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This is what it's like to be in my shoes.

Thursday, May 23, 2013

Here's a taste of what it's like to be me, for anyone who is interested in the symptoms of my multiple medical conditions.

Last night I got involved in a discussion on twitter while doing other things online, and I ignored my body yelling at me to eat. The discussion had me crying (complete strangers were showing me support) so I had no interest in food. This was a mistake. My body processed what I had eaten earlier more quickly than I realized, causing my blood sugar to plummet. Unfortunately, when my blood sugar drops very quickly into the 40s (which is where it is when I have symptoms), the symptoms are horrible. I am freezing cold, but I sweat so badly that my clothes and everything near me becomes soaked. I get the shakes and my body basically freaks out. This started happening last night. However, due to my gastroparesis (partially paralyzed digestive system), there's no way for me to really affect my blood sugars enough to stop the problem. Eating or drinking something sugary can actually cause my blood sugars to plummet even farther, as my body would increase even more insulin to counteract the food it is about to get. Therefore, all I can do is ride it out.

As I recently found out, Ehlers Danlos can cause inappropriate amounts of hormones and neurochemicals, including adrenaline, even if none should be released at all. Essentially, my body has a hair-trigger for releasing adrenaline, so even a small sound, smell, movement, or anything at all can cause a massive release of adrenaline, in addition to the possibility of it being released all the time in moderate doses. It's like my body is in panic mode at all times every day, and the slightest trigger can send it far beyond overdrive. Combine this with the fact that when blood sugars fall the body releases adrenaline to help force the body to survive while it tries to find stores of sugars to release.

So my body is freaking out from low blood sugar, I'm emotional from having a converstation, and my adrenaline is already a problem, yet more adrenaline and other hormones are released so quickly in high doses that every part of me simultaneously feels like it's going to explode and shut down. Up until a year ago, this would've made my mind freak out. Now I have to convince myself that there's something physically wrong with my body but it doesn't have to make my mind freak out.

For 6 hours I was on my computer (mostly doing PCH entries which require little more than mouse clicks) and watching tv shows I really didn't care much about, while I had non-stop adrenaline coursing through me. I was laying in a puddle of sweat, my entire body was shaking, I was nearly continuously reminding myself that 'this is a PHYSICAL problem, not a mental problem, so don't give in to all the horrible thoughts and memories that are flooding my brain making me hate anything and everything that's ever happened to me', and every few minutes I would get a jolt that made me want to get up and pace or move around or do anything that will get the tingles and stabbing pains in my body to stop. However, with the constant pain I'm in, the high risk of blackouts and fainting I have due to my blood pressure and heart rate problems, and the risk of dislocating any joint in my body were I to have a sudden shake or spasm while I was walking causing me to lose my concentration or balance, getting up and moving is the last thing I should have been doing. Still, sometimes I couldn't stop myself and I'd get up and move then convince myself to sit/lay down again in a few minutes.

Within these 6 hours of having a complete lack of control over my body, I took the meds I needed to take before going to sleep. Yet 3 am came and went and I couldn't imagine closing my eyes (when my body is freaking out like this closing my eyes can make everything worse), and my allergies were freaking out along with everything else, so I could barely breathe. I took a prescription allergy medication that I usually reserve for when my allergies are really bad, because it tends to knock me out. I figured it should help me be able to breathe again and help me fall asleep. Finally around 4:30 am I fell asleep.

At 5 pm I woke up. I knew I had had a fitful night of sleep, though I couldn't remember any of it. My body was sore, I was extremely exhausted, and all I wanted was to fall back asleep. Unfortunately, I'm out of one of my medications so I had to wake up enough to run out and pick it up. I had no interest in food, my body felt like I was covered in cement, I felt like I was trying to breathe through kinked straws, my head was so foggy I could barely focus enough to turn on the tv, and my mind just kept screaming at me that nothing is worth me being awake. I grabbed some cookies that were on the table to munch then laid back down on the couch (which is my bed - if I was in my bedroom downstairs I would never had made it up the stairs for food or for anything else). Finally around 7 I started forcing myself to move around, throw on some clothes, and at 8 I left to drive the mile to pick up my meds. By the time I got back at 8:30 it seemed like too much to make it up the stairs, get off my clothes, try to eat a little something (a few strawberries w/ cream cheese, followed with eating Pops cereal out of the box so I can lay down while eating). By 10 I was feeling like I was in hell being tortured. The physical symptoms are wearing me down and the depression is hitting me extremely hard, as the screwed up hormones and neurochemicals are in strange states of still continuous bombardment and/or so depleted there's nothing left when I need them.

