I've wanted to write about this for a while but, in all honestly, writing may be something I do well but it isn't always an enjoyable experience. At the same time, I haven't wanted to write this because reading what I write just makes me cry and despair that this nightmare will never end. And that is what it seems like: a bad dream and I can't wake up. Except this really is my life and I never thought this is how life would turn out.
Some people know exactly how life with a chronic condition works. Others have no idea and no frame of reference to understand. That's true for just about all of human life. I am writing this to try to give a description of how my life works now to those that love me.
First, what are my conditions? There are a few. I have a disease called Primary Biliary Cirrhosis (PBC). It, in turn, spawned hepatic encephalopathy. I have residual neuropathy from a severely herniated disc in my cervical spine as well as older nerve damage from herniations in my lumbar spine. So what does that all mean? I have a failing liver, a fuzzy brain, chronic fatigue, and chronic pain/hyperattenuation of nerve impulses (when it's not severely reduced sensation).
So what is this thing called PBC? It isn't necessarily an autoimmune disorder (it doesn't fit all of the established criteria for an autoimmune disorder in that this doesn't affect kids, is not only nonresponsive to steroid bursts, it is strongly contraindicated). This disease is a genetic disorder with an environmental trigger. There is a statistically significant correlation between this disease and Type I (often called juvenile onset) diabetes. Both of my sisters have Type I diabetes and I have PBC. No, no irony here.
Whatever, this disease caused the bile ducts in my liver to slowly harden which reduced how effectively the liver delivers bile to the digestive tract. And, go figure, liver bile is actually toxic to the liver. The disease causes severe and often intractable fatigue. It also causes severe itching throughout the body but, given the nerve damage I have, this isn't as big an issue for me as it might be for others. And another joy of the disease is that I have hepatic encephalopathy, which is brain dysfunction especially in the areas of memory, executive function, and decision making. As if liver disease wasn't bad enough, I get to have a melting brain as well.
I don't have much of a short-term memory. If I don't write something down, I probably won't remember. That's a problem if I agree to an appointment or to do something and didn't write it down, because I usually forget and then am quite embarrassed and often ashamed of my forgetfulness. I always had problems remembering names of people I've met. Now I forget the names of my lovers and friends. I cannot go to the store without a shopping list. I usually have to make lists of household chores I need to do because I forget what I'm doing.
Oh joy. Oh rapture. Oh bliss.
What does the nerve damage mean? By and large I have reduced sensation throughout most of my body. In most cases I retain protective sensation but I usually can't feel my feet, sometimes can't feel my fingers. As a result I have a hard time staying warm or cool and find the experience of warming up or cooling down to be uncomfortable to downright painful.
My legs have had the most damage and the most reduction in sensation. By and large they are numbish to numb and I sometimes have problems with walking and falling because I can't always lift my left foot up enough for a normal gait and sometimes I trip over the smallest bump. I find it's bad enough when little kids fall, it's downright freaky when adults fall and falling is something I worry about and hate when it happens. I've also discovered my legs and lower buttocks can easily be overstimulated and go from dull sensation to hideous reverberating pain with one smack. Stubbed toes and banging my shins on anything are hell in my world. The pain becomes bright, fiery, and seems to get stuck in a feedback loop. It takes me several minutes to recover from simple bumps. And impact play in areas other than my back and upper buttocks just cannot happen. The pain is simply too overwhelming to process during play. It stopped being play and has become something to try to live through. Much to my despair.
My balance and strength has suffered too. I don't always have effective proprioception (knowledge of where my body is in relation to up, down, left, right. Some days I can maintain my balance when I close my eyes. Other days I fall over. I am grateful that I don't always need a cane to help me keep balance or remind me which way is up or down. And I no longer fall every day (which was the case before surgery). I still have problems if I stand up too fast upon getting out of bed (yep, get up and then fall right over). Going on a walk is not very fun for me because I spend a lot of time trying to make sure I walk in a straight line and not trip over anything that might be on the ground/floor
Then there's the fatigue. It is pernicious and invasive. I used to have some days where I felt very good. Normal. Effective. Capable of doing what needed to be done. Those days are over.
I am always tired. Even when I get up, I still feel tired. The days where I feel near normal happen very rarely now. I have ridiculously reduced stamina. Seemingly easy things, like taking a shower can either invigorate me or send me to bed out of sheer exhaustion. I find I don't like large supermarkets because they are just too big, too much to process, and too exhausting to walk through.
I can work, but there isn't much more that I can do than work, if I'm trying to work a 40-hour work week. I can get up, get dressed, and go out the door to work, but what I can't do is maintain basic cleaning, cooking, or any social activities. I work and I sleep. That's about it. Color my hair? Unless I can summon the energy to do it the night before going back to work, it's not going to happen that week because I simply do not have the stamina to stand in front of the mirror making sure the color distribution is even.
I work less than 40 hours a week so that there's a fighting chance I'll be able to clean the kitty boxes, sweep and mop the floors, cook for for me as well as the kitties, and do laundry (which includes folding and/or hanging up clothes, not just washing and drying them), cook, and clean dishes. It's much harder than you'd think to find a part time job. Many jobs require a lot of standing, which isn't something I can do well. Or there's a lot of lifting, which is also another thing I cannot do well. Lifting kitty litter just once is hard enough and wipes me out; lifting isn't something I can do on any kind of sustained basis.
What do I do to make sure I function? I take my painkillers as religiously as possible. I may not actively feel pain, but my body knows something's wrong and controlling pain, even pain I don't feel, gives me more energy. Yep, I take painkillers and get a kind of energy boost from it. I also use stimulants to keep me going. That's a very tricky balance to try to maintain. Too much stimulant and I forget to take painkillers or eat, both of which will cause a flare that puts me in bed for days trying to recover. If anything, the stimulants cause a slight increase in my forgetfulness so I have to make lists for the days I use something more than coffee or soda to boost me.
I hoard my energy. I keep waiting for days when I feel “good” to do stuff. Sometimes I choose poorly and do too much in one day or sometimes I miss out on stuff because I just can't quite get everything in gear in time to go out. I cancel stuff at the last minute.
I cry. A lot. I wish things were different and they're not. I want things to get better and they don't. Medication is both a blessing and curse. It can fix some things but damage others. And sometimes all my meds can do is keep things from getting worse.
It's a lonely and often scary experience and I don't wish this on anyone else.