Update: 2/22/23 I’m leaving this in it’s original form for posterity, but in hindsight now, having been diagnosed with systemic lupus erythematosus, rheumatoid arthritis, Sjogren’s and Raynaud’s for five years now, it’s likely my on-going battles with chronic fatigue and such were early indicators of autoimmune diseases.
Getting Serious For A Moment
(Originally written February 7, 2008 with various updates since. I’ve been working part-time since August 2008 despite the following health issues.))
I suffer from chronic illnesses that aren’t always obvious or readily apparent from the outside. So I’ve wanted to share what it means and I’ve been trying to write it in my head, it’s just not coming together, so I’m going to just type and see where it takes me. Sorry if it’s not the most eloquent or whatever, but I just need to get it out. This is very important to me, so if you read any entry of mine, please try to read this one.
To start: I’m not sick because I don’t work, I don’t work because I’m sick.
Think about this for a second, please. I know in photos and videos I look perfectly fine. And even if you see me in person you might think I’m the picture of health. But you have to realize that the beauty of the internet is that you get to highly filter out the bad moments and only show the fragments you want to. It’s not a complete picture. Not even close. And while I occasionally mention health issues, it isn’t a complete picture either.
Let me tell you about my Wednesday. I woke up early in the morning because my stomach hurt so bad, it took me out of sleep. I tried to lay there for several minutes, hoping I could doze back off but it got so bad, I had to get up and run to the restroom. I spent awhile in the bathroom and eventually got up and went into the kitchen to make myself some peppermint tea (which often helps take the edge off my nausea and stomach upset when I drink it.) As the water starts to boil, I uncontrollably start to violently dry heave into the sink. (I couldn’t even make it back to the bathroom.) There’s nothing to come up, but my stomach won’t listen to me and has me doubled over in agony for several very long, breathless minutes. I manage to finally stop, and brew my tea. I do get it down by small sips but I’m still miserably sick and in a very high amount of pain. I was supposed to have met up with my mom to go down with her to my sister’s house Wednesday but instead, I had to call her and tell her I was too sick to leave the house that day. The remainder of the day was spent trying to sleep, unable to eat due to the pain and nausea, going in-and-out of the bathroom well over a dozen times that day and finished with a terrible bout of diarrhea that redoubled the sharp, stabbing pain in my stomach; bad enough to make me cry.
I know this is probably all too much information for most of you. But this is just one tiny, tiny glimpse into what is a bad stomach day for me. Today (Thursday) I’m still not feeling well and it will be several hard days before my stomach comes back to what qualifies as “normal” for me.
Bad days mean I can literally be in the bathroom for hours, easily a dozen (or more) times during the day, unable to eat, in pain, nauseous, and miserable. A “normal” day for me means “only” an hour or two in the restroom over the course of the day and generally three or four times a day in the bathroom. My stomach almost always hurts to some degree or another and I can very rarely eat without becoming ill from it to some degree. (No matter how bland or simple the fare is.)
This is life with IBS. It means I can’t ever plan things. I can’t ever know when I can or cannot do something, or when I can or cannot leave the house. Days I go to Disney, I load up with large quantities of Immodium (OTC anti-diarrhea medication) and still always have to take time to stop while I’m there. Many days, more than once in the day. (Which is embarrassing and uncomfortable.) It’s not just every day is a guessing game, but every hour is. And IBS isn’t my only problem.
I’ve had health problems most of my life. They’re just getting worse. And the reason I’ve run through so many jobs in my life is that I’m always unable to hold to the schedule. I end up being late, or I take too much time off due to health problems, or my body just shuts down on me. It’s not lack of willpower, it’s not lack of skill, it’s not lack of knowledge, personality, or intelligence. I’ve left many a job with my superiors terribly sad to see me go because of my extremely high level of talent and my ability to learn anything and take on any responsibility given to me. They all hate to see me leave. Rare thing to say when you’re chronically late or missing. I’ve never left a job on a sour note despite my awful lack of schedule reliability.
I have permanent damage to my neck. When I was about 12, a chiropractor found it. When I was in my mid 20’s, another saw me twice a week for a month before telling me he wasn’t going to keep taking my money when he couldn’t help me. That he’d never seen anything like me and didn’t know how I functioned. The issue in my neck has spread and is now in my shoulder and arms. One thing gets out of whack and your body starts to distort in attempts to compensate.
