scotiadair

This morning Facebook popped up a memory from four years ago, the year before I got sick. It was a photo I had taken during a long, solo bike tour in the Trossachs. It was just me and my bike, accompanied by the sounds, sensations, and feeling of being me in nature.  I vividly remember my adventure on that particular day, and how my body was capable of propelling myself up the hills, breathing hard, sweating from the exertion, my heart pumping energy around my body. With each pedal stroke I could hear my tyres cross the ground, progressing forward over the many miles I covered that day. I didn't need or want anyone or anything else. I was making my own way, strong and capable, grateful and proud of my ability to be independent where and how I wanted. I thrived off the sensation of feeling every single corner of my body swell full of content, full of my life force. A Trossachs Adventure - June 2013 © When I first got sick, the only piece of helpful advice I ever re

When I am sick, you are probably the first and only person I tell that day. Because what can most people do to help? Not much. And that's a lonely thing.  But you, when I am sick, I want to be able to tell you. To trust you that you can be unwavering in your support of me, your care for me. To trust that you won’t let it scare you, or make you uncomfortable. Because, when I am sick, I need you to ask me how I am feeling. I need you to want to listen to my explanation so that you can learn and understand why this is so hard for me, to open your mind away from the preconceptions and towards an intimate knowledge of what I am going through, to ask me questions about it so you can find out more and piece together the puzzle.  I need you to hear how much of a challenge this gives me. I need you to understand and acknowledge how alone I feel, in this quiet empty house, all by myself, humiliated that I am too sick to take care of myself properly. I need you to understand that I will

So...it's been a year and a half since my last post. I think it's fair to say that I went through a whole process of "dealing with things" during that time. Having come out of it, and gone into a new phase, I feel ready to write again. But, before I get into the things I really need and want to write about now, it's probably a good idea to briefly recap what took place since my last entry.  I left my job - the first one I ever loved - in September 2015, and went on another six months of much needed time-off and sick leave. Having tried to return to work over the summer of 2015, it became clear early on that my employer had no interest in supporting a phased return to work, understanding the requirements of my disability, or indeed treating me like a human being. So, that didn't go anywhere, even though I tried hard to make it work, as I always do. It took some time to recover from the loss of that, but it was a much needed process and, ultimately, a gift tha

For much of my life I’ve struggled with feeling part of a strong group of friends, and have felt like an outsider for much of it. I have a handful of close friends, dispersed around the world, whose friendship never wanes…but we rarely see each other in person, and as a result we don’t share the day-to-day aspects of life with each other. Having moved around and lived in different countries a few times has meant making new friends in every new place. For someone who hates small talk and being ‘friends’ for the sake of being friends, this is not without its challenges. I need a real connection, so friendship has felt hard to come by.   There are some special people out there, you just never know when you’re going to find them. It’s become easier the older I’m getting, truth be told, to find “my” people. Being so seriously ill has helped to unveil to me who my real, steadfast, true friends are. It sounds like a cliché, but it’s true. It's shown me that when people care abou

Apologies for the hiatus in posting; rather a lot has been happening over the last few months requiring all of my energy. I will be writing about it all. Thank you so very much to all of you who have been in touch in the meantime, offering words of encouragement and support, and thank you also for waiting so patiently for my next blog post.   When I was first diagnosed and struggling to come to terms with the sentence of this illness, I never thought I’d be writing about the positive things about becoming ill. I suppose that change in mindset has been exactly that: being so ill can facilitate, or even force, a change in how you think about things, so that the positive and truly important aspects of life become more apparent and visceral, and the unimportant things fall by the wayside, out of immediate focus. Before I was ill, there were many things I worried about on a day to day basis, making me a rather insecure and anxious individual. I worried about other people not th

I'm sitting here with my laptop, trying to figure out what to write, and even where to start. I've been wanting to write something for the last few weeks, to try and formulate how I feel and express the many emotions that have been surfacing. An intensely dark period followed my last post Of determination, dreams and despair . The boundary between being confined by overwhelming illness and the prospect of some improvement is a delicate one. Improvements may appear minor to the outsider - for example being able to get up, take a shower, and make breakfast in one go without becoming breathless, having palpitations, and needing to rest - but for me they are huge.  The trap of overdoing things is still real, because being a 'doing' type of person means I automatically fall into my M.O. of going for it, even after all these months. Nowadays, this could mean getting up, taking a shower, making breakfast, and then something else on top - for example walking to the shop aro