When med changes fail...

After a major medication reduction and adjustment, I tried a new medication suggested by my doctor.

It didn't go well. I tried a second time. That didn't go well either.

Here's what you should know when taking a new medication, regardless of what the medication is:

1. What is the medication supposed to do? How does it work?

2. What are the known side effects, common & uncommon. Are any side effects fatal? What should you do if things go bad? Under what circumstances should you stop the medication? Consult a doctor? Go to the emergency room?

3. Medication's history, in general terms. How long has it been on the market? What have long term studies shown of its effectiveness?

4. How to take the medication. How many times a day? For how long? With food? Without food? With plenty of water? What should be avoided?

Seems like common sense, right? But how many people take what their doctors prescribe without knowing why? How many more people took them without reading the information from the pharmacy? I know I've done those things.

And one last thing... Don't give up. One medication failing doesn't mean they all will.

DSM criteria for agoraphobia

Information from here - http://www.mayoclinic.org/diseases-conditions/agoraphobia/basics/tests-diagnosis/con-20029996

Agoraphobia is diagnosed based on signs and symptoms, as well as an in-depth interview with your health care provider. You may also have a physical exam to rule out other conditions that could be causing your symptoms.
To be diagnosed with agoraphobia, you must meet criteria listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) published by the American Psychiatric Association. This manual is used by mental health providers to diagnose mental conditions and by insurance companies to reimburse for treatment.
Diagnostic criteria for agoraphobia include severe fear or anxiety about two or more of the following situations:

• Using public transportation, such as a bus or plane
• Being in an open space, such as a parking lot, bridge or large mall
• Being in an enclosed space, such as a movie theater, meeting room or small store
• Waiting in a line or being in a crowd
• Being out of your home alone

These situations cause anxiety because you fear you won't be able to escape or find help if you develop panic-like symptoms or other disabling or embarrassing symptoms.
In addition, diagnostic criteria for agoraphobia include:

• Fear or anxiety that almost always results from exposure to a situation
• Avoidance of the situation, needing a companion to go with you or endurance of this situation with extreme distress
• Fear or anxiety that's out of proportion to the actual danger posed by the situation
• Significant distress or problems with social situations, work or other areas in your life caused by the fear, anxiety or avoidance
• Persistent phobia and avoidance, usually lasting six months or longer

Agoraphobia

There's always this point where the technical information about something sinks in and I can finally connect the dots and see my symptoms for what they are in regard to the diagnosis I've received.  I minimize so much that often I convince myself that I'm just a whiner, overreacting, what have you.  Agoraphobia was one of those things and it has been an odd ride for me realizing that is what I have been dealing with all these years. 

It started small, which I guess these things always do.  I've never liked crowded spaces, social anxiety and claustrophobia played into that but then it started getting worse.  I couldn't go anywhere that there would be lots of people.  At first this was places like bars and stuff that I wasn't really interested in going to in the first place.  Then it was restaurants - great, we'll save money on eating out! - because I had to find a way to rationalize it.

Then I couldn't go to the store alone, and eventually at all.  Again I blamed this on social anxiety and kind of brushed it off.  Anyone from the outside could see that it was starting to impact my life negatively, but I couldn't or wouldn't see that.  From there it grew to not being able to go anywhere there were other people at all. 

I love being outdoors in the forest, always have.  I find trees comforting.  Eventually I couldn't do that either.  Anywhere that I might even run into someone else became a no no.  I quit driving, which had always been hard for me anyway, and still didn't notice there was a problem.

The thing about agoraphobia is that your safe zone gets smaller and smaller.  Some people get stuck in one room of their house, and luckily it didn't go that far for me, but I couldn't leave the house.  Couldn't go to the mailbox without panicking, couldn't even stand in front of the door or a window that someone could see in.  The thought of setting foot over the threshold of the door began causing me panic attacks.  So much so that I was unable to open it.

At this point I noticed that I was unhappy about the situation, but still didn't realize what I was dealing with.  Just decided that I was being a wimp and ridiculous, that there wasn't anything wrong with me other than being a stubborn brat.  I felt stuck in the house.  I wanted to leave but I couldn't anymore.  It was like there was a wall at the doorway.  I had so much fear that I actually felt resistance where there was none.  

