Zoning out

I've been having periods of time where I zone out. It feels as though everything suddenly slows down and I am heavy and sluggish....talking is very hard and sometimes impossible. I've had these for quite some time now and just thought I was suddenly run down so I would go to bed and rest. Last night I had one in front of some friends for the first time. I was unresponsive and one of them told me later he was about to call 911 right before I came out of it. I guess not having witnessed the effect, I hadn't realized how serious they were. I will definitely be informing my doctor. I uploaded a new video clip, and you'll notice I appear to I space out for a few seconds several times during the recording. The episodes are a bit like that but last a lot longer. Last night's 'episode' lasted for the better part of 20 minutes, and others have lasted much longer.

http://www.youtube.com/watch?v=p6DZ3s05U9o

Changes

I continue to be amazed at how this disease randomly changes in the way it affects me. While my speech is clearer now most of the time and I don't have as many twitching episodes, I now have more joint stiffness and pain, and random jerking movements; mostly in my limbs. My left wrist is very sore all the time, as though it's mildly sprained and I cannot put weight on it without intense pain. My left knee aches constantly and walking is difficult. Also my muscles have weakened significantly in the last few months. My legs and arms will buckle when trying to move around or support myself. I've also had recurring pain that is unlike any other. It is not a sharp pain, but a dull nagging ache...it feels like my bones are screaming at me. The pain is more aggravating than anything else and leaves me wanting to grinding my teeth in frustration Many have asked if I've told my doctor all this. Frankly, I don't see the point. It is all caused by the disease, so when I treat that, it will all go away. I'd rather not waste my precious little energy trying to treat symptoms when I could be raising fund to treat the underlying disease. For now I will take ibuprofen to dull the pain so I can focus on my goal.

*#%@&%(!!!!!!

My frustration levels are rising today. After months of attempting to contact the owner of a message board I belong to to get permission to publish a post about my condition and ask for donations to be sent to the clinic on my behalf, I finally got in touch with him and got the green light. I posted it yesterday, but within a few hours it was removed by the moderators. It seems he forgot to tell them he ok'd it. I have messaged him and am awaiting response. After feeling the relief of finally getting it posted after months of work, it felt like a kick in the gut to have it deleted. I can feel myself slipping into a depression over this, as it seems to be a recurring theme. I make a little progress, only to get kicked back to where I started. *taking deep breaths* I have been getting sicker again, with weakness and pain increasing, so my feelings of frantic desperation are taking hold. I don't know how much longer I can continue this way.