Wednesday, 25 April 2018

OPENM;NDED Mental Health Event

This is bigger than us, than you, than this organisation or that service. Let’s park our petty differences, our proprietary selfishness, and be OPENM;NDED. — Alisdair Cameron, Recovery College Collective

On Wednesday April 18 I had the pleasure of attending the OPENM;NDED mental health event at The Hancock pub in Newcastle.

An evening of meaningful and local music, poetry and performance centred around shared experiences and common stories of mental ill-health.

By creatively exploring the topic through music and poetry, we can begin to open up the conversation on mental health, de-stigmatise the topic and encourage recovery and resilience for those experiencing trauma and distress in our community.

The event was organised by OPENM;NDED in support of ReCoCo (Recovery College Collective). OPENM;NDED is a group of cross-disciplinary cultural managers, practitioners and researchers brought together through study at Northumbria University. ReCoCo is a joint venture between various organisations in the north east, “by and for service users and carers. ... a place where service users are able to make connections and develop their knowledge and skills in relation to recovery.” ReCoCo runs a wide range of courses and services. You can download their current prospectus.

So what’s the semicolon all about? OPENM;NDED’s Facebook page includes the statement: “By being open minded, we can make it a semi-colon and not a full stop.” The reference is to Project Semicolon, an American mental health nonprofit organization founded in 2013 by Amy Bleuel and dedicated to the prevention of suicide.

“A semicolon is used when an author could’ve chosen to end their sentence, but chose not to. The author is you and the sentence is your life.”

The semicolon has become a potent emblem for suicide awareness. Everyone who attended the event had their hand stamped with a semicolon. I wore mine with pride for several days until it eventually faded. (Yes, I did wash!)

I hadn’t visited the Hancock in many years. I remembered the place as quiet but that was a lunchtime maybe twenty years ago. Suffice to say, it was busier at 6 p.m! The outdoor seating area and bar were packed but the venue upstairs was much quieter and cooler. I arrived early which gave me plenty of opportunity to choose a good seat and learn more about the event.

I chatted with Laura and a couple of the other organisers while the performers were doing their sound checks. Everyone I spoke to was passionate about the work they are doing and their collaboration with ReCoCo.

I met up with several people I knew including Alisdair Cameron, Steve O'Driscoll, and my dear friend Carol Robinson who I first met several years ago via the Mentally Sound radio show. I had brought a couple of copies of High Tide, Low Tide and was happy to sign one for Carol. This led to a great conversation with one of the attendees (Hi, Martyn!) about how Fran and I met, about mental health awareness in general, and about our respective experiences of ASIST (Applied Suicide Intervention Skills Training).

The evening opened with a great piece of rap poetry by Dylan Holkar. Singer Lisa Bonetti introduced her set with a moving description of how important relationships and music have been for her.

Lee Symons was up next. I especially loved his cover of The Killers’ “Mr. Brightside.” After the interval Alisdair and Angela took the mic and spoke passionately about the work of ReCoCo.

The final act I saw was BEING. Their website describes them as “two best friends from the UK who create ambient and atmospheric songs and sounds.” Having heard them I can only agree. A very powerful and moving set.

After the event I contacted BEING to say how much I had enjoyed their set. They were happy to answer a few questions about their involvement in the evening.

What motivated you to be involved?
Mental health is such a relevant dialogue at the moment, and so it should be. We both have family and friends who are affected in different ways, and it plays a massive part in everyone’s day to day life, so we jumped at the chance to be part of something that is shining the spotlight even more on how we look after ourselves.

What did you get from the event?
We got further assurance that there’s loads and loads of people out there who are hungry to talk about mental health, and it’s a conversation that needs to be had over and over. It’s fantastic that Newcastle has so many people who are compassionate and committed to putting together these kind of events.

What does OPENM;NDED mean to you?
It means so much, from the openness of conversation and sharing, to the practicality of how we deal with our issues on an individual basis and as a society of people.

i had to leave at that point and missed the performances by Joshua Eckert and Annie Griffiths, but you can catch all the sets on the OPEN;MINDED Facebook page.

But enough about me! What did everyone else think of it? I asked some of those who attended for their thoughts on the evening.

Last night was the first event that we’ve organised under the OPENM;NDED umbrella, and I think the general consensus amongst the team is that it was a success! We raised nearly £300 for a local charity and brought together people from various different backgrounds and parts of the community. Everyone in the room shared an experience that, we hope, moved people to reflect and introspect on the social issue of mental health awareness and stigmatisation, and could form part of a complex system of a motivations that leads individuals to seek help, talk about their problems, share their burden, and feel they’re not alone. And, beyond that, we hope people had a good time, and we hope to do more!
— Jack, for OPENM;NDED
It was wonderfully heartening to see the passion, commitment and talent of students and younger people, all put to the cause of encouraging discussion and talking about mental health. We are grateful and humbled that they picked ReCoCo as their charity of choice and had a wonderful evening, and we hope to develop things further with such a lovely group of talented people.
— Alisdair, for ReCoCo
In regards to the evening it was just lovely to showcase talented artists for a meaningful cause. Releasing the stigma around mental health, and allowing people to express themselves musically and artistically, OPENM;NDED was an event with a heart and a cause that is close to everyone involved. Hopefully this is something we can carry on working on well into the future.
— Laura
It was very inspiring and thoughtful that the students felt supporting the work done at RE-COCO was worthy of their time and efforts. As a service user and volunteer at the Recovery College via Launchpad I know it is a lively communal space that is bound by the ethics of community, well-being and trust. The volunteers give 100% of their time and resources to help others. We have our ups and downs, but more ups than downs. It’s a happy and welcoming space. I can only say a big thank you to all who laid on the event last night. Thank you to Alisdair and Angela who spoke, and work so tirelessly behind the scenes. A big thank you to you, Marty, you support so many events relating to mental health. And thanks to Steven for inviting me to this really cool event.
— Carol
The event with wonderful live music was just what was needed after a day at work and all the Northumbria university involved in organising the event obviously had a passion for making a difference for local people suffering with poor mental health. The proceeds were donated to enrich the lives for people who use ReCoCo to improve their mental health and form new friendships. I also think the event proves to me that Students who use our Universities do have empathy towards local people. The students I have to say did a sterling job of raising the profile of issues around mental health.
— Steve
The cause is something that is very dear to my heart and I was happy enough to just be there, but to also be able to be involved and play music was an honour. I had an amazing time at openm;nded, the audience was awesome as were the rest of the acts.
— Lee
I thought the event really connected musicians with mental health. It was quite an emotional introduction to being openminded and speaking about our problems (all of us). I was really pleased to see Recoco there and learning about what they do.
— Martyn

As Jack mentioned, this was the first such event that OPENM;NDED have put on. I sincerely hope it won’t be the last!

If you would like to know more about OPENM;NDED you can follow them on Facebook, Twitter, and Instagram. Find ReCoCo (Recovery College Collective) on their website and on Twitter.

 

Saturday, 21 April 2018

Schrödinger’s Fishing Tackle Box

Walking into work this morning I found myself thinking about my mother’s house which was cleared and sold last year. A few weeks ago I came across the property listing online, together with photographs of the house cleared for sale. Every room empty including what used to be my bedroom. The first space in the world I could call my own. Walls stripped of wallpaper and painted an aseptic white. Floors clear and sanded. No trace of the home I knew. The décor and furnishings now live only in my memory and a few photos of mine from past visits.

I’d suspected for some time that it wouldn’t be long until the house was sold, if it were not already, to cover the cost of my mother’s final years in nursing care. I could have asked someone about it but was content to explore the uncertainty. Looking back on it this morning I smiled to myself, recognising it as a Schrödinger experience.

