Linzi, I am so very sorry you are going thru this pain. The advice you got on dealing with the loss of your previous self is totally on. :sad:
We would mourn a friend who had died or was no longer with us. Well, my dear, your "BL" self is gone. Let her be in the past and work to develop a "AL" self. You can enjoy the things she did, but YOU are not able to do those any more. [BL=before lupus, AL=after lupus]
My BL self was a AAA compulsion person. I worked full time, did child care thru an agency a few nights a week as a former room mate had left me owing his bills, I went for my ski instructor certification and passed, taught a season of skiing on both weekend days, and was taking pre-req classes at night for entrance to nursing school. I had been accepted into 2 schools. Plus I was training my American Saddlebred mare.
My AL self had to learn to enjoy more simple things, my animals, gardening - before 10 AM and after 4 PM, learning to shade garden and developing a portion of my garden for this. I had joint pain, had both wrists in splints to prevent pain, kept a beach towel in my car to protect my arms and hands from sun, learned to appreciate the overcast weather for which Seattle is known. I learned to stop and smell the roses, and enjoy the beauty of things around me.
I got involved with the local lupus society and took to learning as much about lupus as I could. My science background helped me here. I took on reaching out as a resource to help new patients learn how to live with a not so welcome companion.
I learned that just because I have lupus, does NOT mean that lupus has me. Lupus is not my identity.
My father and I still go round.....twenty years later, if I "look" ok, then I must be feeling that too. I realized it is HIS problem to solve, not mine. He has a horrid time accepting that the daughter who was so active and involved is now a different person. That daughter has had to learn to live differently. He worries about what will happen to me if and when he is gone. :worried: Will I be able to look after my mom and myself? So, I had to let his inability to accept what is now my life, be his problem, not mine.
Perhaps these fears are also with your own family. If so, bring it out in the open. The best way for healing to begin is to voice our fears and concerns.
I now use 4" of foam/memory foam pads on my bed. I cannot sleep on a standard matress as it hurts the fibro pressure points. By suspending on the foam, I relieve the pain and can get a good night sleep. Funny thing is, my mini dachsies LOVE my soft cushy bed.:rotfl:
I learned that if I kept a journal, that by putting down what I went thru in the day, I could let go of it.
Hopefully you can pick up a few survival hints. Let your family problems stay there. You can only do what you are able to do. Nothing more, nothing less.:hehe: