Thank you for sharing your experience with IBM. I to have IBM and recently spoke to another person with a different rare disease called Kennedy disease, it mimics ALS as does IBM. The call was coordinated by my Lymphedema therapist who thought it would help both of us to share our experiences since we both had similar symptoms. I found this helped me by helping someone else plus it helped him understand he was not alone in his struggles. We both found it beneficial.
Since moving to Florida from Maine my Seasonal Affective Disorder has lessoned a great deal. When I start feeling a low place coming on because of my Inclusion Body Myositis...the best remedy for me is to play my piano a bit. Play the old church standard hymns I use to play in church when I was the music director. I get lost in a good book or watch a happy movie. Especially the old classics. I also turn ON all the lights in my house. And of course there is always a prayer on my lips.
Thank you for opening up and sharing the difficult parts. I have found for me that suffering in silence only favors the darkness and feelings of isolation. Praying for you. I would take Vitamin D supplements and take the emotional energy to keep making plans to spend time with others, even when they may not all come to pass. I enjoy listening to Southern Gospel music sometimes or hymns or worship music to remind me that God is always with me.
James you are a beautiful soul! I am caregiver for my husband and I love what you said today, I will share with husband. God Bless you and Merci and your family
@@Inclusionbodymyositis was wondering if you would mind a suggestion. I found you by accident on you tube. I said to my husband if you could change your title to" My life with chronic illness Inclusion Body myositis" The reason why I suggest it I think you will reach more people with IBM. Sharing you life and your journey has been very helpful to us.I hope you don't mind my suggestion. You are very honest about your IBM, both you and Merci.
Hey James, Joyce again, sorry to be a pain. I think you will have to name it Inclusion Body Myositis. When I search I got the company. IBM I believe when people type in " Inclusion Body Myositis" YOU will come up. You will definetly be an inspiration to many people.
Thank you for sharing your experience with IBM. I to have IBM and recently spoke to another person with a different rare disease called Kennedy disease, it mimics ALS as does IBM. The call was coordinated by my Lymphedema therapist who thought it would help both of us to share our experiences since we both had similar symptoms. I found this helped me by helping someone else plus it helped him understand he was not alone in his struggles. We both found it beneficial.
I was told I had ibm in 2020 it will get you down if you let it keep your head up one day at a time is how I roll
Since moving to Florida from Maine my Seasonal Affective Disorder has lessoned a great deal. When I start feeling a low place coming on because of my Inclusion Body Myositis...the best remedy for me is to play my piano a bit. Play the old church standard hymns I use to play in church when I was the music director. I get lost in a good book or watch a happy movie. Especially the old classics. I also turn ON all the lights in my house. And of course there is always a prayer on my lips.
Thank you for opening up and sharing the difficult parts. I have found for me that suffering in silence only favors the darkness and feelings of isolation. Praying for you. I would take Vitamin D supplements and take the emotional energy to keep making plans to spend time with others, even when they may not all come to pass. I enjoy listening to Southern Gospel music sometimes or hymns or worship music to remind me that God is always with me.
@@svenmaakestad3058 so good to hear from you!! I love praise and worship music! JOY COMES IN THE MORNING!!!
James you are a beautiful soul! I am caregiver for my husband and I love what you said today, I will share with husband. God Bless you and Merci and your family
Thank you so much!! Blessings to you and your husband!!!!
@@Inclusionbodymyositis was wondering if you would mind a suggestion. I found you by accident on you tube. I said to my husband if you could change your title to" My life with chronic illness Inclusion Body myositis" The reason why I suggest it I think you will reach more people with IBM. Sharing you life and your journey has been very helpful to us.I hope you don't mind my suggestion. You are very honest about your IBM, both you and Merci.
I will do that!!! Thank you so much!!!!
@@Inclusionbodymyositis Blessing James and Merci
Hey James, Joyce again, sorry to be a pain. I think you will have to name it Inclusion Body Myositis. When I search I got the company. IBM I believe when people type in " Inclusion Body Myositis" YOU will come up. You will definetly be an inspiration to many people.