Unless or until I asked the house, my home from birth until the age of eighteen when I left for university, was simultaneously sold—and not. Curiosity may have killed the cat but Erwin Schrödinger’s feline remains alive and not-alive until someone looks inside the box and the entangled, quantum superposition states of live cat / dead cat collapse.

At my mother’s funeral I was told—without my having asked and without anyone asking if I wanted to know—that the house had, indeed, been sold. But it was finding the photos online that collapsed the states for me. I looked inside the box. And found that the cat, or rather the home I had known for so long, was not dead. It simply was—not. It no longer existed. Like my mother. Like my father, years before. Not.

And my mind turned to the things the house once contained. The furniture, books, LP records, clothes. Had any of these now not-things been mine? It seemed plausible, although if there were still items of mine in that house decades after my leaving home, how important to me could they have been? I mentally ticked off a list of things I knew I had rescued and brought up north over the years.

  • A wooden tractor and trailer my father made for me one Christmas.
  • A wooden fort with drawbridge and moat, also my father’s work.
  • My collection of Action Man figures, uniforms, and equipment, including clothes my mother sewed and knitted by hand.

Another list, of things I was pretty sure I had never rescued and which were likely now not. Childhood board games. The six foot wingspan balsa wood glider I spend one summer building, filling my bedroom with balsa shavings, dust, and the rich aroma of cellulose dope. My scarcely used fishing rods.

And then I saw it in my mind’s eye, in all its classic red painted glory. The wooden fishing tackle box my father made for me: another Christmas present, or possibly a birthday. I would have been in my teens, maybe thirteen or fourteen.

I was never very into the fishing itself. I can’t remember ever catching anything despite visits to the canal with my cousin and to various park lakes with friends. But for a time I loved the craft and lore of it. I pored over angling magazines, crafted floats and lures from balsa wood, feathers, bits cut from tin cans—whatever I could lay my hands on.

I can see my tackle box now, clear as anything. The handle on the lid. The brass fastenings. I slide them open and lift the lid. Inside are all the floats, hooks, lines, lures and other paraphernalia. The scent of aniseed ground bait. And I wonder where that box is now. I’m not sure to which list it belongs. I may have brought it north at some point, in which case it is probably up in the loft. Or not.

It exists / notexists. Like so much else. And I find I am okay with that. With the unknowningness.

Old Schrödinger was really on to something.

Martin

 

Wednesday, 18 April 2018

The Real Meaning of Friendship

By Charlotte Underwood

I guess I just try to be that friend that I really needed when I was younger and alone.

In a previous article I mentioned that “I guess I just try to be that friend that I really needed when I was younger and alone.” It was something that came to light as I was writing, a sudden hit of realization as to why I am so empathic. Though it is quite a sad truth, it binds well with my ability to turn even the worst negatives into positives. Today I want to expand on this thought.

As I grew up I found it increasingly difficult to make and maintain relationships of any sorts. I did have friends, although they were people I had grown up with and had become accustomed to my behaviours – I wouldn’t say they were close friends but we had known each other for life and that counts for something.

At the age of seven I moved to a town about three hours away from my hometown and I knew that I would have to start a new life. I would never see my friends again and would have to find new ones or just find comfort in being alone. Despite my introverted nature, I enjoy company and talking. To be honest I could talk for hours without stopping. I do enjoy having time to myself but if I am alone for too long it has detrimental effects on my mental health.

I never understood social cues or etiquette which certainly came to light when I attempted to find a new friend. It seemed that I repelled potential friends as I would be avoided or left after that first introductory conversation. I never knew why this happens, but even now it seems that something I do pushes people away. I am a kind person and only mean well, I give my all to the people I care about and I am a loyal friend. So why is it so hard to make others see that?

The problem with my childhood friendships was that I always found myself being the third wheel or tag-along. I found myself ignored and pushed out of relationships or used as a second option of company. I never felt valued or wanted. What hurt the most, and still does, is that when I would find people who later became my best friends, they would always leave. In fact, pretty much every friendship I have had has ended due to me being cut out.

I do not know what it is like to have a lifelong friend that stands by your side. I do not know what it is like to be able to reflect as an adult with your friend as to how you met all those years ago. I envy the people who have real friends, by which I mean a person who is always there for you, who starts conversations and makes plans to meet you. I don’t have that.

All I ever wanted was a companion to share this life with, not in a romantic sense but the kind of friend who you would still have when you grew old, who would be your maid of honour and be an auntie to your children. The kind of friend you could still be close with at old age and know that you have a unique bond.

I remember how planning my wedding hurt me. I did not want a reception but I was forced into it by other family members. I found myself with a tiny guest list and found it impossible to plan my half of the wedding party. It hurt not to be able to have close friends to spend the day with. When I think about the future, it hurts to know that I do not have friends who will be by my side when I have my first child or when I find my own success in my writing.

My husband is everything I could ever want in a friend, he respects me and supports my dreams. He does not judge me or my past and only ever lifts me up. He makes me laugh and we go on adventures together. He is my best friend, but although this is the absolute dream in a relationship I find myself still lonely as I must rely on my husband for all social desires.

I want to be able to unload onto someone else or to have other experiences. My husband is perfect but it is just not the same as having an unromantic best friend, someone I can have coffee dates with and go on holidays with. It does my mental health a lot of damage to feel this alone. It may sound horrible but having only one friend, a husband is not enough for me.

We all need someone who will always be in your corner, who has no intentions other than to be by your side and always lift you up. In a way we desire that second love, that soul mate who is not meant to be your husband or wife but rather be your right-hand man or woman.

I do, as an adult make it hard for myself to maintain friendships. I have severe trust issues and high standards of the people who I call friends. The truth is that I have been so hurt and taken for granted by people who I thought respected me that I believe that everyone will leave me and use me.

Friendship is a two-way street and I feel that some people forget that. You need to put the same effort into any relationship that the other party does. Even if you have no ill intentions, if you are never the one to call, to send that text or to plan a meeting, if you put none of the work in and expect the other party to do that for you – it causes a lot of damage and it’s toxic to mental health.

When you really care about someone you will find time for them. Even if you only send a message to check they are ok or give them a five-minute call that shows you value them. The little things count for a lot. You don’t need to sacrifice anything for the people you love but you do need to remember that your friends will not be around forever.

This is something heavily important to think about in this modern age where everyone prioritises work. When did money become more important than real human connections with those you love?

So, these are the things to remember:

  • Be honest with your friends. Do not lie to them because lies will always hurt more than the truth.
  • Take a moment out of your busy week and just check on your friend’s wellbeing. Show them you care and that you value their being.
  • Be equals in any relationship and don’t take a person for granted. Give them back what they give you.
  • Learn to communicate. If your friend upsets you consider if it is worth losing them over something that can be talked through and worked on.

No one deserves to feel alone in this world and no one deserves to feel like they are undesirable. If we all share a little love then the world will be a better place.

About the Author

Charlotte Underwood is a 22 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.

 

Tuesday, 10 April 2018

#LetsTalkFND An Explanation of Functional Neurological Disorder for FND Awareness Day

By Alison Hayes

International Functional Neurological Disorder Awareness Day this year is Friday April 13, 2018. You can find more information about this condition on the FND Hope website.

My first symptom was a shiver. I shook, as if cold, in the warmth of my boyfriend’s arms. When he noticed, and held me closer to try to comfort me, I shivered more, shook worse. My whole body shook.

After we broke up, after the repeated suggestions that we get back together, and after his appearing where I didn’t expect him, and him not being in the places I expected him to be, things got worse. One night, in a friend’s room, trying not to think about him, my whole body moved with a sudden flash of motion. Every limb stretched out in the same moment, an abrupt stiffening. Then as suddenly as it happened, it stopped, and my body relaxed a little. What was that? My friend and I looked at one another. I was even more confused than she was. But she was more frightened.

