Hi Glass Halffull,
This is hands down the GREATEST SUPPORT SITE - especially in regards to support for those of us who have had to learn that defining normal - is an everyday event. It was such a long and lonely struggle to accept this disease, and I personally, felt a deep need to be able to communicate with a much larger community of sisters and brothers who have walked this lupus road before me. There have been so many times when I too, was frustrated, confused, scared, I just didn't feel right in the world. We are a very special group of people, we learn that normal isn't what you look like - it isn't how fast you can do something ; it's a normal that many others will never understand. Not because they don't want to.....they don't know how; and not because of their lacking...I don't know what it's like for a parajumper to jump from thousands of feet in the air....but that's how I compare every morning when I wake up. I'm traveling in this jumbo jet of life, the hatch has opened (new day), I check my chute (meds,diet,meditation); put on my helmet (courage, and lots of patience); I pull the ripcord (determination, attitude, acceptance) and once I've placed my feet on the floor and soar through the day.....I'm free falling from minute to minute....and my soft landing at the end of the day comes when I am home; playing my favorite music, doing some stretches, meditate......check in with friends and family via phone or make arrangements for visit.
And my tub is my best soothing source to find my time to take care of me, soak my worries away.....and when I pull the drain; so do the worries of my day go....right down the drain; and then God and I have our fireside chats together; there is nothing better when you know whose you are and that He hears your every prayer; knowing that when He makes a promise - he keeps his promises. When God talked to Jeremiah, when Jeremiah was just feeling absolutely hopeless, confused, and wasn't sure what to do with his life.....God spoke to him and said: "For I know the plans I have for you, plans to prosper you and not to harm you; plans to give you HOPE and a FUTURE; and when you search for me, you will find me....and I will give you peace".
I have discovered that through our times of trial that we are confronted with decisions we wish we would never have to make; or make changes we don't want to do.....but I tell you this my friend, take heart; you have a WORLD of friends here that are willing to stand with you when you're not feeling strong; and the Dallas Cowboy Cheerleaders have nothin' over this group....hands down, you know you have the brightest, the best and the most encouraging group of friends here. So keep sharing, keep hopeful, keep in touch.....and there will come a time when a new person comes on board; and you'll be able to share your learned wisdom with them.
If I could share with you my thoughts about work; it would be this: most people can't understand what they can't see....they can't feel compassion if they've never been hurt enough; they can't extend a hand...if they've never had someone reach out to them. I choose compassion for those people. I completely understand your frustrations about work; it is aggravating at best. BUT DON'T LET IT CONSUME YOUR LIFE !!! There is too much living to do, to allow this group of folks to invade your time like this. Turn off...the work button when you walk out of that door. I promise you this, at the end of the day....IT IS ALL ABOUT YOU, protecting you - protecting your heart and body...and last but not least you mind. I have learned so many wonderful and valuable life lessons from so many people on this sight. It has helped me tremendously to know that what I suffer physically, spiritually, emotionally....can all be shared through this community of sisters and brothers; a burden I gladly lay down because it can become too much to bear alone. So take heart my friend, take time to take care of you - that's most important !!!!
You have earned the right to define what YOUR NORMAL is....not anyone else. If you have to take different measures to achieve a goal expected of you....so be it; as long as you find a way that works for you. "I now have to carry a steno notepad everywhere I go - .....I just introduce my friends to my new brain....people will respect you more for what you are doing for yourself....and doing it with grace enough that they will never know the challenge it took for you to be in "that place of peace". Stand assured, that the measure of a human being is much more than that measured on a time clock at work. Let work, be a part of your life....just a part; allow yourself time for the simple joys in life. There are many to be found.
Stay encouraged, be hopeful and have faith that tomorrow is a new beginning....yesterday is done. So soak your worries away, and we'll talk another day.
"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown