I have a terrible weekend. I am in excruciating pain and the boys are here. On Friday I walk out of the house. I sit in the park wondering what the point of my life is whilst it escapes me that there are two little boys and a man only yards away who want and need me.
I cry openly. The park is empty. I cannot hear the birdsong through the noise in my head. Do I really hate my life or just the pain? I know I should really tell someone but who? I do not want to be here, I feel restricted, constricted and trapped in the monthly cycle of a macabre merry-go-round. Each month the same or worse than the last. I think about dying. It is the only way to make it stop.
The following day I take strong meds one after the other and cannot shake the pain. I lie with a hot water bottle between my legs or on my right hip as the pain radiates down. Irritated I moan and criticise others, angry with myself and lack of mobility. I hide in the cupboard under the stairs and hold my breath whilst clenching my teeth. I stay there eyes closed, tears streaming down my face, standing very still in the dark, until the pain of my bladder filling up forces me to the bathroom. I scream as I pass urine. I take more strong pain killers before I fall asleep, the morphine flooding my system. The day passes me by.
On Sunday I wake up howling in pain, I cannot get up. Michelangelo has to help me to sit up. I weep quietly as the boys are asleep. I shuffle across to the bathroom as pills are popped out of their packet. He cannot find the strong dose so I end up spaced out on a double dose of the wrong ones, having nightmares, screaming for help and sobbing into my pillow a few hours later. I wake up and pour a glass of wine for breakfast. I drink through the day and keep on with the strong meds.
I do not want this life. I think about a knife that lives downstairs. If I accidentally fell onto it, well, it would be an accident.
In the morning I do not want the boys to leave me but I say nothing, I make them breakfast and wave everybody off, wishing them a lovely day. The weekend is over. I am alone. Alone with my pain.
I message Helen. She messages back. I think about why I feel so bad but I’m in another place, another headspace. She knows me, she understands and asks me questions to help me. An hour or two later I am feeling more positive. Helen tells me to take back control and not let pain be the trigger point of a downward spiral as we know each month it will happen. She tells me to regain control by refocusing and asks me to make a list of new goals. We discuss ways I could be more open with Michelangelo and my family. We discuss how alone I feel having an invisible illness, living miles from my friends and family and not seeing my coworkers. We agree that loneliness is the trigger; the pain is isolating but something many others experience.
My the end of the emergency session I have made a list. i join a group, download an app and reach out to people I have not spoken to in years.
A few days later the pain disappears as it always does but I have changed my habits dramatically. The group is great, the app keeps me busy and I even attempted to exercise. Michelangelo loves that I push myself to be better. His support and that of my family is everything.
Last night, on a very serious note, I ask him to change our schedule and I ask him refrain from having the boys at this point in my cycle. This is something I need him to do for me, for us. I am not sure he agrees but I need him to support me whilst I experience this terrible pain so he can help me through, we cannot do it whilst I look after others, I need someone to look after me.
~ My deepest and most heartfelt gratitude to my therapist and my family for supporting me through this painful chapter of my life. I am twenty two years with anomalous growths and pains and it may be many more years before it ends; but, I will not fear it. I will live happily, positively and with Love Always Xx ~