After it happened a few more times and I found myself rocking back and forth for minutes at a time, I went to the ER and was referred to a neurologist. After some discussion, she told me it was all anxiety, gave me some anti-anxiety meds, and told me I’d be fine. I was, for months. I had another round of shivers and shakes five or six months later during midterms.

After I graduated, I traveled a bit. I had an amazing time in Australia, and lived there for eight months or so. I had no shivers or tremors and assumed that whatever it was had passed. When I stayed with friends in the UK for a month on my way home, I started doing a little bit of knuckling down, and looked into a couple of options for graduate school and found an interesting job or two to apply for. Immediately following one of my grad school interviews, I started having those full-bodied shaking episodes again. I was annoyed that they came back, but I wasn’t frightened. I reassured my friends that I would see a doctor after I got home.

Grad school didn’t pan out, but I found a job as a fishery observer on the Gulf of Mexico. I went down for training and started the job. It was pretty awesome! I was living on a shrimp boat for weeks at a time, out to sea with the fish, shrimp, seagulls, and oil rigs. I loved it.

In early December, a friend and I committed to an apartment rental, and I planned to enjoy my time there in between trips to Galveston, Texas and Bon Secour, Alabama. When I got back from my trip in December, I was informed that the program had lost funding, and there would be no more trips. Probably. They were trying to find a way to get a bit more funding, maybe they could work something out. I was to hang in there and they’d call me when they knew something.

Five months later, I started shaking uncontrollably, like an exaggerated shiver. I couldn’t stop shaking. It started on a Friday night. On Monday, when it hadn’t let up, I called a neurologist I had seen previously. The next day I was in the hospital. Three weeks later, I was seeing a movement disorder specialist in NYC, and he diagnosed me with conversion disorder. Since then, the name of the condition has been changed to Functional Neurological Disorder, or FND.

What Is FND?

FND is a neurological condition where emotional stress ends up being expressed physically by the body. We all have this to some extent (examples include sweaty palms or ‘butterflies in the stomach’), but with FND it’s extremely exaggerated with symptoms including urinary incontinence, limb paralysis, pain with no discernible cause, non-epileptic seizures, aphasia (inability to speak), irregular temperature response (putting on a sweater in a warm room, or being sweaty in a tee shirt on a cold winter’s day), and/or cognitive fog. The symptoms are not consistent (most people have slightly different sets of symptoms), and can shift unexpectedly in each person, often but not always in response to changes in stress. More details can be found on www.fndhope.org. FND Hope is a nonprofit designed to empower people with the FND diagnosis, and be a resource for patients, caregivers, and medical professionals to help improve knowledge of FND and find appropriate treatments.

FND was known as conversion disorder when I was first diagnosed, which is generally labeled as a mental health condition, and usually occurs in conjunction with other mental illnesses. When you go back in the history of this condition, you find yourself hearing reference to Freud and hysteria. The term conversion disorder was used by Freud to describe how the condition ‘converts’ emotion into physical symptoms. Further back, a neurologist also referred to a condition he had discovered as ‘conversion disorder’ because the symptoms would ‘convert’ from one physical symptom to another after each symptom was treated.

The reality is that FND is right on the boundary between a mental health condition and a neurological one. The precise definition, cause, and treatment are still debated among professionals.

Evidence suggests that FND is associated with damage to the part of the brain that recognizes conscious decision-making, and that the symptoms occur due to some form of ‘misfire’ that changes emotional responses to physical reactions. For some people with conversion disorder they are strangely disconnected from their emotions, and only have the physical response to indicate emotional upset.

Some people use the terms FND and conversion disorder interchangeably, while some argue that FND is the umbrella term, and conversion disorder is a specific type of FND. In my case the psychological definition (conversion disorder) is a very good fit to my neurological symptoms. Many of my doctors still refer to my condition as conversion disorder, and my symptoms as conversion symptoms.

Symptoms

In my case, as I mentioned above, my visible symptoms are primarily movements—this type of movement is called myoclonus, or myoclonic jerks. Many people have experienced myoclonic jerks in their lives. Do you know that moment in time when you’re lying in bed, and nearly asleep, when suddenly you feel like you’re falling? The movement to catch yourself, in that moment, is a myoclonic jerk. It’s abrupt, violent, and startling. That type of movement defined my life for years.

While dealing with these unexpected movements, I also was dealing with severe urinary urgency and loss of bladder control. If I sat down to watch a movie with a friend, I would need to pause for a bathroom break at least twice in the span of the movie. Despite all these rushes to the bathroom, I would find that I had wet myself every few times I went. I have since learned that urinary issues are one of the most common side effects of FND.

Another really strange thing with FND is that in some cases (including mine), the patient is the person least concerned over the symptoms. The symptoms are an annoyance, or a bother, but not appropriately concerning. Many patients, including me, go to the doctor at the insistence of loved ones, because they (the loved ones) are freaked out and worried about it. This emotional detachment is sometimes referred to as ‘la belle indifference’ and appears to be due to the subconscious knowledge that these symptoms are the body expressing emotions, not a sign of a life-threatening condition. This happens in roughly one third of cases.

FND symptoms often only occur on occasion, with periods of seeming fine in between. There are also cases where the symptoms occur constantly in one particular part of the body, such as paralysis of a limb. In many cases, it’s a combination of effects. For example, I would occasionally have movement symptoms (most often when under stress) but consistently had bladder control issues.

Causes of FND

The precise reason why people get FND is not known. It is not a genetic condition like cystic fibrosis in the sense of having particular genes cause the problem, but there likely is a genetic component. There is a tendency within families to be more or less likely to develop FND, similar to depression and substance abuse issues.

What is known is that a large percentage of FND cases appear to have trauma in some form as part of the cause. In some cases, it’s an emotional trauma (toxic relationship, unexpected death of a loved one, etc), but in others it’s a physical trauma (sudden and severe illness, serious injury in an accident, etc). There is a smaller percentage of people who have symptoms come on without any discernable cause.

It does appear that a large percentage of people with an FND diagnosis had trauma, and in many cases were later triggered by a reminder of the trauma, and then developed conversion symptoms. Doing the research is very challenging, because most doctors who do work with FND have a small pool of FND patients to observe (basically just their patients) and there is always a fair number of people whose doctors have given their condition the label of FND when they might actually have a different condition.

FND Hope is looking for people with the FND diagnosis to share their details on their patient registry. The registry is designed to protect patient privacy and will only be accessible to researchers who are studying FND. If you have FND, or know someone who does, please tell them about the registry and ask them to participate!

Diagnosis

When I was diagnosed in 2003, the diagnosis of conversion disorder required two different doctors to identify the condition. The first, in my case, was a neurologist, who observed my symptoms and had tested enough to know that there was not a recognizable neurological cause for the condition. The second is a psychiatrist, who observes the patient to see if there is a relationship between symptoms and psychological stressors.

This puts a lot of people in an awkward position. To get the diagnosis, they needed experts in two different disciplines, and the two experts needed to communicate with one another simply to confirm the diagnosis. A lot of people went undiagnosed.

Just to make things more complicated the write-up of conversion disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM) focused on differentiating conversion disorder from malingering (pretending to be ill for secondary gain). So during the process of being diagnosed, many patients with FND had their honesty questioned, and many psychologists and psychiatrists today still ask their patients about secondary gains from their condition. A secondary gain is something that makes it psychologically worth the inconvenience of the symptoms. For example, a person addicted to pain meds could claim pain to have the secondary gain of getting their pain meds, or a person desperately in need of affection might fake being sick to get support from others.

