What I Need...

The March submissions for the Headache Blog Carnival are due soon and the theme is:

"Helping your loved ones understand what you go through and what you need from them."

Tall order. But I'll give it a try.

But first, let me catch you up on the last couple of weeks since we lost our little man. Yes, we miss him. Truffle was so lost and confused for the first few days that I was a bit concerned. She has since settled in a bit. She's much more of a cling-on than she ever was. She likes to cuddle up with either of us and plays with her toys (so we will tell her what a good girl she is) much more than she used to.

She's also become accustomed to sitting in the big picture window around supper time to watch our neighbour play ball with her large German Shepherd dog in the field next to our place. She puffs up a bit and sometimes chatters at her new doggie friend, but it's the highlight of her day for sure. It's like she's watching tennis the way her little head looks back and forth....



Anyway - What I Go Through and What I Need

* my avoidance of social events has NOTHING to do with you, the event, or anything else - just my excruciating head. Please don't take it personally.

* flexibility in time. There will be times when my energy level is good and my pain level is low - I will work extra hard in these times to make up for the times when both energy and ability are limited.

* I need you to know that I'm still good in a crisis. I can "bracket" my pain to such an expert extent that it probably isn't good for my overall health. I did it for three solid years, so I know what I'm doing. If you need me - I'm still here - and I'll be fine.

* Teh Pain Monster is not gone.

* I am doing everything in my power to live with It in a balanced and healthy way. Even so, there will be times when I just need to retreat with my ice.

* I am working out - not because it rids me of pain - but because it distracts me from it. That's okay with me.

* I am convinced that over four and a half years, I really HAVE tried everything, with a few clear exceptions: chiropractic (personal story there) and Occipital Nerve Stimulation. Nothing has worked. Accepting that has been a long and arduous journey, but I'm getting right with it. Slowly, surely, but yes - I'm getting there. I need you to understand that while I haven't given up - everything you suggest to me is likely to be something I've tried already.

* I have an excellent physio and a wonderful massage therapist. They both cause me intense pain at the time of therapy that generally results in less pain later. That, plus ice, is all I've got in the way of pain management. Some nights I have to breathe through the pain like I did through labour pains. Yes. It gets that bad. I get through it. Why? Because I am ONE TOUGH woman. This Thing will kick me around, but I will always kick back.

* That grey tint to my skin does not mean I'm tired. It means I'm in pain and there isn't a darn thing I can do about it. Telling me that I look tired only reminds me of just how helpless I am to fight this Thing.



* To my friends and family who have toughed out Teh Pain Monster with me and continue to do so: Thank you. I know I get crabby and distant. I know I get moody and cry too easily when my head hurts. I know I avoid things that are probably a lot of fun. I love you for sticking with me anyway.

* What I need the most: people in my life who know I am broken but still engaged and living this life as well as I am able in the moment. People who understand why I leave parties early. People who know I hurt most of the time, but also know that I am more than my pain - that I will not ever let my pain define me.

* What I need: People to believe that this is not "just a headache" - ever. It never has been. I would seriously PAY to have "just a headache" - even just once. I need people around me who understand that and believe it.

I am so very blessed. Why? Because everything I've just listed are things that I already have in my life. Yes. I am blessed.