When I was first diagnosed with Hashimoto Tyroiditis disease I was prescribed medication to take everyday. Before that diagnosis, I only pill I took daily was a vitamin D tablet in the winter. Here in New England, almost everyone is diagnosed with low D during the winter months.
Now I look at my vast array of medications and wonder “All these can’t be good for me!” I have since had a diagnosis of two types of arthritis (one can make you blind overnight!) and Type Two Diabetes (medication induced). The amber bottles of pills keep growing.
My medications a combination of drugs to battle the chronic illnesses, and drugs to combat the drugs that combat the chronic illnesses.
Side effects need their own drugs it seems, but these drugs also have side effects.
So, if you are like me you have more than once thought “I wonder if these medications are making me feel ill? Maybe it’s not the disease, maybe it’s the medications!” Less is more is my thought, and my insides make horrible noises most of the day in rebellion against the medical onslaught. This just doesn’t seem right, or even good for me.
I decided that the one doctor I trust the most and I needed to have a little talk. So, I took a list of my medications, and asked her “Why am I taking each of these? Are there any I can cut out, or work toward cutting out?”
It was a very good conversation.
First off, I wasn’t taking many of my medications in the optimal way. My thyroid medication is a bitch, I need to take it on an empty stomach. Problem is the other medications need to be taken with food. My solution was waking at 2am and just taking them. The problem is, they work best if taken on an empty stomach with a glass of water. Not a sip of water in the middle of the night.
We talked and came up with a solution. I now take the pills first thing in the morning with a water bottle I keep by the bed. Then I wait 20 minutes and take my arthritis medications. I’ve noticed a difference in how I feel throughout the day.
My doctor also went over timing for my other medications, what I should drink and eat (I wasn’t nearly drinking enough for many of them). She reminded me, I have a more than one serious illness. Several, as most people with an immune disease, have more than one serious illness.
Some of my medications are common for people my age. The statin is needed as my family has unusually high cholesterol. We just do. Even the vegan weird hippy cousin, she’s delightful, but she’s on a statin.
Also going over my side effects with her was very important. Side effects can be very dangerous, and she suggested a new pill to help with my stomach complaint.
Did I get to drop any of my medications? No. I’m still not happy about the number of medications. But, as she reminds me over and over “You have several very serious illnesses.” People with serious illnesses take a lot of medication. Just because it’s an “invisible illness”, meaning I look fine, doesn’t mean it isn’t truly dangerous.
I have a friend that complains her husband refuses to take his blood pressure medications. She is upset, but not enough to really make sure he takes them. She jokes “If he has a heart attack it will be his fault!”
He’s proud he doesn’t “take pills”, he says he feels great. He’s thin, he rides his bike, and he “eats right”. The blood pressure cuff of course doesn’t know any of that.
It’s hard when you don’t LOOK sick, but I imagine it’s even harder when you don’t FEEL sick, to take your medications.
But, while I am still unhappy about the number of medications I take, and I want to cut down, I’m happy I did speak to my physician about each and every one.
WHY am I taking this
WHAT does it do
WHICH side effects do I have (and how can we treat them?)
WHEN can I stop taking this (maybe never?)
WHATEVER can I do to perhaps get off this medication?
HOW do I take this medication to get the most out of it
Also, if you are having a problem with one medication (and how to figure out which one can be hard), see if there is an alternative you can try. There usually is and often you are much happier with that alternative!
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
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!
I wish I could somehow classify those that exclaim “Wow! You sure have a lot of pills you take!” or “You take a lot of medication!” or “You must be really sick, is it good for you to take so many pills?”, as rude insensitive people.
That’s because even my own daughter at one time burst out with what she was thinking when she saw my small case of medication. She simply exclaimed “That’s as many pills are Bill is taking!” (Bill being a family member in hospice care). My daughter is a kind caring person. My neighbor that also saw the array of bottles is also a nice person. He couldn’t help commenting “Wow I can’t believe how many pills you take!” It’s just simply the number of amber colored bottles all jammed together in a small case I use to hold them that can cause these outbursts.
