I'm a 33, almost 34 y/o female living in Florida. It's taken approximately 7+ years to finally reach a diagnosis. I was officially Dx with dysautonomia (in the form of POTS) in 2021 as well as testing positive for Chronic Active Epstein Barr. In those 7 years, I was also dx with a micro-pituitary adenoma- protection secreting, hypothyroid, PCOS, endometriosis- the whole gamut. I've had surgeries, been on and off a slew of medications with little to no avail. I generally feel like I'm fighting a long, arduous uphill battle with my symptoms most days. I certainly don't mean to sound like I'm complaining, as I know it could all be worse I'm sure, just vocalizing frustration and exhaustion. The majority of my symptoms have become nearly debilitating. At this time, my doctors and I have discussed moving into the "management" phase of my illnesses. At 33, I feel so defeated. My husband of almost 9 years, also feels frequent defeat as we try and adapt to the ebb and flow of what each day brings. Dietary wise, over the years I've been vegan & vegetarian. I've done Keto & Whole 30. Currently, we are trying to start supplementing with high dense nutrient foods, such as leafy, cruciferous greens, celery juice, and just an all out full focus on quality over everything. I do feel weary though. I suppose I'm writing this more-so as a place to share my current feelings of defeat. Hearing words and phrases such as "there is no cure" or "this is as far as we can go with this particular medication" is daunting. To be honest, I feel scared most days. I'm fairly active (to the best of my ability) and try to walk 1-3 miles every other day. I'll also sit on the floor and lift 1-2lb weights for general strength training. Typically, because of my conditions exercise typically makes me feel exponentially worse, but alas, I do it because it's important to me and I know at the very least, it can/might help with my mental health as I move forward and process the emotions related to my chronic conditions. Anyone else struggle with these feelings? What sort of things helped you mentally or physically in the early management phases when your body was in a lot of pain? It's worth noting here that I do regularly see a therapist and psychiatrist for my depression/anxiety management. It was their recommendation that I try to reach more individuals like myself by way of support groups. So here I am, lol!
To compound some of the grief I'm feeling with my health, we also lost our beloved dog of 220.127.116.11 years just before Christmas. He was my buddy and there with me through it all. Losing Finn (our dog) has been very tough. The emotional support and love our fur baby's give us is unconditional, and as I navigate this transition of chronic care, I'm struggling deeply with this loss wishing I could hold and hug him daily. I'll share a picture below of Finn and I when he was still here. 3>