Misbehaving in prison is a bad idea. The powers-that-be do not approve of bad behavior, and they have some unpleasant tools to discipline those who break the rules. Solitary confinement is the current punishment—along with extending the time to be served before the possibility of parole, but in the bad old days, they had The Hole.
The Hole was solitary with some other sadistic touches thrown in. It was usually kept dark, and sometimes sound-proofed so that even the noise of the other prisoners was muffled. Unheated and damp cells were often used, along with nothing to sleep on, and a bucket and/or a hole in the floor for a latrine. At Alcatraz, the prisoner’s food wastossed into a blender and reduced to a sort of wretched smoothie with some beet juicethrown in, so that whatever flavor there might have been, became beet. Food was passed in through a slot, so that even that necessary moment of interaction was deprived of all humanity. Guys often came out of the Hole not quite right in the head.
Nowadays, such practices are forbidden as being inhuman and torturous. But the Hole still exists—in the heads of people with depression.
It’s hard to explain to a person who has had the good fortune to never have experienced such a thing. But if you know someone with depression, odds are good that they know about the Hole and that they’ve done time there. The Hole is the place where hope and light and the view of tomorrow have all vanished. There’s just an endless gray expanse of I’m Screwed as far as your brain can see.
In the Hole, we lose the ability to remember what life was like before it. We lose the ability to project life after it. We can’t imagine that there is a way out of it. Life will just continue being a struggle—fighting to remember things, fighting to find the energy to eat (food tastes bad) or to walk (the Hole includes a level of fatigue comparable to having just completed a week of the flu). Interacting with other humans feels too difficult to contemplate—and even if that weren’t the case, the conviction that no one would tolerate one’s worthless presence except as a strained courtesy is part of the package.
It is a fundamental sense of having lost one’s humanity, of being the shivering dog in the ASPCA ads, alone and unwanted and covered in fleas. The Hole is why depressed people sometimes commit suicide.
This is why anti-depressants are life-savers: They put a floor in the Hole. As one sinks into the sense of detachment and enveloping shame—or worse, into the bog of numbness—there is a sudden stop. The sides of the Hole no longer rise so high you can’t see out; with luck—and the right dose of the right meds—you can even see that you could climb out, if you can find the energy. The sense that it will not always be like this is achievable, if not always automatic. Sometimes you can even conjure up a happy memory and think, “Life has not always been like this.”
If your brain is normal, you could take anti-depressants for a month and they wouldn’t give you a high. (You would have trouble sleeping and break a horrible sweat, and much worse is possible, so please don’t try it.) They aren’t the ‘pep pills’ that were used back in the 60’s to try to banish depression. They just keep your serotonin (and in some cases, norepinephrine) levels from crashing below the threshold of functionality. They don’t put you back in the normal world—but they do add a lightbulb and a window looking outside. This is literally life-changing for a person with depression. It’s no longer the Hole, just solitary confinement until we find our feet again.
I have extra experience with the loss of perspective due to brain irregularities, and this is because I suffer from migraine. Migraine is caused by abnormal electrical activity in the
brain—one book I read described it as a wave of electrical potential sweeping out
like ripples from a stone tossed into a pond. It causes some of the semi-automatic functions of the brain to misfire. In particular, it messes with the limbic system which affects memory; social cognition; rage and passivity; and overall emotional function. In
other words, it literally scrambles the circuits that add emotional flavor to our memories and ideas of the future.
There is a moment in the depths of a migraine when one has a wave of panic: “It’s not getting better. It’s always going to hurt like this. I can’t take this much longer!” and it seems as though the pain has been going on for hours. (For me, this moment usually hits about half an hour or forty minutes into the headache—right before the meds kick in.) This overwhelming sense that migraine is not a passing event but is the new reality of life—that is the closest thing I know of to the Hole in any other realm. It’s a comparable level of not being able to access memories or project a future outside the present emotional context. It’s literally not possible with your brain in that state to have the usual processes occur.
I mention this for two reasons. First, because I had a friend suddenly understand what the depression Hole is like, because I drew this analogy and she has migraines. Second, because the lessons I learned from migraine turn out to be useful in dealing
with the Hole of depression.
1) Accept that it is happening. You can’t make a migraine—or depression) better by just telling yourself it’s not real. This is not a weakness of character: It’s a medical condition due to unusual brain activity.
2) Get to a safe place. You can’t make it go away by trying to act as though it isn’t there. You have to take care of yourself and not try to do anything except get home (or to another safe place) and ride it out.
3) You can shorten the course and severity by taking your medication—and if you don’t have any prescribed, by seeing a doctor as soon as you can get someone
to take you.
