Wednesday, 13 November 2019

Caregivers Need Care Too

By Janet Coburn

Originally published in May 2017 at Bipolar Me.

While there are professional caregivers, family members often provide care and support for those with bipolar disorder and other mental illnesses.

My husband of 35 years is my caregiver. He does a spectacular job – making sure I have my meds, taking me to my appointments, running the errands that I have no spoons to do, keeping the house quiet when I need to sleep, making sure I eat at least one nutritious meal a day.

It’s a lot. And there are things I can give him in return. Things he needs.

Appreciation. When my father was dying of cancer, my mother was his primary caregiver. One day she came to me, wanting me to tell her that she was doing a good job. She knew that she was. She just needed to hear it from someone else, someone who could tell her that her excellent care had been noticed and appreciated.

Appreciation – validation – is the thing that caregivers need most, to replenish themselves, to allow them to keep doing the things that are so vital for their charges. And it’s the easiest to give. When you’re in the depths of depression, it may be difficult to remember to say “thank you,” but it means a lot to your caregiver.

Now I’m mostly out of my depression (usually), and I say “thank you” a dozen times a day. And he always responds, “You’re welcome, friend.”

Alone time. Primary caregiving can be a full-time job. I know that one thing I need in the process of healing is alone time. Dan needs it too. He needs time off, even if that’s just time to retreat to his study and watch a movie or go outside and dig in the garden. I can always reach him if I really need him – for example, if I have a panic attack – via cell phone if nothing else. But, as the saying goes, you can’t pour from an empty vessel. That’s part of the reason that he’s able to give me so much of what I need.

Couples time. This doesn’t necessarily mean sex. It means time spent together, doing something other than dealing with mood swings and trauma. It’s a little gift we give each other. Sometimes I sit through a movie I don’t really care for, just to give him the gift of snuggling on the couch. He got me color-and-bake ceramic mugs that are great for creativity and distraction. One rainy afternoon we sat together and each colored one side of the mugs.

Life stuff. Dan does most of the chores and tasks of daily living, but I do what I’m able to. I earn money. I pay bills online and do most of the other computing, except what he does for leisure. I help with cooking to the extent I can – sous-chefing, finding recipes, breading or mixing or inventing dressings and sauces, making grocery lists. He can ask me for help too.

Sharing my spoons. When I do find myself with a few spare spoons – a little extra energy occasionally – I try not to be selfish with it. When I have spoons to spend, I like to shower and dress and go out for lunch. But the other day, I showered and dressed and went for a walk in the woods with Dan, something he’s been longing for. My spoons ran out pretty rapidly, but he appreciated that I made the effort and shared one of his delights. It was another gift that cost no money.

In other words, when you have a caregiver, don’t think it’s all one way. Your caregiver needs care too. Small or large, what you are able to give will be appreciated.

About the Author

Janet Coburn is a freelance writer/editor with bipolar disorder, type 2. She is the author of Bipolar Me, available on Amazon, Barnes & Noble, iTunes, a through other outlets. Her second book, Bipolar Us, will be published later this year by Eliezer Tristan Publishing.

Janet writes about mental health issues including talk therapy, medication, books, bullying, social aspects, and public policy, but mostly her own experiences with bipolar 2. As she says, “I am not an expert and YMMV – Your Mileage May Vary.”

 

Friday, 8 November 2019

A Few Thoughts on Friendship Whilst Waiting for a Friend

I’m sitting at a table in Newcastle’s City Library. At my side is the library copy of High Tide, Low Tide, the book I wrote with my best friend Fran. I never tire of seeing it on the shelf. It’s a proud moment for any author; second only to not seeing it because someone has taken it out on loan.

I’m waiting for a friend. We’ll meet for coffee and then go for a drink or two; maybe something to eat. We’ll catch up with what’s going on for us. We’ll laugh, share old memories and make new ones. It is at moments like this that I feel most blessed. There were times in the past when I had no one to meet up with. I shared a quote on Facebook yesterday:

I don’t chase after people anymore. If they like spending time with me they will do so. (Barry M. Sherbal)

I posted it as a reminder to myself. Over the past year or so I’ve realised that chasing after people is unhealthy — for them and for me. I’ve done a lot of it in the past and the results have rarely been pretty. Some friendships have survived. Some haven’t. With some the jury’s still out. Letting go of the neediness and insecurity hasn’t been easy for me. In fact it’s been really hard and I’ve put in a lot of work. I am not altogether “there” yet but it has brought peace, and the realisation that in fact yes, I am worthy of having people like me and want to be with me. I don’t have to chase or coerce them into doing so.

