Five Pillow Day!

Two of his pet hates are cushions and pillows.

Two of my favourite things are cushions and pillows.

I always thought of them as somewhat decorative but mostly functional. He thinks they’re just stupid.

Along with the first vague understandings of my health issues came the realisation that pillows and cushions do more than provide comfort for me. They prop me up and support me.

Then over the next couple of years I worked out that I only need one or two (in each place I sit) but on really bad days, I need up to five.

Today is one such day. One on the left, another on my right, two behind me, and one between my knees. Nothing is able to hold itself in position and even my left hand rests in a pillow as I alternately type and drink tea with my right. The tea cup is placed in exactly the right position so there’s no twisting. For refills I need to ask for help.

Yesterday we had a huge chat as we discussed the ins and outs of the unpacking processes and how much better it’s been made by having a slow, staggered help and this little flat to crash at through the process. The old me would’ve sent him off to ride or paddle or work… it’s “easier” to do it on my own. But I’m physically in worse shape than I’ve ever been, and we have no choice. We feel like a pair of naughty children sent to our room, not able to come out without the cooperation of the other.

Three hours a day (and three hours only), we drive the two minutes down the road to the apartment, park Molly in her garage underground, and together we attack a handful of boxes.

I can’t do it without him. I can unpack boxes he brings to my chair, and I can direct what goes where and which box to unpack. But he can’t do it without me either. He’s never done it before, it’s completely overwhelming for him and his anxiety skyrockets. And when his anxiety levels are high he doesn’t listen too well. So I have to be patient and kind and gentle and ask (not tell).

We’re both super happy with the progress and with ourselves and each other. We’re nailing this in more ways than one.

But as each day moves into the next, I’m becoming more and more exhausted. There was a time that I could unpack a hundred boxes on my own, move the piano into place, and get rid of all the rubbish by the time he got home from work… five days in a row.

But not any more. Now the three hours are all I can do, and it’s three painfully slow and frustrating hours at that. I can ride a recumbent bicycle for three hours straight, but sitting in a camping chair giving orders and bending over open boxes and opening packages within those boxes is a whole different ball game and the pain sets in quickly, …. followed right behind by the brain fog. Then I can’t string more than a few words together.

It’s difficult explain. I say door instead of window, left instead of right, clothes instead chair… and more often than not I can’t find the word at all…

It’s frustrating for both of us. We might need a day off tomorrow? Or maybe even two days?

Today is day five of the unpack. The kitchen arrived just as we were leaving…

I’m assuming it’ll be installed over the next few days. If I can’t string more than a few words together and my pain levels are through the roof, then it’s a five pillow day… and time for a rest.

PS: Thanks so much to those who’ve signed on the easy, no-spam newsletters I send out no more often than monthly (and believe me, I miss sending half of those)!

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The Pino Outcome:

I love this photo!! I look so normal! But here’s what it doesn’t show:

  • That I couldn’t walk at all! We’d ridden for over an hour. My leg muscles are amazingly strong considering how little work they get to do in real life. But it was lunch time so we stopped for a break, he helped me get off, and that was it… In the photo I’m sitting on the side of the bike because I couldn’t go any further. Yet I was able to get back on again (with help) and ride another hour!
  • The photo also hides my sore face. I smashed my face a few days ago and have a fat lip etc.
  • This is ALL I did yesterday. He let me sleep in as long as possible and got ready for the day without me. He woke me late morning in time to eat then we drove to the Pino, we rode, then I barely made it back to camp again for a shower and bed. I was in bed again by 4pm and didn’t even have the energy to read.

So…. don’t confuse my ability to ride with my ability to walk, and don’t forget this took all a day’s energy to do and there was nothing left.

Now we’re in the process of trying to buy one. This is a game changer for me and in a completely different way, a game changer for him. It’s my only option for keeping strong right now. It could take months to get one, but we’re praying hard for another Pino Miracle and that we’ll have one well before the end of the year! So watch this space!

(In the mean time, it’s back to a few short metres of heavy crutch walking a day and that’s it… it’s very difficult to be given such freedom then having it taken away!

Gent EDS Conference!

They forget (in love) that I can’t walk at all with out my crutches and even then it’s for no more than about 20 minutes at a time. And twenty minutes of agony at that!I’m in bed almost ALL the rest of the time even for many meals.

The last two days we diverted our rough plan and drove to Belgium so that I could attend the EDS conference in Gent/Ghent yesterday. I’m soooo glad I went, I met so many amazing people including some of the world’s leading specialists in #TMJ #Pain and many other things. 12 speakers in all, over nine hours, was beyond exhausting but so so worth it!

