Wednesday, July 6, 2016
For those who can't "suck it up"
Ahh, "suck it up." Words usually spoken by people who appear to have more intestinal fortitude than you do in hard situations. A phrase uttered typically to make the person saying it feel morally superior. Words that imply "I don't care if you don't like it, do it." These words have been spoken to us for generations. Whether its to a child who has fallen learning to ride a bike. To a person who has a boss that is Satan's incarnate. To a person who someone perceives isn't doing their fair share. To the person who talks about being depressed asking for a little slack in life.
But what about those of us who emotionally and sometimes physically aren't able to "suck it up?"
Picture it, Sicily, 1922. Oops, wrong time.
Picture it, 1998. After weight loss of about 70 lbs in a relatively quick time, my gall bladder starts to shut down. My symptoms are severe nausea to the point of almost vomiting and I will bargain with God for 10 hours on a toilet with tears streaming down my face before I'll hurl. It takes them 6 months and about 8 tests including 2 dye injections, an endoscopy, ultrasounds and MRI's to diagnose it. By the time it is diagnosed, I have begun questioning my own sanity because I know there is something wrong with my body but 5 doctors tell me otherwise. A neurologist says there is nothing wrong with me and I am "hysterical." I'm sorry, isn't that what they diagnosed women with back in Victorian ages and then prescribed vibrator therapy?? The last thing I need is a dildo, pal. It's not until the final dye injection that my gall bladder is caught shutting down. By that time, the damage had been done to my already fragile psyche. I was always an anxious kid...that'll happen when you change schools every year for most of your elementary years. Add being fat to boot and you can imagine people were lining up to be friends with me. I had to become charismatic to attract friends and just when I'd make them, we'd move again. So you take that history, add in insecurity from male figures who constantly disappointed me and then have 5 male doctors all tell me that it's all in my head and nothing physically wrong and something in me broke. Literally.
Thank God one of those men was a forward thinking GI doctor who caught the gall bladder issue by re-running a dye test without permission through the proper channels. I got my gall bladder removed, all should return to normal. It didn't. For months I still felt that way and it was chalked up to my body adjusting. After 2 months and an exam to make sure he hadn't missed anything, I got a pamphlet on functional nausea and vomiting. Basically it means that there is nothing like a tumor or disease per say causing that sensation/reaction but that your body reacts to things like stress differently. Some idiot doctors would call it a diagnosis that is made so the patient can finally have a name for it. I was lucky enough to have a progressive doctor, especially at that time, who said this is NOT a psychological disease but a physiological one where the brain signals to the gut get misinterpreted leading to the vomiting/nausea. Since stress was my main contributor, I was prescribed a super low dose of a tricyclic antidepressant (15mg compared to the minimum 150mg you'd take if it were being prescribed for depression.) to haze the brain's message to the gut. I was also taught breathing techniques to help more quickly bring me down from an attack. It took a few years but I was able to wean myself off of the meds because I don't like taking anything like that especially now given their potential link to Alzheimers.
The problem was, my body adapted. So when I would feel that bile rise or gross feeling coming on, I could breathe my way out of it for anywhere from a few minutes to hours. Then my body decided "wouldn't getting dizzy be more fun?" Yes, I love the Tilt a Whirl! *sarcasm* So now when I would get stressed, the room would spin and I couldn't even walk. After a few months, that evened out. I thought I was over it. Nope, now my body decided "hey, wanna try panic attacks? Not the kind that everyone throws around like it's a chic way of describing they are overwhelmed but the REAL kind where you can't take a full breath, your chest gets heavy to the point you feel you are having a heart attack, your teeth chatter and you literally feel that any moment you will die. Won't that be fun??" Once again, breathing techniques helped me get through them and though my body would adapt each time, it would also act like a rolodex (link for the millenials) remembering each and every symptom to pull out at a later date. It would let me get to normal for just long enough before whipping a symptom at me to deal with for hours, days or if I was seeing the in-laws I knew hated me, weeks at a time. Obviously migraines are par for the course on occasion as well but I don't think that had anything to do with this disease necessarily but still a symptom of extreme stress.
