(With thanks to S.K on the Living with Sjogrens site)
Not only is it tough but often unrealistic to expect us to be overly optimistic; it can swing us too far into denial. It’s not easy for those around us to understand our limitations, as we so often push ourselves past what we are comfortably capable of.
It can be a struggle, get you down, HOWEVER, there is something good, beneficial, and uplifting happening in your life that you could be overlooking.
We have a place to vent here, but the very best we can do for ourselves and each other is to keep an eye on the good stuff.
Reassuring ourselves and each other is the key to a support group, telling each other what helps is what a support group is all about. Referring each other to the best Doctors, clinics, and hospitals is supportive.
Each person here is someone’s daughter or son, mom or dad, brother or sister, best friend or child. Help uplift and reassure each one here as you would want your nearest and dearest supported.
Lets help each other find the most comfortable place we can within our body and mind.
Yes, Count the good things, be honest with yourself regarding what you can or cannot do. Embrace and accept your self for who you are as a person, not what you can or cannot do. Dare to be different, real, authentic and loving with your self. Find you Fun, Create your Joy and count and watch for each little blessing every day that comes your way.
Feed your soul with the things that refresh the inner you :) I like "western movies" :) art, music, nature. But most refreshed by just a smile from a "kind authentic person". Wow!!!!!
We are the brave and authentic ones in our life and this world!
Best to you All,
Ranger
- Never give up - Winston Churchill!, Read inspiring stories, I just finished one about Kevin Michael Connolly ("Double Take, A Memoir") of a man born without legs Who did not give up! And I watched "The Butterfly Circus" - WOW what a film!!!
PS: Mint Chocolate Chip Ice cream, Coffee (my true love) also :)
Thank you Ranger for your wise words. I have always ‘counted my blessings’ and I swear it helps on difficult days to actually list - in my head not on a piece of paper on the kitchen table:-) - the good things in my life.
I didn’t think it could happen but I exhausted myself a few years ago. I was just attempting to do what people all around me were doing: working, going to school, studying while half asleep. Now I know what is possible for me and what is not. Success can be a reality if I chose my course in light of my true ability and resources.
It is possible to succeed in a healthy way, and supporting each other is part of that.
Hello all,
Recently even my son asked me a question. That started me to try an write a letter to my family and friends to help them really understand “where I’m at”. I found a top ten list of things people don’t know about narcolepsy and highlited, bold type the things that were especially true about me now. I have one younger brother who calls me everyday and has spent enough time with me to understand "my physical and cognitive/memory issues.
I decided to do this because of the question my son asked me one day. I’ve worked very hard through life - full time job, then running my mini farm/garden/animals/canning produce/heating/cutting fire wood… till 3am. Then going to work at 8am. But that was before being diognosed with Celiac and narcolepsy at age around 58…
My son while I was staying with him had a friend who need some help…
->His question was "do you want to come “help bale hay”…??? My eyes said to him “are you crazy?” And my heart and mind were thinking “I can barely make it through each day now…” I didn’t say it out loud… But later thought I should try to find a way to let family and friends really understand what narcolepsy in my life is now.
Still trying to finish that letter…top ten list for them. One of the ten resonated with me was "we feel like we haven’t slept in 3 days most of the time…
Love to All you brave souls!!!
Ranger
PS: I just saw my “worlds top” Celiac doctor at a conference !!!
He signed his book for me:
"Dear Ranger, Never Quit!!
Dr. …
He was the kindest and most loving soul to me, I love him and his work with Celiac disease! He was the first to, Also Know I Had Narcolepsy!!!
(If you want his name and location send me a private message…)
Your celiac doctor sounds a gem. What a shame that we no longer just expect doctors to be like that.
Ranger, get your son, other relatives and friends to look at this, particularly the little video http://www.narcolepsycataplexyinfo.com
To get an idea of what you go through.
