So this one goes out to my daughter, she inherited these conditions from me and at the age of 19 now is struggling yet determined to forge a life for herself.
Don’t waste time beating yourself up, this illness and other people can do that for you. Your task is to survive as best you can, aim to live happy and free of symptoms as much as possible. It is so easy to blame ourselves, it is our bodies, failing us and so ultimately feels like we are failing ourselves, but no, stop there. Stop that thought. We do not choose this we do not do it too ourselves, we are the victims of a cruel condition and that is hard enough, without fighting and blaming ourselves. Shake the blame away.
No you are not lazy, no you haven’t wished this on yourself, no you can’t help it!
A relapse in symptoms, always brings negative thoughts, it is only natural, we seek to control and minimise the damage, but we can’t
Recently I had my life critically analysed by my 23 year old nephew, he bombarded me with messages telling me how pitiful and stupid I am. After all the time getting to know him, he had missed the point about me and my life.
I am an easy target, my life is small and simple. I do not need to be told how I have failed, how I am surviving yet not thriving and so very far away from any life I imagined for myself. I know all of these things. I wake each day in a grotty old council house on an old estate where I am alien, dependent on state benefits, a lone parent, I see the deprivation first hand, I have made do, made the best of things and even accepted my place, stopped fighting and hoping to get out of this situation. I have stopped blaming myself for my failings I have grieved for the achievements I did not reach, for the life I had in mind. I have said goodbye to all of this, I have let go. My life is as it is, technically, on paper, my failure is clear and yet, life is never that clear cut. Yes all of these negatives are true and yet there is more to my story.
I live a small life, within my means, I may own nothing of great value, no house or car even, but neither do I carry any debt. I have a degree and post degree certificate, passed A-levels and G.C.S.E’s. I have trained and worked in a professional role and been a respectable and giving member of society. I have known a loving relationship, shared responsibility for a home and I have endured despite the end of that relationship and learned to live independently. I have created a life inside of me and given birth. I have parented my child, given her the things a child needs most, Love, time, attention, stability, I have created a loving home, and provided all we needed. For the past 20 years raising my daughter has been my mission, and I have loved being a mother. Being ill and caring for her while she was unable to attend school for years, trapped together in a small and rotting house was harder than hard, knowing I have contaminated her with this disease, was very far from easy to come to terms with. Helping her with treatment and recovery and education and fighting for her rights, all took a toll, but I have done it. I have achieved all of this while battling firstly with an unnamed illness, fighting for diagnosis and later learning to live within the parameters of this illness.
What I don’t need is to be judged for my struggles, ‘don’t kick a dog while it is down’ goes the saying. I am the easiest of targets, but what my nephew failed to understand is that I have judged myself more harshly than any other possibly could, I know my journey and my failure and faced it head on, I have felt the fear, been paralysed by it before putting it aside and getting on. Yes I have failed at some things, never made it to those markers in life that signify success yet am alive anyway and that’s just it, the lesson of the older, we face it all and we still live to face the rest. All his attitude highlights is his own failings, I have faced the darkest darkness and I am still standing and gently now trying to step forward. He has all of this yet to learn and so I forgive him as I forgive myself.
Yes, beating yourself with a stick is pointless, allowing others to beat you is pointless, shame, blame and guilt are all damaging emotions; so don’t allow them to settle in your head. See them, say them, and cast them out. Life is what and how we make it, each and every single day. Happiness is a feeling and a choice, so choose it, as I do. The path is painful and hard if you let it be, free yourself from negative attitudes and celebrate all your achievements, however small they seem.
Keep smiling, Chris.xx
Living With ME 