Posted 4/14/2012 2:25 PM (GMT 0)
Wow, this is a great question.
Personally, I don't know what I would have done without my husband geeing me on, letting me know he thought I was giving into the disease, and being pleased when I was able to do things.
Honestly, some of his expectations were very hard for me to deal with but there is no doubt that they kept me afloat.
And he has balanced that with understanding when I did reach my limits. He has picked me up when I've fallen, opened things for me when my hands wouldn't work, and explained to people what I was trying to say when I lost my language skills. He has easily stopped doing these things when I no longer needed that kind of help.
Being the main support person for a Lyme patient is very tricky. Each day is different and there is no way for them to understand the kind of pain you are in. Geez, the only way for them to get that is to experience it themselves and you wouldn't want that for your loved one, would you?
I think what helped my husband and me the most was for me to speak frankly about how I was feeling. No whining or drama just a good description. Like "I would love to be able to go out on the boat with your parents but I am afraid the screaming would scare them." Or "I am hurting a lot, I will try to come for a walk with you but I would like to know that it's okay to turn around and come back if I have to." Or, "Today the pain is like 10,000 fingernails going down 1,000 chalkboards has been wired directly into my spine. I'm finding it difficult to do anything."
Both my husband and the rest of my family have been very supportive of my use of painkillers so that I can do things with them. No one seems to think that there is any merit in pushing through the pain. Honestly, so often you try to push past the pain and there is just more pain on the other side! While you may not be doing yourself any particular damage physically, I think it mentally and spiritually it takes a toll.
In defense of your girlfriend's position, I will say that doing something, anything can be a great distraction. Also, doing nothing and allowing yourself to get paralyzed by the pain can be a downward spiral and lead to more pain.
So, in a nutshell; if you can do it do it, if you think you can, try, and if you can't, say so and keep your humor with you at all times!
DoDistractions can be good for pain relief