Highlights for me were:

  • Meeting another EDSers for the first time EVER (other than my own children).
  • Chatting in real life with so many of them (there were about 50 at the conference I’d say?)
  • Being in a room where splints, wheelchairs, braces, zebra stripes and bandages are the norm.
  • Hearing specialists and doctors talk about EDS from decades of experience…
  • SOOOOO much validation it’s incredible and difficult to put into words.
  • Crying (sobbing) because the collective pain levels in the room must have been through the roof! And it wasn’t just from me!

Best of all:

  • Meeting Dr Helen Cohen, one of the world’s top pain doctors! I spent about half an hour with her and I don’t think I’ve ever been so in awe of another human being !! She was soooo good, told me I’ve nailed my own pain strategies and I can’t tell you how encouraging that was.
  • Learning so many new teeny tiny things (& a couple of big things) to tweak my life for the better!!

It was all a HUGE reminder that:

  • My new book is soooo needed and important!
  • That I need to get better at reminding those who love me how crippled I am! I’ve been getting lots of encouraging messages lately saying people hope I’m enjoying walking around Europe and having a wonderful time. They forget (in love) that I can’t walk at all with out my crutches and even then it’s for no more than about 20 minutes at a time. And twenty minutes of agony at that!I’m in bed almost ALL the rest of the time even for many meals. No, this trip isn’t making it worse, I’d be in bed at home or in Molly’s bed but at least the scenery changes 😊

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PS: Thanks so much to those who’ve offered to support and keep asking where and how! I’ll keep these links at the bottom of my posts for the next month 🙂 They’re the easy, no-spam emails I’ll send out no more than weekly (and believe me, I miss sending half of those) till the book launches and you can get your free copy!

Hare & Tortoise

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@JPeaSmith

My First Facebook Live!

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It was short, it was bad, but it was my first Facebook Live and I am now ready to roll! Click on that link and you can watch, not just to laugh at me, but more importantly, at the end it allows you to sign on for notifications of my upcoming Facebook Live events so you won’t miss them. It is also one of the better places to leave questions (in the comments) for the upcoming Q&As…

I have two dates lined up, (not on writing this month), but on Ehlers-Danlos Syndrome (May is EDS Awareness month!) and the second is the link between anxiety and chronic illness (and my book of course). So if you follow and “like” my Facebook Page, these should pop up in your newsfeed.
 
The other place to post your questions for the upcoming Q&As is in the comments below here 🙂
I will be going Live most Mondays at the following time, and here are the next two (topics as well as where to find them).
 
  • “EDS Awareness”, Facebook Live Q&A next Monday, May 1st here on my Facebooks Page at this time:   PST 11am – EST 2pm – London 7pm – Johannesburg 8pm
 
  • “Chronic Illness and Anxiety”, the Monday after (May 8th) on The Mighty Facebook Page at this time:  PST 12am – EST 3pm – London 8pm – Johannesburg 9pm
 
See you there!

 

To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer: 

@JPeaSmith

Why I stopped writing my Memoir to Share my Anxiety Story

For most of 2016, I had no choice but to spend every waking hour adjusting to my new normal after losing most of my mobility due to complications with my Ehlers-Danlos Syndrome. It was certainly nothing like what I had planned for the year and at first, I thought that life as I had known it was gone forever. In many ways I was right, it was gone forever, but it also opened the door to a part of me that I had always known was in there but never had the time, courage or circumstance to bring out. Hours upon hours every day in bed gave me the unique opportunity to start to write, and I soon found my voice and my space to tell my story.

A very long and complicated story that is going to take a while to take apart and put back together again into chunks that make great books which are easy for people to read and get something out of. After ten months of hard and often emotionally painful work, I had written enough for two full-length novels (which I hope will come out this year some time). But when I got to the part where I talked about the thread of anxiety and panic attacks that had run through a decade or more of my journey, I stopped there.

When I sit down to write every day I generally let my fingers and my soul tell the story for me and I look forward to seeing what comes out. I had got the anxiety bits out in a few days of hard writing but in the week or so that followed and I sat down to write each day, my soul and my fingers stayed on topic and never moved from it. They kept going back and back to the anxiety and panic, and I realized then that I was supposed to stop there for a reason. When you live in a story day to day, week, month and year to year, it is so easy to get lost in the bigger picture and to forget how hard we worked or how much we achieved.

