I remember the first Christmas Phil spent with my family. Mere hours after our arrival, he disappeared. I found him lying on my childhood bed, in silence, eyes staring at the ceiling. He needed a break from us. From the noise and over-excitement and frenzied activity. I recall being puzzled… why couldn’t he cope in my lively and loud home? But he wasn’t used to it. So for the remainder of that week, he disappeared for a time out at some point every day. It was only when I developed Pulmonary Hypertension, many years later, that I finally understood. Christmas in my childhood home is a feast for the senses. 
Christmas with my family is fabulous fun. The best. But it is also lively and loud, busy and bustling. There is never a peaceful moment. In my life before PH I thrived on this environment. I was brought up in a busy household constantly surrounded by little ones (my Mum was a childminder). I was so used to the noise and commotion, I could easily sleep on the sofa whilst youngsters bashed me with cushions. Later I relished the busyness of living with many friends at university. And my chosen career was the epitome of lively. I spent every day surrounded by thirty excitable children, who all needed to tell me something at the same time! I thrived on those energetic and loud and bustling environments. But all that changed when I got Pulmonary Hypertension. 
Overnight my senses became hyper-reactive. Literally overnight. My brain became super vigilant, super watchful, super sharp. My senses were on high alert so I noticed everything. My brain had lost its ability to ignore insignificant background activity. And all stimuli seemed more extreme than normal. Every noise deafened me, every smell choked me, every light disorientated me, every movement was too quick for me. It was overwhelming. It was all too much. I felt like I was slowly drowning under the enormous volume of information bombarding my brain.
Everyone spoke too quickly. Their words wouldn’t register, and I’d have to repeat them in my head to process their meaning. The noise of the washing machine was too loud. It physically thumped and vibrated inside my skull. Outside there were too many things moving. My eyes would dart around noticing every branch swaying, cat strolling, cloud gliding.
And it was exhausting. Processing and understanding and analysing each sensory input used energy. Every sound or movement or smell drained energy. My body needed more coins than I had, to cope with the continuous sensory assault. I could feel myself getting weaker and weaker, the longer I was exposed to talking or TV or lights. So I needed silence. For hours every day. It was the only way I could cope without feeling ill, without getting more tired. No TV, no radio, no music. Limited conversation, limited visitors, limited activity around me. For a few weeks the world was too busy, too stimulating, too quick, too loud, too bright for me to live in. Scary. I remember wondering if I’d ever be able to cope in normal society again.
But I did. I got through those initial confusing and frightening weeks. I gradually exposed myself to more stimuli, for longer periods. Five minutes of reading, then ten minutes, then fifteen. I remember the first time I watched a film all the way through (Pride and Prejudice- three months later). I remember the first time I went into a supermarket (Tesco- one year later). Gradually I was able to cope with people and noise and smells and movement. Gradually my body remembered not to process everything in the environment. Gradually everything seemed less intense. Gradually I was no longer going through a complete sensory overload whenever I left the security of my home.
And although I have made tremendous leaps and bounds, even now my body can only survive in a loud or busy environment for short periods. An hour maybe. After a while, my senses heighten, everything seems more extreme, I feel wired. And it drains me as my brain processes the sensory bombardment. Just being around noise is tiring, doing nothing surrounded by movement is overwhelming, sitting quietly amongst chatting people is hard work. Consequently, I control my exposure to stimulation… I set timers to restrict my laptop work, limit my daily TV, clock watch when I’m on Facebook. And I regularly take time out from my day to sit in peace, to meditate, to calm my senses.
So since I’ve developed PH, Christmas is hard work for me. Just being amongst the lights and songs and excitement, in that overly-stimulating environment, is taxing. Even if I just sit and observe, don’t talk or lift a finger… it will tire me regardless, and use some of my limited energy coins. For me, Christmas is the most difficult time to have PH. It requires intense amounts of energy over prolonged periods… way more than my body has. My heart wants to join in with everything, but my head knows I have to be selective and only attend the best bits. Therefore, although my family gathered at the childhood home a full week before the 25th, although I was desperate to join them, although I longed to be part of the build up… I made the difficult decision to remain at home until Christmas Eve. I chose to save my energy for the big day, knowing the moment I entered the excitable household, my health and stamina would slowly dwindle.
I had a wonderful Christmas. So happy. We laughed and squealed and loved each other’s company. There were stocking presents and Santa pile presents and presents under the tree. Then there was Lego to be built, remote controlled minions to be driven and a super pottery wheel to be spun (yep, we tried out all the boys’ new toys!). We cooked the enormous dinner between us- I was the boss with my timings chart! Turkey and beef, salmon and cheese…and the roast potatoes were perfect (so no family argument!). We gobbled chocolates, drank wine (non-alcoholic for me) and pulled crackers. We told jokes, wore head-boppers, and later watched sleepy films. Amazingly, we successfully introduced the boys to Charades and Pictionary (Jacob changed his given clues to all space related words 😛 ). And on Boxing Day we had a board games marathon- my first Christmas game session since diagnosis. Yay! I loved it all!
I lasted 56 hours! Unbelievable! I joined in and used far more energy than on any Christmas previous. I was gobsmacked and so thankful to my wonderful body for coping. Although the nausea and weakness started as soon as we left, although I spent the next three days barely moving off the sofa… I still had a smile on my face. I’d had a wonderful Christmas. By following my head, I’d had enough energy on Christmas day itself to truly enjoy it. And that was the most important part of the festival for me.
This year when Phil escaped to my room to take a break from the bustling activity, I understood. And I joined him in his time-out! We sat in silence to calm our overstimulated senses… before returning to the party.
We Can Adjust The Sails 