When I was going through this and finally got diagnosed, my grandma asked me what was going on. She knew I still wasn't feeling better even months after my surgery. I told her what it was and I said I know it sounded fake but I told her about the paperwork the doctor gave me and all of that. I explained to her that I was told that not only when bad stress took place would my body react but the doc explained the body doesn't know how to distinguish good stress from bad so I could be excited about seeing a friend or going on vacation and suddenly...*ralph* with no warning. Yeah, isn't that a kick in the ass? She took it very seriously. She could see as I teared up when telling her that it was something I was struggling to deal with and affected my quality of life. It was around this time as I struggled to come to grips with my new reality that the doctor said I needed to cut ALL unnecessary stress from my life. I told grandma that I had to tell my mom that I could no longer rehash the crap that certain family members churned out. They made their decisions and while I still didn't agree with them, 15 years of talking about them behind their backs have not changed their behavior and for my own health I needed to not be notified of these things. It took a few calls and a few firm reminders that I was being serious for it to sink in. Sometimes I think she forgets the reason I asked her not to get into that stuff with me. Actually, I'm 99% sure she doesn't remember it is because of my disease that I can't get into it with her. I told Grandma I was afraid mom would be mad at me and I was afraid she would be too because I know she's close with these people and she loves them but I just couldn't take it anymore. She hugged me and said she understood and not to worry about it. My health came first.
Within months of my diagnosis, I had to cut ties with a 14 year friendship. I was putting in all of the work and getting nothing but hurt feelings and excuses as to why I wasn't worth hanging out with. All I did was sit up wondering what the hell was so wrong with me that I wasn't worth getting what I gave and I would cry to the Mr, get upset and end up in nauseous fits and spinning for hours. When it was done, it was done and the people in my family who knew her took her side without ever asking mine. It was a double whammy. I lost trust in those people that day and it never fully recovered. I've forgiven them because we all tend to fill in the blanks instead of just asking people what is going on but it is still not fun to think of that time.
I had to make a lot of life changes to cut out excess stress where I could. One way grandma helped me was a year after my diagnosis, my mom had surgery. She knew I was not good in medical situations and saw I was going into an attack in the waiting room after it went longer than it was supposed to. She told me to go out to the car, gather myself and she would come out when there was news. I still can see her and her husband walking out to the car as I was trying not to throw up. She smiled and I rolled down the window and she told me mom was fine, to take as long as I needed to get on my feet and gave me the room number. When other medical issues with my mom came up, I proved I cannot take the things nurses deal with every day like body fluids. In frustration, my mom yelled at me when I stood with her barf bucket dangling in the direction of her face, looking the other way with my eyes closed and my shoulder in my ear so I wouldn't have to hear the brunt of it. "GET OUT! I'LL DO IT MYSELF!" she yelled. Bye Felicia!! I know I should have felt bad but I didn't. I know what I can handle and what I can't and barf and I don't mix.
I talked to grandma a few weeks later, crying that I was a failure as a daughter and mom thinks I'm an asshole for not just sucking it up for her. She said she doubted she felt that way, put her arm around me and said "honey, you can't feel bad that there are some things you cannot deal with. You have to do what's right for you and you shouldn't be expected to suck it up if your body can't do what your mind says you should!" I never forgot that. She understood that. She took my diagnosis seriously. I miss that unconditional support. That is part of why I think she made me promise that if she ever got so bad that she couldn't remember me then I needed to stop seeing her. When I told her other people would be mad, she put her hands on the side of my face and said "you listen to grandma! Give me some dignity!" She knew what I could handle and what I couldn't and she knew if I couldn't handle medical issues with my own mother, I wasn't going to be able to handle it with her. I think she gave me that gift out of love and with an unconditional understanding that I can't help it, I can't "suck it up."
