Complaining

Searching tirelessly for email addresses, cutting and pasting the information, adding the ribbon, making sure I make note of who I've contacted, saving everything to the 'Lighting Requests 2014' folder...and on and on it goes.

Yes it's relatively tedious, but again this year there aren't many doing it. Yes, there are more than last year, of which I'm VERY grateful, but I'm curious why more people don't get involved in this aspect of the awareness day.

It is very, very satisfying and fulfilling when a place says yes, and in the UK a few people have really added to our success. However, either places say no, because of money, or they don't support causes, or they have a list of causes that they already support, or they simply don't have the facilities, or they just don't reply.

I appreciate that people don't want their name in the newspaper or they don't want to appear on their local news (that's proven to be the most effective and yet people aren't prepared to do it), but a lighting request is something they really can achieve. As there are many more if us involved in this years campaign, there is a lot more support and I for one, don't feel as stressed or under pressure. The result of several very stressful months really took their toll last year and I was physically and emotionally unwell for quite a few months.

What I really don't understand is this.

Some of us are doing everything we can possibly think of to raise awareness. Talking about and focusing on the actual awareness day is such a positive thing. That's the day we can explain why a nearby landmark is lit up in a glorious teal colour. That's the day we will get the media involved, we will make people listen. And yet, every single day there are people complaining that TN and a Facial Pain Disorders aren't understood or they remain unknown. These people are free to get involved and help raise awareness, or to help educate their local community, hospital, dental practice, chiropractor, etc etc. But instead, they won't do any of those things. They won't donate £5 or $5 or any other amount to support the hard work that's happening by some individuals who want to light up a famous old landmark. In the UK a lot of places don't have the facilities to light up, let alone in a certain colour. Anyway, my point is, that people appear to prefer to complain about the lack of awareness, than to actually help out and show some faith in what we've already achieved.

It is a mentality that I'll never understand. In my attempts to not give a rude response, I tend not to reply if someone in a support group complains about lack of understanding and awareness. My reply would be easy, I'd simply say 'Change it then'!

Who Knew?

After waking up on Monday morning and knowing that I needed to make some serious changes to my life, I've researched and read more on the concept of 'Mindfulness'. I can't pretend that I had heard of it while I was nursing; I can't even say that someone has recommended it to me, because until Monday, Mindfulness wasn't even a word I ever used. I certainly didn't know it was a very well researched and reviewed behavioural technique. I had no idea that it had been written about extensively and that it is used around the world as a therapeutic tool, for improving mental and physical health. However, over the last six months, certainly since I have been feeling increasingly depressed, deep down I knew what I had to do. Well, I mean I was aware that it was my mental approach to my physical pain that was the problem and that I needed the tools to help me find a different way of coping. I also felt (in my own words), that I was looking at it all wrong and that I had to be missing a healthy, holistic coping mechanism that other people obviously knew all about. However, to balance it out and to give you the whole picture, I also thought I'd exhausted everything, from medication, therapy, spiritual healing and all the most widely available complementary therapies. In other words, when I woke up yesterday morning, I believed I had to discover something new. I didn't know there was a whole world of mindfulness out there to explore.

Before I publish this blog entry, I want to make a note to myself. I have chronic, disabling, unrelenting pain. I regularly feel the power of a blowtorch on my face, a highly charged electrical surge across my cheek made worse by the gentlest breeze, the constant grinding ache in my teeth, permanent pressure in my head, eye and temple and a dense burning numbness that often paralyses me, through fear of the slightest change in temperature. This is my existence, my reality, my life. You may feel the description is dramatic, but only I know how horrendous my pain is. I live with this day and night. At the same time, I take a ridiculous cocktail of medications that should knock out a horse, they inflict horrible side effects; short term memory loss, tremors, confusion and drowsiness to name just a few. This is, as well as, the pain. I have to accept that this is my reality. 

However, there would be no point in pursuing the positive, unquestionable benefits of mindfulness if I remain focused on the negatives in my life. But I'm about to put my energy into finding a way of living with this reality and I hope to write about the ups and downs and the challenges I face. It is important to me, that my note to self, gives me something to reflect on in the future, perhaps to see how much progress I've made or to remind myself of where I was, emotionally and physically, today. I have not written this note to myself as a 'get out clause' or an excuse to fail. But I won't belittle my reality and the pain that other people living with TN have, just to write a positive blog entry. Acknowledging how bad things really are will hopefully give a true insight into the real outcome of embracing a new approach of living mindfully. 

Image by Nikki Samuel

Mindfulness

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