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Managing MY Illness

The Quote above perfectly describes how I feel at this time. It truly is all I have left is courage, courage, and courage will take me hopefully through another phase of living with a life changing illness.

Today I am so excited, almost exuberant really, for the first time in a very very long time, I have been able to be getting work done. I have send off my Bio for a presentation I have to do in February here in Lake Country, I have finished doing my review of submissions for the scientific program for the Alzheimers Disease International Conference in June. I have responded to emails that have been sitting waiting. It may not seem like much but it is a lot when I have been so busy dealing with health challenges and pain that most other things have been sitting on hold.

Life for me is about adapting, changing and finding ways to continue to manage my illness. I have come to believe that listening to it, too our bodies, the signals the signs it gives us is the best way to stay as well as we can for as long as we can. This is not easy to do, part of me and I suspect many of us living with Dementia, want to push ourselves, do continue to do as we have in the past, to maintain in all the same manners we have. It leads too much frustration with oneself, never mind the frustration it likely creates for others. So I am on a continual learning curve with myself and my illness. Learning to stay in bed when needed, nap if needed, slow down, go to bed earlier. Doing nothing but resting is sometimes the best gift we can give ourselves, our bodies, and everyone around us.

I have been, while I am waiting for procedures to be done, learning to manage the pain, pain creates all kinds of issues and responses in our bodies, which can create a lot of complicating factors, this has been a huge learning curve for me who has in the past always believed we should fight through the pain, push on just keep going. I now understand that keeping going can sometimes mean to just stop for a while. So stop I did, I spent very little time on Social Media, away from many commitments and groups and a lot of time in bed, lots of very quiet time curled up with my dog and a cup of tea. The last month or so has been very different than the push to walk and walk more and farther, to do more, contribute more, instead it was attending what and as I could, less, less, less. What a gift that has been to myself. It is helping me better manage the pain, I will be happy when the procedures happen for the pain control and hopefully they will be successful, that will allow me to be a lot more active once again.

I think the gift of learning and be ok to manage our illness in the best ways for ourselves actually ends up being great ways to help others in their journey with Dementia, especially those who are newly diagnosed, and to help their partners and spouses and ease a lot of conflict, misunderstanding and stress and frustrations that can come from us trying to push when we shouldn’t and from partners not understanding when we are trying to tell them how or why we can’t, even though tomorrow maybe we can. This is the way to living well with illness, because despite of all that illness is and can be we still can live well, we just have to redefine it as we go along.

I am closing our todays blog with the Quote below which also really speaks about how I feel as I feel my Dementia does not own me or define me, it is part of me, we share the same house, and as such must find ways to share the space in ways that are best for both.

By WWW.Chrissy's Journey.com

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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