Late, but still here.

Hi, Today I want to talk to you about something that affects me.  I am embarassed about revealing it to people, since there is such alot of misunderstanding or lack of knowledge, and even bloody minded ignorance about this condition.  I even have difficulty engaging with my own family about it. I am ashamed by my lack of energy and abilities.  I am not the person I used to be, or planned to be. I am a shadow of the woman I  want to be.  And because of that , I tend to hide away, and restrict myself to immediate family.  There are some friends who know a tiny bit of how I feel, but having this condition just appears to so many to be a cop out from living a full life.  I am limited in so many ways, and the need to pace myself is so critical to me being able to function, that it is only those who live with me , who can see the extent of the damage it does.  I have tried to hide it from my children, so that they are not burdened with the idea of a mother who is not capable.  Consequently, they just find me a slightly ridiculous figure, who chooses to live a very restricted lifestyle.  Now they are growing into young men, I have to reveal more of the condition, but I am not comfortable with that. Neither am I comfortable with the fact they think I am pathetic. Can’t win. That is a major frustration with this disabling condition. It is constantly reminding you that it hasn’t gone away,  I can accept the limitations and I try to stay as positive as I can within them, I have many wonderful aspects to my life that I am grateful for daily, but the reality is that whatever I do, unexpectedly symptoms will flare up and once again I feel as though I am walking a living death.  I really hope that the reality of the condition can be seen by people who live with, who work with, and who are friends with sufferers. I don’t want anyones pity, but I do need their compassion. I need to feel that I am not looked down on as being ‘lazy’ because I don’t go out to work, I am fortunate to be cared for and supported by my loving husband. I do wonder how I would manage in the world without him. I do not know how people live, without that level of support, when they have this condition. I still hate being financially  dependant on him though. He is marvellous about it, and wouldn’t have it any other way,  and the only way I can feel valuable is by being as good a wife and mother as I can possibly be.  But not a day goes by when I do not have feelings of inadequacy. I would really like you to watch the links I am posting, as they are short and realistic in their descriptions of the condition, and the more people who improve their understanding, the better.  Thanks for letting me get that off my chest, I so hate sounding like a whinger.


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