Despite this I did manage to force myself out of the house from time to time.  I became very dependent on my husband for everything.  I cancelled doctor appointments because even with his help I still couldn't leave a lot of the time. 

It was around 2012 when the worst of it hit, but noticeable symptoms had started around 2006 or 2008 I just ignored them.  I was almost completely housebound for 2-3 years.  I left maybe once or twice a year because I had to.  Went on vacation camping and struggled to leave the tent.

Other people noticed and started saying stuff, but I brushed it off by telling them I was just a home-body.  Would rather stay in than go out and most people just accepted that since even when I was younger I wasn't one to "go out and play".   I lost some friends because they didn't understand and thought I was blowing them off.  I was not willing to really explain what was happening to me, so they didn't know.  They just knew that I wouldn't go anywhere with them or anything.  

The first few times agoraphobia was brought up I swore that wasn't it.  That was an actual mental health issue after all, I was just being a baby and needed to suck it up.

Then I read the dsm requirements for the diagnosis and realized that I was dealing with nearly all of them. There was a big struggle for me to get help with it because, you know, you have to leave the house to see a therapist or psychiatrist.  Any time I tried to make an appointment I panicked and either cancelled or didn't call in the first place to set it up.

It's been hard, but over the last couple of years I've managed to make big improvements.  Some things will always be hard, but I have ways of coping with it now that I didn't have available before.  Medication has been a big help for me, not everyone needs it to beat this but I certainly did.  I started going to the mailbox - running back in the house in terror, but I did it.  Well, except the first time, I made it halfway down the stairs and ran right back up them.  There were a lot of false starts like this, a lot of stop and starts, sliding backwards instead of forward, but for the most part I've gotten my life back.

I can drive, although I don't like to and don't think I ever will.  I can go to the store by myself, I can walk outside my house, at least in my own neighborhood.  I can look out the window.  I can open the door and get air for the house.  I've gone to concerts and restaurants, and go visit friends at their houses now.  Four years ago none of that would have been possible.  It's not easy, never will be easy, but now it's just anxiety instead of abject terror.

Agoraphobia is a hell of a monster to slay, and it sneaks up on you.  I'm not into giving advice generally, but I will say if you're dealing with this the earlier you can get yourself help the better.  It's a painful and scary process because most of what has to be done is exposure.  I wasn't sure if it was worth it, but looking at it from this end I can say it definitely was.

I have the dumb

I'm a relatively intelligent person, well book smart anyway.  There are some days when I have no access to that intelligence.  It's incredibly frustrating, and crushing.  Sometimes I tell people I can't brain, or I have the dumb.  It's easier to make a joke than to go into the reality of it.  

There's a combination of fibro fog, meds, depression fog, and trouble focusing among other things, that causes it.  It's one more way I'm unable to function, one more impairment in a long list of them.  One more failing in me, one more thing to compensate for.  

How do you compensate for not being able to think straight?  People say to get more sleep, but they don't understand that it doesn't matter how much sleep I get when my brain decides there are no spoons for thinking.  All I can do is try not to do anything important that requires clear thought - like bill paying.  It's amazing how many ways that can go wrong.

Far as I know nothing can be done about this except for what I already do to accommodate it.  It makes me feel useless.  Screw you brain, seriously.

Trying to leave the house with medical issues

Got braces?

It takes while to get ready to leave the house.  People get impatient waiting for me to "strap up".  I never know which of them I'll need, it's often all of them.  Because I need them sometimes and not others some people assume that I don't really need them at all.  Why on earth would someone walk around with all this stuff on if they didn't need to?  They're not always comfortable, some of the wrist braces bruise my knuckles if I'm not careful. When the options are bruised knuckles or not being able to use your hand it isn't much of a choice, though.  

It's frustrating for me as well.  I'd like to be able to just up and go.  Sometimes I convince myself that I'm ok and don't need them and then I'm out and a knee goes out or something and suddenly anything but sitting becomes extremely difficult.  Even sitting too much causes pain issues, so there really is no winning in this situation. I keep pushing myself because as much as it hurts to push to do things I know that if I stop I'll lose the ability to do them at all.  I know I'm lucky to an extent, that I can still go do physical things that I enjoy even if it takes extra support. Some day I won't be able to anymore, and I dread that day.  I do everything I can to keep from getting to that point.

