After I awoke, I rolled to my side and looked at my clean clothes on the floor. I wish I could hang them up but going from the bedroom to the closet and reaching to hang up each article of clothing is hard. A person who isn't sick wouldn't consider it a big deal to walk 30 steps to the closet while carrying their clothes, and then hang them up. I used to think of that as a little thing among the many things I had to do.
In just my room this is what I did: Opened the curtains daily and opened the blinds to let light in. Made my bed. Kept the floor clutter free and vacuumed. Maintained the clutter and put or threw things away when necessary. Wiped dust off the furniture, walls and lamp shapes as needed. Emptied the trash cans when they filled up. Picked up stuff on Per's side of the room. Washed the bathroom counter and sinks when they got dirty. Cleaned the toilet and shower. Vacuumed the bathroom floor.
Now, it good when I do one thing. It takes effort to walk even a few feet. My head feels dizzy when I stand. I don't have the balance to carry things and could fall. Reaching makes me feel tired. Bending over causes even more dizziness. My fine motor skills are clunky, for example: compare an adult and a child buttering bread and think of me as the child.
As I walk through my house, that I used to keep clean, I see all the things that need to be done. I think pick your battles and decide to lower my expectations.
I used to maintain my home and cook most of our meals. I wanted to do it. I still do, but I can't. It's crappy to realize I'll have to pay to have those things done but if I want them done I'd better get out my money. Non-sick people wouldn't dream of paying for a service they could do themselves.
A person never knows when they will go from non-sick to sick. I pity the sick person who stays sick because people will help them for a while but then...they will stop. If the sick person wants a thing done, they will either have to pay for it or realize that it won't be. If something is paid for, the idea is sad because what is paid for was once done happily and for free.
I am grateful for my illness because it has taught me many things. Nevertheless, I wish I weren't sick and could do things myself. I'm the kind of person who likes to be in charge of my own destiny. I don't like to be dependent upon others. I was independent for years. Now I'm not. I remember when I could do things.
I imagine this is how an old person feels. I'm young (43) but I feel like my illness has caused me to age 40 years. I won't allow myself to get depressed but I could be if I went there. I feel frustrated that people once helped me and now they don't. They don't do what I need when I need it most. I'm sad that I served people in my church but they won't serve me back. I gave everything I had to people but they won't give it back to me.
I want to scream "I'm a person with feelings" because I want certain people to acknowledge me. I want them to embrace me and be charitable because that's what they preach a person should be. I want them to do what they say otherwise I feel like they are temporary and fake. I want them to put their money where their mouth is and practice what they preach.
The church's policies are implemented based upon interpretation. No one is perfect except God and he doesn't live here. My church is run by imperfect people who I thought tried to do their best, and some do, but some don't. The ones that don't say helpful things, instead make people feel guilty or they offend people by their unkind acts and words. I can see why some people get offended and leave the church - because while the principles are perfect the people aren't.
A person thinks the healthcare system is fine - until they have a need and don't receive the care they expect. The same is true for my church. It's fine as long as a person is well. When that person has an ongoing need that doesn't get helped it causes them to feel confused, then hurt, then to want to broadcast the injustice to the world.
How will a problem ever be fixed when the person who discovers it is cast to the side and the problem is swept under the rug? The problem has to be faced otherwise it will remain a problem.
3 comments:
Jade, I love you! Just know that sometimes people are not quite sure how to help. Yes, people are so imperfect. But, please know you are loved. I remember a certain young woman in our ward who felt ignored and un loved after her mother passed away, when in reality no one knew what to say or how to help. They didn't want to make things worse. And sometimes people feel bad because they just don't know how to relate, so they feel it better not to say anything at all. I know this... having Christopher has taught me alot about people. I am so glad you are expressing your feelings though. So many people just keep it inside,and that only makes it worse. You can be a great example of compassion. people need to learn to have more compassion just as our savior did. I love you Jade. You are such an amazing person. I hope you know that.
Jade, I'm a little bit confused. I'm wondering what prompted this post since I spent three hours over there helping you yesterday. I know there is a lot more to be done, and that must be so frustrating for you. I'll help when I can, but I too have my limitations. I hope that Per and Andrew are giving you the support you need. Please know that you are loved! You are facing HUGE challenges and every little task should be considered a major feat. Give yourself a big high five for getting out of bed. Give yourself a knuckle bump for getting dressed. You deserve a big slap on the back for pouring yourself a simple bowl of cereal and putting away the dish when you are done. It's no small thing. And some days, if all you are able to do it breathe, that's okay too! I enjoy your company and love to visit you and/or help with your home. I hope you know that.
My blog is not positive nor happy but it's true and how I feel. I know that sometimes people don't know what to do or say. Perhaps they don't want to offend. But a person can never do wrong when they do something nice. I know that people have limitations. I'm not a slave-driver and don't expect people to do what they can't. I just hope that people will do what they say they believe.
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