I must confess, the main purpose of this post is to try to help me make sense of what I'm feeling right now (4am here!) and to process some stuff that seems to be stopping me from gracefully accepting my current circumstances. That said, I hope this post is helpful to others out there who go through similar dark nights where hope feels like it has gone and where the isolation and frustration overwhelms. Also, perhaps it will serve some purpose to those of you who live with, love or know someone with a chronic illness. An insight into that type of life.
I'm told I'm doing very well for someone so new to chronic illness. That I'm moving quickly through the various uncomfortable phases of having to adjust to a new life. To be honest though, I think exactly the opposite. The people I think are doing well are the ones who have managed to survive this existence for so long. It's simply beyond my comprehension how anyone can live this life long-term. I have massive respect for their perseverence and determination.
Tonight is one of those nights where I can find no peace within myself. I can't see past how isolated, lonely and sad I am. How I am living in what almost feels more like a tomb than a home now. I have people who love me and care for me and I am always so thankful for those people. But, even those who are closest to my heart cannot join me in this. Life goes on around me and it can't all stop just because I am no longer able to take part in it. The irony is, given the choice previously, choosing my own company would always be pretty high up the list of preferences. There was always plenty I could occupy my mind with and I never grew bored of myself. Now being alone has become default rather than choice, it kinda stinks.
Thinking about the future is very frightening. If I am sat in the same place, thinking the same thoughts, a year from now - I'm not sure it's a future I want. I don't yet know what has to change (and I acknowledge I am limited by many factors in terms of what I can change) but the status quo cannot be an option for me. How do I manage to keep a relationship together when our daily existences are already so far apart and when I now have so little to offer? How many visitors will I get in 2011? Probably not many. How old will my nephew be before I can be well enough to enjoy some time with him?
The only people I feel connected to right now are others with chronic illnesses. I'm so blessed to have 'met' some amazing people who are fighting similar battles but they are scattered all over the world and I cannot even make it to the end of my street. In a way, it's a further twist of the knife. There are people out there who I can feel accepted by and who are content to just sit with me in my pain but no amount of emails or virtual chats can equate to the physical presence of someone just 'being there'.
And so, for any readers out there who have a loved one in a similar position to me, my advice would be... just be with them. Give them your support, silently if need be, and your full attention. Make them feel less alone in the world. Forget the urge to distract yourself with TV or chores. Just experience their reality with them for a while. I guarantee it will mean the world to them.
This would usually be the point where I would read what I have written and either delete it or apologise for sounding so sorry for myself. I'm not going to do that this time though. Censoring my feelings to protect others cannot be maintained all the time. I'm hurting, i'm lonely, i'm angry, i'm resentful, i'm feeling sorry for myself, i'm hating the concept of fate and i'm afraid for the future. That is my truth tonight.