I've been aware lately that I haven't shown the more positive, upbeat side to my personality and of course, you can't force yourself to be that way. If you don't feel it at the time you happen to be on line or when you're inclined to write a status update, then you simply don't feel it! I tend to share the times when my pain is at it's worst, or I feel a failure and I know I also focus on losses quite a lot. I know why I share this side of myself, but other people probably don't. It is often misunderstood as being depressing, needy, dramatic or any other negative explanation. However, I know when I need the support of my friends and I also know that the people in my life, who live with chronic pain, are often the people who understand the way I'm feeling. But today, I woke up, knowing I had to find a new way of coping with my situation. I'd already been thinking about this, so I knew where I was going to search for more information. I looked through some books on Amazon and felt despondent. I kept coming to chapters or essential parts of a guide, that talked about 'being outside', 'at one with nature' or 'sitting on a park bench'. The minute I came to a section about needing to go outside, I thought to myself, 'Nope, that's not the right book for someone with TN'! Then I carried on to the next book.
After looking at several and using Amazons great feature of being able to read a few pages, I began to think that there wasn't a book out there for a 40 something woman, with a disabling condition that for most of the time, prevents her from leaving the house. In fact I wondered about those who are completely bedridden and how those books would impact on them.
I wrote a status update at this point, which I've posted here (yes, it was an epic update, rather like War and Peace)!
'I decided that I needed a new approach to my physical and emotional well being. Let's face it, the current one isn't working and I desperately want a more positive way of looking at my life, rather than it being a little 'hit and miss'. Anyone who truly knows me, will know that I believe I'm blessed and very lucky in some aspects of my life and hopefully, I don't take those people for granted. Mind you, it's easy to fall back into the desperate place of not feeling lucky or blessed, several times a day. So, in my search, I've been looking at books on mindfulness, something that I feel drawn to and I'm grateful that Amazon have this feature where you can read a part of the book. Most are self help, structured, meditations or guides. But, they ALL have at least a chapter or a step that requires you to be outside. OUTSIDE IS THE ENEMY...that's where there are temperature changes and breezes, or winds and hot or cold conditions. Not one of these books was written to help someone chronically unwell/in pain with TN and I'm frustrated by this! Perhaps I need to read these books and write my own version based on conditions where you are unable to go outside on 350+ days of the year! Yes! Perhaps that's what I'll do. I'll get the books, I'll learn and I'll use it for my own health and as research too. Because I need to feel better about my life and the only person who can make me reach that place, is me! — feeling determined'.
I had an amazing response! In fact I think the people that took the time to comment really understood what I was feeling and I had some of the kindest, most supportive, generous comments I've ever had. That lifted me, not that I was feeling particularly low, but to read those words of support would lift anyone, no matter what their mood. Plus, the suggestions and advice I received was PERFECT!
What I realise now are 2 things. The first is that I don't need to write a book, I need to adapt my way of thinking when I'm reading certain text that I feel doesn't apply to me. The outdoors IS somewhere I can go...as often as I like...in my mind. I can turn that negative chapter into a positive one that does apply to me and life with TN. The other thing I realised, is that I have a lot of people in my virtual world, who truly care about me. It's those people who I'm often reaching out to when I post about my pain or my disappointments in life. What I find interesting, is that nobody from my direct family ever comment or like my status updates, but I believe that says more about them and their inability to say something thoughtful. If my 'relatives' post something on Facebook, I always comment, but I think they scroll on by and just ignore the black sheep :) So, the other thing I actually realised was that my friends within my world get me through the toughest times, but they also share the best times too.
I've now bought two books, with more added to my 'Wish List'! The books I chose are:
Living Well With Pain And Illness: Using mindfulness to free yourself from suffering: The Mindful Way to Free Yourself from Suffering by Vidyamala Burch.
How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard.
Both of these books are about Mindfulness, a technique, much like Cognitive Behavioural Therapy where you follow meditation and the power of the mind to view life in an open, optimistic way, rather than seeing closed doors everywhere you turn. I describe it that way, because that's how I often view my life and it was certainly my reaction to the chapters in the books that talk about getting outside - obstacles, closed doors, whatever you want to call them. There is a lot more to it than this, but hopefully the lessons I learn will become blog posts of the future.
I've done some CBT with a therapist and with her particular techniques I got as far as I felt I could go. I am usually a positive person, but lately I've been filled with despair; life and the future feel hopeless. That's not great for someone who often says, 'Hope is my middle name'! I think I'm ready to face some of these demons and challenge myself on the limitations of my life. I certainly don't expect miracles, but tiny steps and the chance to let go of being terrified of where I've found myself and work towards making that a better place, not just for me, but for my loved ones too.
Image by Nikki Samuel
