Possible Inherited Metabolic Illness

I am a 34-year-old independent woman. I am strong and self-sufficient in many important ways. However, I struggle with a possible inherited metabolic disorder (along with my younger brother who was a very sick child and an older sister who is very sick now, both with the same mystery illness). I get an open muscle and skin biopsy next month which will hopefully narrow down the field of possibilities, at the very least.
I have a coach who has been helping me this year to make better use of my limited time (since I lose days when an episode comes on). I volunteer in a few capacities now and my level of fulfillment has greatly increased.
What I struggle with, and feel a great deal of shame over, is my terribly messy house. While I get better all the time with the help of my coach, I find it very difficult to keep my house in order when I am so sickly. Tidiness was never a big talent of mine, to begin with.
I find it so frustrating how all of the help and advice out there is for either lazy/disorganized people (not my problem) or how to adequately delegate to family members (which I don't have).
As well, I find it frustrating to have an illness that is so abstract and difficult to quantify. I have a geneticist and an internist who take me very seriously and I know I am blessed. It is hard for me to get the support I need from others in my life, though. Other people my age have families ~ so they don't want to help. For instance, I will be all alone after my surgery next month. Even my married coach insists that she has friends who will help her the same as if she were single, and I feel really dubious about this. I think the friend of a happily married person carries less of a burden than the friend of a happily single person. I am more absolutely vulnerable in my need, so close to falling into oblivion.
As well, I am strong. I just am. People expect me to muddle through on my own, and I do ~ I always do.
I wish it wasn't such a struggle for me, leading to a life in a house that resembles a teenager's bedroom. I get a little better all the time, but even so it is painfully slow going.
I feel very ashamed about this, even though I have every reason to be proud of myself for my accomplishments and the fulness of my life in spite of my illness. Yet I feel utterly humiliated and can never have visitors to my house. And this just makes it harder for me to get the support I need. . .
Mavety Mavety
31-35, F
Sep 9, 2012