4) While you can’t make yourself not feel like your life is bad, you can remind yourself gently but repeatedly that this has happened before and it passed. Sometimes that feels like stating utter nonsense, but the act of focusing on the
words, “This is temporary and things will get better” can help you stay out of the whirlpool of panic or sorrow. (For depression, I say that out loud; for migraine, sound is painful so I just think the words over and over.)
5) Accept whatever help you can get. For migraine, that means having my kid or spouse bring me my cold flax bags, going in a dark room, and lying very still until the medication has done its thing. If I am away from home when the prodrome (pre-migraine weirdness) strikes, I need to call someone to drive me home. Being in control of an automobile is not safe when I’m in the throes of migraine; and sometimes, when I’m in the Hole.
6) Have compassion for yourself. This is actually the hardest step to take, and one I am only now getting good at. If a friend was going through a migraine, or suffering from depression, I’d never expect them to be able to maintain a normal schedule! Try to grant yourself the same compassion you would show a friend. It’s not being ‘selfish,’ it’s being reasonable and fair. It’s okay to be fair with yourself, and it’s necessary to be reasonable if you want to accomplish anything lasting in life.
Some people have situational depression, that is, they are depressed because of something bad happening in their lives: the death of a loved one; the loss of a job; getting a bad diagnosis (or worse, having symptoms and tests and not getting a diagnosis, which is very scary). It’s a natural and common reaction to something shitty happening in life. Some people have affective depression, that is, their emotional mechanism (affect) is out of true due to neuro-transmitter imbalances in their brain.
Whichever is the cause, you can find yourself in The Hole. Sadly that’s how it is: You discover you are there. Like stepping on a rotted plank, you know after it happens that you’re no longer on the level but sunk in the mud. That’s okay, you know it now. Take a few deep breaths and then remember the six suggestions above. Accept it’s real; Get to a safe place; Medication; Remember it will pass; Accept help; Have compassion. In fact,if you have a friend or a loved one in trouble, you can help them with any or all of those steps—you can grant that help; you can provide transportation; you can reassure them that it will pass; you can get them their meds or support that trip to the doctor.
And please, share this article with them. It is great solace to learn that you’re not theonly one who has done time in The Hole, and a ray of hope to find that others have found their way out again. You’re not alone; this is not a dreadful fate meted out to you.
It’s a medical issue, and it needs to be treated as one. Nobody would tell someone with heart arrhythmia to “snap out of it.” You’d tell them—or yourself—to take your meds and take action, doing what is known to have helped before. And you would have compassion for their suffering..
A guest post by reader Katrina Branch. Katrina is working hard on her professional writing, and I can’t wait to share a link to her newest book. (She’s shared a bit with me and it’s going to be a big success). Byronsheroes welcomes guest posts, and as editor I feel lucky that the site has so many talented writers (many of them professional, I admit to be an amateur). Thank you Katrina for sharing your insight and also your talent as expressing yourself with the readers of the blog!
Sometimes I envy people with a cane. If you are using a cane or have an arm in a sling, people look at you and think, “That’s unfortunate. I hope it’s not bad all the time.” They have sympathy; they can see that there is something medically wrong. If you are slow or late or have to back out of something, they think, “Oh, it’s probably that bum leg slowing her down,” and they are forgiving.
When your medical issue is invisible, people aren’t so kind. They wonder, “Why is she walking so slowly down the grocery aisle? Is she lazy?” They tell you that they are disappointed that you’re late to a meeting; they question whether you value them. Sometimes they don’t say anything, they just stop asking you to do things with them. Even if you say, “I’m so sorry, I’m having a bad day,” they think you mean that you’re lazy or in a bad mood and just need to suck it up.
I may very well be in a bad mood, but I can’t just ‘suck it up’ and be efficient. Some days it takes all I have to just get out of bed and get to the store at all—I’m cruising slowly down the aisle because if I make myself keep walking then I won’t just abandon my cart and go sit in the car and cry. Sometimes the only reason I make it to a scheduled event is that I want to convey that I *do* care, very much, about the person I’m meeting or the group whose activity I am attending. I’m late because I have to actually prod myself to do each little step: Brush teeth; brush hair; put on clean clothes. Eat something, or at least bring a protein bar along in case the blood sugar gets dangerously low. Drink some water. Put on shoes. Get the purse. Put on the coat. Go out to the car—Wait! Go back, get the keys, then go out to the car. Put the garage door up. Back down the driveway, close the garage door. Deep breaths, remember where you are driving to and plan a route. Every step, every piece needs to be thought about, because the auto-pilot most people rely on for daily living is offline for the day, the week, or—in really bad times—the month.