As I lay here right now, every part of me hurts. Every muscle and joint aches like I've been running and exercising non-stop for days. My eyes are burning like they're on fire or coated with acid. My heartbeat can be felt throughout any part of my body that isn't numb, to the point that it's actually distracting. No matter how hard I breathe it feels like I can't catch my breath, and taking a deep breath feels like cement blocks are sitting on my chest ready to crush me. The depression is horrible, bringing thoughts into my head that would make the happiest person in the world feel completely worthless. My body is screaming at me that it must sleep, right now, no excuses, but my mind wonders if I fall asleep right now will I ever wake up - and should I even care if I wake up, considering if I don't I never have to feel like this again. But through all of this I have to keep telling myself that this is a PHYSICAL problem and I don't have to listen to the depression. The mental health problems I have are always there, but they do NOT have to jump on the bandwagon with the PHYSICAL problems. I MUST keep them separate.

This is what my life is like. This is what it is to be me. I face it alone. The doctors seem absolutely clueless, my family is completely screwed up and unwilling to help me in any way (except that which will benefit them), and I have no one who can come to my house to take care of me at times like this. I'm the only person I can count on to always be here.

I am terrified. My diagnoses are not good ones to have, because they just get worse. There's no easy fix, no hard fix, even difficult treatments are almost impossible to get. As I get worse, there's no one here to say 'let me do that for you', 'you can lay there as long as you need and I'll take care of everything', and no one here to even give me a hug (which would help my body release some happy hormones to counteract all the horrible ones being flooded through my body). If I can't get up to get food, I don't eat. If I can't get up to get water, I go thirsty. If I can't get the energy to vacuum for a few weeks (like lately) then my allergies flare out of control (like they are now). If I can't force myself to get out and pick up the items I need (like medications) then I don't get to have them. And when all the hormones and chemicals in my body are screaming at me that life is not worth the torture, I'm the only person who is here to try to be positive.

I'm sorry if I made you feel bad because you read this. I'm sorry if you pity me now or if somehow you feel I've permanently damaged your life by telling you about the last 24 hours of my life. I'm sorry if you feel I'm not good enough to be around you on spark (I've had enough people attack me or abandon me here that it won't destroy me if more do so).

This is me. This is my life. I don't expect anyone to understand what I'm facing. But here it is for anyone who wants to read it. If you've made it this far, give yourself a pat on the back - you deserve it.
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Member Comments About This Blog Post
    You never have to apologize for expressing how you feel and sharing what you go through. People who attack anyone for doing that should be absolutely ashamed of themselves. It's not your problem if they want to pretend everyone's life is sunshine and rainbows! Blogs aren't just for entertainment. Their primary purpose is to get frustrations out and be completely honest about struggles. I find the people who are the most honest are the most inspiring. :)

    I can only imagine what you go through. The way you described it just sounds horrible and I am betting that is worse than you can even explain. No wonder you have emotional attacks sometimes. It's understandable. If I lived near you, I try to help any way I could. emoticon

    Hoping tomorrow brings a better day for you & your body lets up on a bit.

    1545 days ago
  • JAMER123
    I too, wish there was something to be done with helping you!! Have you ever considered assisted living where there is someone around to help if you need it? I don't know if you would qualify but I am guessing you would. Don't put yourself down. The disease process going on can't be helped. You didn't cause it but you have to live the life. Try hard to keep your chin up & hang in there!! We on this site care about you even though we can't be there physically, to help. Take a look at my blog I posted tonight. It is fitting for you. Hope the day went better than your last night did and hoping you get the sleep you need tonight. Don't ignore your body!! Trust it!!
    emoticon emoticon emoticon emoticon emoticon
    1549 days ago
    emoticon Please do not feel that you are not "good enough" for Spark, that is completely untrue! I applaud you for your honesty about your health issues, you are an inspiration to me with all that you have accomplished, despite them. As you know, I have my own health issues, and I know what it takes to get certain things done that come easy to most people.

    I wished I lived closer to you too, to help out any way I was able to.
    1549 days ago
    I want to scold you for not letting me know you were getting into such a state emoticon but instead I will just apologize for not being close enough to run over to your place to help you out emoticon or just to sit there quietly while you vent emoticon . emoticon , sweetie. You deserve better than that. And I do feel bad... helpless, actually. My friend's body is hurting her mind and there's nothing I can do to comfort her! emoticon Just know that you can call or text me anytime. I may not answer right away but it's not because I'm ignoring you. It's probably because I'm asleep emoticon but no matter what I will get back to you as soon as I can. Now go get a fruit roll-up and shape it into a smile before you eat it emoticon That's me sending you a hug emoticon
    1550 days ago
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