A couple of days ago, there was a comment left to one of my posts that I thought summed up for many the emotions of life with chronic illness entirely.

It seems like whether we lose memory of life or lose the abilities of our previous activities and people in our life the common denominator is, a profound sense of loss.

“A profound sense of loss” really is the overriding emotion that I have had from the start to today. Its intensity varies massively, as it is always accompanied by a myriad of other emotions, but when they die back, what is always left every time is “loss”.

When I first read the comment, I sat for a few minutes and desperately sat trying to find something that I could counter it with. I wanted to find something upbeat and genuinely positive that my health had given me because it has, but that’s my life, what I needed was something that I could say with confidence was universal. Try as I might, I couldn’t find it and I didn’t like that. But then I realised that that is the problem with life, when you detach the personal, what is left, means nothing, because all life, able-bodied or disabled, the personal is what makes it tick.

We are emotional creatures and it is our emotions that make life what it is to all of us. Just as writing a plain list of all our symptoms, really says nothing about what it is like to live with our health. If we each wrote an equally plain list of the elements that make up our daily lives, it says nothing, about what it’s like to live that way. So, yes, it’s easy to say that there is a “profound sense of loss”, but there is also so much more, we only feel the loss, when we look for it. I for one, wouldn’t say that “loss” is the overpowering emotion that I feel, when I look at my life now, compared to what my life was like even 20 years ago. Yes, I have lost much, but I have also gained so much as a person as well. Chronic illness is the most amazing journey anyone will ever go on, and I really hate that word “journey”.

I don’t even need to think about this one, as I know totally if the “me” from 20 years ago sat and read this blog from beginning to end, she would recognise herself as the same person at all. Of course, she would recognise the back history I have shared, but without the slightest doubt, the way I look at life and the world has been transformed by my health. It’s hard to pinpoint all the changes, but I know that I have become far more patient and understand about everything. Probably the oddest one, when I think about it, is the fact that I have far more enthusiasm and a greater positivity about life. As I said, on the surface, that just shouldn’t be the way it is, but it is. It is so back to front, but, when you are forced to look at life because you know you’re dying, well, for the first time you truly understand, the wonderful gift you have been given. The biggest change though actually happened long before the doctors stated my personal clock ticking, in fact, it happened not long after I became housebound.

I was still working but from home, and not having to go through all the preparation needed to leave the house, and undoing it all again, on my return, meant I had spare time. I had the time to actually sit and work on my past life and to forgive all the people who had ever hurt me, and most importantly, to forgive myself for the part I had played in it. I had never really had the time to do any of that, and I hadn’t been willing to make the time either. I have written about it before and I can confirm without a doubt that it is one of the best things I ever did. Once you are at peace with your past, you can start living yours, even if it is a housebound one. When they started my countdown with the diagnosis of COPD, well I was even more glad that I had taken that time, as it was one less thing to deal with, as when that clocks started, you have enough to think about without all that pain, getting in the way. Losing your health, losing your friends, losing your job and losing your freedom, is a huge amount of loss, but it’s also a huge amount of gain if you learn from it all. I can see with ease, that many wouldn’t see the point of learning, because you’re never going to have a new friendship or a new job, but if you learn, you grow as a person, you understand more about life.

I have always said that depression is something that we can avoid, but doing so takes a lot of strength and a determination to find the positive in every situation. It also means not dwelling on the huge amount of loss we have in our lives. That forgiveness I found for the major painful events in my life, is a forgiveness that I have now extended to all those losses. By putting myself in the shoes of my friends who left, I understand how it happens and how there is no intent of causing me pain. Understanding each event that brought us to this point in our lives, and by finding the good in every day, even the ones where your health has won, means that there is always good in our lives. Finding our smile, being able to look at that list of what we have lost and say, “I understand, but this is my life now, not then”, is what will get us through all that is still ahead of us.

I wasn’t born positive, but neither was I born negative. I have learned to be who I am and I still have a lot of learning to do. Giving up is when those losses have won.

Please read my blog from 2 years ago today – 18/04/2014 – True control

Last night I found myself sat on the settee in real pain, even though I had only taken my meds about an hour and a half before, I was in a pain that I just wasn’t able to relieve. It started in my left side, about in line with my breast and it felt like someone had shoved a rather large and sharp knife into me and they were happily moving it back and forward between my ribs. Clearly it was a spasm, I am beginning to wonder if I will ever have peace again from my intercostal muscles, it is now over a year from the first time I felt it, but feeling it was something I was having ……