Being diagnosed with interstial cystitis (IC) in 2004 should have prepared me for my future, but now with a new diagnosis of chronic fatigue immune difficiency syndrom (CFIDS) my life has begun to spin out of control.
My friends and family appear to be having difficulity accepting that I am now even "sicker" than before, more difficulity than me to be honest. The daily frustrations are mounting. I am trying the daily dance of working full-time, managing a house (where fortunately everyone is an adult -in theory at least), helping to care for my disabled mother and learning my limits.
Everyone talks about pacing - I ask you - seriously, how do you pace this life?
My symptoms began in early October 2009, and I was diagnosed in March 2010 after having numerous tests etc. to rule out other causes. I am apparently in a fast decline it appears, this blog will document this road I find myself on now, and the decisions I am sure I will be faced to make.
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OMG! Sorry to read all of that. I was only Diagnosed last November and all, in fact any of what you are doing in your day would be utterly immpossible to me. Obviously there are people that will read your blog who are far more experienced than I am with this but, I have to say unless you really want to crash badly then you need to STOP doing all that stuff and let your body rest. I pushed myself after I already knew I was sick last year and I pretty much woke up one day and could not walk or do anything. I spent weeks in hospital and have braely been able to leave my home since. I am now able to walk for 3 minutes and then I am done. I cannot shower everyday because it's just to much physical activity. PLEASE BE CAREFUL and listen to your body!!! REST and try to pass some of your responsibilities on to others!!
ReplyDeleteLee Lee-
ReplyDeleteThank you so much for commenting. I know you are absolutely correct. I have been pushing far too hard, and am seeing the effects already.
Lee Lee -
ReplyDeleteI also wanted to say, I am so very sorry that you have such a decline in health. I read stories like yours often, and truly appreciate you taking the time and energy to give me such good advice.