I have a functional capacity test tomorrow. It's 2 1/2 hours long. If I'm on my feet for more than 10 minutes I start having trouble walking and have to use a cane. Any kind of physical activity (doing dishes, folding laundry, cooking) for more than 20-30 minutes on a REALLY good day and I can barely move at all and either freeze up, unable to speak or move or else have to practically crawl using my cane and my walls back to my bedroom.
I can't even watch TV or read a book for over an hour without a "brain break" for 20 minutes or I'll start dissociating and freeze up.
Yet I keep being told by my family that planning to have someone strong enough to help carry me out of doctor appointments, warning people of what might happen and giving them instructions for what to do it does (ex: I have a Neurological Disorder, if x, y, z happens I'm not having a stroke, don't call for an ambulance. Instead call this person to pick me up) is actually making me have the symptoms and I'd be doing better if I didn't plan around my symptoms so much.
Does anyone else have this?? People constantly telling you that happy thoughts and self belief are going to magically make you better? To just every day try to do 10% more than you did the day before (real suggestion from my mother)???
Don't get me wrong, I know believing i can get better is PART of it. I do affirmations and breathing meditations and research how to help myself get better sustainably.
But I am so SICK of people acting like this is my fault. Because that's the underlying implication; of you didn't think negatively, you would be better. You are only symptomatic because you are thinking about symptoms.
Like somehow I just up and decided to be afraid of walking one day and woke up the next day struggling to walk.
Sorry for the rant fest, but no one in my life seems to get it. My husband is my best advocate, but even he seems to just assume that if I was able to find a basket of laundry yesterday (and then passed out for 2 hours) that I can consistently do it.
I'm exhausted and stir crazy and heartbroken and lonely and grieving the life I had even a month and a half ago when my daily symptoms were significanyly more manageable. And to constantly be told but everyone that it's somehow my fault when what I really need is a hug and an "I got you" is really, really hard.