The exhaustion of loss of Independence!

I have been ill now for 16 years, and in the past 10 years I have had great difficulty in managing normal daily life things like grocery shopping, other driving errands, cooking meals, keeping up with house cleaning, pet care etc…. Because of this I have needed the support of a family member/caregiver for the past 10 years. For me, that has meant I have only had the blessing and opportunity to be alone for a day in my living space a handful of times in all of these 10 long years. Although thankfully, I have had amazing people in my life to be with me, love me and help care for me, it has at the same time been extremely daunting! I have many times fantasized about just moving away to another state, or even country, and living blissfully alone… unfortunately unless treatment becomes available for my mitochondrial disease, that will not be a reality in the future for me, and in fact the degree of care assistance I need only continues to become more and more invasive in all aspects of my life.

If you are a care-giver, please find a care-giver support group where you can safely talk and vent out frustrations… please be patient and understanding that your patient or loved one is doing their best even if they are less than pleasant on any given day, they like me, may just be tired of it all, and wishing they could just run away to another space, and another reality… it has NOTHING to do with you personally, and we appreciate you to the moon and back even if we sometimes are very poor at showing it. It is hard at times to be thankful for something that you NEVER even wanted for yourself.

If you are the CARED for… reach out for support in groups for your illness/disability for an outlet to express your frustrations in a healthy way, and work regularly with a therapist whenever possible. Start each morning by focusing on all the blessings you have in your life in spite of your situation, and be sure to make an effort each day to do something positive and supportuive for the people who support YOU everyday… even if it is as simple as stopping, looking them in the eyes, and asking… are you okay today?