What I hate most about depression is that it’s so hard for normal people to grasp how damned hard it is to function at times. It’s not that I’m ‘not trying’ it’s that I can’t. I only have so much mental focus and energy, and I have a child and a husband. Maybe the dishes aren’t done every single day, but at least we have something to eat off of; my kid gets to school on time; most days I can get dinner made or reheated. I get the bills paid, the cats fed, the toilet paper restocked. Sometimes that’s a labor that Hercules would struggle to complete. When a well-meaning friend says, “Have you researched X?” as a possible mode of treatment, I feel like screaming, “Don’t you get it? I can barely read the comics! I can’t research anything. I can’t think that clearly, and I can’t make that plan and spend so much time struggling through that process. I’m barely able to make myself eat!”
If I developed a limp when my depression gets bad, I think people would look at my hesitant steps and my cane and realize that I’m not always *able* to do what I can do on a ‘good day’. And I have no ability to predict what makes a bad day or a good day happen. I can do certain things that increase the likelihood of a good day: Get enough sleep; get some exercise; eat healthily; take my meds. I can try to avoid things that make a bad day more likely: Avoid some kinds of situations and people that awaken ghosts of dreadful times past. But sometimes for no apparent reason the depression hits like a ninja, maiming my ability to function. I have to limp through the day (or days) until the unseen injury heals.
I hate knowing people think I’m ‘unreliable’ because that sounds like I’m busy playing Nintendo or watching junk TV instead of meeting commitments or helping out with things. I’m as reliable as I can be within the limits of my illness. I don’t want to ever postpone or cancel something we’ve planned; I don’t ever want to not complete something I said I’d do! I want to be on time, on cue, thorough, and helpful. I even want to be cheerful and fun. And sometimes, I can, I do, and I am. But other times—I just hobble along leaning on my invisible cane, distracted and disabled by my invisible injury. It’s not about you, and really, it’s not about me. It’s just depression, and I can’t toss my cane away and jog to the corner by ‘sucking it up.’ I can’t—not I won’t. It’s not a choice, it’s a condition. If I had a cane, you’d understand.
Remember how drug commercials have this big, long list of side effects? And how, when you get a prescription filled, they give you an encyclopedia’s worth of papers about that med? There really is a reason for that.
Once in a very great while, someone will have one of the extremely rare side effects on that list of extremely rare side effects. Lucky me, I won that lottery. Now, if I could only win the Powerball…
Even as I write this, I still feel a bit detached from the situation. Thank goodness I don’t find it funny anymore. Though, you gotta admit, my telling the receptionist to calm down and take deep breaths while calling about this weird suicidal ideation thing… That’s pretty funny.
But I digress for comic relief.
What happened scared my husband, my father, and probably a few other people who are uncomfortable talking about this kind of thing. When we’re talking about medication and the brain, no one really thinks that a super rare side effect is going to happen. That’s the reason that it’s a super rare side effect. But it does happen.
Before I go on, let me just say that this is NO ONE’S fault. We had been working my dosage up slowly to get me acclimated to the new drug and I was doing just fine aside from still having some seizures. I had already been weaned off the old drug so there wasn’t an interaction. I don’t blame anyone and no one is at fault.
With that in mind, what follows is what I can remember when we went from 100 to 200mg of the antiepileptic med. I took the first one at night, figuring the sooner the better. I noticed I was sad, but I thought that was because of the phenomenal cost of the pills. So I was doing what I usually do in this case: mentally beating myself up. Fortunately, my daughter was on Facebook and we had a good time pretending to be Starfleet officers. By the time I went to sleep, I was feeling much better.
The next morning, I woke up feeling alright, still smiling about the previous night’s fun. Then, about a half an hour after I took my morning pills, that’s when things started to go sideways.
I kept looking over at the steel hair stick on my nightstand and wondering, for no reason whatsoever, if puncturing my jugular with it would kill me. That should have been the first sign that something wasn’t right, but it seemed like what I should be doing. Nobody suggested it. I wasn’t reading or watching anything that influenced me. It was just part of the list of things I should do that day.
So I started researching which would kill me faster, puncturing the jugular or the carotid. Turns out, the carotid will make you bleed out faster. Since I didn’t remember where exactly in the neck that was, I started looking at physiology diagrams to find the best place to stab myself without making too much of a mess.
That was when Ken asked me to look up the address for the new Veterinarian because my dog had an appointment. I felt mildly agitated because he was tearing me away from my research. Yes, the research on the best place to stab myself. It was okay though because he was taking the dog and I was to call him with the info.
