Hello all you brave and caring people. Thank you to all who have already shared their stories. It's helpful to know that there many out there who are experiencing similar feelings. I'm sorry that we must meet through these circumstances but am grateful for it none the less.
I've been married for 11 years to a wonderful woman whom I share many interests and used to have many great times with. When we were first dating back in 2003, she was very hard working and took care of herself physically, exercising daily. Her only complaint about her health was that she had a really tough time with sleep. Well as many of you must know, if you're not getting enough sleep, it can have a devastating effect on the immune system. By 2007, the lack of sleep had taken it's toll in a big way and other symptoms surfaced. After visiting countless doctors, she was diagnosed with Lyme Disease as well as the usual cast of co-infections in 2008. She had most likely been carrying it around for decades and didn't even know it. We bounced around from dr. to dr. seeking relief from feelings of vice-like pressure in her head, pain in her joints and unbelievable fatigue. She has been in a relay race of treatment protocols ever since and home-bound (largely bedridden) all the time. In March 2016, her main dr. discussed with her that he was not seeing the Lyme anymore (possibly dormant) and suspected that she may be infected with mycotoxins from toxic mold. Lo and behold, he was right. We researched the means for testing and decided to go with a protocol that many had been experiencing varying degrees of success. As a result, we had to move out of our wonderful brownstone apartment in Brooklyn, NY as if we had just had a fire. We moved my wife to our little cabin in the mountains about 3 hours away (where she always wanted to be anyway). She has shown much improvement on paper but not from a clinical perspective. It has been over 10 months, I've been juggling caring for her and making trips weekly to NYC for work. (side note: I have a physical disability and haven't been able to work full time since an accident in 2009). Like many of you, we have seen friends back off and have become a bit isolated. My wife participates in support groups online and on the phone when she's able to. I feel like I'm living in a sort of purgatory between the isolation that I feel at home, the absence of intimacy, the financial strain (most of the dr.s are out of network) and my own limitations. I could really use a couple of drinks most evenings but abstain b/c she is in recovery on top of it all and can't be around the temptation. Ice this with a nice smear of depression on her part and a bit for me too sometimes.
I really feel like I need some kind of toolbox of things to help me to cope. All I want to do is get out of the house as much as possible and feel free. I welcome any words of wisdom and am happy to do the same. Please excuse me if this a "woman only" group. The submission form asked if I was male or female.
Thank you for taking the time to read my story.