One step that was suggested during counselling was to write a letter to my family about my illness and what I needed from them. I didn't do it at the time though I should have.
Have you ever thought of writing a letter to your family? Here is a rough draft...fill in what you need for your family and open the lines of communication. Your family is your first line of help and support and the more they know how to help, the better able they are to help.
To my family,
Please accept the days when I am having a "bad day". When I take a day to recover, it is a healing thing for me to do. I am not being lazy or avoiding you, I need to rest. I am just as disappointed as you are when my day doesn't go as I would like or had planned.
When you are disappointed because I can't do what I used to do anymore, don't forget to remember I am too. If you can help me to find new things for us to do together and enjoy, the memories can continue. There are still things we can do together, we may just need to do them differently now.
Have you ever thought of writing a letter to your family? Here is a rough draft...fill in what you need for your family and open the lines of communication. Your family is your first line of help and support and the more they know how to help, the better able they are to help.
To my family,
Please accept the days when I am having a "bad day". When I take a day to recover, it is a healing thing for me to do. I am not being lazy or avoiding you, I need to rest. I am just as disappointed as you are when my day doesn't go as I would like or had planned.
When you are disappointed because I can't do what I used to do anymore, don't forget to remember I am too. If you can help me to find new things for us to do together and enjoy, the memories can continue. There are still things we can do together, we may just need to do them differently now.
My abilities can change because of my illness and it can change from day to day, from moment to moment ...please be patient with me. There may even be days where my pain interrupts an activity and we need to go home or I need to take a break to rest.
Help out around the house whenever you can please. The more you can help around the house, the more time I will have for you. It's true! When my energy is spent doing everything around the house, I have little left for the fun stuff in life. Help me to make time for the fun stuff too. Chores are often painful and I may need you to step up a bit more and do the things that cause me pain. I am not being lazy...I need help and I am trying to avoid feeling more pain than I have to.
If you see me struggling....don't give up okay? Even if I may have....I do need you. Please don't think I can "snap out of it". I can get lost in the pain and negativity. Please be patient with me while I work through this. Please help me to see the good in life. Help me to laugh. Just being there silently helps too.
You don't feel what I do and I would never wish this for you, but please try and put yourself in my shoes sometimes and understand what life is now like for me. Please don't belittle my efforts or put me down. I'm doing the best I can with each day.
Hugs....they make everything better. Sometimes just knowing I'm not alone and that I have support can make a "bad day" survivable. Just don't squeeze too hard unless I ask you too okay?
A chronic illness is life impacting. Life has changed and it has changed drastically. Understanding something you aren't living can be difficult I know, but if you can try, it will help in so many ways. I will try to remember too that my illness affects you and your life has changed as well. Guess we both need some understanding huh?
Knowing you are there means a lot to me. Thank you!
Love you much
Help out around the house whenever you can please. The more you can help around the house, the more time I will have for you. It's true! When my energy is spent doing everything around the house, I have little left for the fun stuff in life. Help me to make time for the fun stuff too. Chores are often painful and I may need you to step up a bit more and do the things that cause me pain. I am not being lazy...I need help and I am trying to avoid feeling more pain than I have to.
If you see me struggling....don't give up okay? Even if I may have....I do need you. Please don't think I can "snap out of it". I can get lost in the pain and negativity. Please be patient with me while I work through this. Please help me to see the good in life. Help me to laugh. Just being there silently helps too.
You don't feel what I do and I would never wish this for you, but please try and put yourself in my shoes sometimes and understand what life is now like for me. Please don't belittle my efforts or put me down. I'm doing the best I can with each day.
Hugs....they make everything better. Sometimes just knowing I'm not alone and that I have support can make a "bad day" survivable. Just don't squeeze too hard unless I ask you too okay?
A chronic illness is life impacting. Life has changed and it has changed drastically. Understanding something you aren't living can be difficult I know, but if you can try, it will help in so many ways. I will try to remember too that my illness affects you and your life has changed as well. Guess we both need some understanding huh?
Knowing you are there means a lot to me. Thank you!
Love you much
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