* To maintain friendships I need to be very honest, and also to make the effort to get in touch when I am feeling well. Some people no longer contact me as they fear they'll disturb me on a bad day, so if I want to stay in touch with them then it's up to me to make contact. I also need to say when I'm too tired, otherwise my tiredness will be perceived as lack of interest or irritability etc.
* I have very little contact with former friends who cannot accept the limits my condition puts on me and so have a history of coming over or taking me out and exhausting me.
* I also have very little contact with friends who don't take initiatives to contact me, as I only rarely have the energy to make contact with them.
* I maintain social contact by having friends and family over as often as I can, as this takes much less energy than me going out places. We have explicitly budgeted for the extra costs of feeding all these visitors with money that might otherwise have been used on movies or eating out.
* I meet new people by encouraging my husband to bring home people he meets through his activities, and also by having the occasional short term homestay. We only have women to stay for reasons of my safety.
* We have a housemate with whom we share ownership of our house 50:50. This was done for financial reasons, but it also broadens my social circle through having another person with whom I spend a lot of time and also enabling me to get to know her friends and family. It also enabled us to have a larger house where we can have people over and people to stay.
* I find having people to stay both good and bad. It's bad because such visits take a lot of recovering from but it's good as there's less pressure to make the most of every minute that someone's around: we can chat for five minutes then I can rest for an hour or two, knowing that they'll still be around when I'm up for some more contact.
* I find it important to continue to give as well as to receive, even though I'm so sick. I do this by sewing presents for people and putting a lot of effort into remembering people's birthdays; to endeavour to be a supportive listener and to pray for my friends and family and to take their problems seriously; to make our house available for people such as international students who need a haven and to take a consistent interest in two little girls in a sort of 'godparent' role. This also helps to alleviate the pain of not being able to have children due to my complete physical and mental inability (currently at least) to take care of them and the amount of my husband's energy my own care takes up.
Heather
October 2005