We help each other.
As a chaplain I have access to what is called a census sheet for the floors of the hospital. It has the patient's name and what they are in the hospital for (still learning all of the abbreviations) and the notes from nurses for meds and sometimes a little bit of history, etc. I saw fibromyalgia in the notes for one of the patients and made a point to stop by for a chat.
She was soooo happy to see me and talk to me when I told her I've had CFS for 12 years. She had tears in her eyes as we talked and then she had to have a procedure and asked if I would come back - I told her I would try. I was able to go back (when it was time for me to leave my shift...) and we talked a bit more. What a relief to help each other. She kept saying it was so nice to talk to someone who understands.
I had a sad day this week with a woman who had a stroke and told me, "I'm not myself anymore". When I asked who she thought she was now, all she could do was cry and shrug her shoulders.
Those of us here at DS understand what it feels like to wonder who we are when we have to redefine our selves while we live with chronic illness. I've talked to a number of people who talk about ongoing grief from aging, chronic illness, ongoing medical challenges, and so forth.
This woman told me she couldn't find words, she didn't know how to talk to her family, she didn't know what was going on at the hospital, and she felt "more than overwhelmed." We may not have had a stroke, but I think many of us can relate to her feelings. We CAN help each other with our shared understanding.
carry on.
She was soooo happy to see me and talk to me when I told her I've had CFS for 12 years. She had tears in her eyes as we talked and then she had to have a procedure and asked if I would come back - I told her I would try. I was able to go back (when it was time for me to leave my shift...) and we talked a bit more. What a relief to help each other. She kept saying it was so nice to talk to someone who understands.
I had a sad day this week with a woman who had a stroke and told me, "I'm not myself anymore". When I asked who she thought she was now, all she could do was cry and shrug her shoulders.
Those of us here at DS understand what it feels like to wonder who we are when we have to redefine our selves while we live with chronic illness. I've talked to a number of people who talk about ongoing grief from aging, chronic illness, ongoing medical challenges, and so forth.
This woman told me she couldn't find words, she didn't know how to talk to her family, she didn't know what was going on at the hospital, and she felt "more than overwhelmed." We may not have had a stroke, but I think many of us can relate to her feelings. We CAN help each other with our shared understanding.
carry on.
Replies
Wow that\'s a good story Katy thanks for sharing. I used to work in a hospital too before I fell ill. I think it\'s great you\'re able to create some meaning out of your illness too by helping people who are now struggling with similar feelings that come with any chronic illness. I can really relate to the lady who had a stroke and feels like she is not the same person anymore. I developed very bad Bells Palsy 7 and a bit years ago during the birth of my daughter. I lost all the motor function and was totally paralysed on one side of my face for a long time (like to a stroke) and had long term rehab. Similar to ME/CFS, you grieve who you were and redefine yourself over time. It all takes time, and there is no getting around the grief really, you\'ve just got to go through it and the sooner you allow yourself to the more easily you pass through it. At first I did the \"I\'m fine\" but I think I was in shock and also I had a newborn to look after. I also had those feelings of not knowing what was going on in hospital, it was very overwhelming and frightening, I kept saying there is something wrong with my brain, as I\'d just gone from writing a thesis to not being able to even fill out a post natal monitoring sheet of when I last fed and changed my baby. I was doing these things, I just couldn\'t fill the sheet out. I could hear people, I just couldn\'t feel what they were saying. Following this, and before I got ill with ME/CFS I worked at times with people who had had strokes or paralysis and I found I could really understand their frustration but also their overwhelment (is that a word?!did I make that up?). The feelings of confusion and being overwhelmed when you have ME/CFS has often and many times reminded me of that time in hospital, as it\'s the only time in my life I haven\'t felt in control of my faculties if you know what I mean. So yeh, I\'m in the second round of redefining me, bit tricky as I\'m not sure if I\'ll go back to the exact same occupation as it\'s stressful and demanding, so I might have to be creative and see how I can morph it into something still in the field but more suitable. Sorry to journal in your journal. Love to you Katy :)xo.
love your entry as always Katy. I am so glad you are in the position you are in and helping and being helped by these people you are blessed to encounter. It is overwhelming being in the hospital and poked and prodded and getting NO rest (I remember being woken up at like 3 Am to be weighed! Like that was urgent! Well, maybe it was to them) and just because they are up they feel you should be up too! UGH!
As for the redefining parts..well, my journal entry for today is called My \"New\" Normal as it talks about what is normal for me today vs 3 years ago or so.
ah so much more i could comment about here...my own experiences with people who were living in the nursing home my dad was in...how we adapt to the change is really the key I am discovering ( another reason I had a key posted as my profile pic yesterday). It is all a learning experience that is for sure.
I\'m learning too that things that threaten our concept of who we are...those are tough things to deal with. I don\'t care what others say about this, I define myself by what I can do.
It\'s great that you have been able to connect with people in your role as chaplain. Helping others is not only noble, but sustaining to ourselves. I think it is what we are supposed to be doing as human beings. This modern idea that life is all about beating the other guy to the punch is a stupid philosophy in my opinion.
Hi kjfe ..somehow I have landed in your journal..i am glad i have i found it inspirational...God sure led you along your path.....I am grateful to have read this......and i have learnt more about my new friend Jodi too...hope you don,t mind.....helping each other.....you have encouraged me..thankyou