To my family and friends who don’t understand my illnesses

My partner brought to my attention tonight that very few people actually know what is going on with me medically. They see me stay in my room a lot; they hear me stutter a lot. But the rest of it, I keep to myself. My partner and I, and sometimes my mom, are the only ones who know what it all is.

My partner suggested I inform my family and friends of what my condition is, but how do you do that when no one understands? I feel like my partner is the only one who understands and the wonderful online friends I’ve made in support groups.

Everyone else seems overwhelmed by what is in fact an overwhelming list of diagnoses. Believe me, I am overwhelmed by it.

So let’s took a look at what all there is:

  1. Bipolar and Anxiety
    1. This affects my moods and A LOT of other stuff. Part of the reason I don’t come out of my room is because my anxiety is too high. I get nervous around other people (yes even my family). I don’t like to go out in public because if I get a migraine, it is very embarrassing and I don’t know if I will be able to make it through the outing. Driving makes me nervous because what if I have an episode? I get angry for no reason (exceptionally angry, more than what would be expected of a normal person). I get depressed easily, then if I swing up I start buying things and I want to do a bunch of stuff. Then I do a bunch of stuff and my body ends up in a flare, which leads to…
  2. Fibromyalgia
    1. This is all over muscle and joint and bone pain. All the time. It flares at times, and I can’t get out of bed. It also causes confusion (“fibro fog”) and a whole slew of other symptoms. It is very painful. I try to move to make it better, but I always hurt.
  3. Dysautonomia
    1. My body can’t regulate normal bodily functions like digestion, blood pressure, heart rate and temperature. I overheat in the summer; I freeze in the winter. My heart rate goes crazy when I change from laying to down to sitting or standing or from sitting to standing. But then my blood pressure drops and I get dizzy. I have trouble eating and digesting food because my stomach and small intestine are partially paralyzed. Normal body functions that people do every day, all day, do not happen automatically for me.
  4. Migraines
    1. I have classical migraines, migraine with aura, hemiplegic migraines and chronic migraines. Chronic means that I have more than 15 migraine days a month. I am often battling a headache, or at least a mild migraine. I can stutter, see distortions in my vision, throw up, be light and sound sensitive. Fluorescent lights almost always trigger a migraine. When my migraines get really bad, I have issues with my muscles. They all tighten up and it makes it difficult to walk or do anything really. This raises my anxiety. If it gets HORRIBLE I can become partially paralyzed. Most of my migraines contain stroke like symptoms like drooping face, slurred/stuttering speech, weakness, and confusion.. They suck, and I have them all the time. They make me not want to leave my room or the house or go out in the world. They can strike at any time, they can last for a half hour or three weeks. I can have multiple migraines in the same day.   Things like hormones, weather changes, lights, certain foods or drinks can cause a migraine, or it can just come on randomly. I have to be careful not to take too much medication for it because I can end up with a medication overuse headache. I have intractable migraines which means they never go away and I always have one. I may get some reprieve for a few hours or a day or two, but that’s about it. I also have too much cerebral spinal fluid in my brain and spine, which causes more headaches and vision issues. My vision often goes blurry or I see double.
  5. Genetic Issues
    1. I have Ehlers Danlos Syndrome, hypermobility type.  We are waiting for genetic testing on if I have a different type.  This is a collagen and connective tissue disorder.  It is genetic, and through my mom’s side of the family.  I am overly flexible and can bend in very funny ways.  My ligaments and tendons, over time, can become too lose and my joints can start to dislocate.  This is not for sure though.  I can have subluxations (which are little pops where my joints come out of place but I can put them in) and eventually I might develop arthritis due to all the joint and connective/collagen issues.  It is very painful in all of my joints and whole body really.
  6. Congenitally Corrected Transposition of the Great Arteries
    1. I have a heart condition that I was born with. It required two surgeries when I was younger. Basically, the lower half (the ventricles) of my heart are inverted and so are the valves. I have the weaker side (right ventricle) pushing blood out to my body instead of the stronger one. I often have a very high heart rate, over 120. I get little flutters and skipped beats and extra beats and funny beats that can sometimes be painful.
  7. Back problems
    1. I have thoracic and lumbar scoliosis. My spine has issues with nerves and hurts all the time.
  8. Medication Side Effects
    1. I am on a lot of medication. It gives me severe dry mouth, GI problems, heavily sedated at night.

 

I deal with all of this stuff on a daily basis. Most days I have a migraine. Every day I hurt. I like to be in my room with my headphones on and the lights off because it helps me not think about the pain and it distracts me. I can spend hours on my computer because of a special light filter I have on it that takes out the blue light. I try to come out and be social when I can. But it’s hard. I’m scared and my anxiety gets the best of me. I hurt a lot, all the time.

There’s a lot more to my medical record, but that seems like a good place to start. All of these things happen to me every day.

These are all also chronic conditions. That means I will have them forever. I won’t be getting better, as in cured, but I have hope I will have more good days. I will never be cured of any of this. Ever.

I’m sorry I’m not social. I’m sorry I don’t interact with you a lot. I’m sorry I hide in my room with the door shut, the lights off, and headphones on. It’s the way I’ve discovered I can cope the best. TV doesn’t do it for me, neither do books (as much as it pains me to say that).

I love being with my partner more than anything. I am always happiest when I am with him. It’s been hard living apart this last year and a half. When I’m in my room, I’m often texting, talking to or Skyping with him. This helps me as well.

I’m sorry I’m not very good at communicating all of this. I feel like all of my medical stuff is overwhelming, so I try not to share it and make all of you worry. But as J. pointed out, maybe it would help you understand me more and what I go through on a daily basis.

Love to all, and if you have any questions about anything, let me know.

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