The Word of Week is Compassion

Compassion is another word of the week. Many times its so important to have compassion. Many times people have chronic illnesses deal with a lot people that just have none for what we are going through. Often times its just plan old not understanding what were going through.Now I so understand what it means to walk a mile in my foot steps. Its also important to have a lot of compassion for our loved ones. Many times they have to see us suffer and it hard for them to deal with. Often times its easy to forget that they are suffering right along with us. Many times its easy to focus on the negatives vibes others give us about our illness. Its important to deal with the postive part of it all, even though its so hard to see.

So with all that said : How have people been compassionate to you while you deal with your chronic illness and how have you been compassionate towards them?

Be sure to my other Words of the Week posts………..

The Word of the Week is Expectation

The word of the week is expectations. I am really bad about expecting more out of myself then I can accomplishment. When I have these big expectations of myself those are the times I fall on my face the worse. Its amazes me how many times I can expect myself to do just wonderful and my lupus makes me fall right on my face.

One day I was all exciting to have a great day on an outing and the lupus knocked me down for the count. I couldn’t even make it out the door. That particularly day I stayed in bed and rested. I was really upset at myself for not making it to the get together. My expectations got the most of me. I hate when the lupus and the chronic pain does that to me.

How many times do your expectations get the best of you? And how?

This is a picture of a field near my home. You see my expectations seem to rise to the clouds when Its not being realistic……………………………………………………..

The Word of the Week is Frustration

The word of the week is frustration. Frustration is something I live with each and every day. Lupus kind of makes things go this way. . There are days where the only thing that keeps me going is my family. It’s the smiling faces of my family or the silly things that my dogs do. My male dog Mason was barking at his retractable leash one day. We had put the leash on the ground pole of our porch and every time he moved it made a whine noise. It was really funny watching him bark at the leash for no reason. You see he tries to act like he is tough. In reality he is just a big baby.

Sometimes the frustration can be more than I can bear. It makes me want to lose my mind sometimes. It’s the wishing that I had my energy back and my life back. Once upon a time I worked as a CNA. Ya, it was a dirty job, but it was a job that I really loved. I was able to take care of others and it made me feel useful. I was doing for them what I would want to do for myself. It’s hard to be in there shoes in some aspects. It upsets me when people complain about there jobs because really they don’t know what they really do have. So my advice to all you that hate your jobs either get yourself a different job or be quiet. I’m sorry I am so blunt about it, but I feel very strong about it.  

What is frustrating about living with a chronic illness to you? Share your story here. I will chose my favorite and write a post linking that persons blog in my post entry. So Share your frustrations here….

The Word of the Week is Economy

The word of the week is economy. It seems like a perfect word to me as so many people are affecting by it. Even people with chronic illness are affected by it. We have to pay more for food, utilities, medications, and gas. The ever raising prices make it so many of us become more and more isolated because we can’t afford to go anywhere. The food prices make it so you can’t afford to buy healthy foods. The gas prices make the food in the stores cost more money because the truckers have to pay more for the gas. It all seems to have a ripple affect.

Many of us chronic illness survivors have to live on a fixed budget that’s already stretched far enough. We begin robbing peter to pay paul and sometimes there’s no peter to rob. People are forced to rely on various charities just to be feed their families, which are running out. The gas prices are affecting the charities because they have to transport the food to food banks. Many people who use to donate to the food banks are not able to because they no longer have anything to donate. The housing nightmare has many people ending up on the street. It’s a shame that people have to lose their homes because our economy is so bad. A friend of mine was renting and the landlord didn’t pay his mortgage so she ended up with no place to live with no warning. It’s stressed in our economy that we should have an emergency fund, but where can you get one if you have no money left over.

I know that I use to be able to live comfortable, but now I’m being forced to pinch pennies to just live. I just wonder how long this nightmare will continue.

How has the bad economy affect your life?

DO you know of any resources to help others, share them here?

Water is the Word of the Week

Water is the word of the week. Water is an important part of my life. I’ve learned to appreciate it more since I’ve been living with chronic pain and lupus. Warm water gives me some relief from my aches and pains. I use lavender in my bath water with some epson salt to help with my aches and pains. Lavender has its way of calming the spirit, so to speak. A hot shower can be great to have warm water run in areas that hurt. Now a days they have all sorts shower heads with different attachments and speed, which is great for chronic pain survivors. It’s important to drink plenty of water to flush out your bodies impurities and to keep everything functioning right. Another reason, I like water is it’s the one way I can exercise and be able to stand it. It does wear me out totally sometimes, so I really can’t win. I would feel like I’ve been ran over by a train for a few hours. Sometimes the water exercises aren’t worth the energy for me because of my low energy level.