Nowadays the only doctor required for an FND diagnosis is a neurologist. This puts the condition firmly in neurological territory and protects those diagnosed to some degree from the social stigma that all people with mental health conditions face.

Treatment

There is no guaranteed treatment for FND. About one third of cases of FND resolve themselves within a year of diagnosis: the person spontaneously recovers and doesn’t report FND symptoms again. For the rest of us, a regimen of antidepressants and talk therapy is strongly recommended.

There is now also a treatment program at several hospitals in the US and the UK. This involves intensive programs for physical therapy, occupational therapy, and sometimes additional supports such as on-staff psychological supports, speech therapy, or other therapies as appropriate for symptoms.

These programs last between one and three weeks, and while there are some inpatient programs (generally built around a single work week), most are outpatient, and can last longer periods of time. The antidepressants and this specialized treatment program are the only things consistently proven to work.

When I was diagnosed, these programs were much rarer (if they existed at all) and so I did not learn of them or participate. I did learn about, and participate in, the MORE (motor reprogramming) program in Louisville, Kentucky in 2016, and it did greatly improve my symptoms. Initially, I took antidepressants, got psychological counseling, and saw various specialists to help me gain control over my symptoms. My symptoms have never completely gone away, and there is no reason to believe they will, but I have improved dramatically from each time my symptoms grew severe.

Recovery Process

Many patients, including me, have a large sense of relief when they finally receive a diagnosis. I remember my symptoms immediately went down a bit after I was told that I had conversion disorder, even though there wasn’t a promising treatment offered. Just being able to name it was a huge relief.

Seeing a psychologist was the next treatment recommended to me. Since trauma tends to be a trigger for many people, it makes sense to see a professional that can help identify and cope with the trauma. For me, each time we dug through my life story and identified another big stressor and developed coping strategies for it, I felt better and experienced a decrease or shift in symptoms within a few days of that new discovery.

As I improved, I sought out specialists in other fields who could help my recovery process. I went through bladder retraining, physical therapy, biofeedback, and other programs that gave me some degree of relief or increased control.

The strangest thing with FND is that the symptoms are not consistent. Many patients, myself included, find that over time we develop new and different symptoms! I have found that a lot of them align with increases in life stress, but in some cases I have not been able to identify a trigger for this change.

When I first had symptoms, they were either my entire body, or centered around the trunk of my body. Over time, I started having movements occur in individual limbs and occasionally smaller areas of the body. I spent years slamming forward but never hitting anything: I’d always stop right before the surface. Then one day, I slammed my head into a table, and from then on I could not trust that my body wouldn’t hit things.

I spent years joking about my application to the Ministry of Silly Walks (gotta love Monty Python!) as my legs did all kinds of things instead of walking me straight ahead. After my week in Louisville I had much more control over my movement symptoms but started to experience sensation-related symptoms. I know have a little section of my back that will feel like it’s asleep every once in a while.

I now have pain, numbness, or tingling occur without a discernable cause, usually in different parts of my body each time. My bladder control decreased dramatically, so I am back to seeing my pelvic floor physical therapy.

I also now have migraines on occasion, something I didn’t consider in the past. I am still very happy I participated in the MORE program though, as I can now climb stairs without a second thought (I had a couple years where I needed somebody with me whenever I used stairs), and can have days at a time with no visible symptoms!

These shifts are actually a positive sign, as they indicate that the initial physical habits the body developed now have more resistance, so they symptoms are trying to come out through the path of least resistance. However, these shifts after incredibly annoying as anything I had found to help me adapt to my symptoms needed to be completely rethought after a symptom shift, and a new and different coping mechanism for new and different symptoms must be created.

Outlook

For a percentage of people who get this diagnosis, their symptoms do resolve themselves, and after a short period of time (generally weeks to months) they spontaneously lose their symptoms and go on with their lives, symptom free.

For another percentage, FND is simply a misdiagnosis on their journey to determining what their true condition is. With no testing to confirm the diagnosis, and few ways to prove some of the alternative diagnoses, it can be a difficult process.

I am in the group of people whose symptoms simply did not resolve. Having had this condition for over fourteen years, I am pretty much resigned that it will be something I live with the rest of my life. On the bright side, it is not a deadly condition, and it is not progressive (it is not guaranteed to get worse over time). My goal is to manage my life to have minimal stress, manage the stress I have as well as possible, and to continue to try to improve my quality of life! By doing these things, I might never work full time, but I can have a good and fulfilling life.

Conclusion

FND is an unusual condition that is often misdiagnosed or wrongly diagnosed. There are some experts out there, but even the symptoms of FND span several disciplines. Many people do not get diagnosed in mild cases, as they don’t worry about it, and in some cases that works out just fine. It can co-occur with many mental or physical health conditions, making it hard to pin down.

Many people with the FND diagnosis are at some point accused of faking it or making it up. Social Security Disability Insurance (SSDI) and most support programs have difficulty making determinations for an FND patient because at times we seem able-bodied, and at times we undeniably need help, and we often switch between those two extremes in a matter of minutes.

FND awareness day this year is Friday April 13, and I request that all of you do something to help people learn about FND. Please share this article, or explore the FND Hope website (www.fndhope.org), or simply make a post on social media recognizing the condition. You might help somebody finally find their diagnosis, or help others be a bit more understanding.

Thank you for your time and attention, and I hope you have a wonderful FND Awareness day on Friday!

About the Author

Alison Hayes was diagnosed with conversion disorder (now known as Functional Neurological Disorder) in 2003. She has always viewed herself as an explorer and a person on a mission to improve her life through learning and adventures. She has maintained that explorer’s mindset, and does her best to make her life journey the very best it can be. Her most recent project is the website Thriving While Disabled which contains posts about improving quality of life and state of mind through planning ahead and taking everything one step at a time.

 

Wednesday, 28 March 2018

The Most Anguishing Dilemma

The most anguishing dilemma with chronic illness is when you want to stretch yourself to do something you love, but you know it will challenge your health. A part of you hopes all will be well, hopes maybe you’re getting better, hopes this time you can leave your cage behind. So you do the thing. And like clockwork the giant rubber band slaps and snaps and zaps you back further behind than you were before. Going to the doctor doesn’t help. No answers there. Drugs can’t touch it. There is only the quiet endurance of rest for as long as it takes to regain some ground and pray your mind doesn’t go beforehand. And that your friends don’t leave.

Fran Houston
3/22/16

 

Wednesday, 21 March 2018

Return to Normal

By Roiben

Being ill and signed off work is almost par for the course for most long-term conditions. I say this as someone with more than one such condition. I have had more sick days than “average” and have been officially signed off work more than once.

As I write this I have been signed off sick from work since November 2017, with a return to work set for 5 March 2018. I have used my time off to actively work on improving my health and well-being. Specifically, my Mental Health, which is the reason for being signed off.

So, what can someone do to make being signed off sick, and the subsequent return to work, as smooth and successful as possible?

Firstly, I would recommend having a good working relationship with your HR (Human Resources) contact. Try not to see them as the enemy (as some stigma and work cultures can make them seem). Be honest with them – they cannot help you if you do not express your needs and how you are doing.

Once signed off, keep in contact with your work place and with HR. Experience says this needs to be at least weekly and ideally face to face. Going into your work place once a week keeps it familiar and allows you to keep in contact with colleagues. This is vital in my experience. It has allowed me to stay involved and abreast of what is happening in the workplace and ensured I won’t be a “stranger” when I return to work. It also means any changes that take place while you are away from the office or work place will not be a shock to the system upon your return to work.

