I don’t dream lately. I think it is because I am so tired. I am sleeping for 16-20 hours at a time and fall asleep uncontrollably. I sat down on my couch with my laptop earlier this week and woke up several hours later. For many years, I have struggled with the amount of time I lose because of my illness. Hours and days that I wanted to do things and feel things and say things were stolen.
This feels different. My eyes close and hours later when they open, there is no sense that time has passed. I am no longer losing time. That time doesn’t exist.
I am really sick right now. Sicker than I have been in years. I am currently on medical leave and have stepped back from my other responsibilities. I spend most of my time on my couch or in my bed. I have a hard time reading and writing so I mostly watch movies.
I started having unusual symptoms in August but I thought it was because of the heat. When they worsened in September, I thought it was because of the season change.
Now it’s November and clearly something else is happening here. My blood pressure plummets when I stand, fast enough that I actually hit the floor once before I realized what was happening. I have had blistering lesions, mostly on my hands and arms. I am running a persistent fever, waking up in a puddle of sour sweat, and losing weight. I stopped trying to lose weight ten pounds ago. I am now the thinnest I have ever been since my freshman year of high school. I have weakness and numbness in my extremities. My legs feel like they will give out though they have not yet.
The weirdest symptom is probably the bruising. I have bizarre bruising on my extremities. Last week, I felt weakness in my left hand and looked at my arm. As I was looking at my arm, I watched a blood vessel burst in my tricep. My vessels are so irritated and rupturing in some places.
I am having really bad GI pain that is distinct from my normal pain pattern. It feels like I need to stool immediately but of course my colon doesn’t do that so there is no output. Every time I eat, no matter what I eat, I have severe GI pain. Doubled over pain. Electric shiver running up my spine pain. Even with safe foods. Even with liquids, if I drink enough.
My doctors and home care team are all on the same page and I’m getting attentive care. But when things like this happen, there is not much you can do but make changes and wait to see if you will improve. I watch documentaries and eat mashed potatoes very slowly. I degranulate anyway and shortly my skin is bright red and stinging, my abdomen hurts and I am drawn into the dreamless narcotic oblivion of sleep.
It is tempting to think of the disease as devouring me but really this is much more passive. Being devoured implies a struggle. It implies that you can fight. I can’t even see this. What is happening is less active, an eventuality. I am not removed from the world. The world just grows over me.
I have had bad days and bad months and even bad years. I survived them and recovered to a reasonable extent. I remind myself that I spent most of 2014 in a spiral and that I am much better equipped now to address issues on my own or with my care team. There is no way to know how long it will take to improve or when this will stop or how much of my life I will lose in the meantime.
I will survive this, too. I will recover from this, too.
I feel sad and scared and frustrated.
It wasn’t supposed to be like this.