I try to be very discreet. I keep my medicine in a long thin case that could hold spices or knitting needles and a few balls of yarn. I also have a method to the madness. More than one friend has expressed concern about how I keep them all organized. Suggestions of pill holders I accept with a smile. There is no pill holder that can keep track of these medications.
My system is take the bottle out after taking a daily pill. Twice daily pill bottles are moved from one side to the other. Pills for “as needed” use stay in the middle. I keep the pills in the bottles, as it helps me track which pills I’m running out of. CVS Pharmacy and I are good friends. I’ll visit at least once a week and often twice. Keeping the pills in the bottles with the names (many names are very alike), helps me order refills. I have to order in time as things like “Seizures” and “Heart palpitations” and “shock” are consequences of missing even one dose. I once had a $200 courier delivery of a needed medication, because I had miscounted.
People see my medication because I have to take medication at all times of the day. If you are with me for long enough, you’ll see me open the case and move a few pill bottles around. I’ll also often have to say “Look, sorry but can we drive thru and get some fries or a snack? I just need a little food or this medication will come back up.” I also carry Cliff bars and Atkins bars for the stomach upset that invariably follows ingesting several of my daily medications.
When I was first diagnosed with Hashimoto Thyroid I was pretty upset about thyroid medication. The fun part of Hashimoto is that it slowly destroys your thyroid. Your medication is always in need of rechecking and tweaking. It’s also hard to time thyroid medication. I found I have to take it in the middle of the night to have a fully empty stomach. My arthritis medications require a full stomach. You have to not only take your pills, you have to take them correctly.
When I worked my way up to about 8 medications, I began to rebel. My husband even talked to my personal physician about how many pills I was taking. When she recommended one more, he called her up to complain. The thing is we are lead to believe that not taking medication is good. However, if you don’t have to take medication that means you have good health. If you are prescribed medication and you don’t take it, you then can become very ill.
Doctors talk about how one of their toughest jobs is getting people to take their medication. People have high blood pressure, but they feel better, so they skip taking the pills. If they go on a trip and forget the pills, they don’t worry about it. One of my neighbors used to skip taking his blood pressure medications when he went on trips. He had a hart attack, not knowing missing 2 weeks of his medication was a truly serious thing. Now he always takes his medication. Consistently taking your medication is an important way to stay healthy.
It’s hard to convince people that I’m not going to die tomorrow when they see all my medication bottles. Yes I will probably die before you do! I have a 2 serious types of arthritis, and a thyroid issue. Most people with an immune disease usually have more than just one type of immune/inflammation disease. I was pretty much assured once I was diagnosed with Hashimoto that there was something else going on. The pills are a compromise between quality of life and longevity. The pills do show I am indeed very ill with more than one serious illness. It’s just SEEING all those pill bottles that brings home the reality to people. Yes I look fine. I look fairly normal. Sometimes I use a wheelchair, but most times I get by with a hiking stick (I like it better than a cane). The pill bottles bring it home to people that I am truly very ill, no matter how well I look on the outside.
I also might live longer without all this medication. My liver has in no uncertain terms clearly shown it dislikes all these medications. However, I would certainly not live better.
Now the downside of medication, besides scaring your friends and family.
The medication effects your mood. You will never be that healthy person you have memories of ever again. That really sucks. That sucks big time. Some days I cry for that person. She’s gone. Accepting your disabilities means mourning that healthy person who is now gone. I know I miss her a lot. This is a good thing to do, just like mourning for any friend that is not coming back. Friends and family don’t always realize that person is gone. Not coming back. “So when do you think you’ll feel up to kayaking trips again?” Never, the person that kayaked around the lake doesn’t live here anymore.
Also, often when I wake up in the morning I pause a moment as I know it’s as close to me without meds as it’s possible to get. Most of my medications are long term. Part of them stays in me at all times. Still at night many of the medications wear off. I awake because of pain. There is no longer waking up not in pain. I’m not taking achy joints or being a little stiff. I’m talking severe pain that wakes me up. I hurt so much that I can no longer sleep.
