Chronic Illness


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.

CDC’s CFS Facts Page

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.


  • stel says:

    Well said sister! You describe how I feel many days, perfectly. Most folk either aren’t interested or think we’re not trying harder…while we struggle to just keep going. I have PPS, which I think is similar to CFS.
    Good luck to you, I hope today is a ‘good day’ healthwise.

  • karen says:

    I really appreciate the thoughtfulness of what you’ve written, and also how you lay it all out here. I doubt many people who are not “contributing” to society are simply lazy.

    From your words here, I can tell that you are pretty amazing. For holding it together in front of people, for toughing your way through the pain, for writing out your anger, hurt, frustrations.

    I wish you well.

    I wish I could tell you it will get better, but I can’t. But I will

  • karen says:

    I really appreciate the thoughtfulness of what you’ve written, and also how you lay it all out here. I doubt many people who are not “contributing” to society are simply lazy.

    From your words here, I can tell that you are pretty amazing. For holding it together in front of people, for toughing your way through the pain, for writing out your anger, hurt, frustrations.

    I wish you well.

  • Liz says:

    I have dealt with chronic low back pain for 6 years now, and empathize with A LOT of what you say here. Just want to say that, even though very few people actually do, I UNDERSTAND! I know nothing I can say will change anything for you or make it any better, but sometimes it helps just to be understood, so… I understand! Take care.

  • Gracie says:

    I know you have already been proposed to but will you marry me? thank you for your candid outpouring of what i have been saying for years but have recently, stopped saying because it isn’t worth it to me anymore.

    seriously, it is the outward opinion of others that i “look just fine” that drives me to the edge. i look fine. i look so happy. i look like i am truly enjoying life.
    if only they knew what it took for me to get out of bed that morning. if they only knew the pain i smile through and the constant movement i create in my body to block the actual pain. if they only knew that sleeping for 12 hours ain’t shit!
    if only they knew that i can’t play “slug bug” like everyone else… (god bless my little Milo. i taught him how to play it and keep mom out of pain)
    not a day goes by in which i don’t remember or am not reminded that everything SHOULDbe fine. i look fine.

    i’m not

    i’m tired

    i’m in pain but…

    i’m strong

    i’m hanging in there

    i’m on my own timetable

    i’m me

  • Caroline says:

    I suffer from Double Depression and Celiac Disease as well as a few other issues, so while I can’t 100% relate to what you’re going through, I completely understand the pain and difficulty. Bless you for your blog and for “keeping it real”.

  • Beth says:

    sweet lady. I sometimes go weeks and months where things are ok but then all of a sudden my body goes into I protest mode. This also can last weeks and months. I understand where you are coming from. People just refuse to see or understand that some days I got it and some days I dont. Sometimes the days I dont have it stretch out for what seems forever.

    I am lucky I work from home with understanding people who get that I have bad days and all I have to do is say I cant do it today. I fall asleep on and off all day no matter what sleep I get. Some nights sleep never comes. Sometimes sleep does not come for days or weeks. Little or no sleep at times.

    And pain I am always in pain. Almost two years ago in April I began shaking, tremors and large muscle movements. Sometimes my muscles cramp up inside with excruciating pain. My muscles tighten up and get stuck in place. I end up in terrible muscular pain. I get woken up in the middle of the night shaking and I am not even cold. I will be sitting doing something and all of a sudden my body shakes or my arm flies up for no reason. As I am walking along all of a sudden I find myself walking sideways or changing direction beyond my own control.

    I walk into walls and get migraines. And I can go weeks and months where my insides are so painful and I visit the rest room regularly to have the diarrhea.

    I shared this with you because I think you need to see that you are not alone. You are not the only one who needs to hear that others are in pain like you.

    Even if we do not know each other. I care for you because I understand.

  • Joe f says:

    Many stories with different illness , injury or other health issues. For me I’m a leg amputee and have brachial plexus nerve damage to my shoulder and arm. This was from a motorcycle accident. On a normal day if a doctor asked me my pain level it will be a 5 1/2 out of ten, ten being to worst. Mostly my arm and hand feels like its being burned with ice from the nerves firing. Also I get leg phantom pain sometimes but it mostly feels like bugs under the skin, it’s also nerve related. So when I give the dr a 5 1/2 painn level it hurts extremely bad but after 7 years it doesn’t show on my face. Then the 5 1/2 was to much to handle with ingesting 500 mgs of oxycodone plus 40o mgs of other narcotic meds then add 5000 mgs of nerve meds all in a days medication routine. Ya enough to kill 7 or more people. But after many years I’ve become almost numb to normal pain days with only taking mall amounts of medications to live a hard life. But those normal days would be enough for so many to give up living and people do unfortunately. But I do have days about 2-3 times a week either for 4 hrs or 16 hrs that hurt so bad not even taking 10x the meds will help stop the burning or help my leg stump from shaking so bad sleep isn’t possible. A couple years ago I tried to start a business again and after so many hard days not being able to provide my clients what they need we closed up shop and claimed bankruptcy, using up every dollar I had including loosing my house. A friend tried to put me to work doing sales but I failed again from not being able to be reliable. When I hear people talk about people using programs like social security disability, Medicare, Medicaid, food stamps or other government it makes me sick. They don’t understand how others ailments prevents them being independent for their family or themself . If given the chance at a healthy life after health issues the people leading would be those having been through turmoil. What they need to know is a strong mental personality is just not enough sometimes and the family member or friend they see happy today can be bed ridden tomorrow. With that so many people living this way may be able to be independent but just cannot afford the surgery and healthcare cost to get there. Having been through years of hospitals surgeries medical bills not being able to play with my little girls has provided me incite to what’s important and how people should be treated and not left for dead or on the streets to wither away so others can be blind to facts of life. We must become a more compassionate country and realize how important it is to them not to be so blind and quick to label those that need programs like the affordable care act bums, scammers, losers or leaches on the tax payer because they or their family is only on minute away from being those they label. Those that have their health already have more than the millionaire cancer ridden person clinging to their last possible days. It isn’t hard to know empathy if one rids their blind hate not in a country rich as ours because we are. Having what Americans call poor is in reality wealthy. Having wealth and freedom means nothing if we do not help our fellow Americans in need. Becoming disable has taught me what it is to live and what’s most important, that what is people. Every chance those that know how hard it can be has the experience and understanding to teach people blind and deaf of importance and it cost. I’m glad we have a president that does know because of the struggle he’s witnessed his mother die of cancer. Obamas mother didn’t have to struggle with anything besides the cancer if more people had a vision of empathy towards our people. Now it’s time to defend the ACA and expand its reach. Fight