I appreciate those who want to be in my life and want me in theirs. These are the relationships I value above all and within which I feel the most valued.

My friend has just messaged to say she’s on her way. Time to return the book to its place on the shelf and head out to meet her.

 

Wednesday, 6 November 2019

Chapter and Verse: A Few Thoughts on Poetry, Creativity, and Mental Health

I met up recently with fellow blogger Aimee Wilson and we got talking about poetry and mental health. She showed me the blackout poem she’d created at a writing class run by Northumberland Council.

Watch it
permission
rather
I would
demanded
tolerance was not to be tested
increasingly restricted
reality reliving   particularly happy distracting
not dared to return
approved of
given up hope

Poetry is a new avenue for Aimee but she writes prolifically for her blog I’m NOT Disordered. As she says, “I find writing so beneficial for my mental health.”

We agreed there can be a close relationship between mental health and creativity. I shared with her how Fran had never written or been interested in poetry until she met me in May 2011. At the time, she was highly manic. Our early emails and online chat conversations were full of wordplay and had a free-flowing stream of consciousness quality that I found intoxicating. Sparked by that, and my own poetry which I shared with her, Fran began to write.

She wrote prolifically. Her poems were long; sometimes rambling, often brilliant. She wrote blisteringly of her experiences as a woman living with serious mental and physical illness in a small island community that did not understand her or what she was going through. She posted most of her work on social media. She held a live book reading and went on the radio. We talked of finding her a publisher.

Fran’s mania was eventually reined in by a change of medication, precipitating a winter of crippling depression and suicidality. Her creativity ceased as suddenly as if a switch had been thrown. It took months but eventually she began to re-emerge. The following description is from our book High Tide, Low Tide.

The wild, personal, and passionate poetry which flowed during Fran’s major episode of mania ceased when she fell into depression. Her creative voice was silenced for months. When it returned it was completely transformed. The haiku forms that emerged as she began to climb out from depression were more than descriptions of the island scenery around her. They were Fran’s attempt to find a reason to go on living.

boat on the water
slicing the calm
foaming leftovers..

quiet day
loud heart
stillness..

high tide
low tide
edgeness..

what else is there to do but live life..

These poems were written on Centennial Beach, a short walk from where Fran lived at the time. She would return home, show me her latest poems, and then share them on her social media page. It was her way of reaching outward again. As she said later, “I was trying to save my life, to get out of the house onto Centennial and wait for the haikus to come. That was all I had.”

As her mood stabilised Fran found less of an impulse to write poetry and it’s been a long time since she did so. This saddens me because I loved the insight and wisdom her poems expressed, but they are red flags for mania and her health is more important to me than poetry.

Aimee’s principal diagnosis is borderline personality disorder (BPD) but she could relate Fran’s story to her own mood instability. We agreed it will be interesting to see if she adds poetry to her options for self-expression and self-care.

I don’t have a mental health diagnosis but my writing interests and outputs have changed a lot over the years. A collection of my poetry was published in 2008, but I stopped writing poetry much earlier at the age of twenty-three. Since then I have written only two poems. Ironically, the first arose in response to a period of writer’s block. The second was inspired — triggered, really — by attending my mother’s funeral in 2018.

Wandering
Wondering

How do I feel
What do I feel

Release
Relief

Re birth

Stillness
Silence

Un known
Un homed

Un tethered

Still
Calm

Centred (thank you

— Liverpool, March 26, 2018

Between 2001 and 2005 I wrote articles and short stories in the fantasy genre for Reunion: The Alternative Tolkien Society. Most are still available on the society’s website. In recent years my work has been in the mental health arena; our two books High Tide, Low Tide and No One Is Too Far Away, and our blog.

Do you write poetry or prose, or do you have a different creative outlet? Has your creativity changed over time? Does it follows your moods or aspects of your mental health? We’d love to hear your experiences.

 

Wednesday, 30 October 2019

Fibromyalgia and Social Support

By Sarah Blackshaw

In this hectic world, maintaining friendships can be a tricky thing to do. When you have a chronic physical health condition such as fibromyalgia, it can be even harder. I spend a lot of time working with people who struggle with pain and fatigue, and I’ve written this blog post to explain the things that I think are important when accessing social support with a condition like fibromyalgia.

