…since I’ve felt like writing anything. I’ve given up on this blogging thing for the most part. It’s exhausting and I have a hard time putting my thoughts into words that actually convey what I’m feeling. I’ve been back in Phoenix for about 9 months now and haven’t really done anything… I care for the kids the best I can, go to the doctors, get groceries, and occasionally spend some time with family. Our life takes place within a 5 mile radius – at least 75% is in 900 square feet. I’m at home, always wishing I could take the boys on an adventure – just the zoo would be fine – or “I should get in touch with so and so…” but it doesn’t happen. I don’t reach out unless things are bad medically – something I’m supposed to be working on, oops. There are so many people I want to see and things I want to do but so often I can’t. I don’t make plans because 1/2 of the time I have to cancel or reschedule them. I struggle driving on freeways or long distances and Phoenix is a freeway… This shit is just plain isolating and depressing. Another reason I don’t reach out – I’m not the same as I used to be. Obviously physically, but I’m a spaced-out, stuck in my head, socially awkward (not in a funny way) mess these days. I don’t take the kids to the zoo or the train park by myself because of fears of passing out or needing to get horizontal pronto and being the only adult there for them. I can usually manage quick trips to the store myself because I’ve memorized where things are and the exact pattern I need to walk to get them and get out as quickly as possible. If not – Safeway delivers!
Anyways, if I haven’t been in touch with you since I’ve been back, I apologize. If I have, I’m sorry I don’t reach out more. I want to get out and do things but life has different plans at the moment. I also have a petty confession – I get angry when I see families out and about, spending time doing fun things together on the weekends. Anger makes me withdraw even further into my little world. This is something else for me to work on, just accepting that everyone is living under different circumstances. For the outside world, I try my best to put on a brave face and post pictures that are, for the most part, not our everyday reality… Right now we’re closing in on 1:00pm, I’m laying in bed again (still in PJs), the boys are tearing up the house, not listening to me, and probably pissing off the neighbors… And it’s another beautiful day outside they’re forced to miss out on, filling me with that lovely guilt. I don’t know if I’ll ever fully be able to let go of the guilt. I didn’t sign my oldest up for soccer again because I just couldn’t do it, he’s late to school everyday and come August when attendance becomes important, good Lord – help us. I try to remind myself they’re fed healthy meals 90% of the time, they’re loved, they have a home… But sick or not sick, moms seem to be the best at beating ourselves up because “they deserve better”.
Medically – I’ve been started on saline IVs at home to help with low blood volume (Hypovolemia) and to try to prevent dehydration (fewer ER trips is the goal). I am seeing my geneticist this week for the results of my testing, my neurologist for follow up on the IVs and migraines, hematologist to check on the anemia and slow clotting, and next week the cardiologist. I suppose that’s it.
I lovingly refer to this as “The Picture That Launched a Thousand Shits”:
As usual, this whole entry was sparked by reading an article online about chronic illness and isolation… Found here.
“It’s heartbreaking not being able to be who we are, express who we are, much less care for and love those around us how we once did before the pain. Aside from feeling like we’re a burden or letting others down, it’s immensely isolating being unable to live a normal life.”