Exercise is supposed to help with fatigue, but I’m not totally convinced. Pool exercises are supposed to be good for people with arthritis and people with mobility issues. I’ve seen pool exercises help me some days and make my flares worse another day. Right now I’m not doing pool exercise now because I don’t have access to a pool. The places in my town that have a pool are either in the sun or too expensive to visit. I have a lot issues with sun sensitivity from the lupus. The bright sun gives me headaches or makes me feel dizzy.

Water has its value to each and everyone’s of us. So how does water help you in your life and please keep it cleanJ?

Rest is the Word of the Week

Rest is the word of the week, its something I’m not good at. I have a tendency to over do things and then really pay for it latter. I guess I get a case of thinking I’m “Super Woman or Mighty Mouse”. Its hard living with a chronic illness and understanding what it means to pace myself. I think part of it is enjoying a bit of reprieve. I use to be afraid of the pain, but now it’s a normal part of my life now. The fatigue is not something I think I will ever get used too. I want my energy back so bad sometimes I can almost feel it.

There’s many ways I’ve tried to learn to pace myself and give myself some breaks. I can only do things in small sections. Something one person could do in one day can sometimes take me a week to do. I can’t tolerate my legs hanging down too long or the nerve monsters drive me totally crazy, you get the pictures. Sometimes I have to be reminded to slow down or else. Many times I over do it and then I’m totally exhausted and, feel like I’ve run some kind marathon.

Rest is a definite struggle in my life and it’s something I have no choice, but to do. Many people have different ways of resting. Some people walk a little then have a seat and other times people find the nearest wall to have a rest.

How do you manage your time and allow sometime for a rest- Share your story…

Aspire is the Word of the Week

One of the things I aspire to do is to raise awareness of living with chronic illness. One of the main tools I’ve used is this blog and being open about living with lupus. I aspire to help at least one person understand chronic illness. Many people do not understand what it means to live with a chronic illness until they walked a mile in your foot steps.

Another thing, I aspire is to be the best parent I can be. Living with the chronic illness has changed this role in many ways. I am not able to run like my daughter would like me to do. My energy level only allows me to “run” one errand in a day. When we went to Menards I felt really exhausted before we entered the store. I felt like I’d run a huge marathon. I have to depend on my partner to pick up the slack where I can’t keep up. My memory is not what it used to be. I aspire to have more energy and be a little more patient and understanding with others.

One person I think is an aspiring person is Montel Williams. He has MS and has continued to work and raise awareness on his website. I could go on about the many people I’ve seen as aspiring.

Everyone aspires something different. One person may aspire to be a doctor and another may aspire to be a graphic designer. It doesn’t make either one right for everyone. It just means that they each had their own aspiration and need to work in that direction. Each of our aspirations makes us an individual.

What is your aspiration?

Perseverance is the Word of the Week

Perseverance was a word I was thinking about the other day. I thought about the ways I have perserved thru the many aspects of my illness. I have gone from being afraid of pain, to being able to accept it being a part of my life. If I don’t wake up in pain I wonder where it is. For those of you living with chronic pain, or another chronic illness you understand exactly what I mean. I have my days where I don’t know how I will make it through the day. The longer the flare last the more I wonder if my “normal” strength will return. Someday, it’s extremely hard to preserve and other days it’s easier to do. I’ve had to learn to say the serenity prayer to myself and accept things a day at a time.

Christopher Reeve is someone that I admire- God Bless Him. He did so much for the disabled and he was a quadriplegic. He did not let his disability hold him back. He kept plugging away, His wife a great woman who kept plugging away. Both of these people have preserved away while dealing with to different things- One as a person living with chronic illness and another whom was the spouse of a person with chronic illness.

In life, we have to find our own way to persevere. For the baby it may be just to roll over, for the college student it may be to finish college passing all there classes and for an elderly person it is to walk across the floor without breaking a bone.

How do you persevere in your life?

Each week I’m going to pick a word to describe how I deal with living with chronic illness- Make suggestions of a word.