I have spent the week considering 'how' I feel about my diagnosis and the impact it has on my life. The important aspect of this was to be aware of my emotions. When I thought about it, I visualised it as a 'box' a bit of a Pandora's box I suppose. I was aware that it was there, but avoided looking at it or thinking about it. It has taken me sometime to consider what feelings there are in 'the box'.
I have created the visual - although I am definitely no artist, and used that to build some words around my feelings and why I feel that way. I wanted to share it because it makes it 'out there' and no longer the secret that I am embarrassed by.
The box is surrounded by a grey fog - a smog that gives me an overwhelming sense of sadness. I have felt this so many times and turned away - put the box back on the shelf out of reach because it is too painful to get too near to. To be close contact gives me a sense of an avalanche of tears. Each tear has a range of emotions within then. ANGER - at the condition and the effects of it; my constant pain, fatigue and the unpredictable nature of the the many other aspects of the condition. I feel BITTER; why me? I want to pretend that it doesn't exist and I will recover, I want to believe that it will not stay with me for ever . . . but it makes me angry and unhappy that I feel angry and bitter,and fatigued and in pain and the myriad of other debilitating features that rise and fall like the waves that come to drown me. I feel frightened. I feel broken hearted a feeling that I can only recall when my Dad died. My life is gone, my aspirations dashed, my future uncertain, my hopes lie on the floor dormant; I don't know if I will ever be able to pick them up, the limitations of the condition have robbed me of the things I can see, I can smell, and cannot touch. The feel that my hopes are behind a glass screen created by the pain, fatigue and debilitating, yet invisible effects of FMS. I feel resentful towards others, who I percieve to be abusing their bodies when I have never indulged in recreational drugs or excesses of alcohol, I have exercised and been a caring giving person try to eat healthily and be a good person in the community. I envy others without the condition, when they are out running, I only wish I could do that to, when my friends talk about getting fit by cycling and I wish I could be doing that too. I envy others who feel refreshed by sleep.
I am disappointed with the life I have, I know that I am grateful for many things, yet disappointed that it isn't the life I pictured for myself at my age. It is the inner turmoil and anguish caused by the unpredictability and turbulent nature of FMS that takes away the strength that I have and resolve to keep FMS from taking over my life. This leads to frustration and ambition for denial. I am anxious about my future, how long can I keep on with work for? How long can I sustain it, and provide for my teenage daughter. Without work, as I have done all my life, what is my status in the world. Will I be insignificant to my friends and family, will I be considered 'one of those layabouts' who don't even try to find work? After all, I look okay! I feel selfish, when I say no, mostly to my daughter, when I tell her I can't manage to run her about or when I need to stop and rest. I feel guilty, that her teenage memories will be made up of a life with a Mum (as I am a single parent) who is always tired, feels physical pain when she hugs me, too grumpy and fractious to tolerate the teenage tantrums. What kind of memories will she have of growing up?
All I aspire to have now is inner peace, these emotions are a barrier to that inner peace. I desire, a freedom to do what I want, when I want, how I want - but find that desire to be across the chasm of pacing.