Through all of this, the linear equation of A (stabbing) + B (carotid artery) = Dead wasn’t making sense. Stabbing was something you did. The carotid artery was a thing in my body. The two weren’t associated in any way at all. It was just something I was doing. Like a honey-do list, but with sharp things.
Even after I called Ken with the address, I still hadn’t been jarred out of this state. But there was something that didn’t seem quite right. When I had the diagram in front of me that showed me the best place to hit my carotid, something seemed weird.
I thought maybe something was wrong with my meds but I didn’t want to bother my neurologist’s office with nothing, so instead I called the suicide hotline, thinking they would know the answer. I really didn’t want to kill myself, but stabbing myself in the carotid just seemed like the thing I should be doing.
And that was what I calmly explained to the man who took my call.
Just as calmly, he explained that I should call my neurologist and tell them what was happening because I was having what he referred to as “suicidal ideation”.
Which is weird.
I mean, it’s not like I wanted to die or anything.
It was all just so weird.
And that’s what I told the receptionist at the neurologist’s when I called. I had this weird thing going on and the man at suicide hotline said I should call there.
That was when I thought something might be wrong, because she started getting really upset. So I told her to calm down and take deep breaths, that it was okay. I just had this weird thing.
No big deal, right?
After I got off the phone with her, I called Ken and told him what was going on. He very calmly told me he would be right home and I should just stay in bed. I was pretty pliant at that point and feeling kind of sleepy, so staying in bed sounded okay.
I don’t remember much of anything after he got home. I know he took a call from the neurologist. Then I think I slept for a while. I remember going to the doctor’s office later to pick up free trial packs of the new dosage because Ken wouldn’t let me stay at home alone. And that also seemed weird to me.
During that entire time period, it was as if all of my actions and their consequences were completely separated from one another. If I stabbed myself with a sharp object, nothing would happen because all I was doing was moving my hand. My carotid artery was just this place that existed on my body and not the target of a pointy thing. It would still continue being an undamaged thing on my body.
It was so weird.
Two days later, I was perfectly fine. Granted I was still having some seizures, but they’re not as frequent. I am holding out hope that increasing this medication at a slower rate will control my epilepsy. I’d say it can’t get any worse, but as I found out, it most certainly can.
Thanks Maria for sharing a very personal story, but bringing up a point we should all be aware of : Medication comes with side effects. Some of them are very dangerous. Maria recognized this was “weird”, and thankfully reached out to get help. It is indeed not the fault of anyone, but it is important for everyone to be aware of th
As we all know, there are good days and there are bad days. Yesterday just happened to be a good day. After an afternoon at Disney, I got to have coffee at a little Bohemian place without having to be wheeled in. So YAY! That trip to the coffee house reminded me of just how much I missed that simple pleasure of being out around people who were simply enjoying themselves. The murmur of conversation seasoned liberally with peals of laughter was soothing and it made me happier than I have been in a while.
Yes, I said ‘wheeled in’. Last week, my husband and I came to the decision that, if we wanted to keep going to Disney on a regular basis, I would need a wheelchair that didn’t cost us $12 per visit to the parks. So, thank you Craigslist, we found a nice one with good brakes for $50. That may sound like a lot, but Ken did some research and discovered that, brand new, that same chair cost $350. Ken also found a place to get it adjusted for $35. We can’t complain. That might sound like a good day, but for me, it really wasn’t. It was pretty awful. After all, how often do you get to be reminded that your life is going to Hell and you have to buy the hand basket, yourself? Talk about adding insult to injury.
So, of course, I had guilt. I felt guilty because my husband has to push me around in this ugly contraption. I felt guilty because we had to actually spend money on this thing. I felt guilty because, once more, I failed to get better despite money we spent on medications and the fact that I had to spend money to get medical insurance. I felt guilty because, if I don’t take the costly medications, I have a 60% chance of dying if I go into status epilepticus. I have guilt because if I die, my husband will probably drink himself to death.
I know at this point you’re wondering what the title of the article has to do with anything I’m writing. Don’t worry. We’re getting there.
Ken has been working to find a good price for the new medication my neurologist wants me to try. Vimpat is $625 for a one-month supply here in the US. It’s $83 for 100 pills from Canada, but it could take as long as three weeks to get the meds here. Which means that there is every chance that I could go into nonconvulsive status epilepticus (NCSE) without those meds. The conundrum there is that we have been building up the Vimpat dosage while weaning me off the old anticonvulsants so my body is relying solely on this new medication.
