Picture from: dragoart.com
I want to say that I am scared, frightened like a child cowering beneath the blankets from the dark.
I take a deep breath but don't exhale and I feel someone is holding onto my legs making it impossible to move. I let out my breath and realize, oh yes my legs are like lead because I have this for the rest of my life. Orthostatic Tremor. Its just a name when I say it but when I feel it, its a burden that I have to carry with me on the rugged climb.
I pretend that I am brave, sometimes I actually believe that I am. I'm not. I am fearful of what OT is doing to my body and I don't want to be brave about what I have lost. I want to cry about what I have lost. I want to be able to lift my baby boy up and cradle him in my arms when he is begging holding onto my legs. I want to cry for his loss too. I want to show my daughter how i used to dance and we could dance together, carefree. I want to cry for her loss. I never want my son to think i am sitting in the audience watching him sing while i am actually missing it because i couldn't stand any longer waiting to be let in. I did cry so incredibly hard for his loss. I have missed my footy stars play their best games because i am too fatigued to get out of bed.
I don't want to be brave, I want to be the Mother I want to be for my babes. I admit it, for these things and more, I am angry. frustrated and sad.
Society doesn't like depressed people who wallow and feel sorry for them selves, so i know i have to switch gears and find things to make those losses easier for all. When I am brave, even others seem to cope better around me. But what can be done? I will forever miss taking a shower standing up, a simple thing but so important when no longer something of ease. I could ramble for days about all the losses my family and i have to face but what good would it do? It is what it is and I have to adapt.
I like to be in control of my life, I don't believe i am a control freak (well maybe ask my husband)but when it comes to planing my future i want to lay it out in my head and have a goal to work towards. Now I have no clue what the future holds since everything i do has to revolve around me being seated. For me, living just for today is depressing since the day goes by so slowly and it is usually very boring. When my hands are effected by tremor i can't do craft things which i like to do to pass the time.
While discussing this i just want to scream "I still want to be active damn it, i am not ready to slow down".
Total denial, i know.......
I must find peace with my illness but really how much resting and relaxing can one person do?
I would just like to add that in my minutes and hours of my day, i fill my mind with information, work wool into bags, reach out to my fellow sufferers and life takes its toll but for each breath i have taken and each breath i continue to take i must remain grateful.