I had battled hard with anxiety and it very nearly consumed me completely. As anxiety and panic attacks merged with some of the serious side effects of my as yet undiagnosed genetic condition, the cocktail of symptoms from both made it even harder to separate them. Serious issues were chalked up to anxiety and dismissed, while some of the scarier effects of the anxiety were wrongly treated as life or death situations. The whole mess created even more fear and confusion which of course only fed the anxiety.

My journey through so many failed attempts to solve my anxiety as well as my medical issues was a long and painful one which ultimately led me to break point, where I literally landed up on the floor of the church foyer across the road begging for help. Thankfully the poor stunned receptionist who had no idea what to do with me remembered that a trauma counselor was on call and phoned him immediately.

Next door to the church was a library and between the kind advice from the retired counselor and the medical books on the shelves, over the next four months, I began to put all the pieces of information together that I needed to turn this all around. And in the end, I eventually did. I won! I beat my anxiety permanently.

I realized two things as I was writing all this; that I don’t want everyone to have to buy my novels in order to get what may help them with their own anxiety, and that the anxiety thread is way too important to squash into a single chapter among dozens of other things. And so was born the idea of a short (less than an hour) book that tells the stripped down version of how I beat my anxiety and the tools needed to replicate it.

And so was born the idea of a short (less than an hour) book that tells the stripped down version of how I beat my anxiety and the tools needed to replicate my success. I am still going to tell all the other stories, but until then, The Lion and the Peacock – How I Conquered Anxiety, will be available on Amazon Kindle from the 8th of January 2017. You can sign up here to get an email as soon as it is out as well as when it will be out in paperback, and other exciting news:

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Book “It’s Mah Eeds”

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It’s official, I have now finished draft one of book one in the four book series…. “It’s Mah Eeds” will hopefully be out by this time next year.

Huge Thanks to NaNoWriMo for helping to make this happen … I was hoping to do 60 thousand words by the end of November but I hit just over a hundred thousand (which includes about 30thousand words of book 3) … (book 2 is already done, just waiting for book one).

Now starts the editing part, which I am guessing will be done by Feb some time. My January is booked up with loads of wedding prep so I’m aiming at editing this baby by the end of this year, but if not it will likely be Feb some time…

img_8760If you would like to be on the mailing list for updates no more often than monthly, then just comment your email address below and I will add you, or email me on jenniferpeacocksmith@gmail.com

Thanks so much for your support already and I look forward to the next leg of the journey!!

#NaNoWriMo2016 Day 8:

I know that it’s not for every writer, every year, but I am loving this NaNoWriMo business and I am thankful that my story is just flying out of me. It is just working for me in the here and now. I also love the style of writing that I have chosen for this book which is not something that I am hugely familiar with.

Basically a few months ago I was asked to write a chapter for a book that was going to be published next year. They only needed a single chapter from me, a single piece of my story without any need for context, characters or details that would complicate things. They just wanted my experience in it’s most raw form. As is (or as it was).

This was a new way of writing for me, but it really opened something up in me as I was able to ignore everything but the experience itself without having to explain anything. I wrote in the first person for the first time ever which is very differently to how I usually write. I was so chuffed with the outcome and I am very proud of it, but before I could send it in the project was cancelled. I was so disappointed as it was a fabulous opportunity for me to get my work and my name out there and it would have been my first published work. But at the same time I was pleased that I hadn’t already sent it in so that someone else had it and without a book!

So as I was pondering on how to find another similar project as it was so specific, it dawned on me that I could actually write a whole series of similar stories about my journey with my condition. Instead of expelling a whole bunch of details and a long boring story, I could simply write it as a series of essays that take the reader deep into my experiences on my journey. It doesn’t really matter who was there and who wasn’t. It doesn’t matter how the medical system of the time worked or why we were in the particular country that we were at the time.

All that matters really is how I felt and what I went through. I could list all the things that happened to me or I can write a much shorter list and go much deeper into those experience. I can take the reader deep into my most significant and interesting experiences so that they know how I felt and how scary it was for me.

My condition is multifaceted and the way that I was often treated varied massively from those specialists and doctors who tried to leave no stone unturned, those who apparently just couldn’t be bothered and to the other end of the scale where they were not only neglectful but on occasion abusive and took advantage of me.

Screen Shot 2016-07-11 at 8.04.50 PMI love the saying that “Writing is easy, all you do is sit down at the typewriter and bleed!” There is so much meaning in that for me. It shows how costly writing is emotionally and that it is actually really hard. But what I find harder is to sit down and write something about which I know nothing. I find that if I sit down and spill my guts and tell my own story, it just pours out of me. The writing is the easy bit, but it hurts my heart and soul.