NCSE, or nonconvulsive status epilepticus occurs when an epileptic has a seizure that lasts more than five minutes. During that time, I could stop breathing. My heart could stop beating. Any number of things could happen to end my life. On top of that, NCSE can look like drowsiness or irritability for those of us who don’t have convulsions, so it’s pretty hard to diagnose. As if that all weren’t scary enough, NCSE has a sixty percent mortality rate.
Which brings us (Finally!) to the lessons I learned from one of my favorite animated movies, “Kung Fu Panda”. The main character, a panda named Po, is “accidentally” appointed the long-prophesized Dragon Warrior. Afterwards, the ancient tortoise, Master Oogway finds Po stuffing himself full of peaches since he eats when he is upset.
Oogway tells Po one of the most insightful things I’ve heard, “You are too concerned with what was and what will be. Yesterday is history. Tomorrow is a mystery. But today is a gift. That is why they call it The Present.”
There is nothing we can do about the past. It is already gone and cannot be changed. We do not know with any certainty what will happen in the future. All we have is right here and right now. This moment.
As terrifying as the future possibilities might be, I cannot do anything to change them. I can prepare, but to constantly anticipate every possibility will only make living life more of a challenge that it already is. Like I did last night at the coffee house, I will try to live more often in the moment because to do less would be to rob myself of what time I do have left.
The other day I awoke, took my first set of morning pills that have to be taken on an empty stomach (and then no food or drink for 30 minute after), and then did something very stupid.
I forgot to take my other medications, the ones that require food.
My dog decided to go ballistic over a new puppy next door, and I was busy dealing with his barking. I then just went on with my day.
WHAT A DAY IT WAS!
I began to feel very weak and unwell. This was not only physical, but also mental. Now, those of us with a chronic illness deal with a lot of depression. Pain demands a great deal of energy, both mental and physical. I am aware that one of the medications I take does not “build up” in the body and missing even one dose is dangerous. I was about to find out how dangerous.
I had cramping, a blazing headache and started shaking. What I was truly most frightened about was the depression and anxiety that set in quickly. Each hour brought more pain and more anxiety. I felt I simply could not live with so much pain and depression. While not suicidal, I was using all the tools and tricks I knew to keep myself somewhat calm.
I began monitoring my physical symptoms, making sure that they did not escalate to where I would need to go to the hospital. I was ready to go in if needed, and knew it would be important not to drive myself. I had the number of the local taxi service out, and also had texted my husband at work. Thankfully, before I got to that point, I figured out the problem.
Do you have a tool box full of tricks and treatments? The time to “wing it” is not when you are in the middle of a crisis.
So what were the tools I use? What’s helped me in the past deal with a sudden onslaught of pain and depression? Here is the short and the long version! WHAT TOOLS DO YOU USE? PLEASE SHARE! Because you can never have too many tools when dealing with chronic illness!
Cliff Notes Version
1.Depression lies (thanks Bloggess)
2.Laugher is the best medicine
3.Distraction is important. (thanks youtube)
4.Have friends on stand by at all times.
5.Nature is good
7.Stop trying to do stuff, especially stuff you don’t want to do.
8.You have an illness, of course at times you will feel unwell!
9.Share you are having a rough time of it. (this includes sharing with your physician or go to the ER if things really escalate)
10.Don’t forget to take your medications correctly! They can only work well if you follow directions on when and how to take them!
My Tool Box
1.Remember the Bloggess. Jenny Lawson (aka the Bloggess) has blog posts that are helpful in two ways. The first way is she writes about the important fact that DEPRESSION LIES. My depression was lying to me saying “This pain is so horrible, I can’t live with this. Obviously the medication is not working. You’ll never be able to do anything other than suffer….” I just kept remembering it was lying to me and just a few days ago I felt great, and I would feel good again soon.
2.Remember the Bloggess. Again. Because it’s important to DISTRACT YOURSELF. That means avoiding anything depressing, like self help books about depression. Or sad movies. Or the news. You have to laugh, and some of her blogs will make you laugh. Think giant metal chicken, and you will survive. I also recommend the youtube bloggers Simon and Martina at Eatyourkimchi. Martina suffers from a chronic illness. She gets your pain, but she also shares the comedy aspects of life in South Korea. You will laugh.
3.Think “Kitten Videos”. My daughter called me from half a world away, where she lives, and told me “Watch kitten videos”. Anything that makes you go “Awww” works well. Also cats will make you laugh. Avoid anything with Sarah McLaughlin, we want happy videos about animals. This cat site has calming videos of Persians. The most famous is India the kitten. Also call your own pets over, nothing is more calming that our pets!
