Lizze has had this same migraine, without a single day of relief, for over 16 months. In fact, I think it’s actually closer to 18 months now. 🙁
Today has been especially bad for her and aside from sleep, there isn’t anything we can do for her at the moment.
I often forget how much pain she’s in because she hides it from the world and doesn’t want to be a burden on anyone. It becomes heartbreakingly apparent, when I look over at her and she has tears streaming down her face.
It’s in moments like this that I’m reminded of how much she suffers and it literally breaks my heart.
I wish there was something that I could do to rid her of this pain. A large portion of this is directly related to the amount of stress she’s under. Stress is the enemy I’ve placed on my most wanted list. Dead or alive, it doesn’t matter.
Stress isn’t some metaphor for our kids, autism or even Gavin’s health problems.
Stress is an enemy that thrives on devouring our sanity, health and well being. Things like having CPS show up at our door, are extremely stressful. Fighting to stay in a house that’s in a neighborhood that isn’t safe, if stressful.
Having the world not understand our kids and their unique needs, no matter how much we trumpet the cause, is very stressful.
Knowing that life is so challenging for our kids, especially Gavin, is an insurmountable amount of stress.
Right now, there isn’t really anything that can be done about this stress.
The only weapon we have against this invisible enemy, hell bent on taking us down, is called perspective. Perspective isn’t capable of destroying stress but it can help us to see it in a different light.
Stress thrives on feelings of failure, fear, uncertainty, worry and inadequacy. Perspective helps by changing the angle of view. Things may seem really bad when you stare at all the things in life that aren’t going right. When you look at life through a failure, stress is right there, waiting to pounce.
However, when you change your perspective and look at life through the eyes of everything you have accomplished, things change.
At this point in the game, that’s what I’m trying to do each and every day.
It’s not easy and sometimes even this isn’t always enough to get through the day. It does however, give us the strength to pick ourselves up and keep moving forward.
This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉
Visit the My Autism Help Forums
To reach me via email, please Contact Me
During my Great Headache Crisis I slept a great deal too, to escape the pain. For some reason I never woke up in pain. It often didn’t begin for at least an hour after I woke up — though sometimes it took as little as ten minutes, depending on how bad the headache was. I also read a lot to distract myself. In the year 2011, when I was in pain the whole year through, a read a book every day. I read 374 by the year’s end.
Has she ever been tested for Pseudotumor Cerebri aka Idiopathic Intracranial Hypertension ? It causes debilitating headaches and is best diagnosed by an Ophthalmologist who can view her optic discs. If she hasn’t had this looked at please make an appointment asap. I suffered with it and it causes debilitating headaches and can cause vision loss, balance issues, etc. Additionally, the post below mine mentions Ehlers-Danlos and Chiari which are closely related ….they don’t know how but they are. Pseudotumor is just as it sounds. Your brain “thinks” it has a large brain tumor when it in fact does not. Good luck. http://www.IHRFoundation.org for more information.
Forgive me, I’m new to reading your blog so this may be something you’ve already answered before, but does your wife happen to have Ehlers-Danlos Syndrome? Is she extremely flexible or double-jointed? A good friend of mine has CHRONIC migraines, like what you’re describing your wife endures, and I showed her a video on Ehlers-Danlos and she immediately knew that’s what she was suffering from. She’s getting genetic testing to see if she does in fact have it, but the problem is that her neck doesn’t support her head properly, which means constant pressure is being put on her brain, causing horrible migraines. Let me know if maybe this sounds like your wife because I can send you the Youtube video of the show I saw (it was on the Discovery channel) that featured a girl who had this condition in conjunction with a few others–a Chiari Malformation and a retroflexed odontoid.