My consultation at the West Clinic is exactly 24hrs away (and 180 miles away). I wanted to document how I feel, and what I'm experiencing so I can have something to compare to when I start treatment. Sorry if things don't make sense and sorry for typos. My reading and writing abilities are a little compromised:
I wake up with a racing heart, and chest pain like I always do. The second I open my eyes, my body feels like the day is an instant threat. It is SUCH a horrible way to wake up! Sometimes it's a burning, falling feeling. Then, I feel my neuropathy start to wake up, and spread throughout my body. My feet will start to burn and contract, and as always, I have the urge to use the bathroom. It's always very emergent, and always results in diarrhea without fail.
Some nights I can't sleep because I either have to sit up from stomach pain and pressure, or I have horrific nightmares, or my body is stuck in fight or flight mode, or I'm in way too much pain. I take 4mg of Zolpidem every night and it seems to help most nights, but definitely not every night.
My feet feel like I ran marathon barefoot on rocks, and my legs and back are SO stiff and painful. I usually burp a lot, too, like there's been poison gas accumulating in my stomach all night. I have really bad heart palpitations, and a heavy feeling in my chest. I have the same thing for breakfast every single morning without fail. Rice Chex and Almond milk. I have to eat such bland food because that's basically all my stomach can handle. The milk has to be warm, too, otherwise it shocks my system.
As I start to use my phone and laptop, sensory overload sets in and so do my neurological symptoms. My left eye feels like it's failing (eyelid drooping, blurry vision, and numbness/twitching), my left hand does not work right, my tongue crawls and twitches in my mouth, and my head shakes like I'm saying "no" to something. Kinda like a person with mild Parkinson's disease. Lights and sounds really make me feel bizarre. Like my brain is scrambled. I avoid social situations because I have such a hard time communicating. I try to fake it as best I can but it just ends up stressing me out. I used to be a very happy, social, friendly, articulate person, but I'm definitely not right now.
I try not to talk on the phone because it uses way too much oxygen, and texting is hard because my dexterity is off, and my brain can't really tell if my sentences make sense. I just try to rely on autocorrect and luck.
My face is really hot but my hands are freezing. If I try to get warm, I roast, and if I try to cool off, I freeze. My temperature regulator is completely busted.
I can only manage a bath or shower once a week. Twice if I'm lucky. It takes so much energy and makes me have bizarre rashes and patterns on my skin. Like my skin turns purple with white and red blotches. I'm guessing it really affects my blood pressure and circulation, which are both poor anyway.
I sleep with my SI belt on, which is a belt that holds sacroiliac joints in place at the bottom of my spine. It is so incredibly uncomfortable but my pelvis would twist all over the place if I didn't wear it. I only take it off to use the bathroom, shower, and change my clothes. All of which are a challenge.
Every single step that I take around the house requires a huge amount of concentration, and I have to do everything in slow motion. I try to walk so carefully, and hold myself still so my joints don't slip out of place, and so I don't pull a random muscle or ligament. The slightest wrong movement can completely send me out of commission. So, I spend all day "being careful". My feet roll and crack and pop and it feels like they're not capable of holding myself up.My hips REALLY don't feel like they can hold me up. My hip sockets act like my pelvis weighs a thousand pounds. It's really hard on me because I was VERY athletic right before this all happened (running, swimming, dancing, etc).
I use wheelchair scooters at grocery stores, and I have a temporary handicap parking pass. I always have to have someone drive me everywhere because I feel like I can't control my car. My body freaks out because it thinks the car shouldn't be moving? I have a hard time holding onto the steering wheel, my depth perception of other cars is screwy, I have motion sickness, vertigo, and sensory overload when I drive, too. There is a grocery store right behind my house across the road that I feel like I can make it to, and my chiropractor is literally in a parking lot directly behind my house. Otherwise, I do not drive. When I tell people, "I can't drive", I don't think they know why. I'm ok in cars if someone else drives me but it takes a while for my brain and my body to adjust. Then, when the car finally stops, I feel like I'm still moving and it takes a while to readjust. I don't like to use elevators because that "drop" feeling stays with me.
I will get sudden sharp pains all over my body like a voodoo doll. I'll get sudden bouts of indigestion even though I eat the same things slowly every day, and I'll get sudden bouts of dizziness. There's never any pattern or warning or anything. I have been very fortunate to not have experienced seizures. I do feel like they could start to happen soon, and I do feel like paralysis could start to happen soon, too. Especially on the left side of my body. My face and arm in particular.
I have been really lucky not to have passed out yet, too. I have severe head pressure, hissing and ringing in years, facial tingling and numbness, and it is getting worse. Luckily, like all my symptoms, it comes and goes. My skin is very pale and I might start to be on the thin side. I've lost over 15 pounds the last couple months even though I really do try to eat. Pretty much almost all of my muscle mass has wasted away, too.
I will have random episodes of "wellness moments" as I like to call them. I'm usually around 15-30% health, but some moments on some days, I will go up to 40%. Usually during these times, I go check the mail, talk to a neighbor, do a chore, talk to someone on the phone, do something silly, etc. If I have one on Sunday, that means I can go to church. I wish I could schedule when these moments were, and know how long they lasted but they are so unpredictable. I almost go into panic mode when they happen 'cause I want them to last but I know they won't, and it feels like a further fall with a hard landing when my health drops back down.
So, as of right now, pretty much all systems of my body are compromised.
Neurological: Brain & Nerves
Musculoskeletal: Muscles, Joints, Tendons, etc
Circulatory & Cardiovascular: Heart, Lungs, etc
Gastrointestinal: Stomach & Intestines
Endocrine: Thyroid, Hormones, Etc
A lot of these symptoms may get much worse as I go through treatment. But I'm hopeful that I'll start to see some of them go. I actually don't know what it's like to not feel pain. I don't remember what it's like to be normal so it's hard to envision. I literally cannot picture it because I don't know how. I feel like it would scare me to feel normal. Like I have Stockholm Syndrome to my illness. When I see pictures and video of what life was like before this, it seems like a dream. It's inly been a year and a half but it has been very psychologically damaging. I really am hopeful, though, and I really do have faith that I'll be okay.
