I have a blood disorder which changes week by week

Hi What happens if you have a condition that in not visual. I have a blood disorder which changes week by week. I suffer from extreme fatigue due to this condition .  I have nurse come  very week to check blood. my blood results are very erratic .  I asked why would I still suffer from extreme fatigue even if results are up and the answer was my body is constantly coping with constant change. The fatigue leaves my muscles very weak and find it hard to walk at times. There are days when I can't do anything but what if I can only my day of assessment . My condition also has took its toll and has led to anxiety and insomnia . I used to get transfusion every 2 to 3 weeks but recently my blood has not hit my trigger number which is below 30. However how do I explain that while my blood is up I am still so tired. I had my spleen removed to see if it would help my blood disorder but operation was unsuccessful and results fell.again. Recently I haven't needed transfusions but I still have the condition .  it is incurable..  Can you give me any advice please. Many thanks