Plan your return to work with the help of HR. In most cases, as in mine, a gradual phased return in terms of both hours and workload is best. Diving into the deep end or attempting to do all your usual tasks in fewer hours just increases the likelihood that you will end up sick again. I have had this happen, many years ago – before I knew better.

Don’t return before you are ready to. There may be pressure from family or you might feel you need to be busy or useful, but returning too soon can be detrimental. You will know when you are ready and this feeling should be combined with an obvious improvement in your well-being. It’s important that HR, as well as any medical professional that is looking after you, believes you have improved enough to consider a return to work. HR can’t and shouldn’t allow you to return without confirmation from the medical profession that you are now well enough.

A good HR team will also look at ways to assist you, not just in returning to work but in minimizing the chances of needing to be “signed off” again. They can look at reducing stress-factors and any adaptations that may be required to assist you. This may involve liaison with Occupational Health but does not always need to. It very much depends on what systems and policies your work place has.

Throughout the whole process, make sure you know what these policies are. For example, at what point will you be put on Statutory Sick Pay (SSP) and how much difference there is between this and your normal wage.

Know your rights and read up on what to expect so that there is no added stress in the process. ACAS (Advisory, Conciliation and Arbitration Service, www.acas.org.uk) is a good place to start. It offers guidelines in easy to understand language on what should happen. These are guidelines, not law though. For the law, I would suggest looking at the gov.uk website (www.legislation.gov.uk). These will not just make the process less of a shock, but arm you with the knowledge of what your rights are, should anything go wrong.

Should the worse happen and you feel things are going wrong, document everything. Keep a record of communications between you and work. Make note of any agreements and decisions. Also, make sure you have a record of any medical and occupational health decisions and opinions. It is good practice to do this anyway. Should you feel you are being treated unfairly these documents can be used to state your case.

Ultimately, the process should be smooth with regular two way communications and any decisions made with your understanding and consent. If that is the case, there will be fewer issues transitioning back to work.

Once back at work, especially on a phased return, maintain regular contact with HR to let them know how you are getting on so they can be on hand should you find it too much — or not enough — at any point. Being back in the office does not make your long-term condition magically disappear, of course, and neither should your connections in HR and discussions with your manager.

I am passionate about raising awareness of disabilities, long term conditions and mental illness within the workplace. I am lucky in that the place I currently work is already on board and working to ensure conditions do not become barriers to employment. I am, however, aware that some workplaces are less on the ball and may need some work to increase their awareness of such conditions and disabilities.

My advice is to start from the outset. State your needs and requirements when you apply and build knowledge and awareness throughout your relationship with your employer. That way, if you are signed off sick there is less of a mountain to climb.

There is no doubt that more needs to be done to improve access to work for people who live with disabilities, mental illness and long term conditions. I would encourage everyone to play their own small part in achieving this, if they can.

What are your experiences, and tips for being signed off sick from work? What do you do to raise awareness and ensure your workplace “works” with you, not against you? Please share your experiences in the comments below.

 

About the Author

You can find Roiben on Twitter (@roiben).

 

Thursday, 15 March 2018

Anxiety is Addictive

By Sarah Fader

In a funny way, anxiety can be addictive. It’s something about that rush, that feeling that you are high on adrenaline even if it’s a negative feeling. You get used to running on anxiety autopilot and you want to keep that ship going.

You are accustomed to panicking; you leave things to the last minute so that you can get that energy rush in order to make it happen faster. That's the weird thing about mental illness, it can work for you instead of against you and it's unpredictable when it will do that. Being aware and talking about what you're dealing with is essential to coping with mental health issues.

Back to anxiety; when I was in college I used to wait until the last minute to do my term papers because I felt like that adrenaline was something that was going to help me. Now I know that it’s not necessarily helpful but actually makes me more anxious and can harm my mental health.

Still, there is this addictive quality to panic. Even though legitimate panic attacks are an awful feeling and we don’t want to feel them if possible, there is something to be said for anxiety being a motivator to achieve things. Anxiety is excess energy and even though it is sometimes extremely unpleasant it can push us the point of completion of tasks.

There are other times when anxiety does not help us get things done but rather furthers your fear of your self and anxiety, to begin with.

I’m trying to catch myself when I am procrastinating doing a task that I don’t want to do. It’s a difficult pattern to break but I know that in the end even with anxiety feeling addictive it’s not worth that pain and anguish I feel when I’m trying so desperately to finish something at the last minute.

So what about you? Do you leave things to the last minute because you’re so used to doing them that way or do you plan and not given to the addictive quality of anxiety? If you do, think about changing this and see if it helps you feel a little bit better.

About the Author

Sarah Fader is the CEO and Founder of Stigma Fighters, a non-profit organization that encourages individuals with mental illness to share their personal stories. She has been featured in The New York Times, The Washington Post, The Atlantic, Quartz, Psychology Today, The Huffington Post, HuffPost Live, and Good Day New York.

Sarah is a native New Yorker who enjoys naps, talking to strangers, and caring for her two small humans and two average-sized cats. Like six million other Americans, Sarah lives with panic disorder. Through Stigma Fighters, Sarah hopes to change the world, one mental health stigma at a time. www.sarahfader.com

 

Wednesday, 14 March 2018

An Evening with Author Lucy Nichol

The only normal people you know are the ones you don’t know very well. (Anna Foster)

Last week I attended the launch event for Lucy Nichol’s new book A Series of Unfortunate Stereotypes, published by Trigger Press, at Waterstones bookshop in my home city of Newcastle upon Tyne.

My first contact with Trigger Press was in August 2017 when I was introduced to Stephanie Cox by author Anne Goodwin. I had met Anne in 2015 at the launch event for her first novel, Sugar and Snails. Stephanie reviews books for her blog Words Are My Craft. I asked if she’d consider reviewing our book, and she said yes! (You can read her fabulously detailed and insightful review here.)

Stephanie is Assistant Copy Editor at Trigger Press which specialises in mental health titles. I began following Trigger Press on Twitter (@trigger_press), as well as some of their authors including Lucy Nichol and Karen Manton. (Karen recently guested here at Gum on My Shoe, sharing her story and talking about her book Searching For Brighter Days: Learning to Manage My Bipolar Brain.)

I learned of Lucy’s book launch back in January on the Waterstones website. The description intrigued me and I booked my ticket.

An Evening with Author Lucy Nichol

Join Radio Newcastle’s Anna Foster in conversation with Lucy Nichol, author of new book A Series of Unfortunate Stereotypes: Naming and Shaming Mental Health Stigmas. A Series of Unfortunate Stereotypes is a moving and funny account of Lucy Nichol’s journey through mental illness and recovery, told through the lens of mental health stereotypes and reflected in the media of the time. In telling her own story, Lucy has been able to claw herself back from the grips of her anxiety and tackle important issues surrounding mental health as a whole. She is a dedicated writer and mental health campaigner.

I arrived at the venue thirty minutes or so before it was scheduled to start. Lucy hadn’t arrived yet but Anna was sitting at the front. Taking a deep breath I walked over and introduced myself. (Note: Martin simply doesn’t do things like introduce himself to famous BBC radio presenters—except apparently he does now!) Anna is an absolute delight! We talked about my friendship with Fran, our book, social media, and my interview a couple of years ago on the Mentally Sound show for Gravity Radio NE.

The venue was full by the time Caroline from Waterstones kicked things off. Anna explained how she and Lucy had first met several years ago and then talked to Lucy about her experiences with mental illness (anxiety and panic attacks) and stigma, and how she came to write her book.

Lucy comes across as utterly genuine and honest, and has a great sense of humour (and a delightful singing voice!) She read the final chapter from her book and fielded questions from the audience. These included questions on the prevalence of mental illness these days compared to in the past, the importance of self-care, and whether mental illness helps make a person more compassionate.