That’s alright though as I know I can take my morning anti inflammatory pill. It has to be near the bed or someone has to bring it to me. I often can’t walk well before I’ve had it. I risk falling or my knee just giving out. I have to take the medication and wait for about 30 minutes for it to start working. Then it is safe for me to move.
What is surprising is that sometimes it’s tough to take those morning medications. I want to spend a little time with the real me. “This is me without medication” I think. I check in with myself. It’s usually going pretty badly. Mentally though it’s nice to not be influenced by medication. Depression is a side effect of several of the medications I am on, including the new one I’m helping to test. Some of the medications make me drowsy, some make me cranky, some make me less sharp. Despite the pain, it’s good to check in on the old smart funny person that is sometimes hard to find.
I am happy to say the longer I am managing these illnesses the more I am also managing my personality on medications. I’m more able to step back and say “Well that’s not me, that’s a medication” and actually over ride the pill. The old me is more and more able to toss aside the psychological effects, but it’s a lot of work. I’m still learning.
I also check in with myself in the morning to remind myself “Without medication, this is how people lived”. The thyroid alone would be a horror without synthetic replacement. I’ve seen photographs of people before treatment for a disease like Hashimoto and it’s not pretty.
Arthritis also demands medication. I would be blind from the one type I suffer from, and the other would require me to be in bed most of the time. I remember as a young child visiting my great grandmother. She resided full time in the bedroom at my grandmother’s house. She had been in that bedroom for over 25 years. Her hands were gnarled and misshapen. She was blind and my grandmother spent hours tending her to try to alleviate her pain. While I also spend many hours in pain, and will probably end up spending more time in a wheelchair than I do now, I also have treatments that will slow the progress of the diseases.
There isn’t a cure for most inflammatory diseases. There is management. There are an ever increasing number of medications for patients to try. None promise a cure. It’s always “Some patients feel up to 30% better on his medication.” It’s a very tough battle, but I’ll take 30%. My morning pre medication check in reminds me it could be a lot worse.
Mornings are probably the worst time for most with a chronic illness. A lot of people with a chronic disease awaken and for a moment or two forget that things have changed. Then comes the realization “Oh right, I hurt because of that disease that’s never going away.” It helps if I don’t dwell on it too long and JUST TAKE THE PILLS! I know the visits with myself aren’t really emotionally healthy if they go on too long. The sooner I accept each morning that I have to TAKE THE DAMN PILLS, the sooner I can get through a day of managing the illnesses.
My regular doctor reminds me that MY JOB is managing these illnesses. I complained to her once that I had “no job” and she said “No YOUR JOB is to take those pills correctly and manage your diseases.” Her word really helped change how I felt about the illnesses. It is work. It is important work. Many people consider yoga or running or meditation important adjuncts to their life, I have to consider managing my illnesses are far more than a adjunct. This is MY JOB.
When we wake up in the morning we don’t always want to go to work. We often have suffered through a job we don’t like. I don’t like my job. But it’s what I have to do. Next month I start a new type of physical therapy that will hopefully allow me to regain some strength without damaging my joints. I am not looking forward to what I consider overtime! I hope though it will help me do my job of illness management better though.
To my friends with a chronic illness, remember, your illness is YOUR JOB. Even those of you with jobs that give you a paycheck, you have a second job of managing your illness. Don’t let anyone ever say that you “do nothing but take pills.” We work far harder than most people. The psychological challenges and the physical challenges we face every in my opinion means we all deserve stellar job reviews for just getting through the day.
And the next time someone says “Wow you have a lot of pills!” just consider them the tools of your trade. A plumber has a lot of tools. An accountant has a briefcase and laptop. A football player has pads and a helmet. You have medication and determination.
On Thursday, August 20th, I was diagnosed with focal epilepsy that has the potential to be generalized epilepsy. What that means is that only specific areas of my brain are having electrical malfunctions, but my EEG shows that there is a tremendous potential for it to spread and affect my entire brain.
