Vacation, Writing & Request for Respondants

A windswept native Eastern White Pine on the G...
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Ok, here we go again. Georgian Bay is home to me. I wrote about this last year too. Once I am in the Harbour it is like I am in Heaven. I don’t know what it is, how it works, but it does.

My kids have been at sleep away camp for 2 weeks and I slept for 2 weeks. Sometimes the pain gets to you so much you can barely recognize how tired your body really is. I could have cleaned the house of done purging, but nope. I slept. For the past 3 days I am preparing for every possible contingency as there is no road access. If I forget milk, we have no milk. Oh well.

It seems that for whatever reason my pain is more manageable there. Something about how the rocks, water, sun and wind just come together in a perfect mix. It is just so wonderful. My kids will have spent almost one full month in Georgian Bay. I am so jealous of them. It is funny how I remember my times at camp so vividly, and it was so long ago. What I also find interesting, is that even though I am 8 years into pain, I don’t seem to remember the pain? I mean I can look at pictures of me and remember that I hurt a lot – but I can’t actually feel it. Isn’t it strange how your body works? Do you fellow Painies feel the same way?

In September we will be welcoming Invisible Awareness Week. I want to write an article from the perspective of those who live with Painies. If you are willing share your story or your children/spouses/friends etc are, please go the Contact Page on my blog. Upon my return I will be sending out questions. All information will be confidential and any stories I tell, will have names changed to protect your privacy. I respect the fact that most people don’t want their innermost secrets and insecurities be made available to the general public.

In order for the general public and the medical community to recognize us, we have to tell the whole story. That includes the trickle down effect on the families and friends of Painies. Those who have to take on responsibilities they don’t have the training or skills for. Children who grow up with parents like us, have special considerations. Maybe we are too hard on them because we are cranky from pain. Maybe we are too distant because we are in bed. Maybe they lose out on support because we can’t attend events. Maybe they grow up with more compassion. Maybe they have more patience. Maybe they have more empathy.

Marriages are tested through this – I mean some of us are lucky that we married great people. People who innately are able to deal with crisis and  I know I am. However, what resources are out there to assist people in dealing with people in constant pain? Marriage is difficult enough, without adding this to the mix. There is a way to bring understanding and support to this issue. I mean when Vets came back from WWI, WWII and Vietnam – we didn’t know about PTSD. We just assumed, they survived should feel grateful and were to just assimilate to regular life. There was no way to “get” what was happening in the minds of the soldiers. The wives, children and friends were confused about the behaviour and had nowhere to turn. Over time we have learned that you can’t just go back into real life. There needs to be transition, therapy, understanding and support.

The same goes for someone with Chronic Invisible Illness and those that love them. There is pain or symptoms, discovery and tests, if lucky a diagnosis, then treatment and regular life. How do you go forward then? Who gives you the skills to cope with the whole mess. I haven’t even mentioned financial stress. Money is a major reason for marital breakdown, so if you have to pay for treatments and you can’t work – that increases your risk for divorce. Even though I live with Universal Healthcare we have had to pay quite a large amount of out of pocket expenses. So, how do Americans do it, when their insurance runs out? Or if their insurance doesn’t cover it?

We have to create a network for people to have resources that assist in getting information, support and assistance when dealing with a Chronic Invisible Illness. I mean when you get diagnosed with Cancer – you are automatically directed towards support groups. Not just for patient but for family. Work is understanding about treatments, medications and emotional needs with a tangible disease. However, we Painies are still doubted, dismissed or downright discriminated against.

If you or know of anyone who would be willing to participate, please go to the Contact Us page of this site and I will be returning the message when I get back. Which is the very last week of August.

Off I go to try to get some healing for my system!