4.Remember your friends. I’ve recently moved to a new neighborhood, and I really don’t know anyone well enough yet to knock on their door and say “Can I just sit here for a bit, I’m scared.” Instead I have a mental list of everyone I could text and call that would drop everything to be there for me. Just to listen. The list was topped by two great girlfriends, and they also have my husband’s phone number. The point wasn’t that I talked to anyone, the point was I knew I could talk to someone if I needed them.
I would also like to especially thank my friends, who while I did not call them, are always there for me. When you give someone with a chronic illness permission to call, you are doing a good deed. Just the KNOWLEDGE that I could call my friends made me feel less anxiety and safe. Want to be a hero? Just give a friend permission to “call if needed” with no judgement- just support. Even if they never call you, that knowledge “I can call” is a wonderful gift that will help your friend through tough times.
5.Go outside. If this was a real depression, not a lack of drug reaction, this would have worked pretty well. It was a beautiful day and the combination of sunshine and walking the dog would have lifted my spirits. I felt anxiety so I took the dog for a walk in the wooded area behind my house, and nine of out ten times, this makes me feel better and that at the very least I made the dog happy!
6.Break the rules. Dieting? Eat something you like, and forget the calories. Find a great book on Amazon, who cares about the budget! Order that $15 book and munch away on buttered popcorn. Indulge. You are interested in getting through the NOW, and you do whatever it takes. Probably a glass of chardonnay, or a bottle of chardonnay, or heck a barrel of chardonnay, is not a good choice. But for me, food and a book works very well. Also know your body. A glass of wine is very helpful for many friends with chronic illness. If it works, and you feel comfortable with it, do what works.
7.Don’t try too hard. This is the most difficult for me. I hate that when I am depressed or in pain I have a “Wasted day”. NOTHING is going to get done. I’m just going to deal with the illnesses all day! So I keep trying. I cleaned the litter box, and I was “There I did something!” But I was exhausted and felt guilty as that was all I had done. I had to then assure myself “You have a serious illness, and taking care of yourself and dealing with this illness IS YOUR JOB.” I assured myself I would feel better, and it was time to stop faking being well.
8. Give yourself permission to feel unwell. This ties into number 7, if they day is a write off it’s fine. It’s not a write off if you are battling to keep sane and deal with waves of pain. That’s job enough, don’t try to throw making a huge dinner or cleaning all the bathrooms on top of it. If you are not a positive Pollyanna type, accept it. My neighbor with RA is very upbeat. She is “In the past we’d be in wheelchairs!” (I have also hints she is on some wonderful meds I avoid!) I’m not going to be upbeat all the time, and that’s fine. We should not let others tell us how to deal with our personal chronic illnesses. Grumpy cat types unite!
9. Make sure people know you are feeling unwell. Ask them to check in with you. I sent my husband a text, telling him how things were. He called right after he got out of a meeting. If you know someone is going to check on you, especially if you are alone, you’ll feel safer. I even reached out to people in Facebook, just in a PM, “I’m feeling bad, I’m having a bad day.” They checked back throughout the day.
10. CHECK TO MAKE SURE YOU DID NOT MESS UP YOUR MEDICATION! When I felt myself getting worse, I thought, “I’m going to take my next dose of medication early, I can’t wait another 2 hours.” As soon as I saw that pill container with the arthritis drug I felt instant relief. I still felt like crap but I KNEW WHY. Medicine timing is very important. Read the instructions, and be clear with your doctors about WHEN is the best time for taking a medication. My thyroid medication took almost 6 months to figure out. When I took it at night on an empty stomach, I suffered from insomnia! The middle of the night, I awoke about half an hour later with insomnia. First thing in the morning works best. However, not if I forget half an hour later to take the other 3 medications I rely on. Medication juggling is very difficult. We have to be vigilant.
Medication mix ups can also be very dangerous. I was getting ready to call my physician right before I discovered what had happened. I knew that I was getting worse instead of better, and that my “tools” that usually work well were failing me.
…..also you don’t have to have a chronic illness (or two of three) to share your TOOLS that get you through the tough times. I would love to hear more ways people have of making it through the tough times.
I like to complain to my primary physician a lot. She sees me every 6 weeks to help me manage my chronic illnesses and coordinate all the various specialists I see.
She also helps keep things in perspective.
That perspective is not always what I want to imagine it to be.
I was complaining about having great difficulty in planning anything. At any given day, and indeed at any moment in that day, I do not know if I will have a flare from my arthritis will pop up. I don’t know if I will suddenly for no reason just feel totally exhausted and need a nap. I don’t know if I’ll get a horrible headache or a dizzy spell. A side effect from one of my many medications could just decide to really bother kick it up a notch. I’m a total crap shoot when it comes to making plans.