I don’t have the kind of seizures you see on TV where the epileptic is flailing about and convulsing. Mine are more insidious. For anywhhere from 10 second up to three minutes, I check out and flip the switch for the Vacancy sign. I am peripherally aware of what people are doing or saying, but, for that time, which feels much, much longer,I lose voluntary motor control. No matter how loudly I scream at myself in my head, I cannot force myself to move. Someone else can move me, but the limb they pick up, simply flops back down. From the outside, I look like a marionette whose strings have gone slack. My eyelids also flutter like hummingbird wings in the middle of one of these episodes. At the end, I go right back to being fully alert and normalcy resumes.
My neurologist has started me on a baby dose of a long-standing seizure med called Lamotrigine. It’s supposed to regulate the sodium channels in my brain. Since I’m so sensitive to medications, I can’t start at what would normally be the therapeutic dose. I’m already having headaches and nausea but I’m not sure if that’s what is referred to as an “aura”, or if I’m experiencing an oft reported side effect of Lamotrigine.
An aura is basically a precursor to a seizure. It is also considered the beginning stage. The type of aura a person experiences varies from individual to individual. Mine is headache and/or nausea. Of course an aura can’t be the scent of chocolate chip cookies or the sound of rain on a tin roof. No it’s got to be unpleasant. But it’s basically an early warning system that tells you that, any time in the next few seconds to hours, you’re going to have a seizure.I lose track of time very easily between the point that I notice an aura and the time I have a seizure so my aura might only last a few seconds, or it could be half an hour. I honestly don’t know. So please don’t ask me.As if losing control of my body and misplacing minutes wasn’t bad enough, Florida state law stipulates that someone diagnosed with epilepsy cannot legally drive for a minimum of six months. So now, my husband and son are scrambling to arrange their work schedules so that neither lose their jobs. Public transportation is basically nonexistent in our little town and it’s going to be at least two more weeks before our son has his license again
Of course I understand logically why the state has that law. It’s just really upsetting knowing that I’m causing problems for my family. And yes, I know I’m not doing it intentionally. Yes I know it’s not my fault. But (there’s always a “but”) if I had a normal brain, we wouldn’t have to deal with this.
I can already hear the objections to my statement because my friends and family have already said these things time and again. But that doesn’t keep me from being sad, angry and frustrated.
It will get better eventually. I have to believe that. If I don’t, I’ll start worrying about having to have brain surgery and some people get worse after that. Or I’ll start worrying that I’ll have to wait longer than 6 months to drive. I already have to put off going to school for another semester, but a year long driving restriction will put me even further behind on my personal timetable. I can already kiss my research goodbye because I’m not in school and I can’t drive to get over to the lab for experimentation. So, thank you Epilepsy, for sending me back to square one.
But that’s enough whining for now. I’m sticking to “It will get better”, because my other choice is “My life as a biology major is over.”.
Thank you friend for sharing your story. I think you express so well the frustration that is part of any serious illness. It’s not our fault, but there is a feeling of guilt. Our families have to help us, and I knowthe author well enough to know she would much rather be helping others, than being helped! The illness rules all, timetables, vacations, plans all bow down to the illness. I missed my daughter’s wedding, and part of me can never forgive my illness for that. We have plans and lives and so much to do, and medication takes time. Adjusting to it, finding out about the side effects, waiting to see if it works at all, what dose works…..this takes a very long time. It’s hard on everyone.
However, my friend is incredibly strong and has a great husband. I wish there were awards for friends and family that step up again and again, not only to help us but to let us know we are loved. I want to let my friend know, she’s truly worth having in my life! I came to the conclusion we’re all slightly broken, no one is “normal” 100%. I’ve learned so many illnesses don’t show on the outside. This is why it’s so important when you meet someone, to know you can’t see what’s really going on. Empathy is important.
I would also like to share my other friend with epilepsy smells CHILI before she has a seizure. She can never eat chili. She can’t stand it, because of the association of the smell and a seizure. When she asked her doctor “WHY CHILI?” he was “We don’t know why!” Many thanks for writing this to the author! I hope she is soon back driving (I’ve seen the drivers in Florida, trust me, epilepsy is the not the thing they most need to be worried about!), and back at school!