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Old 03-22-2015, 07:52 AM
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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This comes up so often, it really is a measure of how isolating chronic illness is. We have a painful, debilitating, often progressive disease and the need to be understood is overwhelming. The likelihood of actually being understood is minuscule.
I am in pain all the time, even with a decent medication combination, usually a 3 or 4 on that silly pain scale. It is bearable but it makes one hesitate before getting up to go in the kitchen, getting out of bed, taking a shower, getting dressed,leaving the house. Every action gets weighed -"is it worth it?" Everything takes a ridiculous amount of energy and willpower. I know I make faces sometimes when I start to walk, it hurts to unbend myself from the car and get on my feet, the pain subsides a bit once I get started and comes back later.
My husband wants to fix things. He can't, but a good massage of my legs feels better for a little while.
I agree that you need to let your husband know that you have a need to talk about it for a few minutes. Then change the subject. Give him a job to do for you, something concrete.
I have friends over ever week so their teens can hang out with my son. They see how I am. When they ask I tell them and change the subject. One of them cleans for me which helps so much so she knows more about how I am doing. My kids are largely in denial because they need me to be there for them. My youngest, 16, who has had major orthopedic surgeries, notices everything and over empathizes. I try to protect him from being my nurse, but he is determined.
Even within my limited circle, and with the restraint I practice, I feel like they all get tired of hearing me complain and yet I still don't feel anyone understands how wearing down this is. This emotional isolation may be the worst part.

Last edited by Susanne C.; 03-22-2015 at 08:13 AM.
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