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.

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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!

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!!

A Week of Milestones:

This has been a huge week for me. I know that these milestones are nothing huge for many out there, but for me they mark some steps that I thought I would take forever to reach.

In no particular order I made my 100th post on my Chronic Illness Blog today, I just need one more follower and I will have 50 followers, which I have no idea whether that is great stats or terrible but an average of a couple of posts per new followers can’t be that bad can it? I started (and won) my first NaNo WriMo and have have only 800 odd words left to write to make it to 100 thousand brand new fresh words in three weeks. But more importantly than that, that is one brand new book that I had no idea about last month (77,000 words) and then I’m well into the second brand new book. Mind you, between my dyslexia and autocorrect which hates me with a passion, the editing once this is done is going to be  nightmare! I don’t think anyone is going to see me for years, just trying to get through the editing. But anyway, the fact that I will no doubt never win a NaNo again, this is how it has worked out this year.

I’m super proud of all of that plus my first The Mighty article went out this week and I am sooo excited about being accepted as a contributor. I applied to write for a much smaller publication a few weeks ago and and they turned me down, so I’m feeling a little chuffed that the bigger guys said yes.

I sound as though I am counting but not I’m not really, NaNo counts for me and I have absolutely no idea how many followers or posts I have on this blog, I only know about the other one because it popped up when I turned on my computer, saying congrats on the 100th post.

img_4715So anyway, this post is just a simple brag and babble in between NaNo and life and getting ready for Christmas. I am extremely thankful that we have decided to forego Christmas this year and go away for a couple of weeks of writing instead. Woohoo! Happy writing everyone!

#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.

Is the Choice REALLY mine???

warning: major rant!

Sometimes things in life tick me off. I’m pretty sure that I am not the only person who gets ticked off in life; not much in life is easy or fair, and not that much goes our own way… but that is the reality that we live in, and there is so much beauty in diversity and difference and if we stop and complain about everything that rubs up against us in ways that we don’t like, then we can make ourselves pretty miserable. So I try to not let things get to me, especially in an era where we can skim our social media so easily and filter out anything that we don’t like…

But now and then something comes along and I am a bit like a dog with a bone over, and as I was nodding off to sleep I came across this picture (minus everything in red which I added to it afterwards!! … am I allowed to do that? does that infringe copyright laws?) … and I knew that I would spend the next hour or so stewing over it … so I thought rather get this off my chest instead!

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REALLY????? Is the choice REALLY mine to make? It is bad enough that the world media uses sex to sell everything from women’s things to cars, machinery to sport, and everything else in between (it’s late, I couldn’t come up with better examples sorry!), but if ain’t bad enough that we are told what we have to look like when we are young, now women are being told what they need to look like when they are old?!?!?!?!

Even worse are the photos where they say “What’s your excuse?” (as if I have no excuse!!!)

Let’s call the lady on the left Lefticia, and the lady on the right Rightlyn, just to make it easy, ….and let me make a few things abundantly clear before I go any further: Lefticia is clearly beautiful, hard working, and committed, as well as healthy, is probably pretty determined, and has a whole lot of very admirable work ethics, and other wonderful attributes. Also there is NOTHING wrong with being inspired by women who are able to do all kinds of great things … inspire away … just don’t use it as a guilt trip to others!!!!

Rightlyn on the other hand certainly also looks physically unfit… but that is where it ends for me. The photo on the right comes from only one of two sources: It is either staged (and therefore she could well be older than 74, the lighting used accentuate her wrinkles … blah blah blah…. ) or it is a genuine photo pf someone at 74, who really is like that … and then I have a MASSIVE problem with them using this picture as a comparison: At a very basic level, they are showing Lefticia at her very best, and Rightlyn at her very worst! … I think you get the picture and I don’t want this rant to be about how I struggle with the photo ethically…

The point that I want to make here is more about the WORDING!!!! Let me try and make this somewhat brief:

1: I know 74 year olds who work as hard as Lefticia and are as fit and healthy as her, but at 74 their bodies have suffered the ravages of disease (cancer, polio, etc), serious wounds (including burns, surgery, cuts, accidents etc), had their skin stretched and damaged due to carrying many or few, large or small babies but their skin or abdominal muscles became and remained stretched, scarred, broken …. These ravages and scars tell a thousand tales of misery, torture, triumph, failure, loss, agony, heartache, joy … and no matter what they do, these women DO NOT have a choice, and they will NEVER EVER EVER have a body like this!!!!

2: I know 74 year olds who work as hard as Lefticia and are as fit and healthy as her, but because their genes mean that they are stunted and short, or have tiny rib cages or wide strong ones, they have ligaments and muscles that don’t work properly and are not strong enough to carry their own meal to the table much less enough weights to produce those muscles, who work at physio waaaay more hours than Lefticia has put in to a life time, just so they can FUNCTION, let alone be toned or strong, … and so the list of genetic limitations are endless, that mean that no matter what they do, they DO NOT have a choice, and they will NEVER EVER EVER have a body like this!!!!

3: I know plenty of women half this age who’s bodies have been struck by diseases and illnesses, which mean that they may well look whole, but due to paralysis, EDS, MS, and an almost endless list of other life altering conditions and complications, mean that they will never walk again, or run again, or swim again, or carry their children or grandchildren again, that mean that no matter what they do, they DO NOT have a choice, and they will NEVER EVER EVER have a body like Lefticia’s!!!!

4: I know 72 year olds who worked as hard as Lefticia and are as fit and healthy as her, and even looked somewhat like this (I don’t know many, I have to say, but I do have a couple of family members who have worked VERY hard for this), but they pushed themselves too far, and beyond their limits because of this kind of pressure, that at 72 one snapped an Achilles tendon, could not walk for 6 months, and when they were strong enough their shoulder went and as they recovered from shoulder surgery their knee went and they are now waiting for their first knee replacement and they are not yet 74… they were on track to be Leftictia at 74, but at 73, they are permanently pretty immobile, they DO NOT have a choice, and they will NEVER EVER EVER have a body like this again!!!!

5: On the other hand, I also know plenty of 74 years olds who look a lot like Rightlyn. But those wrinkles have been hard earned! They have never been lazy a day in their lives! Slaving over hot stoves and factory jobs to support children with no help from a husband, putting children through school and sleeping four or five hours a night for over half a century! They started hard work at 17 and at 74 this is what is left!! Through absolutely no fault of their own, they DO NOT have a choice, and they will NEVER EVER EVER have a body like Lefticia!!!! They would not even know where to start, and nor do they want to, they are in dire need of REST REST REST … and for many of them, they might LOOK like that, but they have a right to carry such a burden and look back on a life that almost barely had a chance at anything else, and you want to rub Lefticia in their faces and say why do you not choose this?

6: I also know plenty of 74 years olds who look a lot like Rightlyn…. and they have beautiful smiles when they turn around and look at me, and they are rich beyond belief in all the things that ACTUALLY count! They are loved by many, they are wise, they are strong as an ox !!… Who cares what their hair style, clothes choice or skin looks like? To their friends, and loved ones, even their children, grandchildren, and great grandchildren if they have any, they smell and feel and simply “are” everything that is safe, secure, constant, loyal, sweet, tasty, …. and above all everything that is right about the world! … they have CHOSEN to invest their precious time and energy into the things of the world that make the most difference, they CHOOSE not to be Lefticia and for them and all who are loved by them, it is the best choice!

7: This is an obvious one … who does Mother Theresa look more like? Lefticia or Rightlyn?

Come on world … inspire by all means, but stop giving false hope, false guilt, rubbing loss in people’s faces, forcing some values way above others, … do we REALLY need this?????