fit into a box of “it must be like when I experienced X that day, but to a bigger degree”.

Mental Illness as a whole gets blamed for a lot of things – if there is a murder, or a terrorist attack, or someone steals something from the local shop, the first thing asked in the modern-day media is: Have they got a Mental Illness? Hell, even Donald Trump is candidate for having a Mental Illness, and has been couch-diagnosed by so many people, purely because he is not your standard Politician (okay, he is a terrible Politician, but we won’t go into that here).

Psychosis is a major trigger point for being considered “at risk to other people”, even in the Mental Health field. Go to any A&E and describe an experience they count as Psychosis and the first question you will be asked is: “Have you ever hurt anybody else?” and “Have you ever been in trouble with the Police?” In the “real-world” of out there, hearing someone has Psychosis definitely means they are a danger to others and more likely to cause harm. The word Psychotic seems to be treated as a synonym for “dangerous and crazy”.

Schizophrenia, Schizoaffective disorder, Prenatal-Psychosis, Psychotic-Depression and Psychosis experienced as a part of Bi-Polar 1 are rarely talked about or admitted to openly in today’s world. Purely due to the stigma that somehow this makes you a bad person who is bound to cause harm.

In reality, people who have Psychosis are first and foremost at risk to themselves. They are much more likely to cause harm to themselves than to anyone else. Schizophrenia, for example, leads to extreme social isolation and people with this diagnosis die much younger than the average for any given country.

Psychosis, in all its forms, is hard to live with. Stigma and the sheer difficulty in explaining an experience without being ridiculed or just not believed makes someone a Social Outcast, keeping to the dark places and lonely shadows, behind the mask that says “I am normal”.

There is nothing better for someone with Psychosis than hearing “I understand you are having these experiences, and that for you they are very scary” – no disbelief, no brushing aside, no “have you hurt anyone?” (Unless the person has themselves expressed desire to harm others, the chances of them doing so are, in reality, pretty slim.)

It is so rare to hear someone accept that you have experiences that others do not, without chasing after “reality” or viewing the person admitting to these experiences as a threat to every human being they may come across. Accepting it, asking if there is any way you can help, and treating the person in the same manner you would anyone else in today’s world, is pretty much the best thing you can do.

So, what gives me right to say all this, you may be wondering? I have been told more than once that I have “Psychosis”. My main diagnosis is Depression and Anxiety, however, in with that is Psychosis. I have previously been told I have Psychotic Depression (not my current diagnosis, but it has been spun around by previous Psychiatrists).

To me, the world is a pretty scary place. I see, hear, feel and believe in things I have been told others do not believe in. To me, they are very real. I have opened up about them to seek help, mostly because my experiences have led me to Crisis point on a number of occasions. I have been suicidal, actively so – and so am considered definitely at risk to myself. So much so, that I am on bi-weekly dosette boxes for my medication as I can’t be trusted with more than two weeks’ medicine at once due to my risk of Overdose.

I am open to the idea that maybe what I experience is not real – purely because I will try anything to get better at the moment. So, if the Psychiatrists are saying I am Psychotic and medicine will help, I will give the medicine a go. The other alternative is literally to kill myself. So, I am giving the medicine a try. I am communicating with people about how I am feeling at any given moment, and keeping the floodgates open for support and understanding, because I need it to survive.

I have been told that this experience may be something I just have to “learn to live with”. That at best, medicine may make it easier to cope, but not remove the experiences altogether. Frankly, I am fine with that. It beats the current Not Coping At All.

I know that many people who experience Psychosis do learn to deal with it. They get on with their lives, they (by and large) live for many years. They could be the person sitting next to you as you read this. And I say that not to scare-monger, but rather to express the prevalence of Psychosis and the likelihood that as with many Mental Illnesses, you may well know someone, or more than one person, with a diagnosis (or perhaps they don’t, and need help).

So, what is the point I am trying to make here? Mostly, that despite being a major Taboo that is unspoken in many corners, Psychosis is not uncommon. Often, it forms part and parcel of another diagnosis. Sometimes, it is the first sign that anything is wrong. It is also not an automatic Doctrine that means any given person is “Dangerous”. As I stated above, quite the opposite is true.

I think people’s experiences should be shared more openly. The Taboo nature should be broken down bit by bit and the world be more open to people whose experiences maybe do not “fit the norm”, without automatically shutting them down and telling them they are lying, or there is no such thing, or their experiences are “all in their head” or even worse that “they are only saying this for attention”.

It is only through opening up and saying “This is happening” that anyone can get help to cope with what to them in very much real. As real as the page you are reading right now. And no one should suffer alone.

This is my little bit towards that. One small chip of the iceberg.

About the Author

You can find Roiben on Twitter (@roiben).

Photo by Luca Micheli on Unsplash.


Tuesday, 14 November 2017

From Here to Edisto: My Life as a GPS Angel

As I mentioned in my speech at a recent mental health event, I have occasionally been called upon to act as a personal SatNav (GPS) service for Fran when she’s traveling.

When Fran’s away from home it’s often easier for me to look stuff up online than it is for her on her cell phone. I’ve booked hotels on her behalf and checked out restaurants and places to visit. I’ve even acted as an emergency SatNav, using a combination of Facebook chat, Google maps and an app called Glympse which lets you share your location with someone. It’s never boring with Frannie!