Communication Is Key

The thing I hear most often when talking to people who are struggling with pain and fatigue is that “other people don’t understand.” That’s likely to be due to a combination of factors. As a society, we don’t do a very good job of explaining conditions like fibromyalgia, as we tend to buy into a model of “have something wrong – go to doctor – get fixed – live happily ever after.” That model rarely works any more these days, and instead we have lots of people struggling with chronic physical and mental health conditions that cause distress. On top of that, if the healthcare system isn’t very good at explaining it, how do we expect people suffering with fibromyalgia to explain it – a lot of people barely understand it themselves! Over time, that can lead to feeling as though nobody around you understands, when in fact it’s more likely that it hasn’t been explained to them very well (maybe because it hasn’t been explained to you very well).

When communicating about fibromyalgia and what you might need in the way of social support, there are a couple of things that are particularly important. One is to explain what might be difficult, and one is to explain what you need. For example, “I’ve got fibromyalgia, so we need to change our plans” is a good start, but it doesn’t tell your friends what needs changing specifically or how to do that. Something more like, “because of my fibromyalgia I’m in a lot of pain, so I can’t really spend three hours walking round the shops today. Could we go for a coffee instead?” is specific, explains the symptom you’re struggling with that day, and gives an alternative option. Most people want to help, and will be happy to change a social plan to allow you to attend.

Plan, Prepare, Pace!

These are three things that should be familiar to people with fibromyalgia. Planning and preparing for social events can make it a little bit easier to manage the pain and fatigue that can come with doing social activities. It might be that you need to ease off on some things for a day or two before, or not plan anything too strenuous in the days after a social event. If you’re an introvert like me, that’s also something that you need to take into account – the “social tiredness” that comes with being around people can make fibromyalgia symptoms worse, so make sure you’re aware of how much being around people can take from you as well as give back to you. Above all else, pacing is really important. Changing plans at the last minute is exciting, spontaneous, fun – and probably not a great idea until you’re relatively confident that you can manage the flare-up that might come with it. I’m not saying that you have to stick rigidly to a plan (you can go to a different restaurant if you want to!) but a cinema trip that becomes a night out clubbing probably isn’t going to do your symptoms any favours, and might make you feel like you can’t do “anything” social when in fact that’s not the case. As the old saying goes: fail to prepare, prepare to fail.

There are lots of things that you might not have considered doing when you didn’t have fibromyalgia, that might be really good to get social connection now. Someone I know likes to invite their friends round and asks them to bring a book that they’re reading – then they make a cup of tea and read together in silence. There’s some conversation, but there’s also a sense of “being together,” which is more important than anything else. Changes like these take some getting used to, but most people are willing to do things differently because they care about you.

Don’t Forget Social Media – but Beware of the Pitfalls

Social media can be an incredible tool when you’re struggling with fibromyalgia and still want to be sociable. There are loads of people out there who are also struggling too, and you can chat to someone halfway around the world to provide and receive support (as Martin and Fran have proven time and again). On Twitter, hashtags like #spoonielife and #chronicillness can connect you with like-minded people who have similar physical health conditions, and we know that however much people like to bemoan social media, it’s great for finding friends.

That comes with a caveat though – beware of social media groups keeping you “stuck.” What I mean by that is that even though it can be great to complain when you’re having a bad day, if that’s all you’re seeing on social media it can start to colour your view of the world. You can start to believe that every single person with fibromyalgia experiences it in the same way, and that nobody with pain or fatigue can ever have a social network outside of a computer. Whilst social media is so useful to meet people who understand how you feel, you should all want the best for each other and want to help each other manage your fibromyalgia for the better – that’s true friendship. If there’s a lot of complaining and nothing positive there, maybe it’s not the best place to be.

Learn When to Let Go

This is linked to my last point, but also to “real-life” situations. Most people are kind, loving people who want to help you because they value your friendship. But not all of them. If you’re holding on to friendships with people who don’t understand why you might need to change your plans, or who try to push you past your pain and fatigue tolerance because they want to do something different, they’re not really your friends. Friendships grow and evolve, that’s the joy of them, and if your friends won’t grow and evolve with you then you might have to think about letting them go. That’s not to say that as soon as they do something that feels wrong you need to cut them out of your life! But if you explain why things need to be different and yet you keep having flare-ups after hanging out with them, or you’re left feeling guilty about not being able to “keep up,” maybe they’re not the right friends for you at this point in time. Try dialling back your interaction with them, or even just sticking to messaging them for a while rather than meeting up – then, if you feel ready to, you can see if they’ve changed their understanding.

