Many days I sleep most all day because of being mostly unable to sleep at night. I can't work consistantly enough to have a regular job anymore, can't do housekeeping, can't cook (can't eat anything much, nor do I have energy to do anything), can't drive a car, etc. I watch tv, play computer games, make the message board/email group "rounds," and sometimes am able to be awake long enough during the day to get something constructive done (necessary phone calls, etc.). Oh yeah, and there is the pretending to be hungry so I can get my one meal down (Lyme-related gut dysmotility messes with apatite and causes problems with nausea, constipation, malabsorption, etc.), taking meds either through my feeding tube or via my PICC line, running the TPN (IV nutrition) and hydration, etc. I get out of the house for doctor appointments, lab draws (my PICC is misbehaving for blood draws...), pharmacy trips, and the occasional grocery store trip, but these outings exhaust me and I usually wind up taking a nap after getting home. I live in sweats because jeans are incompatible with the feeding tube when I sit down. Sometimes I'm able to go hang out with my Mom - we talk a lot. My Husband has been extremely patient and understanding about
our very messy house...he works hard and tries to do a few housekeeping duties on weekends, but his energy is limited too because of his medical issues as well. It's a good week when the vacumming, lawn mowing and laundry all get done...
Do I feel guilty about
this? Yes. But I also know my job right now is to get well so I can return to some of the things I used to be able to do (such as work, exercise, etc.).
Do I get down in the dumps sometimes? Yes, I get really tired of being stuck at home all the time. I get tired of being tired all the time. But I've also started seeing some improvements, both physically and mentally, and this is very encouraging. I also find hope in the stories posted here about
those who have experienced improvement from treatment. And my Faith helps a lot, too, even though I can't go to church (I'm immune compromised, thus I tend to pick up every cold/flu going around when I go to church or go out & about
regularly). I know my faith doesn't depend on being able to go to a specific building every week.
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds: Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.