Hi BJBREW,
Welome to this forum. I am sorry to hear of your condition. One of the major common threads for all of the members here that I have corresponded with is the fatigue we all feel either between transfusions or without treatment. Another is that our "conditions" differ so much from one to another. I gues it depends on what chromosomes are involved or if we have other things wrong along with our bone marrow conditions.
You don't say what part of the world you live in so I can't be to specific but there are many "Centers of Excellence" that specialize in bone marrow failure diseases. Here is a link to a listing of them on the MDS-foundation.org web page:
http://mds-foundation.org/mds-centers-excellence.htm.
Also there is a good article on the mds-foundation.org's home page called "a patient perspective" on the right-hand side that may offer you some help.
So, this is a great place to get ideas from others and support. This is a tuff sickness to deal with. I too, hate it when someone says " You don't look sick..." Hang in there, you're not alone. There are several mediacations that can help as well.
Maybe by searching thru the various threads on this forum you can get a better handle on the situation. Knowledge is power in fighting this disease and helps each of us be our own best advocate.
I am glad you found this forum. Hope it helps some.