Lucy said that when she is doing okay her lived experience helps her empathise with others. But when she is not doing well she needs all her focus to deal with what she is going through. I found myself nodding as she was saying this, because it is how Fran is with her own mental health.

Once the questions were over, Lucy stayed to sign copies of her book. I had a copy of High Tide, Low Tide for her, which she accepted graciously. (Hope you enjoy it, Lucy!)

All too soon, the event was over and I made my way home, inspired by Lucy’s story and the general spirit of courage and determination to counter the stigma and discrimination that sadly is still all too prevalent. I look forward to reading Lucy’s book and reviewing it.

You can contact Lucy Nichol on Twitter (@Lucy_Nichol78). Her book, A Series of Unfortunate Stereotypes: Naming And Shaming Mental Health Stigmas, is available on Amazon and from Trigger Press. You can find Anna Foster on Twitter (@Ladyannafoster) and on the BBC Newcastle radio breakfast show.

 

Uncertainty Makes Mental Illness Worse

By Sarah Fader

One of the most foundational parts of living with mental illness is structure and routine. This can be applied to a multitude of areas in your life. Whether it's your career, friendships or romantic relationships, things need to feel concrete and defined. When you have a mental illness, having a schedule and routine to follow is imperative.

When things are ambiguous that's when you get into trouble. If you're unsure of what your day is going to look like you might feel anxious or out of sorts. If you are not certain of the boundaries in a romantic relationship, this can make you feel nervous, insecure or even depressed. This is not something that you need to worry about if possible. If there are ways to avoid feeling down or anxious about a relationship or an ambiguous situation at work, then these techniques should help.

There are things that we could obsess about when we don't know the perimeters or the boundaries of a relationship. When you have clarity in any context of your life you will inevitably feel better. This is crucial to someone who lives with a mental illness. Anxiety is exacerbated by "not knowing" and there are so many things in life that we don't know. If it's possible to have transparency in a situation, then, by all means, make that happen!

How?

This is the tough part: ask the other person what's going on. When you are feeling anxious and you don't know where you stand with another person, the best thing to do is not to guess, but to directly ask them. Human beings are powerful creatures, however, we do not read minds. We cannot presume to know what is in someone else's brain. You might be afraid to hear what they have to say, but you can ask that person what they're thinking and how they feel.

When you ask for clarity in a relationship or a situation with murky boundaries, you will feel less anxious when you know what you're dealing with. People, like me, living with mental illness need to be mindful of what energy we bring into our lives. Many of us are sensitive and empathetic and when we are uneasy about something or someone, that takes a toll on our feelings. Being an empathetic person, I want to help others, but if I don't know what's going on, I can't help.

My point is if you can create a life in which you know pretty much what to expect from those around you, do that. Of course, life is unpredictable and there's never a way to know what will happen in a given situation. However, if you allow people into your life who are reliable and honest, you will be able to feel calmer and more secure. What about you? Do you feel comfortable with ambiguity or does uncertainty make you feel more anxious?

About the Author

Sarah Fader is the CEO and Founder of Stigma Fighters, a non-profit organization that encourages individuals with mental illness to share their personal stories. She has been featured in The New York Times, The Washington Post, The Atlantic, Quartz, Psychology Today, The Huffington Post, HuffPost Live, and Good Day New York.

Sarah is a native New Yorker who enjoys naps, talking to strangers, and caring for her two small humans and two average-sized cats. Like six million other Americans, Sarah lives with panic disorder. Through Stigma Fighters, Sarah hopes to change the world, one mental health stigma at a time. www.sarahfader.com

 

Wednesday, 7 March 2018

Learning to Manage My Bipolar Disorder

By Karen Manton

First Experience of the Illness

My first experience of Bipolar disorder was at the tender age of seventeen years. I had just commenced my first full time post working for the local authority. I was also in quite a destructive relationship.

The first symptom that I had was insomnia. I was going to bed of an evening but just finding that I was unable to sleep. My mind was racing with thoughts and it was as though no matter how hard I tried I just could not switch my brain off. The first night passed and I was aware that I had not had a wink of sleep. Soon one night turned into more until eventually I had not slept at all in a whole week.

By this time, I was totally past myself. I can recall leaving my home to catch a bus to work and feeling like this very tiny person in a big world. When I arrived at the office I could no longer concentrate. I did not have a clue what I was doing anymore and could simply not focus. My manager was aware that I was very poorly and went to visit my parents to explain just how I was presenting. It was obvious by now that I needed help.

GP Visit

As mam was becoming increasingly concerned she accompanied me on a visit to my GP. I was very angry and upset by this point and all I could do was shout, swear and tell the doctor that I was ‘confused’. This was becoming a very used saying of mine. It was exactly how I felt as I had no idea what was happening to me. The doctor seemed fairly bewildered by what he was witnessing and explained to my mum that I had ‘Anxiety and Depression’ which meant very little to either of us. I left with a prescription for anti-depressants.

The next few months I just stayed at home eating, putting on weight and being very sad. By now I had ended my relationship and taken some sick leave from work. It was to be quite some time before I became well again. In the end I decided to stop the medication and start to socialise which seemed to help.

My First Section

It was to be six years before I had my next episode, January 1992. I was to be sectioned following a phantom pregnancy. I was in hospital for exactly a week.

I then retired from work due to ill health after repeated episodes of stress. I struggled to concentrate in the office and would find that I just could not cope with any pressure.

I had felt extremely frightened after being sectioned. It was an horrific ordeal and had left me feeing very vulnerable.

Further Episodes, Further Sections

Sadly, I was still not given any diagnosis, so I had no idea that I had a mental illness. Because of this I was continuing to have episodes of extreme highs and very debilitating lows. Each episode would always start in the same way with a lack of sleep. I would then completely lose my mind. My imagination would just run away with me. I would think that I was Jesus reincarnated and that I was immortal. This was just so frightening to everyone around me. It would result in further hospital sections.

For some reason the episodes began to happen every two years. Something would happen in my life, maybe a bereavement but it would my reaction to the that that would trigger the illness.

Unfortunately, this was to happen in 1992, 1994, 1996, 1998, 2000 and 2002 and yet each time the medical team could not give the diagnosis that was so desperately needed. It would just follow the same pattern of becoming ill, seeking help, commencing medication then stopping medication. This was such a sad and distressing time in my life. I began to feel that I would never become well again!

At Last a Diagnosis

I was to finally receive my diagnosis of Bipolar Disorder in 2002. Thankfully for me a new psychiatrist had come aboard. At last someone was prepared to listen to me and to make some sense of what was happening to me. When I was feeling a little better I had prepared some questions to ask my consultant. As strange as this may sound I was delighted when he told me what was wrong with me. I could finally embrace this illness and do what was needed not only to become well again but this time to remain well.

I was determined that this time I would never darken the doors of the mental hospital again. I wanted to learn how to manage this illness and I would do whatever I could not to let it beat me again.

My new consultant and his team were just amazing. He knew the secret to me remaining well was to stay on the medication. This had made me well and therefore it was vital that I stuck with it.

Following my discharge from hospital I remained under the care of my consultant and do so to this day. I feel this is my safety net.

I have remained on my medication as a few years ago we attempted to stop the tablets, but I had a wobble with my illness and this worried me that I may have had to go back into hospital. Thankfully, because of the fast action of the consultant he prescribed the medication needed and I remained at home and made a speedy recovery.

A few years ago, I embarked on twenty-two weeks of cognitive analytical therapy which provided great benefits to me. This taught me how to reflect on my life without it causing me to feel distressed.

