This week has had some profoundly wonderful moments and some extraordinarily horrible moments. The headaches have been the horrible ones. Thursday night was one of the worst nights of my life. It was not only the intense pain. It was that after 1 1/2 hours of intense pain I felt adrift in panic and despair, feeling that the pain would never cease. I was downstairs and crying hysterically at 3 am when Carl came to find me and helped me at least stop the panic and hyperventilating. Eventually at 5am I was able to sleep for a short bit, but then at 6 am it was time to start the day. Carl helped get Sarah ready so I was able to rest a bit more. I am remembering 2 years ago when I similarly thought I could handle the cluster and hoped that if I didn’t take meds then maybe it would only last 6 weeks instead of going on longer. I was wrong. The problem is, if I don’t start the Verapamil when the beast is small then it becomes too big to stuff back in a cage without something extra beyond Verapamil. 2 years ago I got shots in the back of my head. At the time I dreaded it. This time, if it comes to that, I will go willingly. Or I can do a steroid. Or maybe the Gammacore new thingie will actually work if I can get it. Things are moving slowly and frustratingly to get it. Insurance won’t cover it because it is too experimental. I can pay for it myself but once it is activated it will only work for a month whether or not I use it. And it is $500 for that month. Argh. Still. At this point I am getting desperate. I have read that many women say clusters are worse than childbirth. I always thought they were similar because childbirth was really freaking painful. But with labor I knew I was getting something good at the end. With labor there were breaks in between contractions. (And then the wonderful blessed epidural.) With labor I knew it would end and then I would be done, rather than needing to go through it night after night for unknown lengths of time. So, yes, I second that feeling that clusters are worse than childbirth. I have known of people going to the emergency room for headaches. Thursday night was the first time I contemplated such a thing. So, yeah, it was really really bad.
What is odd and mostly good about cluster headaches is that they happen at night. So if I wasn’t telling you about them you would usually have no idea that I was dealing with them (unless you are my friend who has seen me dropping off Amy while still in a fog of pain). Once they clear then I go on and do my normal day. I may be tired but I can still do my life. And that life has had some really amazing things.
When I get a good night of sleep with no headache then I feel amazing. One morning as I was attempting to get Sarah ready for school and we were about to go into some of our normal patterns of resistance, I realized that I needed to change my frequency for my message to go through. It was as if I had been dialing the wrong phone number and that was why I was getting a busy signal in Sarah’s field of attention. I changed to asking Baby Panda to take a bite of her bamboo bagel so she could be ready for the Panda van. My call went through instantly! I had the right number. She looked at me, connected, and did as I asked.
Sarah and Amy played many rounds of Connect Four in a row with hardly any assistance or intervention needed. AMAZING!!!!!
Sarah has been singing a lot more in general lately, especially singing along with some of her favorite songs. She seems to have a new love of Adele, especially “Someone Like You.” She and Amy also sing “glooooooooooooooooria” from “Angels we have heard on High” loudly and longly.
Amy moved up a level in swimming! She is now a Turtle One.
I had some really wonderful teaching and massage moments. Thanks to experiencing Carl’s calm holding of my person during my headaches I have learned a new level of being for my Alexander teaching. I am comfortable waiting so much longer in any given area, really waiting until I feel the change I am seeking. With Carl and with J. I have experienced such kind, comforting holding of my being that I feel that intention coming more strongly than before through my hands as I give a massage or teach Alexander. I am more in my person, more in my presence, more in my kindness and compassion. I am trusting what I perceive more than ever. It is noteworthy that this new level of connection is perhaps due to my headaches. What has also been amazing is noticing how much more fully I can accept and take in comfort and letting go into being held than I could before. I thought that I was already there and then I invited myself to let go even more and I did. There are probably endless levels of this letting go, accepting love, connecting more fully to another, and offering love and presence. I love my work so much and I am so deeply blessed by incredible support from all around, whether in person or on the phone or via email. So much love and support. I could perhaps let go even more into feeling it.
May you never know a cluster headache. May you experience deep love, support, and ease in your whole being.
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