Living the Chronic Life: You don’t understand

This isn’t nice and shiny. This isn’t about thinking positive. It’s not about Internet memes with serene landscape backgrounds. I’m not looking to sugar coat anything because this is life. Life isn’t fair and this is my life. Mine. I don’t care what you think or what you want to say, you probably don’t understand because you haven’t had my experiences. I don’t pretend to understand your life. I’m trying to be realistic.
You can pretend, you can try to empathize but you don’t get it. You don’t truly get it to the very core of your being. That’s where it matters. You can’t understand how soul crushing it can be to stop and think about all of the opportunities and experiences and potential I have lost. I’ll never get it back.
I’ve had my dreams and life plans taken from me. Stolen. My identity has been changed. It feels like it was overnight but really it’s been very slowly, excruciating so, over days and weeks and years. Some days I feel constantly reminded that I can’t do what I went to college for. I have 2 college degrees but can’t work like I planned to. I had hopes and dreams. I’m not talking about making millions here, I’m talking about wishing I could have my dream job where I’d be helping my community. Helping people. My ‘plan b’ was teaching in a community college. Instead, I’m a professional patient. Sometimes I think about what teaching would be like and I freeze up because I don’t know how much I remember from my education, or if I could successfully do something as simple as answer a student’s question.
No one asks to be sick when they grow up. No one says going to the doctor is fun, I want to do it more often! Being chronically ill is like a full time job that never has the same hours or work week to week. You never know what you’ll be doing, when, or where you’ll be going. You don’t get paid. Your life feels like it’s controlled by someone else, something else. Being a professional patient is difficult. No one is prepared for you. You have to develop your skills as you go and you must for your own survival. You’ll talk to doctors who don’t believe you or think you are seeking drugs.
 I don’t want to take these pills. Naps are nice but not having to nap is nice too. I don’t want to nap so much. I want to take a walk without worrying if I’ll hurt for three days afterwards. I would like to help people without endangering my health. I don’t want to be in pain every day for the rest of my life. I don’t want to be depressed. I don’t want to be anxious about whether time out with friends will cause me extreme physical pain for days and days afterward. I wish I could work instead of sitting at home watching Netflix. I wish I could receive a paycheck.
Some days I’m not sure I even know who I am anymore. Here in America, most people identify by what they do. Jobs or careers are important. Making money is important because it allows you to be independent. I cannot make money. I can only do so much in one day. Going to the grocery store is hard. Driving across town is difficult and painful. On the wrong day or a bad day, just standing in the kitchen and washing dishes is practically impossible.
My days are split up by eating, taking pills, maintaining my body with stretches, and sleep. Chores or doctor appointments are accomplishments. Walking out to retrieve the mail from the mailbox is sometimes a great achievement. Better days are no migraines or not needing any extra pain meds.
My sense of identity, my feelings, my memories, my cognitive and physical abilities – all of these things were changed without my permission. I have very little control over how I’ll feel when I wake up tomorrow morning. Or the next day. Or next week. Let alone next month.
You don’t understand. Not really. Not unless someone or something ripped apart your life, dreams, and identity and patched it back together in whatever haphazard way she, he, or it choose. If your life has been changed by some horrid trauma or event that you deal with every day and you can never really recover, then you understand.

Looking forward and being sick

Or, why I’ve decided to apply for disability.

My health has improved in the past few months, since it started getting worse(r) at the beginning of the year. Much of my week to week, or month to month, life often seems to be taking two steps forward and one step back. (Or one step forward and two steps back.) It’s depressing and frustrating.

In the last month or so I reached an important milestone. I choose to think of it as a milestone. I stopped looking at how I feel compared to how I felt. (I need to make sure my neurologist understand this.) Instead, I’ve started (trying) to look forward. How do I feel compared to how I should feel to be able to do things like work full time, write a book, work in the yard again, or volunteer again.

Ignoring, for a moment, the unknown aspect of all my multiple health problems, I think it will be years before I can attempt many things in life that I used to take for granted — without much planning, preparation, and expectations of doing nothing but resting before or after. The unknown aspect of my health problems means that I don’t know if I’ll be staying in bed – or going back to bed – tomorrow until tomorrow.

The goal that I put first, after taking care of myself, is being able to write a book AND publish it. This is something I can do on my own schedule, around doctor appointments, migraines, and naps. This is not something that pays bills. If I was to go back to work full time, I’d lose access to doctors because I wouldn’t have the time to get to appointments. I’d also lose access to hobbies and increase my stress. All of these things would negatively affect my health by causing more issues with pain and fatigue – among other things. More pain means (more) narcotics. It would also mean I’m more likely to get sick. Getting sick means more doctor appointments and more medicine.

Regardless of what my long term goals happen to be, I now understand that I have to think in terms of years. Half a year, a whole year, two years, etc. Getting sick happened over years, not weeks or months. It’s going to take longer than that to improve my endurance and find my new normal. I’ll probably never be like how I was in graduate school. (That was only 3-4 years ago!)

This is not something that pays student loans or doctors or medical bills that are in collections. It all sounds scary, but at least I can look forward and think about the future now without panicking (much).