We Can Adjust The Sails

I’ve never managed to keep a diary.  I’ve owned many, started many, hidden many around my room.  As a youngster, I’d begin each new year with a fresh diary and great intentions to complete it.  The first few entries would be in my neatest handwriting with a sharpened pencil.  But after a few days, the pencil would blunt and the handwriting would became slanted.  Paragraphs about who I fancied and who was mean to me, would be replaced with sentences describing my dinner.  And then they’d stop.  I often wished I had persevered.  I’d love to know what I used to think, what I worried about, what I loved, as a child.

When I first got ill I again started a diary.  Initially we wrongly assumed that my illness would be short-lived, a phase I’d fully recover from.  Therefore I wanted a record of my dramatically changed life.  Initially we wrongly assumed that my illness was caused by stress, and that relaxation would speed my rehabilitation.  Diary writing was encouraged as a way to get out the words that were eating me inside.  I tried many times to write down what I was going through in my beautiful red moleskin book.  But at that stage I was too ill.  Spending 10 minutes writing down my thoughts was hard work.  My head was mashed up, my arms were too weak to hold a pen for very long, and I just wanted to rest all day.  Sentences would stream in my head, but I didn’t have the health to write them down.  Despite wanting and trying to keep a weekly diary about life at that time, I only managed a handful of entries in the two years I was at my most poorly.  I felt enormous guilt that I wasn’t jotting down what I was going through.  However at this point I just wasn’t well enough to- I was in survival mode, and diary writing was too tiring an activity.

Two years after first getting ill, the medicines had slowly strengthened me, so I now had the strength to write again.  I still felt guilt about having not kept a diary, so decided to write about my experiences in retrospect.  I’d experienced some awful situations in the past two years, and as much as I wanted to forget them, I also wanted to remember them.  Being so weak I couldn’t move a muscle, thinking I would die in the next 48 hours, crying with a nurse as neither of us could have children.  And I’d experienced some amazing situations.  Walking across the room after weeks bedridden, taking my first shower alone, sitting in the garden after months inside.  As time passes by, memories fade, emotions neutralise, events don’t seem as dramatic.  I didn’t want to dilute those memories, lessen the impact they had on me.  I wanted to continue to be grateful every single day that I’d got through it, and come out the other side.

But as much as I wanted to have a record of my stories, I was scared to think back.  I worried that remembering the bad times would make me ill again.  It took months to psych myself up and to start writing.. but once I started I couldn’t stop.  I wrote all of my stories down on the computer- thinking back, writing them in retrospect.  I now had the strength and the brain to write for hours, so I did.  I tried to put myself back in those difficult times; the emotions, the thoughts, the events.  Slowly my head was emptied.  After it was done, I was satisfied, relieved and proud that I had finished a job I had been putting off for a long time.  And it was like therapy; by writing down the horror stories, I could move forward.  I no longer thought about what I’d been through.  It was an enormous part of my psychological recovery.

In January 2016, when my health started nosediving again, I decided to try once more to keep a real-time weekly diary.  A record of my personal journal -for my eyes only.  I wanted to keep writing for as long as my health allowed.  Writing a blog on the computer would allow me to edit my mumbling words, type when my arms were too weak to write, and also allow me to share my words with my husband.  In the beginning I had no intention of sharing it outside of my marriage.  I am a private person, and it went against all of my natural instincts to open up and let people know so much detail about my life.  Besides I felt slightly ashamed that I was ill.  I didn’t want to share with the world what was happening to me, to describe how wildly off course my life has gone.  I preferred to keep up the pretence that I was doing ok.  Facebook is full of happy stories of births and children and holidays and fun; very rarely do people share the harder sides of life.  By telling the truth about what was going on, I would be sharing with others that my life wasn’t tally-ho, or going to plan.

Yet there was a niggle inside of me that I had some duty to increase awareness of Pulmonary Hypertension.  It is such a rare disease, that it is only going to be understood more, if the PHers do their bit to talk about it.  I’d been thrown into the world of disease and disability; a world unknown to most.  I felt a responsibility to become an advocate, to help spread the word about my illness and the consequences of living with it.  Therefore I decided to share my first blog.  But only my first one.

I was gobsmacked when people read it, and asked me to share more.  I honestly thought only my Mum and sister would be interested.  Everybody goes through hard times in their life, why would others be interested in the hard time of little me?  Yet I received a lot of support and love and encouragement out of the blue.  And so instead of keeping it private, like I’d intended, I continued to share it.  When people read my words, wrote comments or sent me private messages- it lifted and encouraged me.  It gave me a boost to think that others were rooting for me, wishing me well.  When friends recognised my difficulties and suggested adaptations so I could see them- I felt relief that I didn’t need to explain my needs, and thankful for their understanding.  When PHers said my words resonated with them- I felt less alone.  There are others feeling and experiencing the same things; we’re facing the disease together.  When folks were helped by my words- I felt useful, like I was contributing to life in a small way.  It is easy to feel redundant when illness strips you of your career.  Writing a weekly blog post has become a small job for me, giving me a purpose each week.  And through it all, I’ve discovered I love writing.  I really enjoy cuddling up to Lottie on the sofa, tapping away on my computer.  Some weeks I feel tired and poorly, so struggle to write my words cohesively, taking days to edit a post.  Other times I’m desperate to tell my story, and it flows out of me in an hour.  Moreover, as I discovered previously, writing is wonderful therapy.  It allows me to sort out my thoughts and face my emotions.  After I have emptied my head, I can move on.  Like closing a door.

This week is the one year anniversary of my first blog post.  Fifty two blog posts in fifty two weeks.  Unlike the hardly completed diaries of my youth, I have surprised myself by continuing to tell my story each week.  When I first put pen to paper a year ago, I had no idea of the journey I was about to go on.  I also had no idea of the support and love I was going to receive from family, friends and strangers.  So thank you all.  You have lifted me this past year.