It was a busy day today! I did not get as much rest as I wanted :(, but it was still a fabulous day. We started with an awesome service, God truly blessed! We then followed service with a great lunch and I was able to get find a women’s devotional to do at home. Around 5o’clock we stopped by the church and Matt play some sports with our youth. I really hope this is a ministry that I can get started with, I love the thought of being used by God to touch the lives of young women. Lastly today we were able to go watch “Lincoln Lawyer”. Excellent movie!
Sadly though all this took ENERGY!! Now I’m ready to go to bed but I have so much more I “need” to do :). Don’t you love that, we always have things we need to do but at the same time…”do we NEED to do them.”
I’m not sure how valid of a point that this is but have you ever had someone who has a similar issue tell your caregiver, “I know what you are going through?” The reason I bring this is up is because of a conversation I had recently ( I know you love my conversations right??). This caregiver is in a similar situation and was told by an older person (whose family has a similar disease however they were thrown into this world at a much later time in life) that they know exactly what it is like. To some extent yes they do, they know what it is like to have a loved one who experiences this type of disease BUT they do not know what it is like to experience this disease that the age of this caregiver.
I think time of life is important and should be considered when lending verbal support to a caregiver. It was not that the caregiver did not appreciate the support, but the caregiver was a little hurt by the fact that the age and time of life that they were in was a little ignored. Like us, we just got married, we haven’t had the opportunity to experience children, our lives are just beginning….there is a big difference between our situation and someone say in their 40’s/50’s who get diagnosed with this type of condition? Why well mostly they have had a longer time to live life, perhaps have children, concrete their marriage etc.
What do you think? Should we be a little more cautious when lending support to someone? I think we should definitely take a look at the whole picture (age, time of life, circumstances etc.) when we are going to encourage someone. It is easy to lend encouragement but genuine encouragement takes into account everything, at least as much as possible (my opinion of course).
Another thing that I read about over the weekend was the reference of auto immune diseases being known as the “invisible diseases.” I have to say that is a pretty accurate description. Some days you may feel a little less rotten than the day before but on most days you feel pretty rotten. Now that doesn’t mean we walk around looking rotten but gosh people see you up and moving and they tend to expect “wow you must be feeling great to be here.” And inside you are like ” well no not really, I wanted to say go to the mall or church and not sit feeling miserable but obviously when I do the whole world things I’m great and I am not.” It is very hard on people suffering with invisible illnesses, how are they supposed to feel when if they are out and about the world considers them great? Are we supposed to stay at home because we feel that bad or do we venture out but know everyone is going to expect we are doing sooo much better?
Brings me back to awareness!!! We need people to sit down, take time to research our diseases (family and friends) so that way they know that we may get out but our diseases are a daily constant battle and that won’t change, that IS our disease. We need their love and instead of a “wow you must be doing so much better!!”, instead we need a “I’m so glad you got out, you won a bit more today than yesterday!” To me that would make my day to have someone say that to me instead of the automatic…”you must be doing better.”
I guess you see one of my pet peeves, including people parking in handicap parking spaces with out a tag lol! I love my core group of friends and my family that are standing behind me. I love the ones especially who are taking the time to learn about my disease (s) so they know even better how to love and support me! Thank you guys! And for everyone else, I encourage you especially if you know someone with RA, Fibromyalgia, Lupus and multiple other diseases, do your loved one a favor – learn about their diseases! That will mean the world to them!!
Off to do stuff for work tomorrow! 🙂