Its been a while since I've written a blog post. I guess its because I haven't known how to put into words what its like not being as sick anymore. I still have down days and flare days but I'm able to be apart of life at this point for about 3-4 days then I need to rest. Its like you have to change the way you view yourself all over again. I think I find myself in the middle of a rebirth and I just wasn't sure what to think of it. I don't see myself as a sick person or broken and I'm not waiting for the other shoe to drop all the time. I guess I'm finding my stride as a parent, a wife, a daughter, a homeschooler, an advocate, as a photographer. I had an acupuncturist ask me once if I could take all the time I am putting into getting better and put it into anything else what would my life look like. I honestly had no answer to him. I couldn't imagine a day without pain or without feeling so horrid that my hope was drained out of me. I think now I could start to answer his question. I still the fatigue, nerve pain off and on, Celiac for life, skin problems and allergies. But I've found my ways of coping. And my husband and I and son we've found our own unique family groove where up keep of the house, groceries, etc. are tackled together. And if I'm toast they step up and help. My son is old enough for some basic chores and we've found our own groove with homeschooling. If you had asked me two years ago how I was doing I would be angry, screaming in my head, crying and upset and feeling so burnt out. Now I'm embarking on helping to setup a non-profit which blows my mind and I am embracing it. I see myself as an advocate and I am getting a chance to see myself in life and work on liking honestly what I see. It truly is a rebirth. Nothing is perfect and I still have days I want to hide from people and just be in a place that's quiet. My photography is my voice and get away.
I am enjoying experimenting with shadow and light and reflections to say what I am thinking. I hope to be able to join an artists collective in the future. For so long I've wanted more than just being the sick person who is a mom. As an individual I have felt like I'm suffocating unable to do somethings that were just me. When I'm flaring and super sick I am unable to communicate or participate in life. I am in survival mode which in my opinion is not living at all. Its like being in a really bad movie that's on pause. You are living minute to minute, hour to hour, day to day. Its radically different to not feel like your stuck in that pattern anymore. Its like Santa dropped by and gave me some extra spoons for christmas lol. I'm a spoonie and I am grateful that I am finding pockets of energy to do the things I love but also things I could only dream of. To see yourself as useful after years of feeling like a couch potato is again radical thinking. Its a paradigm shift. I think the only concern I have now is getting bit by a tick again and becoming reinfected or relapsing to where I used to be only years ago. I still have Bartonella co-infection I'm working on and when I increased my Cat's Claw liquid tincture I am aware that for a few days I need to give myself extra rest as it goes to work. Its odd that I can now set aside time in a sense to be down and out instead of not knowing day to day how horrible I was going to feel. And if I do have a surprise day of feeling crappy I can easily roll with it and find a way to readjust. I have found better and more effective ways to cope with an illness that likes to try and out smart me. And now that my son is older, I can drop him off at his activities like theater and get a few hours break by myself. We also are starting to find some financial freedom. This is the first year I don't feel like we are living paycheck to paycheck which is also radically different and my medical costs out of pocket are less. Now that my son and I are on a similar diet we've also found ways to make bigger batches of gluten and dairy free foods that help stretch our food budget.
I am also finding those friends that know my quirks or when I have brain fog lol, and don't care. I can hang out and not feel a pressure to fit in and look normal. Now I just don't care if I stand out. I am not like everyone else. I will probably have some level of chronic illness the rest of my life. But that's doesn't mean it has to stop me from living my life. I've forgotten my friends name, had to wear sunglasses on a cloudy day in a coffee shop, or asked to meet up at a quiet spot. A true friend rolls with you no matter how weird you are lol. We are all strangely beautiful in our own way. I'm becoming comfortable with this Angele. I kinda like her :)