Having no family and no carer, I have massive loneliness attack time to time. Just like symptoms of the illness, degree and cause of loneliness changes by time and by days.
If I have to pin point the “biggest thing” at this moment, it would be being left alone in this world. It can also be my fear. I’m afraid this may not be relevant to her question, but I will write about it anyway.
I feel lonely when I see evidences that the sign of my existence in this world is disappearing.
I used to be a practising accountant. To improve my life and to become someone I can be proud of, I worked hard, sacrificed a lot and struggled emotionally and physically to achieve my goals. I was undertaking post graduate equivalent study to become a CPA, I once had a title “Client Service Manager”, I trained and looked after my team, and worked long hours to help small business operators. People appreciated my supports and wanted to get to know me. Small business operators talked about me as the accountant they could rely on and who understands them.
I lost my long battle against this illness. It was a lousy battle. All things I tried hard to help others are insignificant and not relevant now. I witnessed people moved on and continued advancing their careers and lives.
I am scared when I recognise signs of my existence in this world and my contributions to societies are fading away. I feel so lonely to be left in this dark place alone, to see other people walked away from me, and to see that I am completely forgotten.
I passed the period of intense grief. Most of the times, I accept this is my life now. However, I am still hoping.
Hope is my only solution to the loneliness. I hope that one day there will be a cure and I can somehow repossess the life I had. Or, I hope that one day I could get better and become one of 2% people who recovered from severer stage of ME/CFS. Or, I hope that I could find something that gives me sufficient income and opportunity to contribute to society and community again. Then, people will see me again.
There was time when I could not hope. These days, I can not live without hoping. Because I can hope now, I guess my life is not so bad after all.