My participation in the discussions on this website has provided some very revealing thoughts and feelings of those suffering from lupus and associated diseases.
The healthy release of your emotions, coupled with details of your fight against this formidable foe, have engendered a greater compassion for those afflicted with these cruel conditions. I share many of your concerns as I struggled with lupus, interstitial lung disease and bipolar disorder.
With that in mind, here are some observations to ponder:
*** The rollercoaster ride of pain and relief: The pain brought by the list of numerous symptoms, which can come and go for no apparent reason, seem never-ending. But then there are the brief periods of improvement. They offer a glimpse of hope for the future, only to most often be shattered by a return to the prevailing symptoms that so baffle our doctors.
The worsening side effects of various medicines and the fear of the long-term impact of prednisone and other meds don't make the task of coping any easier. Everyone needs to sense a "light at the end of the tunnel," a feeling that a cure might eventually be in the works.
It doesn't help when we sometimes must deal with doctors whose approach appears to be one in which they only 'cover providing only what they feel is required of them at the time, refusing to consider other options, such as new drugs or combinations of such, that might improve a patient's condition.
**Overpowering Depression: All of this negativity can lead to an overwhelming feeling of depression, a frightening state of mind in which the patient sees only increased misery on the horizon. There are feelings of abandonment, resentment and self pity to deal with. Who really cares about me? Who are my true friends? Who can I count on?
Some combat the Illnesses better than others, perhaps due to a more optimistic nature or good news from good doctors. Some continue with the downward spiral, unable to overcome what they anticipate to be only further misery.
**Coping: So how do we deal with this as life unwinds? Coping mechanisms are many, including this well-intended website that allows people to vent frustrations daily. Unlocking of one's emotions is often a good thing. Everyone's approach is different, with the obvious hoped-for outcome of finding a way to function each day and remain as independent, healthy and happy as possible.
I recommend a "bucket list" for those still hoping to enjoy life. Take the time to rediscover the enjoyment of old hobbies that can help occupy time in a fun way. While maintaining a reasonable assessment of one's physical limitations,I feel we should strive to experience some activities we always envisioned as fun but for whatever reason never attempted. This could be something as radical as skydiving or simply traveling to a location you always wanted to see (mine would be ALaska's Kanai Peninsula for fishing). Watching movies redolent of a more cherished time can also be therapeutic for me. It can take you back to happier times.
At any rate, always remember to never give up. There is always hope.