|Outside with flowers and a cool building.
Yesterday was better in terms of head/shunt pain issues. Last Saturday specifically was the worst day in a long time, four hours of pain until it finally went away in the afternoon. My medical device gets temperamental depending on the weather and phases of the moon. I was fortunate enough earlier this month to go exploring with a friend and encountered several flowers and architecture.
It’s been a while since I completed a book and earlier this month, I finished working on one. A short post about it can be found here.
6/1/19 – I don’t know what it is about Saturdays. Last Saturday was a bad shunt and head pain day. Today is also Saturday and it’s another bad chronic pain day. I tried again to take medication in the afternoon, and not much of an improvement even after 6pm. Continuous eye and shunt pain both at the same time.
6/2/19 – Shunt, eye and distal catheter pain in stomach at various time during the night, especially early in the morning like around 2am. I could go on a profanity laced post about my shunt, I’m not going to though. I have a better idea about expressing my extreme frustration with my medical device.
More on that later…
Since the week of March 11, my shunt has been misbehaving. My medical device is working, just acting like an unruly child. The changing temperatures outside are not helping. Additionally, my shunt adjusts each time I move my head and I can feel when the device is processing a lot of csf fluid. When this happens, there is pain on the shunt valve and through the distal catheter at the top of my head. I’ve felt nausea some days from the catheter in my stomach. Then there’s the dizziness when I am walking sometimes…Yesterday the discomfort and pain was making me nervous because I’m always trying to pay attention to whether the shunt is failing or not. It’s been five years and so far things are going well. There are times like these when I get uncomfortable and with good reason…
If it’s not one thing like the shunt valve pain, then it’s pain from what I suspect is still scar tissue from my injuries in 2014 on the left side of my head. This was gone for a while and then occasionally re-appears at random parts of the day. It’s like my scalp is still searching for pieces of my shunt on the left side of my head. There are family issues going on too, which I’m not going to get into….totally not helping the situation.
To distract myself from the head issues and everything else…My local library has a coloring therapy group for adults. Just nice to sit with a few people, enjoy some tea and color various designs. This reminds me of a book I read called Zentangle
, where you can create drawings
which create a calming affect.
I just hope my head and shunt pain diminishes soon. It’s always a challenge dealing with a chronic illness like hydrocephalus
and chronic pain, as any family or individual will tell you. If anything, I feel like pulling out the short hair in my head out of frustration dealing with my shunt…Not knowing what it’s going to do each day or hour.
In the meantime, I see my neurologist soon and perhaps this will lead to CT scans…
Update as of 3/20/19 – shunt valve pain all night with pain in my right eye. The many joys of living with hydrocephalus…..