It's a weird question to answer because to those who don't quite understand the daily workings of life with an illness it makes no sense to them, and I totally get that. After 2 years of being at home in treatment it's difficult to grasp why I am more active but not necessarily back to my old life. So I wanted to shed a bit of light on that question and answer that. Hopefully this can be helpful to some of you guys as well.
When I lived on my own I did everything for myself every single day. I would wake up at a decent hour, shower, have breakfast, take care of my dog, go to work, run errands, do my laundry, make lunch, cook dinner, clean up, go out with friends, etc. The list could go on and on. You know what I mean, all the normal stuff people do from 8am-10pm. Before I moved home I was doing these things but I was killing myself in the process. It took every ounce of energy and I would end up skipping out on important things like eating (I didn't have the energy to cook), or sleep (I wore myself out so much I was too much pain to sleep). I totally and completely was running on fumes, and when I moved home I crashed.
I became 100% dependent on my parents. I am not exaggerating when I said I spent 99.9% of my time in bed during that time. I would get up to walk to the restroom and that's where it ended. My parents cooked for me, and brought the food to me in bed. They did my laundry, my mom washed my hair, they changed my bed sheets, they took care of my dog, they ran my errands, they basically were the only reason I had a life. I might have made it seem easy, but it wasn't. My parents were my absolute life line and basically all I did was lay there and just breathe.
As I have gotten better this role has changed. I began to gain my independence back slowly but surely, and many things I can do myself now. I have even cooked dinner myself which I couldn't do for at least 18 months. I began doing Pilates and creating some jewelry and accessories. I have recently taken on a room re-decoration renovation project and spend time organizing planning etc for it. So yes, I do a lot of things I couldn't do for the longest time. I am much more active in general today than I was a year ago. But I have a secret for you all.. I can do all these "extra curricular" things because my parents still do my basics like doing my laundry, my sheets, and cook my meals. While I do eat dinner downstairs with my family now most the time, I still have breakfast/lunch in bed, and they still take care of my dog. It helps me conserve my energy by them helping me out in those ways so that I can use my energy in places that bring me joy.
So you see, after 2 long years battling this illness I am using my "extra" energy I have now on doing things that make me finally happy, and I can do that because my parents still do the vital essential things for me to make that possible. If it wasn't for them I wouldn't remember to take my giant list of medicines at specific times, and I wouldn't get so many basic things accomplished. And because I still lean on them so much that is the big answer as to why I am not back in my normal life just yet. I won't be able to have my "old" life back until I can complete every last task on my own with 0 assistance or need for rest breaks from 9am-9pm. I need to be able to do this and more before I try to branch out on my own. I need to be able to do this day in and day out for weeks without any setbacks before I will feel comfortable to take the next step. It honestly isn't worth pushing myself and relapsing into a horrible state again. I've been there and I refuse to do it again just to save face or save my ego.
The second reason, which is the obvious reason, is that I am not 100% health wise. My grandmothers intensely & emotionally draining passing really put me back in a big way health wise. I just could not handle the stress. At least my body couldn't. I thought I was handling it like a pro, and then a week later it was a giant crash throughout my whole body. This is definitely NOT a sign of a fully functioning person. Not to mention I still will have a few days where I am doing okay and then out of the blue I have a flare so intense that I am back to my bed bound self in the fetal position unmovable for a few days. It comes as quickly as it goes, and during those times I am more dependent than ever on my parents.
This scenario can go for anyone who has a caretaker, be it a spouse, a friend, a relative, etc. Whoever is helping you to function now is the reason why you are beating this disease. It feels so weird to not be this independent soul like I used to be, but in my heart I have lots of energy and lots of hope. I know where I am at now, and I can complain all day about how awful it is, but when I compare it to my lowest I was ever at it just makes me appreciate that I'm not there. Anywhere but THERE.
So friends, there is the answer. I do a lot more, but I do it because my parents pick up my pieces. I do it with many frequent and long rests throughout the day. But one day soon enough I will do it without having a crutch and I will have my independence back that I miss so terribly. And for anyone else who feels the need to explain their status, I hope this post can provide insight to those who need it.
When you get diagnosed with a chronic illness you turn into a bit of a hermit. Life shifts to a new place where you just focus on getting through the day however possible. You try to get your medicines in, you try to choke your food down, and you save energy for 3 days to shower. When you slowly start to feel somewhat better those moments of clarity are such an amazing blessing, but it's a long road to being back to what people consider to be normal. My fuse is shorter and it burns out quicker. But with each day it's growing, and although the transition is slow it's one that I can see is surely happening.