When I talked about saying my peace with my aunt, it came from the spirit of wanting to do for grandma what she did for me. When I read the response, at first I just kind of sat there. I didn't feel much one way or the other as I was trying to process everything. Then I began to dwell on a few parts...talk to the Mr...and then the teeth started chattering. Then the hands began shaking. Then the whole body joined in. The Mr freaked a bit since the teeth chattering is only a precursor to a really bad attack and gave me a breathing exercise to do while he re-read what she said. It helped a bit but as I could tell he thought there were a few points of concern, the chattering started again and I couldn't take a full breath. It was 90 minutes from the time I read it until the time I was able to get to bed with a pounding headache, clenched jaw and high pitched ringing (my newest symptoms as of the past year...YAY!) at a fever pitch. My mind raced as the song "Stressed Out" played over and over in my head and it was irritating because I only knew 3 lines in the song. "Wish we could turn back time to the good old days, when our mama sang us to sleep but now we're stressed out. Stressed out!" I was able to get about an hour sleep before stress trots woke me up. (TMI...sorry but it did!) I laid back down and the Mr decided to start snoring weird and I knew I couldn't stop the swirling in my head so I grabbed my pillows at 4am and came down here and wrote yesterdays post and now this one. It's 6:15am. So I will basically be going on 90 minutes sleep today and such is the life of someone who is physically unable to do life like "normal" people.
25 million people suffer with functional nausea and vomiting. This is not a made up disease. This is not "in your head." This is not an excuse. It is a physical reaction to mental duress. Sometimes you know it's coming, sometimes you don't. Sometimes you think you have a situation under control and you find that you're clenching your sinuses and didn't even realize it or some other bizarre new way to tense up. If I'm honest, I've likely had this all of my life but wasn't diagnosed until I was 24. When I was little, my other grandma, a nurse, always got very concerned about the constant headaches I would have. I know she suggested I go to a doctor but I don't think I was ever taken; it was dismissed as "oh she just gets headaches." So I think this has been a life long struggle. I never know how my body will betray me and when. Thankfully I can recognize symptoms quicker and try to combat it faster so that I'm not forced to be house bound or anything but when you get a new symptom that hits you, it does set you back. Waking up at 4am a year and a half ago asking the Mr "what is that noise!? Don't you hear that!?" out of a dead sleep is a new one. It's not fun and the more stressed I am, the higher the pitch....every. day. of. my. life.
So if someone in your life is acting like what you would view as a "wuss" or not doing what you think is their fair share or complains about panic attacks, please know that most people are not choosing to live that way. It's no way to live. It's not something we would choose for ourselves or even the people who have wronged us...okay, maybe a few. ;-) But it's not something you can just get over or choose to just get better. You don't know what will set you off and where you'll be and if you will or won't make an utter ass of yourself out of panic. I'm thankful I can at least gather myself that I haven't had public issues in many years but I can be better in 5 minutes or 5 days depending on how bad the situation is. Most days it's fine but when it's not...it's REALLY not and when people project their expectations on you because of how they live their lives, it only makes it worse. You have your own expectations you're not reaching and being told you're not doing enough to reach other people's standards well honey, I ain't got NO time for that!! I no longer give a shit whether you understand it, believe me, are mad that I'm not who you thought I was or that I'm not doing enough. I'm doing me and given the cards I've been dealt, that's going to have to be enough and if it's not...not my problem because I can't take on your issues in addition to my own.
For the other functional folks like myself, you're not alone! It's seldom talked about because it's still considered a "fake" disease among those who don't take the time to understand. I was lucky that I had/have two people in my life who understand in the Mr and my grandma to SEE what I was going through. To know that I didn't just throw pills at it and suddenly I'm "normal" again. My body and its reaction to stress will never be normal. My own experience helped the Mr with his own anxiety issue when they arose 6 years ago. I could see the physical toll they were taking and set him up with someone who could help give him coping mechanisms. I hated he had to go through that and he didn't have what I had but I was able to talk him through a panic attack and call a nurse to help him realize that's what he was feeling and not having a heart attack. I don't want it to sound like I'm surrounded by unfeeling jerks, just people who don't take well to things they don't understand. So if some of the symptoms sound like someone you know, take the time to pull them aside and ask if there is anything you can do to take the stress off of them. Don't make them feel like what they have to give isn't good enough because trust me, they're already beating themselves up enough.
In what situation have you been unable to "suck it up?"
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