The post I had in mind to write today has been written. By me. About five months ago. Go read Entering the TMI Zone now as it lays the foundation for what comes next.
Welcome back! I hadn’t continued that “ride” because I’ve been doing well and I didn’t have a reason. Right now, I’m not doing well and writing this is cognitively difficult and slow going. My apologies if anything doesn’t make sense. Feel free to request clarification in the comments!
I want to document my journey from not well to well, so we’ll start with describing what “not well” feels like for me. As most, if not all, autoimmune disorders due to chronic inflammation share similar traits, you might recognize some in yourself. Many people are walking around with their bodies attacking their own tissues without knowing until a symptom manifests, usually years after initial damage occurs.
Not Well Feels Like
- Brain fog slows me way down. I couldn’t remember that I had already written what I intended to write today. Granted, that was 5 months ago so maybe it’s my ripe age of 45. A better example is that as I started writing the first sentence of this paragraph, there was something else in addition to brain fog I wanted to type. But I paused and then couldn’t remember what it was. I still can’t after all these sentences later. It may or may not come to me as I continue writing. That brain fog is thick.
- I experience a persistent head ache. I wake up with it. I go to bed with it. Four ibuprofen once a day—taken at once—dulls it, but does not make it go away. My head literally feels inflamed. I have three lesions on my brain (cranial nerves) and should be more concerned that I’m causing more.
- Brain fog + pained head = decision making is difficult, down to the simplest thing such as what to wear to work or even eat for dinner. I’m less productive at work and the energy spent doing my best completely exhausts me. I’m mush by the time I get home. I can handle watching a show or two, but deciding what to do in a virtual world costs energy I don’t have. Doing anything in preparation for the next day is out of the question. I feel like doing nothing. As deciding what to eat for dinner is difficult and having zero energy to contribute to that thought process, I can end up in a mindless cycle of making myself worse by picking up something on the way home. Food is my medicine and what I eat directly affects how I feel. I arrived at this place of not feeling well due to poor food choices when I was feeling well.
- I’m more sensitive to sound. Not all sound; someone talking on a speaker phone or the car radio type of sound. Not music to my ears.
- My memory is worse. I can remember the thing that happened that one time. Or I read something somewhere sometime. Details escape me. If I need to remember something, I write it down in all the places. If someone else wants me to remember something, I tell them to text me the thing they want me to not forget. Even so, I may still forget.
- Word recall is worse. I guess this is like memory, but it’s more specific for me. I can’t think of a word when speaking, or the word that comes out is not the one I intended. Sometimes I make up new words! Don’t worry though, it doesn’t happen every other word. Just a few times throughout the day.
- Writing is more difficult as well. I can do it, but I find myself writing a loop when I want to write a line. I should probably avoid cursive writing when I’m in this state.
- I want to hibernate. Ah! Now I remember the something else to go along with brain fog! Fatigue. It was fatigue! Nerves affected by demyelination determine which areas in the body will exhibit symptoms. My affected nerves are responsible for memory and cognitive abilities. Signals cannot pass through the damaged nerves, so they take longer to reroute, if they reroute at all. Thus difficulties with memory, word recall, and writing… sometimes I can feel the delay. Signals rerouting throughout the day is exhausting, causing mental fatigue. If my damaged nerves were responsible for motor skills, I would experience physical fatigue as well.
- Self-confidence skyrockets down to the depths of my soul. That may sound severe, and it is a tiny bit dramatic for emphasis, but the difference between how I feel about myself when I feel well and when I don’t is like night and day.
- Hibernating + low self-confidence = a null and void social life. It takes energy I don’t have to carry on conversations, or even just be around people in a public setting like the store. Work isn’t too bad as I’m at my desk most of the time. But my battery is depleted with each email, conversation, and meeting. I suppose avoiding social situations is a subliminal way for me to protect my energy.
- My emotions are more sensitive and it takes me longer to work through primal/reactive emotions to a sensible and reasonable reaction. Emotional eating will most likely occur and I have most definitely been eating my emotions since Election Day.
I wonder if this sounds like depression. I have never been diagnosed with depression, I have never thought I might be depressed, nor have I ever entertained thoughts of ending my life. At my six month checkup (had one last week) with my neurologist I have to complete a questionnaire that basically ranks my feelings of despair, so there are checks and balances made available via the care I do receive. I’m not concerned about depression. I know how I am and how I feel when I am well. For me, my diet is the difference between feeling well or not. So why the heck don’t I stick with the diet that maintains my wellness?
- It’s hard.
- But cookies taste so good!
- I’m busy.
- But convenience!
- I’m weak.
- Yada, yada, yada.
I love how I feel when I’m well. I get a lot done. I like being around people. I have energy. I have ideas! I’m alive!
For my Journey to Wellness—once and for all—I have a two-year goal to work toward. My last MRI brain scan was in 2013. In October 2018, when I have my next MRI brain scan, I want my lesions to be smaller (at least) or gone (at most). This means no more yo-yo-ing the healthy food diet. It shouldn’t be something I do to feel well for a specific event or time period. It should be a permanent lifestyle change. The yo-yo-ing has not given my body the time it needs to fully cleanse and repair. I want to give my body this chance.
I was going to have a super awesome closing, but I was distracted and can’t remember it now! I’ll close wishing you a Happy Thanksgiving, if you celebrate. I’ll be gathering with family for dinner and spending some time with them, instead of happily staying home alone.