My doctor just looked at me and said “Well, you know you have a very serious illness.”
Oh yeah, I forgot that.
Normal is out for me, for a very good reason. My doctor has to remind me, I suffer from a very serious illness. I just like to pretend that there is some other reason for all the things I’ve had to change about my life since becoming ill. Perhaps a new medication will help? Maybe if I could get more sleep? If I could manage my pain better? There is always this deal I am working in my head that will make my life normal again.
Then I am reminded, I have a serious illness.
My doctor, who has been my primary physician for over 20 years, tells me that after the first year, most chronically ill patients begin to find the little things in life are also important. That much joy and happiness can be found in places other than Bora Bora. I didn’t at first believe her words of experience. I was sure at first that doing what I used to do, was the key to happiness. I think most people newly diagnosed with a chronic illness also feel this way. Did you play tennis for hours each day before… well tennis will make you happy again! Loved horseback riding? Sure, you can probably show jump horses again! Hiking in the mountains, that 5 hour hike up the mountain, as soon as you can do that again, you’ll be happy!
It’s not that what you could do before won’t make you happy. It’s just that it won’t be easy, and you may need to modify it greatly. It’s going to be impossible for it to make you as happy as it did before because now you have to plan more and perhaps do less.
I love to travel. Well, it’s better to say I love to be in new places and enjoy seeing new things. No one really loves the “travel” part!
However, that travel part is now a far different thing than it used to be. A plane trip requires wheelchairs in the airport. It’s not as much fun as you might imagine. Flying in those small seats people normal complain about is horrifyingly painful to many with a chronic illness. A recent plane trip I took was accomplished only by taking painkillers that were only for use “on the plane”. In other words they would knock you out if you took them at any other time.
The compression on my spine from sitting up straight, despite the use of pillows and even a special steroid shot, is enough to make me feel faint at times. I do want to travel more in the future, but I plan to travel far less than I did in the past. Flying now requires pain medication that makes me feel nauseous and much planning. It is not just annoying and bothersome, the complaints we all have about flying, it’s something to be endured if possible. It’s just not going to bring me as much happiness as it did in the past.
When I complained once I returned from the trip to my physician said again “Well you have a very serious illness.”
I’m allowed to complain, but there is a reason flying is hard. There is a reason planning things is hard. There is a reason sleeping is difficult and even the simple chores of living are hard work.
I have a very serious illness.
Forgetting I have that illness is not the answer.
Adapting, following difficult and sometimes complex medical directions, and taking many drugs is not the answer either. Rather is it not the answer I want which is “feeling like I used to feel”. No, all the new routine and medication is a way of managing my illness. A day of feeling “better” doesn’t mean I am better. I can’t get better, better being “normal”. It’s impossible. It’s just that part of my brain wants to believe it is possible.
But, the fact is, as much as I like to pretend I don’t….
I have a very serious illness
Plane travel will hurt. Side effect from medication that helps will bother me. I will not be able to control when I have the energy to do things, no matter how much I want to do something. This is not going away. Things will get better as I manage this illness with the help of my doctors, but it will not be cured.
The perspective is fairly grim and often I just refuse to accept it!
That’s when I need a visit to my doctor to remind me. This is the reality of what you have to deal with, so let’s deal with this together. Just waiting for it to go away, so life can get back to normal, is not an option.
The media likes the happy stories. There aren’t a lot of happy stories with chronic illness. There are a lot of brave stories. There are a lot of stories of compassion and friendship and how good people can be when something bad happens. Those stories are rarely told.
There also aren’t many road maps for those of us with chronic illnesses.
We all have to make our own map for this seemingly much smaller world. We have to begin to appreciate that all we are missing, maybe isn’t all there is to life. It’s a world perhaps viewed from a sitting position rather than a rapid pace of seeing more and more and more. It’s a world of reflection, of appreciation, and hard work to manage our illnesses. It’s a world of friends that get it, and family that maintain it’s “fine” even though you know it always isn’t fine for them having to take on a new role of care giver. (If you are lucky it’s mostly fine. But you understand it’s never 100% fine for anyone in the position of caregiver).
So, I thank my personal physician for reminding me ,because of the honest relationship we’ve developed over the years….
“You have a very serious illness.”
I don’t need an excuse for not doing things I want to do. I don’t need an excuse for wanting to travel and being unable to do so. I don’t need an excuse for a nap, or for having to break an appointment. I have a very serious illness. I just have to remember that! It’s harder to do than you would imagine!
The title of this post comes from the old children’s TV show “Duck Tails”. The bad guy was a fox, and I would laugh because he would tell his crew ,in an attempt to be a good boss, “My door is always open, sometimes.”
