the spoon theory (but you dont look sick)

Thank you so much for posting this! I will pass it to others.

This is the most wrenching thing I have ever read. I am not the one who is sick in my relationship and it is hard for me to always understand what my husband deals with. He not only has GBS/CIDP, but sickle cell anemia. Limititations in life started at birth for him, but GBS/CIDP on top of that? I can see many times that he had chosen to spend his spoons on me and our girls and many more times that he was frustrated because he did not have one left. I think that is a wonderful story and I intend to share it with others. Many people suffer with illnesses that are not always visable with the naked eye. This is a great way of explaining it. Thank you for sharing it.

love it! It is exactly how I have tried to explain to my kids about my jar of energy and what I choose to do with what is in it each day. Sometimes I have something planned for them after school, so I spend the day taking it easy that way I know I have enough to share with them. I hate telling them I have to go lay down or am too tired or dont feel well. I am so glad someone was able to put what we deal with into words and into a tangible explanation.

Next week my boys will be back at school and I will be home alone and happy about it. No bitterness here at all, I just like my recovery largely alone. Not hermit-like but my days will be to myself. I enjoy seeing folks and also like when they happily leave me alone.

My circle has been very good to me. Cleaned out my classroom at work on Monday and colleagues were gracious and kind. They wished me well and said I looked good. I’ll take these comments as compliments as they came with an understanding from them that I am aching inside both physically and a bit mentally (it was hard fully realizing that I’m not going back to work).

I have given up on expecting healthy folks to understand how I feel. They simply can’t. I wont call it insensitivity because they haven’t walked in my shoes. I often wonder about whether I would be so understanding had I not got hit by GBS. I also believe that I have become insensitive to what I feel are people’s minor complaints. I was ready to kick the a** of an artist friend of mine who opined that he would be so much happier in Florence. Prior to GBS I might have been remotely sympathetic.

The people who matter see that I have made incredible gains and I enjoy their compliments. I feel so much for you out there who cannot feel healing. And for those who ‘closed up’ and are fighting to get back I am humbled. As my case is considered ‘mild’ I should be mindful of my GBS/CIDP family who have it worse than me.

We all seem aware that GBS/CIDP has opened our eyes to look at more important things in life and to understand whose opinions matter. I suppose rather than being annoyed by people not understanding my limitations I am frustrated by their not understanding my capabilities. I appreciate offers of assistance but really get p***** off by the [I]insistence[/I] of help. And I am very weary of folks who I feel the need to cheer up because they are so saddened by [I]my[/I] illness. Spare me and feel for the terminally-ill, Chilean miners, Pakistani flood victims, Haitian orphans, women of Darfur, Vancouver junkies, the kid down the street whose father kicks the crap out of him, etc., etc., etc.

I read this story and immediately sent it to my whole family. My parents have always treated me like a “normal” person, like they expected me to be able to do everything they do because they never understood. Hopefully this will help them understand.