Med Changes pt 3

Effexor should be banned. No person should have to go through that type of torture.

That said...

The second type of torture has begun. Now I have to try new meds, and hope they work. I call this part Russian Roulette. Technically any of these meds could kill me. Take one my body doesn't agree with and literally dead. So why would I even try? Because without them I would probably be dead too. But that is a different post.

The new meds are ok so far. I can only pray they will stay being okay as I continue on them.

Changing medications pt 2

The second stage of weaning was more difficult. There were several days I was incapacitated part of the day due to withdrawal symptoms.

Eating was difficult because my stomach was queasy and nothing tasted right. My family does donuts every Sunday, but I couldn't eat them. They were too sweet and made my stomach worse.

Sleeping was difficult to impossible for many days after coming off of one of the meds completely. That was stressful, to say the least.

But, overall, I was in good spirits and was coping reasonably well.

I was however getting more than a little nervous about the last stage of this weaning...

What I learned when I took a couple days off...

I had a really bad day. As everything started to go wrong I thought "I should have expected this. Things have been going too well."

Then I took a couple days off... from life. It felt good.

I have been pushing myself to my limit every day for a long time. As a person living conditionally I simply can't do all the things the average person can do. Even on good days my functioning level is far below most peoples'. So I push myself. I learned not to push myself past my limits, but I push right up to that limit.

It's exhausting. It's also ridiculous.

Healthy people, "normal" people, don't push themselves to their limit every single day. And neither should I! Yes I will still push myself more than I should. But I am allowed to have days off. I will no longer push to the end of my limits every single day.

I feel better already.

Withdrawal as emojis

Day 1
☺️😊😕☺️😣😲😳🤒🤔😆😅😂😣😢😴

Day 2
Repeat

Changing medications pt 1

I went to my appointment expecting the woman who prescribes my psych meds to tell me my plan to go off my meds was a bad idea. Instead, she was all for it and started jotting down numbers so she could order the right number of pills.

I was a little confused. Any time I had suggested a major overhaul like this, my doctors, nurses, physicians assistants, etc, had always advised against it. And, being the ones with the prescribing power, they won that debate.

This time I had her full cooperation. In fact she stated she was proud of my decision (which, in retrospect, was a bit condescending).

The point if this massive change? I want to know how I am off of medication now that I am an adult.

Now, one third of the way through the weaning off process, I haven't noticed a significant difference yet. So far, so good.

Tell us about your experiences with medication or medication changes in the comments below.

Preparing for FIC days

Bad days happen.

You know they are going to happen. You know it is inevitable. You dread those days.

You wake up to all your symptoms in overdrive. Maybe, depending on your particular variation of Living Conditionally, you hurt all over. Maybe you can't think straight. Maybe you are going to be incapacitated all day... What do you do?

While everyone's situation is different, there are some things we can all do to make these days have as little negative impact as possible.

The hardest thing I had to deal with was getting my kid taken care of. The first part was the hardest, on me personally, on my ego. I had to explain to my kid, in terms he could understand, that I would sometimes have days when I couldn't be the best mom I wanted to be.

The hard part past, I moved on to making it work.

Plan ahead. 

Here are a few tips for parents of school aged kids.

Do as many things the day or night before as possible. My son and I would pack his backpack the night before. Then we put it near the door with his shoes and coat.

Make a Get Ready list and tape it on the wall. List every little thing in the order it should be done. If you are planning for a pre-reader, use charts that have pictures to go with them.

Plan their clothing. I would put entire outfits on one hanger. Matching shirts and pants, under clothes, socks, everything. There are a variety of ways you can do this, but the easiest is to hang the pants and shirt in the usual way and hang a grocery bag with everything else from the hanger too. Before he learned to tie his shoes, I bought shoes with Velcro instead of laces.