This is the tale of my life.
It’s very lonely to have a chronic disease. I often want to have someone visit. In fact, while I may stress about it before hand, I always find I do better after having someone visit. Talking to a real live person, especially a friend, is very important.
The main problem is the unpredictability of any of these chronic illnesses. I have good friends that suffer from migraines. I have only had two real migraines in my life, both sent me to the ER as I had no clue what was happening. I can not imagine having to live with several of those a month. One friend lives with several a week. Her life is one of cancelled appointments. A migraine not treated early can incapacitate her for days. She must cancel everything and take medication and rest. This had not made her popular with her hairdresser. Lunch with friends is only planned with fingers crossed. If she wants to go on vacation, she plans in a few migraine days. She told me “If I want to see and do a certain number of things on vacation, I know I’ll miss at least one day to migraine. So I take an extra day of vacation to make up for it.
Her life is one of excellent health, 95% of the time. It’s that 5% that means she can plan ahead, but the migraine can cancel plans at any time.
My own life is based around “How do I feel this morning?” Timing is everything. If I am having a bad flare, I have to cancel things. Having my husband around helps. He can entertain company and if I need to rest I do so.
I really want to have my good friend Chip come visit. I always enjoy his company. He’s even giving me one of his grandfathers paintings, and I”m really honored. He knows I love REAL ART in my home as it gives such warmth to any decor. Something made by hand reflects the personality of the maker. I’m ready of have some of Chip’s family in the home I share with my family.
But, I keep delaying the visit.
First off, we are just moving into a new home. This home was purchased because of my arthritis. It’s one floor, but it’s from the 1970’s. Everything, and I mean everything, is just old enough to need replacing! Also, my health is reflecting the stress of the move. Boxes everywhere, and I’m trying to do a bit too much and paying for it. Then there is health care. To deal with the move I put off a lot of appointments and blood work and even starting physical therapy. The focus was the move.
Now i am playing catch up.
However, I keep reminding myself, Chip is one of those friends that won’t care. I care, in that I want to give him a good visit. I want to enjoy his visit. I would enjoy his visit no matter what, but I really would rather be having a good day!
I also have wool weekend coming up, which I haven’t even planned. This is a long weekend of wool and yarn shopping in New Hampshire. It’s where I stock up for yarn for the winter, and also wool to do my felted creatures. I have friends that will come and NOT mind if I decide to stay in bed, or I am up at 3 am because I am in too much pain to sleep. The problem is I MIND.
Pity is the worst feeling ever. If someone comes over during a really bad flare and they don’t feel pity for me they are cold hearted. But, people with chronic but invisible illnesses tend to hide our pain. We don’t want people seeing the time spent with tears and in the fetal position desperate for some relief.
I’ve written before about the curse of these illnesses.
People like to say “I am not afraid of dying, I’m afraid of being in pain.”
We’re in pain. No one asked us “So, think you can handle this pain?”
Seriously, this is the nightmare people fear more than death.
It doesn’t matter we often say “I can’t handle this.” You do. You just do. At one point I think each of us asks “So, I have no choice with this? I just handle it? Because I am bad at handling this. Really life? This is what I get?” (Life just laughs)
That “Everything is OK” image is something we even try to preserve for ourselves. I often fail myself when I mistakenly think “This isn’t that serious, I can keep going, I feel pretty good now.” Then I collapse into a flare brought on by my own over confidence. My doctors have clearly pointed out that I have to STOP doing things before I start to feel tired. I have to quit while I feel pretty good. This is very difficult. “I feel good, I can go to the grocery store also!” (NO NO NO NO)
This is alas very Un American. We’re supposed to push ourselves and run marathons and travel the worlds and crap. Right. It’s like the 100 year olds they write stories about that go cliff diving in Mexico. This is just a false “feel good” story. It’s amazing how many “feel good” stories make people feel terrible. Not running a marathon or cliff diving. No one writes artless about people with chronic illness that are normal.
I’m going to unpack some more, catch up a little with the doctor side of things… and hope to have Chip down for some fun in October. Also Wool Weekend will happen. I’m going to pace myself, and focus on getting the wool I really need for projects. I may not eat out. I can rest while others enjoy going to “Just one more stop”. Also I have good friends that drive for me, which means I can enjoy myself even more. Driving is painful, I can do it, but I do much better NOT doing it. If my friend Natalie drives it means I can enjoy the fun part, the shopping. It’s a gift she gives me.
I need to learn to trust that my friends won’t judge me and won’t be upset if I have to cancel or say “I just need to rest now, thank you.”