I was bed-bound. Before I learned about my B12 deficiency and treated it, I lived in bed. For two years. If that sounds pretty intense and difficult, well, it was.
My appetite was low, I had no hunger signal. Food did not taste good, I had trouble swallowing, I sometimes aspirated my food (breathed it into my lungs). My tongue was enlarged and sore sometimes. I choked on food- sometimes I choked on water.
My body hurt, constantly. My muscles hurt, and twitched, and ticked, and spasmed, and cramped. My joints hurt. My skin hurt- I had extreme sensitivity, my skin itched, I had rashes, I had acne in many places. My nerves hurt, I had neuropathy. My head hurt- I had headaches, migraines, tinnitus, TMJ (so my jaw and face hurt in the morning from grinding my teeth at night), my teeth hurt, my ears ached, my eyes felt full of pressure and grit. My intestines hurt- they cramped and spasmed and kinked up, I had diarrhea and hemorrhoids, and often bled when using the bathroom. My liver hurt- it was enlarged, swollen, and tender- so my entire torso was sore (and I had elevated liver enzymes, which made them think I drank; I didn't). Everything was in pain, all the time, in some form or fashion. On a pain scale of 1 to 10, I lived at a 7 or 8 most days- all day, from wake to sleep.
I slept So Much. It was common to sleep 10-14 hours at night, and a 2-6 hour nap during the day. It was not good sleep; I tossed and turned, I got up to use the bathroom, I had trouble falling asleep, trouble staying asleep, nightmares, night sweats, night terrors, trouble waking, and felt tired and exhausted all day. Every single day, for years.
I had trouble thinking. By which I mean, I could no longer do basic math, I could not follow a recipe, I could not answer basic questions (what's my middle name?), I could not write a check. My memory was shot, I could not remember the birth of my children, my husband's proposal, or what I ate yesterday. Forget passwords and PINs, I had trouble remembering to flush. My hygiene suffered greatly- I stank, and I didn't care, and it was too much trouble to fix it.
Walking was difficult. I had extreme dizziness and vertigo, and my balance was off. I had to grab the walls when I walked. I fell, often. My gait was unsteady and odd looking. My feet would sometimes curl up into the sole, like the letter C. I misjudged distances so I would often walk into walls, furniture, people. I had a lot of bruises and other damage from these accidents. I had several nurses escort my husband out of the exam room and give me the "tell me what really happened" concerned talk, on more than one occasion.
I had no connection with people. I didn't leave the house except for doctor's visits. I could not, physically, do Anything to help take care of my home or family- my husband did everything for two years. He did all the grocery shopping, errand running, bill paying, dishes, laundry, cooking, and taking care of our child. My child was an infant, and this lasted through toddler-hood. My husband would bring her into the bedroom twice a day to visit and play with me on the bed.
Needless to say, I did not drive. It physically hurt to get in and out of the car; to put on my seat belt; to adjust my seat. Turning my head to the side, especially to look back and to the side (like when backing out of a parking space), was almost impossible, and Extremely painful. Sometimes my feet slipped off the pedals. Sometimes I would forget where I was going when I did drive. Sometimes I forgot the traffic laws, and would fail to signal, cut across lanes, things like that. The scary moment was when I nearly ran down a pedestrian in the crosswalk- a pregnant woman. I saw her, I saw her start to walk, I braked- then I stopped braking for some reason, and barely re-braked in time. She looked pretty shaken. I was beyond 'shaken'. I went home and told my husband I was done driving. I didn't drive again for a year and a half.
My reality was skewed, some would say. I had tactile, audio, olfactory, and visual hallucinations. Meaning, I would feel things that were not there, hear things that were not there, smell things which were not there, and see things which were not there (another factor in the 'not driving' column). I would feel bugs crawling across my skin, which is a Mental Illness diagnosis in the manual, by the way. I would hear conversations and voices that were not there- also has a mental health label, schizophrenia. I would smell things, always BAD things, like burnt popcorn, vomit, cat pee, mildew, and they were never there. And I saw all kinds of things- "seeing ghosts" some would say, but I also saw splashes of color, the walls turned into a kind of Matrix sacred geometry pattern, or just something random like seeing a pencil on the floor that was not there.
Scary? You bet your ass! Pardon my french, but seriously, this was a total nightmare that never ended. A living, breathing nightmare- and sleep was no escape because I had nightmares and terrors in my sleep! On top of those physical problems, I was Constantly Scared. I felt terrified All.The.Time. Like a rabbit hiding from the hunter and smelling the dogs terrified. My adrenaline was always pumping hard. I jumped at the slightest sound, I constantly was on 'alert' and feeling afraid, I had panic attacks in the grocery store, the post office, the library. I eventually quit going to the grocery store, library, or anywhere. "Social anxiety" they called it. PTSD from a lifetime of trauma and abuse, they said.
I had mood swings, outbursts, impulsiveness, inappropriate comments and actions, emotional vomiting sessions, intense crying. My feelings were easily hurt, I was considered 'thin-skinned' and just always felt like no one liked me and everyone was either rejecting me, ignoring me, *trying* to hurt me, or variations on that theme. Bipolar, they said. Whoops, no, probably Borderline Personality Disorder, since you keep pushing people away.
I had sensory issues, with everything- lights were too bright and painful, common sounds were painfully loud and startling, a wrinkle in the clothing I was sitting on was beyond irritating to painful. I was also rocking myself, flapping my hands, and could only find relief from intense anxiety with pressure. I could not carry on a conversation, and I found it *physically difficult* as well as mentally and emotionally difficult to make eye contact. So I was diagnosed with Asperger's as well.
Now let's factor in the Severe, Crippling Depression, extreme paranoia, and constant thoughts of suicide. Well, okay, to be fair, not constant- I only thought about ways and reasons to kill myself one or two dozen times a day. So not totally constant. But certainly extremely frequent, and disturbing, and debilitating.
This was my life, and it was no life. It was misery in every way. I constantly felt guilty and worthless and a burden. I had no hope, about anything. I had no desires. I had no fun, enjoyment, or pleasure from anything. I had no relief from constant mental, emotional, and physical pain.
This brings us up to the diagnosis of seizures from the Neurologist, who also discovered my B12 deficiency. We already have the post for that. Many people who have heard of my improvements, have been asking for the origins- what it was like before the B12 injections that changed everything. So here it is.
Absolutely everything I mention in this blog post is directly related to my low levels of B12, and the damage that resulted from years of deficiency. My case is extreme- other people who have low B12 may not have as severe of symptoms. I included the aspects of severity to show how important it is to treat it as soon as symptoms appear, so it does not continue and damage the body to this level. I was lucky- untreated B12 deficiency is a cause of heart attack and stroke.
For a list of symptoms associated with B12 deficiency, as well as the blood tests needed to diagnose, important things to know before testing, proper treatment, and so much more, visit this site. It has printouts to take to your doctor, information on symptoms in children, how to interpret the blood labs, just everything you could need or want to know about checking your B12 levels.
This has been one of the most difficult things I have Ever written. It's not exactly fun to talk about, and it certainly is more than a little uncomfortable to share not just one but many deeply personal things with, well, everybody who reads this. I do this for the same reason I have shared these other blog posts about B12- because somewhere there may be just one person this helps. One person who is suffering, and feels like it is hopeless, one person who is just fed up and done with the pain, one person screaming into the night for help.