Another Bump in the Road! Looking for Suggestions??

As a rare disease patient Sarcoidosis, and Sjogren’s  with a not so rare disease called Parkinson’s, I deal with new symptoms everyday. My days are always filled with excitement.

Well on Monday I had a major setback in my road to “recovery.” I woke up in a very good mood on Monday then after finishing breakfast I tripped over my dog, which shouldn’t be no big thing. 

Here is the thing with that. I have terrible balance to begin with, so I tried to stop myself from falling which probably made it worse and somewhat better. I was somewhat lucky that fell through a doorway. Only my right elbow and my left ankle hit the walls. Then I twisted my right knee and my left hip hit the ground.

Ever been in a fall where you feel like everything is going in slow motion? Well that is exactly how I felt when I was falling.  I am realizing now what being terminally really means. 

What is means to me?

To me it means every thing I do, any step I take, Every bad feeling I have has consequences! I am trying to understand this in my mind. Of course this is a new frontier and not many people can help me with this. 

One thing I found out though is I seem to do most of my writing when my mind is in a fog. Is that weird? I don’t know why this is but I do this most of the time. So in advance I am so sorry if any of this doesn’t make sense. 

I have been realizing how life is fragile! Things that you take advantage of in life are so much more difficult to do now.  Walking down stairs, getting dressed, taking showers ( I use a shower seat), walking with a cane (told by my doctor I need a better one, a 4 point cane) even getting out of bed is always fun! No I am not complaining! I am just describing my daily life. It is different and something I am trying to adjust to. 

But the worse part of adjusting to my declining health is the brain problems. The lost of memory, the lost of vision, the brain-fogs that come and go. I have the most problem with that. I have not taken pain pills because I wanted my mind clear. No I can’t even control what I am doing and thinking at times. 

I have always been one to pride myself to be in control of my mind, so I have to say when I get this way I kind of freak out. Which I am sure it makes things work. But I can’t figure out how to stop this feeling. 

My meditation has helped but these fog days can last all day. So I just hold on and hope to make it through this day. 

I know that being terminal isn’t good, but I don’t want it to run all of my life!

What are some of the things that you do??? I am always up for suggestions, legal or harmless of course. 

Not all of these blogs are just for information, they are some just for help to me or anyone else going through this!

Please help!!! 

I have two mottos:

  1. I have Sarcoidosis, but it doesn’t have me!

  2. Terminal is just a word, not a death sentence!

I Feel Useless!!

What to do when you feel like there is nothing left?

I write these blogs to give you an insight into just one person who is a terminally ill patient. All of what I write is about me and not trying to speak for anyone else!

I am having many days in which I feel absolutely Useless!!! My body feels like it wants to give up on me but my brain is saying no not going to happen… I am wondering will I ever have a day in which I can do anything anymore. Yes I do things, but I am doing these things in spite of my body! If it was up to my body I feel it would say done… I don’t want to say I am giving up but what your mind and what your body says are two totally different things.

I am always tired, hurting and emotionally drained. More than usual now. I know I was downgraded from chronically ill to terminally ill, but I am not the type to give up and refuse to. I don’t want to be laying in bed everyday and doing absolutely nothing. I can’t! If I do I might as well just give up! Well I have given up before and don’t ever want to go back there.

I have been thinking about so many different things because what else do I have to do. I try to read I just give up. I listen to audio books and lose interest in minutes. I know I am just going on but I want people to understand what it is like to be me now!

I am having so many internal battles that I don’t know who or what I am anymore. My head is like you are better than you think but my body tells me you are terminal. How do I decipher what is what?

With all this being said I regret coming out that I am terminally ill. Honestly I wasn’t going to tell anyone, but didn’t know the NBC Nightly News put it up on TV for my whole interview. So there it was!! I feel that too many people are walking on eggshells with me. When I say I can or want to help it is because I want to help! If I don’t do what I do best I might as well GIVE UP!

I know people mean well and are trying to make sure I don’t do too much. But I don’t want pity. I know as a friend where do you draw the line? For me I know my body better than anyone else. If I can’t do things I will let you know. I really need a purpose in life other than just staying alive!  I have a great family and support system who I want to spend a lot of time with and they deserve that. But most of the time I am home by myself just doing absolutely nothing because I am stuck in bed and in too much pain to get out of bed.

But I don’t want to be useless! I don’t want to think there is nothing left for me to do!

Instead of being suicidal, lately I am just very aggravated! I am not adjusting well to my new normal. Why? Because my new normal is not a good normal!! It is a normal in which I am told that you are dying. It is a normal in which my body just says lay here. I know I need the rest but is it really rest when your mind won’t stop and you feel like why am I even here?

I am not an ego person but I feel like I am not needed anymore. In all aspects of my life! It is not anyone’s fault but it is me just going from being busy to doing absolutely (well hardly) anything. When I was diagnosed with Sarcoidosis I knew it was going to be rough but I had a purpose. Right now I really don’t know what my purpose is??

I know my family needs me and wants me as I do with my friends but it is really tough to go around life when you feel you have no purpose.

Yes this is a form of depression. I know that! But this is different from any other type of depression that I have ever dealt with. It is hard to talk to anyone including my counselor. I can talk but when I get asked how can I help? I don’t know how to answer this! How can you ask for help when you don’t know how anyone can help?? It really is a tough situation to be in. I really don’t know who I am!!

I figured I needed to write this more for myself than probably anyone else. I am in a place I never thought I would be!

ONCE AGAIN I AM NOT SUICIDAL.

I AM LOST!

I DON’T KNOW WHO I AM OR WHAT I AM??

I AM JUST HERE!!!

TO ME THAT IS THE WORSE FEELING I HAVE EVER DEALT WITH!!