Migraines: When I was 16, I had my first migraine. I saw several doctors but nothing helped. I’ve managed to get things as good as they can be for me with close attention to my dietary triggers, limiting situations which cause them and prompt treatment when one comes on. Still, no matter what I pro-actively do, I’ll always still get them. And many things – including lack of sleep, florescent lights and stress – are huge triggers for me. All of which come hand-in-hand with the corporate world. My migraines quickly go from as managed as they can be to debilitating when I’m in a corporate environment. It all just adds up to more than I can take.
CFS (Chronic Fatigue Syndrome): I’m always tired. It’s not that I don’t sleep, because I do. I sleep on average about nine hours a night. But I wake up exhausted. I never, ever feel refreshed. I uncontrollably doze off many days on the couch in the evenings. It’s not because I’m bored, but because I’m just worn out. I get so tired so easily. I was chronically anemic for about eight years and when it was fixed, everyone told me how great I must feel; how much energy I must have! But, in reality, it didn’t get better. I know I’m not anemic any longer, but the debilitating fatigue has never gone away. Ask yourself this…do you ever get so exhausted while in the shower that you don’t know how you’re going to be able to finish, stay standing, and get through it without passing out? For no reason whatsoever? Do you go through your life feeling like you have the flu? Not a couple day cold, but the sick-in-bed for two weeks, every part of your body aches, you feel like you weigh 500lbs, exhaustion that makes you want to cry in frustration? Probably not, right? Well, I do feel that way. Some days are better than others, but never like I should be. A day at Disney crushes me physically. I sleep about twelve hours that night and basically can’t move the next day I’m so tired.
As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it’s not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It’s a severe, incapacitating fatigue that isn’t improved by bed rest and that may be exacerbated by physical or mental activity. It’s an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.
People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.
I may look fine but I’m really not. I don’t have the words to tell you how much simple things take it out of me. I deal with it as best I can, but my limits are very low and ever changing.
This all comes about because I got an email from someone the other day. I imagine that she meant it as a gesture of caring, but it hurt so bad, I’ve been crying over it for several days now. The email linked to an article which said, Are you sick because you don’t work? And it just crushed me. It just broke me emotionally. I thought that of all people, she wouldn’t have jumped to such a cruel conclusion. I couldn’t even read the article, I just closed the email and cried. It felt like getting hit in the gut and having the wind knocked out of me.
I’m so sick of defending myself. I’m so sick of being made to feel guilty for who I am and what limitations I stick to for my own health. I just can’t be that 9-5 person. I never could and I never will. I know everyone had these thoughts that I just needed to “keep trying” or that I was somehow just not giving it enough and if I kept pushing, eventually I could just “get used to it.” But the real world doesn’t work that way. I’m doing what I can and I’m trying but stop making me feel like the shit on the bottom of your shoe for not being the perfect mold you think I should be. Here’s a hint: I already feel that way, and I’ve spent years beating myself up for knowing how much I suck and how much of a failure I was. I don’t need you telling me too. It’s taken years just to admit to myself that I can’t be everything everyone expects me to be and I’m not going to be.
I’m not lazy and it’s not just in my head. Just because you see me and you think I look fine doesn’t mean anything. Like a wounded animal, I often hide how bad things are. I’ve also learned to stop telling people when I’m sick because they just don’t care. They don’t believe me or they don’t want to hear it anymore or it doesn’t mean anything to them or they think it’s just hollow words. But it’s always there even when you don’t know it.
So please don’t give me that bullshit motivational shit. I really don’t need it. I need your understanding. And I need your acceptance. Not for who you think I should or could be, but for who I actually am. I need you to take me as I am and leave your pity at the door. Be there for me, but don’t be condescending. Be my friend, be my family, but don’t play therapist.
So, I thank any of you who were able to get through this. And I doubly thank anyone who not only read it, but understood. I don’t know that I said what I needed to say or that I said it how I needed it said, but I can only hope a tiny portion of me was able to come through. I’m tired of crying and I’m tired of dwelling on all of this so I hope this was also cathartic for myself as well.
I don’t know where to end this – I don’t have anything witty to close with – so I guess I’m just by saying I’m a real person behind these words. I know I’m not the only person with problems in the world, but we all need to take care of ourselves first and foremost. And that means sometimes reminding people that it’s real even if you don’t see it and it’s true even if you can’t feel it. Keep that in mind next time you try to judge someone else.