It was more pleasant because they didn't make me feel guilty. They didn't ask me to do things I couldn't do. They didn't belittle me. They didn't question that I was really sick.
Was it great? No. But looking for something positive in a bad situation is one way of not plunging over the abyss.
I didn't feel good having to go isolate myself instead of spending more time with them. I didn't like having to go to bed and regenerate. But they had made me feel loved, and valuable, and that made it easier to do what I needed to do.
I had accepted at that time that I only had a couple of good hours a day, that the rest of my time had to spent resting whether I liked it or not. It was an investment, one that I hoped would pay off one day. I didn't know if it would but that hope was all I had.
So those windows with my family were something I tried to make the most of -- in a relaxed, non-exertional way of course. ;) I would sit with them, usually not saying much, and listen when I could process the words, and just let the sound run over me when I couldn't process.
I would look at them, and see the smiles, the encouragement ... mostly I saw them interacting with each other which I also enjoyed -- rather like being there in a home movie while watching one. They didn't interact alot with me because they knew it wore me out and would send me to bed faster, so ... they were gentle.
Families can accept that the limitations are real. Each chronic will have their own unique set of symptoms and triggers. Families can get familiar with this and do their best not to trigger them.
For instance, don't set your chronic up for sensory overload -- don't have tv or music in the background. Try to keep the noise to a happy but dull roar. Take turns talking, especially to your chronic, it helps the brain immeasurably.
Don't have blinking lights on the tree. Any decorating should have your chronic in mind. Too much visual stuff can send them to bed.
Downplay the commercial aspect, who bought what, etc. Many chronics are broke. Let the love be the main theme.
Families can offer to help the chronic dress, give them a ride, provide a place to rest if away from home. Offer foods they can eat, make sure it's close at hand in case they're hypoglycemic and have to eat often.
Ask your chronic questions. If they're really sick you won't get much of an answer, but if they're able to talk, they can tell you what things matter most to them.
Ask them and listen to what they tell you, and do it.
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It was more pleasant because they didn't make me feel guilty. They didn't ask me to do things I couldn't do. They didn't belittle me. They didn't question that I was really sick.
Was it great? No. But looking for something positive in a bad situation is one way of not plunging over the abyss.
I didn't feel good having to go isolate myself instead of spending more time with them. I didn't like having to go to bed and regenerate. But they had made me feel loved, and valuable, and that made it easier to do what I needed to do.
I had accepted at that time that I only had a couple of good hours a day, that the rest of my time had to spent resting whether I liked it or not. It was an investment, one that I hoped would pay off one day. I didn't know if it would but that hope was all I had.
So those windows with my family were something I tried to make the most of -- in a relaxed, non-exertional way of course. ;) I would sit with them, usually not saying much, and listen when I could process the words, and just let the sound run over me when I couldn't process.
I would look at them, and see the smiles, the encouragement ... mostly I saw them interacting with each other which I also enjoyed -- rather like being there in a home movie while watching one. They didn't interact alot with me because they knew it wore me out and would send me to bed faster, so ... they were gentle.
Families can accept that the limitations are real. Each chronic will have their own unique set of symptoms and triggers. Families can get familiar with this and do their best not to trigger them.
For instance, don't set your chronic up for sensory overload -- don't have tv or music in the background. Try to keep the noise to a happy but dull roar. Take turns talking, especially to your chronic, it helps the brain immeasurably.
Don't have blinking lights on the tree. Any decorating should have your chronic in mind. Too much visual stuff can send them to bed.
Downplay the commercial aspect, who bought what, etc. Many chronics are broke. Let the love be the main theme.
Families can offer to help the chronic dress, give them a ride, provide a place to rest if away from home. Offer foods they can eat, make sure it's close at hand in case they're hypoglycemic and have to eat often.
Ask your chronic questions. If they're really sick you won't get much of an answer, but if they're able to talk, they can tell you what things matter most to them.
Ask them and listen to what they tell you, and do it.
That is a great Christmas present.
Chris, I hope some of this might help.
December 23, 2011 - 9:43amThis Comment
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