Last night I was so hopeful, so sure that at this point today I would be brimming with smiles and happy about just being alive. Well, I am still happy of being alive, but I wish I could find my smile. My optimism was based on waking just before midnight when my body eventually decided it was time to let go of everything it has been hiding and when I returned to bed, I could fully feel everything that was happening inside me again, yet here I am feeling not sorry for myself, but wishing that I could just cancel the rest of today. Right now, I would give anything to be free of pain and sound asleep as I am exhausted and simply flat. I only woke once other after that and that was due to my stupid legs deciding they preferred to hang off the side of the bed, forcing my body into some kind of painful crescent, but once I had managed to find my way to my feet and my heart returned the full blood flow to every inch of me, sleep returned with ease, so I shouldn’t be feeling like this, but I am.

It is so often the way that when we finally reach a goal, that something about the whole thing is just disappointing, in this case, the disappointment factor is easy to find. I am still in as much pain from my diaphragm as I was before, but to add to it, my kidneys are killing me and I feel sick, but it’s not always that black and white. One of the hardest things to deal with throughout our chronic illness is the constant downs, the events, and the stepping stones that could so easily make us just want to give up, curl up and die. I know that many people who read my blog or my posts on Twitter have me down as this incredibly positive person, someone who is always encouraging others, reaching out to inspire and give hope to those who like me are ill. Sorry to disappoint all of you but I am human, not super human. Just like everyone else I get my low days, days when I don’t feel like smiling or looking for the brighter side of anything. The only difference about me from others is so simple, as long as I have known that I can make other smile, that I am making things better for others, I have known I too will feel better. It wasn’t something I understood until I was working as a DJ, but I discovered that it didn’t matter how bad I felt, if I just went to work and I could make people dance or sing or just laugh, I felt better about me. My mother says it was something I started doing before I could even talk, all I wanted was to entertain those around me and make them smile. As I grew, I would put on shows, silly things I made up and clearly thought brilliant as I took them seriously, but if they didn’t laugh at the right point or applaud, I would get upset. Life happened to me and I lost that side of me for a long time, it was being a DJ that brought it back into me fully and I never let go of it again, others being happy mattered more than anything, as then I could be happy.

I suspect without even knowing that I was doing it, that is where much of what I do on Twitter comes from, every retweet I get, is a little boost to me on my bad days. Which in some ways, makes me incredibly selfish, but the truth is we all are and there is nothing we can do about it, we were created the ultimate a parasite and although after birth we learn to not act that way, we still can’t fight completely the “me” feelings we have. It is very tempting when you receive a diagnosis of a lifelong debilitating condition or worse still, are handed the ticking clock set on its countdown to our demise, to ask “why me”, but if ultimately we don’t come back with the only answer possible, “Why not me”, we are set on a path of self pity and a life that has lost its value. I don’t believe that any life has no value, it’s just the person who is living it has to be reminded of what that value is. Different people add value to their lives in different ways, some of us, as I did for many years, counted my value partially by the work that I did. The more and the better the work I produced the more and better I felt, it was something that carried me right through the first half of my time post diagnosis and probably part of the reason why when even being told that I was doing too much, that I needed to slow down, or that I should think about stopping working, that I didn’t. Yes, part of it was due to fear of how we would cope without my income, but it had far more to do with the fear of what I would do if I wasn’t working.

In some ways, I can fully understand why many people once they get the diagnosis of either chronic or terminal illness, just feel like giving up working, but in my opinion, it is the worst thing they can do. I personally would recommend to anyone to work right to the last day of their ability and to push on past that. I was no different in that there were more days that I woke wishing I didn’t have to even try to work, that I would have preferred to just sleep or that the pain was too great to be bothered with working, but by the end of every day, I felt proud of myself that I had managed another day and that I had done everything I could to my fullest. I still believe that if I had at any point from diagnosis to the day before I stopped working that my health would have slumped far faster, just as I believe that keeping myself busy and making others happy, now helps me to live in a way that is far better than I ever expected. There is a very true saying, ” we are a long time dead”, so why waste the life we have to do what is bad for us, why not use it doing what is good and like it or not, work does us all good, no matter how much we wish we didn’t have to. I have been lucky, this has replaced that work value, it doesn’t pay, but it bring satisfaction and structure to my day, something that if you are thinking about giving up work is going to need replacing, if you are going to thrive in any way, mentally or physically.

Today, I am in pain, feeling sorry for myself and just that bit brighter than I was before I started to write or answering the tweets that came in overnight. When I woke, I wanted to cry, I still do, but they are hollow tears, tear for myself and not worth letting out. If they were, believe me they would be pouring down my face right now uncontrollably because that is one of those things that happens thanks to this damned illness. Illness can make us hyper-emotional, especially when it has taken so much pleasure in eating part of your brain, but emotions, true emotions are the one thing it hasn’t taken fully. Our pride in ourselves as people is one of the things that keeps us going, so think carefully about doing anything that could change that. Our happiness, well it’s essential and there are a million things that go towards that happiness, lose it and there is no way back. Sadness and grief also have their place, but they have to be guarded closely, otherwise they take over and the gates to depression are then open. Bad days happen, there are without a doubt many more ahead of me, but as long as I make others smile, my smile isn’t that far behind. We can’t control the physical effects of what is happening to us, but our emotional side has to be controlled, we have to know when to cry, when to feel sad, when to smile and when to feel happy, as they are the things that will ultimately get us through this sorry mess that is our lives. The greatest pleasure for me will always be the one I find in knowing that I can still make a difference, that I can still find that smile, as that is what makes it all still worth it.

Read my blog from 2 years ago today – 2/05/13 – Life happens to us all

I really don’t seem to be getting anywhere fast today, I know I don’t need to be speeding through my day, but it would at least be nice to actually getting somewhere, anywhere rather than round and round on the spot. With the way my health has shifted in the last few months, I am rapidly getting the impression the long desired time to write my book is…..