From then on, I made the decision it was simply not worth the risk to me becoming ill again. After all what does it matter if I need to take tablets. The important thing is they give my quality of life.

Searching for Brighter Days; Learning to Manage My Bipolar Brain

It has been an extremely difficult journey for me in learning to manage my illness. I have suffered a great deal with Bipolar. It has meant that I have recently had to leave yet another office job due to stress.

I then decided it was time I should write my life story as I have certainly lived a life. I set about this last year and was delighted to have my book published in September by Trigger Press, the publicist for the Shaw Mind Foundation. They decided that my book belonged in their ‘Inspirational Series’.

In my book I describe my very difficult childhood and then how I enter adulthood under the shadow of the mental illness. However, I also share how I became well and have managed to remain that way. I talk about my search for those ‘brighter days’.

About the Author

Karen Manton was born in Grangetown, Middlesbrough in the North East of England. From leaving school she worked for the local authority. Having suffered from Bipolar Disorder from the age of 17 Karen retired at a very young age on ill health. She later returned to work in Social Care but after suffering further ill health resigned from her post. She then decided to write her life story, Searching For Brighter Days: Learning to Manage My Bipolar Brain. The book has been published by Trigger Press part of the Shaw Mind Foundation. Karen is now a Mental Health Ambassador for the foundation and will be continuing to work alongside them.

You can contact Karen through her Facebook page, where she shares helpful information about Bipolar Disorder.

Her book Searching For Brighter Days: Learning to Manage My Bipolar Brain is available on Amazon and from her publisher, Trigger Press.

 

Sunday, 4 March 2018

Welcoming Myself Home

When I am depressed I yawn a lot. It’s as if I can’t take a breath or don’t want to. I sleep a lot and can’t wake up. And it takes forever to do one task if it indeed gets done. I just spent a month in Mexico where I pushed all my thoughts aside and intensely lived in the moment. Many things were wonderful, some not so much. Living alongside bipolar is not an easy thing to do especially when traveling. Coming home I began unravelling and everything stopped. I was really sick in body and mind. I second guessed everything. The only thing I hung onto was that I was really proud of myself to do such an amazing thing. There are those who don’t understand. I try to stay away from them. Understanding friends I cling to for they help me integrate in a healthy way. I continue to welcome myself home.

Fran

 

Wednesday, 28 February 2018

Visual Spaces

By Roiben

I write this, looking back over a lifetime of not fitting into boxes. I have a severe hearing loss. I am Type 1 Diabetic. I have a mental illness. I am bisexual. I am many things that do not fit the “norm”.

Today though, I want to talk about the thing I probably spend the least time talking about. I am visually impaired. I had cataracts as a baby, which permanently damaged my vision. I am blind in my left eye. It notices change in light and movement — but it can’t tell what is moving. My right eye has some damage to the cones and rods which mean I find it hard to distinguish between certain colours and shades. I also have Astigmatism and, as the right eye is doing all the grunt work, it can get tired easily. I also, thanks to years of Diabetes, have Stage 1 Retinopathy.

Ultimately, this means I lack stereoscopic vision — I am not able to judge distance or speed of objects and have no depth perception. I am one of those people who need markers on steps and curbs to get around in my day to day life.

What does this have to do with boxes, I hear you ask. Well, although I am visually impaired, I am classed as having too much vision in my right eye to be legally classed as Partially Sighted. The regulations and checks require a significant loss of vision in both eyes to count. So, despite being fairly severely visually impaired in lay-man’s terms, I do not fit into the legal box-ticking exercise that could enable me to get more assistance.

According to the Royal National Institute of Blind People (RNIB), the UK’s leading charity supporting blind and partially sighted people, there are over 200 eye conditions — and there are many, many people, like me, who do not fit the boxes. As is the case with many such boxes, there are many people falling between the gaps, who perhaps actually need the help the box checking would provide. It is perhaps more well known in the case of Mental Health, where someone can literally be told they are too ill, or too chronic to get the help they so desperately need. In this instance, I wonder how many of those people who do not fit the regulatory definitions and limitations could actually really, really do with the help?

As things stand, my vision in my right eye is deteriorating. The Astigmatism is getting worse and I have had to change my glasses prescription to match. I have to keep a close watch on my blood sugars as well, because that affects my retinopathy — which is always at a risk of getting worse.

Maybe one day, I will fit into that box. Maybe I never will. Either is okay. I am me, and I have grown up with all these things and in doing so have put in place my own coping mechanisms. I learn routes and places. I am a creature of habit and often put things in the same places, or walk the same route from A to B. I know how many steps there are on certain staircases and with practice can walk the ones I know with ease. I have learnt to keep a clear route between my bed and the door, kitchen and toilet.

The main problems come when there is a change. A diversion. Shoes left out in my “path” or a chair moved. When walking unknown places, or a different route, I tend to slow down, to take more notice and be more cautious. I trace my route along walls and banisters and follow any signs or maps I can find. Then I remember it, in case I have to take the same route again.

As with all my disabilities, I have adapted and learnt ways “around” it in order to continue living life the best I can. I just worry for those who perhaps have not yet learned adaptations, or who struggle in their own ways and could do with getting more help.

 

About the Author

You can find Roiben on Twitter (@roiben).

 

Wednesday, 21 February 2018

Our Mexican Adventure, Part Five: It’s What We Do

I give myself permission to fully experience whatever comes up during this trip, knowing I am safe.—Martin Baker

Fran has been in Mexico for a month, for dental treatment. I kept a journal throughout the trip, and compiled my day-by-day notes into a series of weekly blog posts.

This fifth post covers Fran’s final week in the town of Ajijic in the State of Jalisco, on the north shore of Lake Chapala.

Part One | Part Two | Part Three | Part Four | Part Five


Our Mexican Adventure, Part Five: It’s What We Do

Wednesday, February 14, 2018, 7:30 a.m. UK time

Yesterday (Tuesday) was Shrove Tuesday here in the UK, and Mardi Gras Carnival in Mexico. Fran went out in Ajijic and found a great spot to watch the parade and festivities. She talked with local folk, including the children of one family who were sitting close by.

It wasn’t a situation Fran feels comfortable in (“I hate parades. I hate crowds. But this is as close as I’ll get to Mardi Gras.”) but she wanted the experience. And it certainly was an experience! People, colour, noise—and lots of flour!

“Me and my stuff are covered. Dammit. How can anyone think this is fun? It’s in my phone, hair, purse, shoes, jacket, etc. But I made some nice connections. I’m finally using my iTranslate app to talk to people!”

We caught up properly back at her apartment, after she’d had a (hot!) shower and washed out all the flour. We were on for a couple of hours and were able to properly catch up on what’s been going on for each of us. We sat on the veranda, shared a beer, and took in the evening. I also got to meet Felix and Don who own the place. I really loved Felix’s NYC shirt! Seeing and hearing how Fran interacts with the people around her, especially those she connects well with, helps me “place” her better in her environment and get a better handle on how she is doing. It’s also a lot of fun for me!

Thursday, February 15, 2018, 7:30 a.m. UK time

We didn’t get to have any Skype calls yesterday (Wednesday). I was really busy at work and Fran had a full day too. After her massage session, she went with a friend to the hot springs.

“Just finished hot tubs:
Vinegar.
Flowers.
Magnesium.
Coffee.
Wine.
Mud.”

I can’t wait to hear about it all!

Friday, February 16, 2018, 7:30 a.m. UK time

Fran went for what was supposed to be her final dental appointment yesterday (Thursday) but it turns out they couldn’t do the crowns, so she will go back on Saturday. Other than that, it went well.

