hello to all!

thank you so much for writing! i do know how hard it can be to muster the energy to respond to emails, phone calls etc, so your being able to write this note means so much to me. i started to cry when i read it. i've been feeling so incredibly alone in this process and to read your positive, supportive, encouraging, welcoming, and hopeful words meant so much to me. truly, thank you.

franky, i am sorry to hear that you've had a rough couple of weeks. wow, do i know what that's like! how are you feeling these days? how long have you been sick? where were you living and traveling before you became sick? what are your interests?

i too have been feeling really ill for the past 7 weeks with what feels like a viral infection (sore throat, swollen glands, headache, fatigue etc) and have been completely laid out. i am doing the SHINE protocol and reference dr. teitelbaum's book like a bible (from fatigued to fantastic). i've had two visits with a specialist who focuses on this particular protocol but my second visit was a disaster. i'm now back to square one with trying to find a new phsycian to help me and feeling new lows of discouragement.

i relate to what you were saying franky about how long you lived your life with your illness. before i became disabled from it, i was working with youth in the child welfare system in a really intense environment. after every day (which albeit, some were more than 14 hours long!) i basically had zero energy and needed to go to sleep at 7pm or 8pm each evening---almost every weekend i needed to forgo invitations with friends because i was too tired or sick (and i was always sick!) during the two years i worked in this capacity,  i saw my doctor many times and said that i thought something was wrong with my immune system. he said i wasn't used to california germs because i was from the east coast. he said i had a stressful job. he said it was because i was working in a hospital. my blood work was normal. i just kept going. until one day, my body said, UP NO MORE! being where i am today having learned so much about this disease, i see now that it was always my cfids, but i was able to live my life (minimally) and function at work with not much else left. i fear that i may not be able to return to the work i was doing before because it was so incredibly intense and stressful.

i have experienced so much loss from this disease that it is painful to think about.

i also relate to what you shared about your partner...my relationship has gone through the same trials with the same outlines. my partner still struggles with my limitations and tries to find the balance between feeling his own feelings of disappointment, sadness, anger, and helplessness and taking care of me and supporting me. we sometimes need to remind ourselves that we are not each others' enemy and are fighting the same antagonist: cfids.

i am a deeply spiritual person and on my path to healing i've worked actively on the spiritual components of this illness alongside the physical and emotional. i beileve that everything happens for a reason. in my moments of despair i lose the compass with this tenet and drift out towards hopelessness and fear. i began to fear that i would never get better and the more discussion boards i read the more i was seeing that everyone is seeking the same things: to find the best doctor to help them, to know what works and what doesn't, to heal!  it was in my lowest moments (recently) that i realized i needed to find other people and connect with community. i'm so grateful to have found good people. i can't wait to meet you all.

thank you for your advocay. i share your passion for helping people (previously that has taken the shape of social work but who knows how that will shift...) and i have felt tremendously uplifted from this one note alone. i look forward to checking out your blogs etc and even more so to meeting you.

with love and light,

~ariyele