The Northern Virginia
CFS/FMS
Support Group

A. We're glad you wrote. What trying circumstances for you and your family right now... on top of all that was there before!

Your letter is beautiful. It is full of love and support and maturity. Sometimes it is very difficult to know how intense the feeling of helplessness is. Most people can't identify how feeling helpless can dramatically affect relationships and behavior. So your noticing it and asking for help with it is really amazing. You are not trying to fix everything, a good sign. While you two have much to cope with ahead, it strikes me that you have good strength, attitude, faith, and humor.... so you will cope well. Be flexible, too, because big things like this often lead to surprise twists in the plot of life... and those can work out great.... if we are not too attached to what life "should" look like.

Realize in any moment, your spouse is probably already doing all he/she can... with the CFS and all the rest that is going on, everything is a huge effort and already overwhelming. And little things can overwhelm us more to the point of shut down for awhile. Your spouse is probably playing stuff over and over in his or her head about what he/she wishes he/she could do if he/she were up to it... then forgetting it, then remembering, then beating him or herself up over it. So, if your spouse doesn't get to something, you have choices: decide it was important and see if you have to do it or get others to help help, decided it can wait, decide it isn't important, make it as safe as possible for him to try again without fear of screwing up yet another thing.

Being sick, espcially with CFS which is so unpredictable moment to moment, often takes one's confidence away.  Take notice if communication about chores or lack of being able to do them around the house is undermining or bolstering your spouse's confidence. Make it okay that some things don't get done - show you understand it isn't personal. Realize you are being given an opportunity to show acceptance and that you value a person beyond what they do - for a living, around the house.

Find gentle ways of communicating and being together. Watch TV if it is all the one with CFS  can do. That may be the only thing that gets you both through this part. It is possible to be too stressed for other stuff. We once had someone in the group want to place a classified ad in the paper for a TV watching friend who liked the same shows! Help distract your spouse once the calls to lawyers, doctor appointments, or other critical things done. Be okay with simpler meals, or however you have to go with the flow. People with CFS, often do very well with attitude and intelligence (thank goodness), looking more capable than we really are at the moment, but are stuffing so much old and new stress that our bodies are panicking and crying out for help with weird symptoms. Show your spouse love, acceptance, and safety (what anyone wants, really) and help him or her give him or herself those things while cultivating those for yourself. Easy, right? HA! Practice, practice, practice.

Go easy on yourself, too, especially now.  You need support, too... this is a lot of change and a more than a little scary. Just because you are the 'healthier' one, doesn't mean you won't get overwhelmed, too. Get help from friends, a counselor, the group. Get outside help around the house if you can. You use our tips to save energy, too! 

From all the stress can come new blessings.... eventually.  While you use the energy of worry to help cope with the difficulty in the moment, maybe allow yourself to hope and look for the favor buried in all of this. Cultivate patience. It will serve you both well.

For more, see our Resources section for Carers and Care Givers.