November 9th, 2015: Update. No digestive details (I promise) and no ranting. (reposted from Facebook)

What can I say… it’s been incredibly difficult. The disease has progressed further and at this point my arms and hands are almost completely paralyzed. So l need help with literally everything. My legs are a little better, I can stand and walk a little with lots of support. But the worst part is that the disease is very much messing with my ability to speak. This was really bad about 3 months ago causing fear and panic attacks with spasticity, so I couldn’t sleep and I was so exhausted that speaking became even harder causing more fear… Thankfully, with the help of anti-anxiety-medication I was able to snap out of it and my speaking improved some. But it’s still very difficult and I’m looking into computer communication programs to help me should I lose my ability to speak completely. (I’m also sometimes wondering what my last spoken word should be…)
So things calmed down a little and then my digestive troubles started. Since there was nothing physically wrong with my belly, that was most likely related to stress and anxiety. I was so scared. I could see no way to not be stressed and anxious while having ALS and losing weight again. Plus, around that time we applied for 24 hour care, meaning my medical insurance pays for it and we can hire a 24 hour nursing service. And that stupidly upset me. Stupidly because in reality I’ve been needing 24 hour care for months but because my parents were providing the care, it didn’t feel so bad. But the thought of needing a 24 hour nursing service… well, fear and panic attacks. And the new nursing service who should have provided my care was a huge disappointment. To say the least, it was unbelievable what those people did to me in terms of making promises they couldn’t keep, their organization was total chaos and that situation dragged on for days… causing fear and panic attacks. So, that nursing service is gone and I’m still looking and in the meantime my old nursing service are doing their best to help out. And somehow I, or rather my intestinal tract managed to relax and my digestion is much better and I’m sleeping better as well. No more fear and panic attacks, at least for the moment.
But the absolutely worst thing right now is my lack of time. I’m so tired and I have appointments every day and things like eating take so long that I literally have no time for anything. There are 3 blog posts stuck in my head and I have no time to get them out. And I don’t know when to hang out or just communicate with friends – and I miss you all so very much!

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