  • downcasteyes says:

    I just wanted to say that you are not alone! Everything you’ve said here is so terribly familiar to me too. While my medical situation is different, your perspective is exactly what I’ve been dealing with, thinking about and feeling of myself for the last 20 years of my life. After years and years, and doctor after doctor, I finally just a year ago found out all my ailments are attributed to three things – Asthma, Sjogren’s Syndrome, and ultimately Lupus.

    Thank you for being so candid and honest. I wish the best for you!

  • miss m says:

    I’m thrilled you finally found a diagnosis. I hope that helps you in your quality of life. Thank you for the kind words of support! It means a lot.

  • PickledGinger says:

    Say it, sister!

    I keep the crockpot next to my bed, and a shelf stocked with ingredients, for the days when I can’t do more than make it to the bathroom a couple of times.

    Chronic fatigue (lc because no diagnosis), chronic abdominal pain and diarrhea (undiagnosed), chronic back and neck pain and sciatica and cetera, chronic muscle pain, orthostatic intolerance (POTS, I think, but undiagnosed), headaches when I sit or stand (OI-related), migraines often triggered by the orthostatic headaches, disrupted sleep, memory and concentration problems, and so on.

    Because I suffer from geek answer syndrome — and because I have sufficiently short an attention span these days that I’ll not be looking to see what you’ve tried, apart from everything — a few ideas.
    * IBS: An article I read last week attributed maybe 50% of IBS-d (diarrhea-predominant) to bile-acid diarrhea. Or was it bile-salt diarrhea. Anyway, worth finding and showing your GI people, if you have them.
    * Migraines: You may have tried this, and it may not work for you, as nothing works for everybody, but … I just started taking the herb feverfew as a migraine preventive. (Widely Rx-d in Germany and elsewhere in Europe for that purpose; recent studies also have shown butterburr to be at least as effective as the drug against which it was tested.) I’ve gone from about five migraines per week to one or two. Wow.
    * Fatigue/brainfog: Some of this is now thought to be attributable to mitochondrial dysfunction. Dr Jacob Teitelbaum, in his books and on his site, is very gung-ho about ribose. (Yes, the sugar; the R in RNA.) I was very skeptical, but even more desperate, and found a really good price, and figured the risk was low (it’s sugar), so I tried it. It hasn’t dented my fatigue, but it’s done a lot for my brain-power — more than caffeine, more than Ritalin. (Look, Ma, complete sentences!!) It also has brought back my ability to sweat, which given the weather is a good thing. So, guess I’ll be looking into related supplements.
    * Um, there was something else. I think there was. Oh! actually on-topic …
    * “Sick Girl” by someone whose name I can’t recall is a really good book about living with an invisible illness. The author became ill during law school, and ended up having a major coronary, then a heart transplant. She’s beating the odds so far, but will never ever be well. Talks about trying to look and act normal, talks about people not believing she’s unwell, gets the point across even to skeptics because everybody believes in heart trouble. So it’s a place for the conversation to start.

    (Yes, I look ok when you see me, because if I’m not doing really well, I can’t get out of bed; or if I get out of bed, I can’t finish getting dressed before I need to lie down; or if I get dressed, I can’t make it to the car; or if I make it to the car, I start to be dizzy and too stupid to drive and have to circle the block and come back; or …)

  • brenda says:

    My heart goes out to everyone here, and also THANKS for sharing your hysterectomy story!!! I am 3 months post op from radical hysterectomy for cancer. Today is the first day that I can move at ALL without screaming pain due to my lymph system damage causing fluid build up everywhere. I have refused radiation and at the moment am cancer free. I intend to stay that way, but also have other invisible health issues. Like you, people don’t see the whole me, just the “good days” me! Thanks to EVERYONE here for sharing and being so awesomely human!

  • miss m says:

    Glad to hear you’re starting to feel better! Best of luck to you for continued health and happiness. 🙂

  • Jane says:

    Hey …. Just … Thank you.
    It’s such a relief to know I’m not a fake … This is real, and to read your blog on this … And hysterectomy … I’ve just been through that ! … With ovaries … So the full Monty … Is like feeling a cool summer shower drench me on a blisteringly hot day … I’m refreshed and renewed with the confidence I am not alone.
    So … Once again … Just … Thank you x

  • miss m says:

    Thanks for the kind words of support. Rest assured, there are many who suffer with “invisible” illness and you are definitely not alone. I’m glad my words were able to help you. All the best.

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