Yesterday we ran a few errands – nothing exciting, just like the post office and library, that sort of thing. It was the first time I’ve been up and about and out of the house doing something other than doctor’s appointments since this all started. It was nice to just be out for a little bit but everything is sadly so exhausting right now. I find though that I’m getting so burned out on being sick. I’m so tired of every conversation, every thought, every action being determined by my health. I feel like I’m not a person anymore; just a diagnosis. And when I’m out around strangers I also feel like a fake, or like I’m acting. I’m just pretending to be normal when in reality, there’s all this going on under the surface…
One of the hardest parts of now discovering I’m too high risk for surgery is that it stretches it out even longer. Yes, I understand why we need to wait and I agree it makes sense. But it just gives me this big, looming question mark of months of unknown. How am I going to feel? What are the symptoms going to be? How will it affect my migraines? How well am I going to be able to function? All of this is just out there and I have no answer.
My boss called me Friday and wanted to know the exact date I can come back to work because he wants to get a temp while I’m out. But the answer is, I have no way of knowing. I know that at some point after the shot but before the surgery (in these next two months) I should theoretically be able to go about my days mostly normal and since my job is low-impact, I should be able to work as well. But I can’t say when and I can’t say if there will be fluctuation in the quality of those days either. I’m worried I’ll have good days and bad and having spotty day-by-day basis of ability to work just isn’t going to cut it. I don’t work enough hours to qualify for FMLA (Family Medical Leave Act which is exactly for these kinds of circumstances where you need to be able to take off work as needed without fear of losing your job) so that leaves me faced with another fear.; a financial one.
I’m just scared of the unknown. I’m tired of being the freak case with the basketball worth of tumors in her. I’m sick of constantly weighing each action on if I can do it, if it will hurt and what the consequences are for every decision. I’m worried about what the next few months will bring. I’m still also overwhelmed knowing surgery is still forthcoming and what that will bring and be like. I am afraid about the meds I have to take, the impact it has on my body, and the long-term ramifications of the decisions I make right now. I’m terrified we won’t be able to pay our bills and that I’ll wind up having to quit or lose my job on top of all this added expense right now. Most of all, I just wish this never happened and I could just wake up tomorrow and go about my day. I just want to stop thinking about being sick and just be normal again. But life doesn’t give you a do-over option and you have to deal with the hand you’re dealt. I’m just already so overwhelmed with it all and knowing there’s months left to think about this…I feel like I’ll go mad. One week in and it already feels like forever…how do I get through the next few months? I don’t know. I just really don’t.