Plan easy meals and teach your kids how to manage them on their own.
Breakfast: My son loves cereal. I made sure his favorite (but still healthy) cereal was where he could reach it. I bought half gallon jugs of milk so it was small enough and light enough he could pour it himself, if necessary.
Lunch: Sandwiches are easy. Cans of soup with pull tabs are easy too. Add a bag of baby carrots and individual cups of applesauce and you have a super simple meal. If your child using a butter knife to make a PB&J makes you nervous, keep lunch meat and sliced cheese handy. No knife required.
Dinner: For my worst days, when I couldn't get up at all, I had microwavable frozen dinners in the freezer. My son considered them a treat because he loved chicken nuggets and fries. They came with dessert too. For less severe days, I had easy meals I could make. Shake and bake pork chops, macaroni and cheese, and green beans are still a favorite meal.

Do what works

Do what works for you and your family. You don't have to be SuperMom or SuperDad to be a good parent. Love and communication go a long way.

Share tips and tricks you use to deal with FIC days in the comments below.

*Whatever works...

Pokémon Go is awesome. I know, you're thinking "what is an adult with major medical issues doing playing a child's game?"

First, the original Pokémon games came out when I WAS a kid. I loved them then, I love them now.

Second, my kid loves them too. So this us something we do together.

And third, you have to leave the house to play it. Because of this game, I have been out of my house more, walked more, and socialized more.

That's where "whatever works" comes in. If it takes Pokémon Go to get you going, then do it.

Leave a comment about your Pokémon Go fun or whatever works for you.

Living Conditionally and Parenting

I don't know when it started. It was probably something simple like I was having a bad pain day and something really needed to be picked up off the floor. So, since my son was down there anyway, I asked him to hand it to me instead of bending over. Or, because I am short as well as LC (living conditionally), I had him get up on a stool or counter to reach something up high rather than trying to do so myself.

It didn't even occur to me that my son understood my limitations until the first time my significant other went on a trip. I was doing my best, but I was seriously struggling. I had managed to get out of bed and warm up a cup of coffee, but that was about it. Later when my son, who was always very independent and wanting to do things for himself, was getting himself a sandwich. He was about 10 years old at the time. He stopped, came into the living room and asked me if I wanted him to make me a sandwich too, since my significant other was gone. He asked gently, softly, which I took to mean he understood my need for quiet when I was having a bad day.

I was speechless, which doesn't happen often. I finally said yes, if he didn't mind at all, I would love a sandwich. He smiled, and went back to the kitchen. A few moments later he brought me a peanut butter and jam sandwich on a paper towel. We ate together on the couch. I hugged and thanked him for helping me.

When he went back to playing, I cried a little. I was proud of my son, but I was ashamed of myself. After all, I was the parent. I was supposed to be the one taking care of him. I thought about the whole thing long and hard. Here are a few things I realized...

-I have a great kid. He is kind, understanding, and generous.
-Being helpful made him feel good about himself.
-On a bad day, making a sandwich might have taken a spoon or 2 when my supply was already short.
-Accepting his help gave me the energy to be able to cook dinner later.
-Being ashamed of my illness wasn't doing me any good. It is my life, my reality.

These days I ask for help easily and more often. He does little things to help me and we count them as part of his chores.

Spoons

People with chronic illnesses are constantly trying to explain to others what it's like to live conditionally. The explanation I use most often is The Spoon Theory by Christine Miserandino.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

It can be applied to any chronic illness or disability.

Have you used the Spoon Theory to explain your chronic illness or disability? Share your story in the comments below.

Limited

Have always been an overachiever, can't really help it - do everything full kilter.  Among other things I'm a person of extremes, and have a one track mind, so if I ran into problems I pushed past them through sheer force of will if I had to.  If it took a couple hundred tries I was up for putting in the work.  (Even though I was often called a quitter, but that's a different story.)  Of course you can't do that with everything, and when I couldn't I assumed it was some failing in me.  I hadn't tried hard enough, could have just payed more attention, or practiced more, or push through the discomfort, or grown three inches.  I must be lazy, or just a big baby, or I would have finished/learned whatever, would've found a way to make it work.

