Hi Katrina,

I haven't been on here for a while so missed your post earlier. Welcome to Neurotalk (NT) and I hope you find some help here.

I don't have Chiari, nor do I know anyone who has it. However I have been in your position of being the healthy person in a relationship with someone who was chronically unwell, (now deceased). At the time I thought I was doing my best to accept and be understanding and tolerant of what they were going through. It wasn't until I myself became ill that I truly understood what it was like to live with chronic pain and all the fatigue, emotional, cognitive and neurological disruptions that come with it.

As John says - just your being there is an enormous help. Maintaining open communication with your husband and best friend is one of the most important things you can do for each other. It can be frustrating as the healthy person if you don't know what your partner is feeling or needs and ultimately may cause your partner to withdraw if you try to guess but it turns out to be the wrong thing. If you're able to have a frank conversation where you develop a type of 'shorthand' that you can use to interpret his particular needs at a particular time it can make things go smoother. eg he may just say "I want to rest today" and if you know up front that that means he's exhausted, in pain and just needs supporting or he may say "I can manage XYZ this morning" you'll know what level of functionality he has for that time. "People in chronic pain are often reluctant to continually speak of it but having a mutually agreed 'shorthand' for those who are their closest family and carers can be beneficial. The ill person doesn't have to constantly express their specific limitations and the carer has an understanding of what is required without having to have it repeated.

The other important thing you can do to maintain a loving relationship is to look after yourself. Make sure you set aside enough time to do things for yourself that nourish your spirit and strength. It may be as simple as a regular coffee morning with friends or going to the movies, an art exhibition, a hobby, exercise etc. Something you do away from your role as carer - it will benefit you both.

In regards to finding a support group in Edmonton I did a search for a Chronic Pain Support Group - unfortunately the Edmonton Group has been suspended since 2015 - You might want to contact the Calgary group for information:
Support | Chronic Pain Association of Canada (scroll down to find Calgary/Edmonton)
This particular group may not have specific information on Chiari but they may know where to direct you.

You're always welcome here if you need to talk or seek advice. I hope your son is doing well.
All the best.