I had opportunity to reprise this role last weekend, as Fran travelled with a friend from Portland, Maine, to Charleston in South Carolina—a journey of 1,100 miles (around 19 hours on the road). We’d planned the trip well in advance. Jim would rent the car and do the driving. Fran would navigate, a challenge she was keen to take on even if she doubted her abilities. I would be on hand if needed.

We explored a number of navigation options. Google Maps would work, but is a bit basic. Waze was recommended by friends but we didn’t find it particularly intuitive. Researching alternatives, I found HERE WeGo. It seemed straightforward to set up and we liked the fact Fran could download the maps she’d need ahead of time to save data on the road. Fran also had a printed AAA TripTik Travel Planner. Glympse would let me track Fran’s location in the event they got lost or needed me to assist.

Hours before they departed, Fran realised we’d not considered the cost of road tolls. A quick online search turned up Tollsmart, an app which gave details of each individual toll along their route including which accepted cash and which didn’t. Fran had an old E-ZPass unit, but the battery was dead. (E‑ZPass is an electronic toll collection system used on most tolled roads, bridges, and tunnels in the Midwestern and Northeastern United States.) We discussed alternatives methods of payment and I checked the options offered by their car rental company. This page has information on not paying too much on tolls when using a rental car.

Fran and Jim got on the road around 11:30 a.m. and were soon making good progress. Their original plan was to break their journey overnight in Fredericksburg, Virginia, and Fran and I had researched a few suitable hotels in advance. An hour or so into the journey they realised Fredericksburg was a little optimistic and decided to look for somewhere a little closer.

We’re thinking of stopping at Wilmington Delaware, can you find anywhere to stay?

I checked and soon found one likely place—the White Oaks Motel at Pennsville—as well as a couple of others in the area.

Fran: Jim asks if we could get a place about an hour south of there. Tomorrow will be a long day and we need to check in around 4pm.

Martin: I found one in the Baltimore area about 3 hours from where you are now. It has various rooms available but doesn’t look as nice as the White Oaks one.

Fran: White Oaks it is then. Now to book.

Martin: Yayay

Fran: Booked. Now to put the address in the app. Jim says Big thanks to Marty. I think we all made a good call. Can you help us get to the motel?

Martin: You’ve put it in the app?

Fran: Yes but when I use the GPS I get confused. And the voice isn’t loud enough. Is it far from our path?

Martin: No it’s not far from your path. Program the app from wherever you are now, to the hotel. You are on I-95 now?

Fran: Garden State Parkway

I found that on the map but it seemed some way off the expected route.

Martin: Can you put Glympse on for a few minutes so I can see where you are?

Fran: Done. Are we on track? Below Asbury Park.

Martin: I haven’t received an email re the Glympse. Never mind. Looks like you are a little bit over to the east. Get onto 195 West.

Fran: I think we missed the exit.

Fran called me on Skype and we had a short call to confirm what road they were on and what they planned to do next. Once they were back on track I sent Fran screenshots and other details to get them to the motel.

Fran: You’re an angel. Do you have the motel number so we can tell them we’ll be late.

Martin: One moment... Here you go... When you get chance, it would help me to know where you are.

Fran: Just got on NJ Turnpike south for 195

Martin: Almost exactly one hour to go. You’re doing good!

It was about half past midnight here in the UK. Confident they’d be fine, I said goodnight and went to bed. Fran messaged me an hour or so later to let me know they’d arrived safely.

I am glad to be on this journey.. so far! We’ve navigated things well. Whew! Only 11 hour and 18 minutes from here to Edisto Beach (with no delays, stops, mistakes.. lord help me). We are supposed to be there around 4p. Sigh. We will get up at 5.30.

Five thirty a.m. for them is ten thirty a.m. here in the UK. I messaged Fran next morning to make sure they’d not overslept.

Beep! Beep! Early morning call for weary travellers.

She replied almost immediately with characteristic (and half-joking) candour.

Fran: Fuck you! It’s too early!

Martin: Good morning Fran! Good morning Jim!

Fran: Good morning! Jim says hello!

They were soon on the road. Fran sent me a short Glympse so I could see where they were. This time it worked perfectly. She was a little concerned about her phone data and asked me to check it for her: something I do when she is away from home. It was fine. We chatted on and off along the way.

Fran: It’s mostly I-95 until we get close to Edisto.

Martin: Yes. It should be easier going/navigating today. You both did really well yesterday.

Fran: I’m learning the satnav!!!

When they got to Selma I sent them a screenshot showing how far they had travelled since leaving Portland the morning before. They had about five hours left to go.

Martin: The U.S. is so BIG!!!!

Fran: YES! Wonder how many hours across the country?

Martin: I’d sooner take the train on something real long.

Fran: Me too.

Martin: So that’s something we can do some time!

They were making good progress, but you can never be complacent.

Truck ahead of us just went off road but recovered. That was unreal. But we’re safe. Damn. Send angels.

Fran put Glympse on again for the final hour or so of their journey. I watched as they missed a turn, turned back and corrected themselves.

Fran: We’re here! Our place is unbelievable. I’ll do a video of it tomorrow to show you.

Martin: You’ve both done brilliantly! I’ll let you settle in, and catch up with you tomorrow. Goodnight!

Next morning I saw Fran had posted this to her Facebook page:

After getting lost in Jersey, staying over in a Bates-like hotel, running over the treads of a truck tire, and watching a fuel truck run off the road and back on again (way scary) 22 hours on the road! We practically kissed the ground in Edisto Beach, South Carolina.

A friend had commented “Yikes! I’m glad you made it safe.”

Fran: There were angels ♥