Hopefully this blog post has helped you to see that you can have a full and active social life with fibromyalgia – it just might need to look a little different to how it looked before. Thanks very much to Martin and Fran for letting me write this post, please let them or me know if you’ve got any other tips for getting social support when you have fibromyalgia.

About the Author

Sarah Blackshaw is a clinical psychologist working with people who have chronic physical health conditions, particularly chronic pain.

She blogs over at www.clinpsychsarah.com/blog, and can also be found on Twitter @academiablues.

 

Wednesday, 23 October 2019

Friends in Deed: An Interview with Bob Keyes

Bob Keyes and Martin Baker

I want to tell stories that convey personality and place. I like writing about artists, writers and performers who take risks with their work and are persistent in their passions. I’m curious about their motivations, inspirations and dreams.

— Bob Keyes

Fran and I recently had the pleasure to meet with award-winning arts writer and storyteller Bob Keyes when he interviewed us for the Maine Sunday Telegram. Given the distances involved we held the interview online using Skype. Bob and Fran were in Portland, Maine; I was three thousand miles away in Newcastle upon Tyne, England. The set-up was perfectly in keeping with the international nature of my friendship with Fran and our key message that no one is too far away to be cared for or to care. It was a novelty for Bob, though; he said it was the first time he had interviewed anyone this way.

We talked about how Fran and I first met, how we “do” our international, mutually supportive friendship, and our work in the mental health community including our two books High Tide, Low Tide: The Caring Friend’s Guide to Bipolar Disorder and No One is Too Far Away: Notes from a Transatlantic Friendship.

A couple of weeks later we had a photo shoot with photojournalist Derek Davis. I was visiting our friend Aimee Wilson at the time. Aimee has been interviewed many times here in the UK about her lived experience and her hugely successful mental health blog I’m NOT Disordered. She was delighted for us and fascinated to be involved behind the scenes.

It was a lot of fun pretending to have a regular Skype call with Fran, with Aimee off camera at my end with her cat Emmy and rabbit Pixie (which wasn’t at all distracting, honest!) and Derek moving around Fran’s room to capture her talking to me on her laptop.

It’s fair to say Fran and I were both excited — and a little nervous — as publication day drew nearer. How would the photos come out? What would the title be? Did we cover everything we wanted to? We needn’t have worried!

The article was published in both print and online editions of the Maine Sunday Telegram on October 20, 2019, as “Friends in Deed: Overseas confidants co-write books about being a supportive friend.”

You can read the article in full here.

Among many generous comments, this by Tl Adams stands out for us:

What an excellent article! I think you both are extraordinary. An amazing example of what a true friendship is and should be. As others have commented, you both deserve a lot of attention for how you have helped others, like me, in learning about having a good relationship/friendship with someone who struggles with mental illness. You guys are awesome! I hope this article will be seen all over the world. SO many people need to read it and read your books.

We are grateful to Bob, Derek, and the Portland Press Herald / Maine Sunday Telegram for the opportunity to share something of our lives, our friendship, and our message of hope to a new audience. We hope everyone who reads it feels Bob met his aim to write about people “who take risks with their work and are persistent in their passions.”

 


You can find Bob Keyes on his website, Facebook, Twitter, and LinkedIn.

Derek Davis is showcased at the Portland Press Herald. You can find him on Twitter and Instagram.

Aimee Wilson blogs at I’m NOT Disordered. You can also find her on Twitter, Instagram, and YouTube.

 

Wednesday, 16 October 2019

Old Memories and New: A Stroll down Memory Lane

“Out beyond ideas of wrongdoing
and rightdoing there is a field.
I'll meet you there.”

― Rumi

I’m on holiday this week at a cottage in the English Lake District I’ve been visiting for decades.

Each evening rain or shine I walk to the village. It’s a mile each way, give or take, but I can be out a couple of hours. I amble. I stop to watch the sheep, rabbits, and birds. And I think.

Over the years I’ve had many folk with me in my thoughts as I’ve walked the single track road to Great Musgrave. So many that long ago I named it Memory Lane. A very few have joined me on phone or video calls. It’s a joy to share special places with those close in heart if not always in miles.

Not all the memories are easy, but they all get to be here. Memory Lane can be a place of healing too. And there’s always room for more. As a friend said to me the other day, it’s good to make new memories. It can help cleanse us, move us forward. Sometimes it’s just nice to layer new memories on old.

So tonight, once again, I will walk the path I know so well. Maybe I’ll meet you there and we’ll make new memories together.