The diagnosis did not come as a shock; in fact, I think I knew for many years that it was coming of age. My father had been diagnosed many many years before and we (his children) were told that there was a 50/50 chance we would develop it too. For some reason, I always knew that I would be one.
So far, I am the only one of seven children to have developed the disorder. Hopefully, I will remain the only one.
Although I had underlying symptoms for many years before the actual diagnosis, we think the prominent symptoms (the ones that have resulted in my "recognized" disabilities) were triggered by a particularly extremely stressful situation in our life.
When I was officially diagnosed in January 2012, after careful consideration we made the decision to make some big changes to our life and lifestyle. It took the better part of a year to make the changes come to fruition, but by September of that year we were on our way. Without going into detail as that is a long story in itself, our lives are so much richer (in many ways) and healthier. We cut living expenses and have a little more breathing room. We have no regrets.
The worry...
I am no longer able to work, I can't drive anymore, I can't go anywhere alone - but I have a wonderful husband who carries those loads these days without any complaints.
Most of all, I can't contribute to our monthly income like I used to.
Although my life is good despite the disability and the knowledge that the physical things will only get worse - not better, I continue to keep a positive attitude. There is no point in dwelling on the negative as that would only make life miserable for myself and my family. I live day-to-day, making the best I can of each.
However, because I can't work, money is tight. We've had to adjust our living and living expenses considerably. I do get a small pension from my years working for the government but we also know that that won't help a whole lot when my husband is no longer working for whatever reason.
When it is time for CPP, that will replace my pension, not add to it so we will be no further ahead. At that point, we will have to live on an extremely small amount of monthly income.
My one big worry is for our future. We lost a lot during the recession - mostly our savings (the money that we had set aside for our retirement has dwindled) for various reasons.
Which brings me to a disappointment -
Our Government doesn't help much. It is extremely confusing to navigate through their websites (and I am computer literate) for the purpose of finding information on disability, our rights, any benefits that would help, etc... After many attempts, I have found very little information. Supposedly, I qualify for the Disability Tax Credit but no one seems to know or understand exactly what that gives to the disabled, what it is for, how it helps to make life easier, or anything. Believe me, I've asked many people and no one really knows. It certainly hasn't done anything for me with regards to taxes...
All I want is to continue to live my life without stress and worry over finances, to feel like I'm still contributing to our income so that the burden isn't solely on my husband, to be able to afford to get help and aid when I will be in need, and to know that we will be okay.
At this point, I don't feel confident that we will be okay in our future.
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