We had two or three short calls in the evening. There were a few technical difficulties, but we stayed calm and tried again later. I was able to catch Fran up on some of what has been going on for me here. She isn’t allowed solid food now until her crowns are done. She invited me to join her. So today (Friday), I’ll not have any solid food until dinner this evening.

Other than that, I followed up on the new blogging opportunity I mentioned the other day. It sounds really exciting if it comes off. I also asked Laura Marchildon who runs the Our Bipolar Family website if she would like to review our book. (Thanks, Laura!) It feels good, in the midst of other stuff that is going on for me right now, to be progressing things in our mental health work. I took some me-time too, including time away from the PC. I also did a Loving Kindness meditation for the first time in ages. It helped, on a number of levels.

Saturday, February 17, 2018, 10:30 a.m. UK time

I’m sitting at a corner table in Porter’s café in Tynemouth, beneath a big poster of the US flag. I’m maintaining my partial fast in support of Fran, which is a real pity because they have some amazing cakes and tray-bakes here, not to mention porridge! On the other hand, my weight dropped 2 lbs yesterday after my first day of partial fasting, so that’s something!

Fran struggled quite a bit yesterday with not being able to eat. She made up for it with plenty of liquids, including a margarita in the afternoon and a large glass of red wine when we met on Skype in the evening. It’s fair to say she was a bit tiddly! She’d had a grand day out, though, visiting the island fort of Mezcala on Lake Chapala. She posted a great photo on Facebook from the fort. She was really sleepy from her day out and drinking on an otherwise empty stomach. After talking for a little while she went for a lie down and fell asleep to me reading from Outlander.

We may or may not get to have a call tonight (Saturday night) but if not, last evening’s call was a great way to round out our shared trip to Mexico. We’ve stayed in touch well, and if there have been times when I’ve got irritable and grumpy (which there have!) or Fran has (ditto!) then we have moved through them easily.

Last night Fran said she hoped I wasn’t cross she’d been less present for me, with being away. It’s true that I’ve had stuff going on, and had Fran been at home I probably would have explored it with her more than I’ve been able to. But she has been there for me—more than on previous trips in fact—and has been very supportive. And I’ve been blessed to find caring support in other places. (You know who you are. Thank you.)

I’ve used my Wellness Plan (today’s trip to Tynemouth and the coast is a part of my self-care strategy) and moved through things as they have come up. I am proud of how Fran and I have each handled things.

Sunday, February 18, 2018, 10:25 a.m. UK time

I really enjoyed my day at the coast yesterday (Saturday). It gave me space to think—and not think. A pause in the pace and intensity of this past week or so. Fran’s dental work—her four crowns—went well. (“Done. I’ve been crowned!”) Afterwards, she met up with a friend for a meal—filet mignon and mashed potatoes—at Los Telares.

I wasn’t at all sure we would get to talk, but she called me as she walked back to the apartment from the restaurant. Voice only, but it was good to hear in person how she was feeling after the dental work, and at the end of her time in Ajijic. I also got the—now familiar to me—sounds of the town. Kids playing in the street. Snatches of Spanish from people as we passed by. And the dreadfully busy street Fran has christened “Butchers’ Boulevard.” I was genuinely relieved to make it safely across! I walked Fran back to the apartment, then said goodnight. It was close to one in the morning here in the UK, 7 p.m. in Mexico.

Today Fran will finish packing. She has a ride booked from Ajijic to the airport at Guadalajara. Then three flights and a bus ride home. Houston. Chicago. Boston. Portland. I will keep an eye on things for any delays or other changes. Hopefully it will be more straightforward than it was on the way out. As I posted on Fran’s Facebook wall: “Safe and sure on your journey home!”

Monday, February 19, 2018, 7:35 a.m. UK time

Well, as the changes to the flights/times in my journal show, things didn’t exactly go according to plan yesterday (Sunday)!

The flight from Guadalajara to Houston went fine, but there were delays with the flight to Chicago which threatened her final connection. So… Plan B! Fran rearranged her tickets so she would overnight at the airport and catch an early direct flight to Boston. I updated the flights in my calendar, and the details I’d stored in my United Airways and Flight Hero apps so I could keep an eye on any delays. We checked to see if her bus ticket from Boston to Portland would still be valid (it would). It looked workable, apart from the fourteen or so hours Fran would have to spend at the airport. (“You can’t drink beer all night!” “I won’t!”)

Then Fran saw there was a better way. Plan C! More rearrangements and updates, but there was a flight from Houston to Newark within the hour, arriving just after midnight local time. That’s where she is now. Her final flight, to Boston, is scheduled for 6 a.m. her time (my 11 a.m., we are back to five hours apart again—yay!) So, still quite a wait for her, but the end is in sight.

Traveling long distances like this is mentally and physically brutal, but once she is home later today there’s not a lot she needs to do for at least a couple of days. R&R is definitely in order!

Tuesday, February 20, 2018, 7:30 a.m. UK time

I wrote yesterday (Monday) morning that travel can be brutal for Fran, physically and mentally, and this journey home from Mexico has certainly been that. She caught her final flight from Newark to Boston fine, but it was a scramble to make her bus connection.

”Welcome to Boston, Fran!”

”On plane. Stopped on runway. Hope we move fast. I really really want to get that bus but we’re not moving. God damn. I am so sick of everything going wrong for me. I won’t make it.”

”It was always going to be close, but I did think we would make the bus.”

”Those two hours until the next bus are gonna kill me.”

”It might be delayed departing. When you do get off, you need exit door B115. The bus stop is right outside.”

We did make the bus, just, but Fran had no time to look for her luggage. It turned out her suitcase was in Chicago anyway. Fran arranged for it to be sent on. I think it was delivered to her late evening. The two hour journey passed without incident (“Yay Maine. The bus was comfortable.”) and a friend met Fran and drove her back to her apartment, stopping off for groceries on the way. Fran was finally home.

I was expecting exhaustion but Fran also had bad neck pain, a headache and nausea which progressed to vomiting. I encouraged her to stay hydrated but she could keep nothing down.

”I’m wasted. My head is pounding. My neck is killing me. When will it stop.”

”Did you get any sleep at all, overnight or today?”

”Spotty. I won’t Skype at 2. Maybe 6 for a little bit.”

”That’s fine, Fran. You in bed?”

”On couch.”

”Bed might be better for your back/neck.”

Twenty minutes later: “I’m in bed.” We Skyped at 6 p.m. (my 11 p.m.) but not for long. I left her to rest, but we chatted on and off for a couple of hours.

”I feel so sick I’m crying. Headache. Neck ache. Shivering. Nauseous.”

”I didn’t realise it was this bad. Just so I’m sure, you did take your regular meds yesterday/today with all the traveling?”

”Yes.”

”Thanks. You’re doing the right things. Do we need to think about seeing if someone can come sit with you?”

”Hold my hair.”

”Holding it back”

”I’m so glad I am home dealing with this rather than traveling.”

”Omg yes. This would have been a nightmare overnight at the airport.”

It was getting late.

”I’m going to bed. How are you feeling now? Still being sick?”

”A little better. I hope to sleep now.”

There were no further messages overnight so, fingers crossed, Fran is sleeping. She doesn’t need to be up early, or leave the apartment today. Extreme self-care. Back to basics. Pick up gently with things over the next few days. We will keep a watchful eye on her state of being as she emerges from this crash fatigue.

There will be time enough to look back over the past four weeks in Mexico. Unpack. Sort through photos. Engage, gradually, with friends both at home and online.

And, no doubt, there will be other trips to think about, though we don’t have any planned for this year. Travel is in Fran’s bones, and I will support her as best I can. I will be here for her, as she is here for me.

It’s what we do.

Part One | Part Two | Part Three | Part Four | Part Five