A limit, any limit, was a failing in myself. It had nothing to do with how possible the thing I was trying to do was.  After all, you can do the impossible if you just try hard enough, right? In some cases that's true, and my tenacity and stubbornness has served me well in many parts of life, in other cases it's slowed down my ability to accept not only "normal" human limits but the additional ones that come with chronic conditions.  

I have to stay pretty active to keep moving at all.  It's like I rust or something.  Joint and muscle problems crop up, and I lose range of motion and ability to stand steadily pretty quickly.  It takes time to get back to a place where I'm relatively comfortable and my body is working mostly.  Exercising is sometimes painful and always uncomfortable (probably the same for lots of people), but I've learned it's easier to keep up with if I find something that I enjoy doing and pay attention to my specific body mechanics.  

Picking something I really like gives me incentive to keep up with it, for obvious reasons.  Listening to my body keeps me from hurting myself, generally.  It's been hard to come to terms with the fact that deterioration and damage to my body means I can't do a lot of things I should be able to at my age.   Had to learn to recognize the difference between "I'm bad at it and can learn with practice" and "I'm bad at it because of an injury/medical issue and I need to stop doing it".  For example, somersaults aren't particularly dangerous, and while not easy for a 36 year old they are completely doable.  For me the pressure on my crooked and cracked vertebrae could do serious permanent damage, so I have to stand by and watch everyone else do things that I can't do.  

I'm also prone to repetitive stress injuries, which means that doing something regularly can mean a new injury.  I used to write a lot, can't by hand because of carpal tunnel issues.  Typing is easier, but even that is hard on the wrists.  Have some pretty serious foot issues and knee problems etc, so although I love to walk I can only do so for a bit.  With good shoes and regular exercise, I can hike still.  Uneven ground can be dangerous for the ankles, knees, and hips.  Standing still wreaks havoc on my back and hips.  It's like a no win situation all the way around.

As I get older there are more and more things I can't do, and I know that is going to continue to happen.  I know it happens to everyone over time, it's just happening to me at an accelerated rate compared with my peers.  Each time I have to walk away from something that I've put time and effort into, something that I love, it's a painful blow.  Some are worse than others.  I've been doing an activity that can be hard on the shoulders and damaged my rotater cuff.  Not only did this make the thing exceptionally difficult, the doctor told me that if I kept at it I would probably lose the use of my shoulder.  

It's one more thing in a list of things that have been taken from me, and it broke me a little bit.  I'm running out of activities that I can do, and find it hard to stay hopeful and to keep doing as much exercise as I can.  I'm limited, and watching the number of things I can do dwindle.  I've been angry and hurt and frustrated and the people around me just don't quite understand.  It's hard to explain the despair in realizing that the more you like something or do something the quicker you're going to have to give it up.  Makes it hard to not throw in the towel.

Getting sick when sick...

I woke up with flu-like symptoms. Instant Panic. It was extra bad timing because my significant other and main care giver was away for the weekend.

I'm lucky. I don't get sick with the flu or other serious illnesses often. In fact, the last time was probably years ago. So I was shocked to realize I was very, very sick.

I am so incredibly thankful for my kid. He did the few things I absolutely needed his help with and several more, willingly.

OK, there was a little bribing involved. He wanted pretzels and a beverage in return for going to the store. I was more then willing to pay the bribe.

The real point of this post:

My normal day to day functioning is pretty low. At this point, I consider getting out of bed every day and leaving the house once a week a really good week. Something as simple as my menstrual cycle or seasonal allergies can stop me in my tracks.

This time, I was so ill I was in tears. I spent almost all of my day in the bathtub praying for relief. I held as still as possible, but every thing still hurt. (Hot water can be used to confuse the pain or sick signals being sent to your brain).

I've adjusted to the every day pain. It's amazing what our bodies can get used to. My doctor asked me how I was feeling. I said I hurt. She asked me to rate it on a scale of 1-10. I asked if she meant the average person's scale or my personal scale. On my own scale I was maybe a 3. But on the average person's scale it was probably 5 or 6. 

People who don't live with chronic illnesses don't understand this concept. I no longer remember what it's like to be without pain. Under perfect circumstances I can come very  close to no pain, but those circumstances are extremely hard to manage.