Thursday, May 31, 2018

Kind of happy medical device

For almost two weeks, my shunt has been behaving. It's sort of a shunt miracle to have had a several days without any discomfort.  Last night, I had some brief pain issues. Nothing nearly as bad as almost a month ago, when I had stabbing pains in the shunt valve, right eye and distal catheter pain/nausea. Earlier this week I went to my local brain injury support group which meets at a nearby medical center.

This meeting was a separate group for caregivers and survivors. The last time I had attended one of these groups was last year and it was a combined group with both caregivers and survivors.

In this week's group we spent time talking about grief and how it relates to brain injury/disabilities of any type.  Some of the grief rights we discussed in the group are the following:

1. I have the right to have my own unique feelings about my illness or injury. I may feel mad, sad, scared or lonely. I may feel numb or sometimes not anything at all, No one will feel exactly like I do.  I think some people don't want to feel the pain you're feeling or they just don't know what to say. Or they just don't want to think about what you actually went through because it's too painful for them to experience.  

2. I have the right to need other people to help me with my grief. Mostly, I need people to realize that my grief is normal and people who will listen to me without judgment. One of the reasons I'm going to attend more support groups in my area. The one I went to earlier this week also has a walk event every year which I went to last October. They also have social gatherings. This summer, they're going to have a bbq for the group. 

3. I have the right not to 'think positive' or 'be grateful' when I am grieving these losses.  I've had people right after my injuries tell me I needed to be more grateful because there were people worse off than me. My response was I never said I wasn't grateful. It was easy for me to re-learn the first three years of my life.  I've offered to give people who say this to me the same injuries I had and they usually stop talking to me about how I 'should' feel. 

Thursday, May 17, 2018

Explain the brain away?

Last week, my medical device caused me pain in different parts of my head, neck and face before a lightening/thunder storm. This week, the vertigo, and tinnitus I haven't had for a while now has returned. I'd rather have these symptoms than varying degrees of pain and discomfort. With both, putting my head down and taking some pain reliever/moderate exercise helps.  

I've found it a challenge at times to explain to people why/how pain affects you the way it does. People who haven't experienced brain injury and what happens to the body after sometimes don't know how to interact or respond to someone who is experiencing pain from a brain injury. Some of the pain I've experienced is related to things in the atmosphere such as weather, other devices in the area, or stress. 

When I hear things like 'Oh it's just the weather' or "Just take something for the pain' Sometimes the pain doesn't go away with pain reliever, it only diminishes to then return again later. I've provided things for people to read about pain management and brain injury. I do believe when it's family members who inquiry about your pain, they don't want to remember why you're feeling the way you do. Sometimes it's just too much for them to deal with emotionally. There are also some people who don't have empathy. 

It just depends.

This afternoon around 3pm when the sun started to emerge from the clouds, my shunt and right eye pain returned. It's suppose to rain tomorrow. A family member told me this afternoon regarding my pain 'You'll feel better soon' My reply was 'Yes, I will, it's just that my head and eye doesn't know that right now. Right now, I feel pain that hasn't gone away for a few hours now.' When we feel pain, do we have to apologize in advanced for feeling grumpy or tired? 

Saturday, May 12, 2018

Dear Shunt, I hate you part V

Dear Shunt,

Too bad separation isn't an option. Unless I want my brain to herniate without you.

Hamsa pendant I made at library earlier this week. 
In other news...

Monday, Tuesday and Wednesday this week I had consistent all day shunt pain, nausea and right eye pain. Not sure where the right eye pain was coming from. Whether this was related to TMJ or my eye surgery 3 years ago. 

I suspect shunt pain is from the thunderstorm we had on Thursday night. Yesterday and today have been better. Tuesday, I had an arts & crafts workshop at my local library. The shunt valve pain was bad and I decided to attend anyway. 

I had to leave early as the pain was bothering me. I was happy to put my head down once I got back home. Pain reliever minimized the pain, only for it to return later.  I also don't make a habit of taking too many pain relievers during the day.