I joined two support groups. One for fibromyalgia, and the other for multiple sclerosis. I relate more to the people with multiple sclerosis than those with fibromyalgia, although the symptoms and medications seem to be highly related. Maybe fibromyalgia is just an early form of MS.
Sleep has been a huge problem lately. Despite strong medications to help me sleep I seem to be running in ridiculous cycles. I will sleep about 20 hours, and then I'll sleep 2-4 hours for a few days, then back to 20. It is really frustrating. When I sleep during my longer sleep periods, I am impossible to wake up. Damon, Benjamin and alarm clocks have tried. I practically sleep standing up. When I can't sleep, there is nothing that will help me. I hate this cycle. It is especially hard since it is summer and Damon and Benjamin want to do things with me that my weird sleeping issues won't allow. When I don't sleep at night, I end up having to sleep sometime during the day, so either way, I'm missing out. From what I've read, it isn't uncommon for people with chronic illness to have sleep issues. It's one of the top complaints on all of the support groups and blogs I've read. Pain, sleep issues, and medication reactions. What a dream life we all lead.
I applied for disability yesterday. It was hard. I cried a lot, and I'm not even sure why. I think I feel lost. Where am I without work? We need help with them money, and I am certainly disabled by all this, but how do I prove that without a workable diagnosis and such. I've read it is common to be denied the first two times you apply, so it is better to apply early. I also need to get a referral for an MS specialist from my neurologist so I can see one at UCLA. Currently I am only approved to see a doctor who specializes in seizures, and nobody is sure if that is really even happening. It is possible this is all just fibromyalgia, but there are not real treatments for that, and there isn't even a good doctor in town that I can find. I don't know what to do about all that, but I am so tired, sore and sick of all this mess. I want so much more from my life, and can't have it. I cry a lot lately. I want to be happy, and move on, but so much is uncertain, and so much has been lost. What do I do?
Well, now it's time to be off, to digitize medical records, and copy them for the local social security office. I must also organize my records and have them sorted by disease, diagnosis, date, and supporting tests. It may take a while. There are also fun things to do today, and for that I am grateful. Sleep will always come later.