Weary? Maybe, but never weak!

I had a difficult time getting myself in the right frame of mind to even attempt writing yesterday. In the greater scheme of things occurring in our world, it seemed trivial, totally inconsequential. I even had difficulty getting out of bed. I know I ended last week's blog by saying support groups and politics is not a good mix. I will probably walk a fine line, but I am going to attempt to restrain from discussing politics and religion.

Right now, until our house is finished, my bed is a futon in my daughter's living room. That became a blessing today. She came out and turned on the television to our church's broadcast service. They still are not able to have in-person services but, fortunately, they always broadcast their service anyway. That is what inspired this blog entry.

While Pastor was speaking, several of his points were quickly relating to FTD in my mind. His message was about when we are tired and weary. "When you are weary, you start fighting battles that should not be battles at all. Then we become so tired of fighting those battles that we create more battles."

The difficulty I had dragging myself out of bed was because I knew we had to go to the grocery store, one of my least favorite things. I was trying to come up with reasons why I should not go even though I had not been outside in a full week. I have been feeling exhausted mostly due to the general feeling in the world right now. All the anger, blame and violence was overtaking my entire mind. I was fearful of going out, afraid of what conflict I might find.

Conflict is something I can no longer deal with with my FTD brain. I cannot process things when some in my life whom I respect and love make decisions about what my opinions are. My immediate reaction is one of paranoia. Are they making these assumptions because I have FTD so they figure I am stupid? Or since I have FTD, I should be easy to convince to reverse my thoughts? Unfortunately, with my FTD, I end up verbally lashing out at them no matter what their reason.

Thinking about battles led me to the battles between FTD'ers and their caregivers. Unfortunately, there are many. Caregivers are tired and weary and it is not rare for them to become resentful for the sacrifices they must make. There is also the frustration of not knowing what to do or what choices to make, as well as no idea where to find the energy to keep on going.

FTD'ers become beyond weary of dealing with the illness just as much as caregivers even if in different ways. We cannot take a break from the disease and the difficulties it brings us. We cannot take a respite break or get away from it for a few hours. It is always with us. The only break we get at all is when we are sleeping but, even then, we are plagued by nightmares, hallucinations and general sleeping difficulties.

Then Pastor added, "Just because you are weary, does not mean you are weak."  Aha! Thank you Pastor!

Just because I am weary does not mean that I cannot stand up to those who assume what my feelings and opinions are. They are certainly entitled to jump to their own opinion. That they do, does not mean I am too weak to choose to ignore their opinion or comments. I am not too weak. I can tell them that they have no idea what my opinions are and that, yes, I have FTD but am still capable of making informed opinions and choices. And, yes, I am not so weak that I cannot decide who to block on social media.

I can be weary yet still strong enough to tell those caring for me that they are not experts in FTD because they knew someone who had Alzheimer's. I am strong enough to tell a doctor that s/he must do some research on the disease or I must go elsewhere.

I can be weary yet still strong enough to tell family, friends and caregivers that I need some "me" time... that I need to go into my room and retreat to silence and allow calmness to come over me... before I explode.

I am weary when I am not being included in making decisions for myself.

This was true for me when I was my husband's caregiver just six months ago. I was not too weak and weary to serve as his advocate. When hospice turned him down, I found the means to obtain the equipment and supplies I needed to make the time he had left just a little easier for him. I was also not too weak to stop trying to get hospice in to help and I succeeded.

Those of us with FTD, those who love someone with FTD or care for someone with FTD are often weary... but we are not weak. Anyone dealing with this disease just cannot be weak.