Update (Or why I've disappeared for a while)

When I started this blog a bit over a year ago, I wanted to provide a glimpse of what it's like living with invisible illness.  Part of that meant educating on a variety of conditions.  I also wanted to make it a resource for others who were suffering.

But there's also the part where I have to be open about my experience and how my illnesses affect me.  And so, with some trepidation...

It's been a very rough few months for me.

I've been dealing with an increase in my pain fairly steadily over the past few months. It got to the point where I was having to take my PRN (as needed) Opioid pain medication nightly in order to sleep. In late February, after talking with my doctor, I decided to try a new medication that had been suggested to me over the past couple of years but I'd been hesitant to try.

Please note: nothing I say in this blog should be taken as medical advice. Please discuss any medications and medical concerns with appropriate medical professionals.

Naltrexone is an Opioid Antagonist used to help individuals who are addicted to Opioids to stop while helping their pain.  There has been some research that Low Dose Naltrexone (LDN) can be useful to help pain in individuals with Fibromyalgia.  The reported side effects are generally pretty minimal and well tolerated.

Well, by most, anyway.

Two days into taking the LDN, my pain had spiked significantly and I was experiencing other flare type symptoms. Four days into taking the medication, my depression and anxiety had started to significantly worsen. By day 5, I was incredibly labile and increasingly suicidal. On day 7, I woke up experiencing tactile and visual hallucinations. That was the point where I notified my doctor and stopped the medication.

I wish I could say the side effects immediately reversed upon stopping the medication, but even 2 1/2 months later, I am still struggling with the increase in both my depression and anxiety.  I began having almost nightly panic attacks that would keep me from sleeping and my suicidal ideations became very severe.  (My medication has been changed to include meds to address these issues, and over the last couple of weeks, things have started to improve mood-wise.)

Aside from the mood side effects, physically my pain and fatigue levels have been beyond ridiculous.(Shortly after stopping the LDN, I caught a nasty Upper Respiratory Infection that turned into Asthmatic Bronchitis that left me very ill for a month, so that hasn't exactly helped matters any.)

Currently, I am able to work...some.  It's exhausting. On days where I don't work, I sleep or rest the majority of the day. I've been slowly trying to incorporate other activities back into my life such as gardening, playing with the dog, spending time with friends, etc, but it's been slow going and adding those activities means that I'm recovering for the next day or two. Things that most people would not even think twice about require so much energy from me.

For instance, something that has become very taxing for me to do is talking on the phone. I already tend to avoid talking on the phone because of my hearing problems, but there is so much energy that is required to follow and track conversations in addition to struggling to hear, it wears me out too easily. There are a handful of people that I can comfortably talk to on the phone because they understand that I can only handle short conversations, but generally texting is best for me these days.

The cognitive challenges have definitely become more noticeable and frustrating. I'm not tracking conversations as easily and there just seems to be a fog over everything (thought-wise) that I've been fighting through. For someone who can usually multi-task and recite regulation from memory, it's beyond frustrating. I feel so stupid these days. I can't keep track of days or appointments, even with my reminders in place, and I'm not this flaky person. I don't want to be this flaky person.

I am fighting my way back, but it is slow going. My mood is slowing improving and I'm finding enjoyment in activities again. I'm finding my laughter again. I'm still exhausted and prone to severe anxiety attacks, but the medication is helping. It's a slow recovery, though.  Unfortunately, the combination of the slow recovery and lack of energy leading to isolation has made the mood recovery even slower.

Physically, there have been some new developments, and I'll be seeing several of my specialists this month to figure out the plan.  Not all of this is related to the attempt with the LDN; it just added to the situation to make it the perfect storm.

So, today, I'm going to focus on the time that I was able to spend with family, laughing at the goofy antics of our awesome dog, the beautiful plants growing in my garden, and the fact that I was able to give some very cool gifts to two very amazing women in my life.  It was a good day.

A list of definitions in my medical chart

ADHD and Fibromyalgia (Or...Squirrel!)

Okay, so I have something to admit.

I get distracted easily, especially if I'm dealing with a lot of stress. I've joked for years that I had some weird form of Attention Deficit Hyperactivity Disorder, but as it turns out, there have been a number of studies showing that there is a link between ADHD and conditions like Fibromyalgia and Chronic Fatigue. And when you think about it, it makes a lot of sense.

Disrupted Sleep
Let's face it: when you don't sleep well at night--or sleep well consistently--it impacts the ability to concentrate and focus on tasks. And Chronic Pain Warriors are notorious for disrupted sleep. Since we have disrupted sleep, our ability to concentrate and focus on tasks can decrease, and the more the sleep is disrupted, the more challenges we have.

Increased Sensitivity to External Stimuli
Working in mental health, I've worked with kids who deal with ADHD, and I once heard a description that I think describes the experience perfectly:  Sitting in a classroom, trying to focus on the task in front of the student, but the brain keeps picking up on things like the ticking clock or the rustling of papers and it makes it difficult to focus on what the teacher is saying.

Those of us with conditions such as Fibromyalgia have an increased sensitivity to sounds, smells, and other external stimuli. So, the ticking of the clock can be extremely distracting (and potentially irritating).  In times of increased stress, our sensitivity can increase, making our ability to focus even more challenging.

Increased Fatigue
This is also linked to problems sleeping, but living in a body that is in constant pain is fatiguing. When the body--and brain--are fatigued, the ability to concentrate and focus on tasks becomes more challenging.

Co-morbid Conditions
First, "co-morbid conditions" means other conditions that tend to exist in addition to the "main disorder".  For instance, for individuals with Fibromyalgia, it's not uncommon to also develop conditions such as Reynaud's Syndrome, Hypoglycemia, or Migraine.

Using these three as examples, if you're dealing with poor circulation in your extremities, such as in the case of Reynaud's, it's going to be difficult to focus on things when your hands and feet feel as if they're freezing off.  Or in the case of a Hypoglycemic moment (low blood sugar), the ability to focus can fly out the window. And Migraine? Well, anyone who has experienced the nausea, light sensitivity, and feeling of inexplicable pain in the head can tell you how hard it is to focus when one of those things hit.

While I was writing this post, I found myself distracted a number of times by the cars driving by outside, the sound of the A/C clicking on, the show on the television, my phone, more cars driving by, by a piece of paper on the front lawn, by my dog dreaming on the floor, by the headache that's starting to form because of this cold that I've caught....

The list can go on and on. In times of higher stress (physical, mental, and/or emotional), my ADHD is worse. It can be exhausting, working to focus on tasks, particularly if I find myself getting distracted easily. My husband has learned that if he wants to talk to me about something, he has to make sure he has my full attention before starting the conversation. It's not uncommon for me to become distracted by my own thoughts while I'm having a conversation with someone. It's definitely worse when I'm having more stress or pain.

The biggest lesson that this has taught me is that I need to slow down, focus on one thing at a time, and be gentle with myself when I'm more distracted.  I've learned to laugh it off at times, despite the fact that in a world that moves 100 miles an hour, it's not the easiest thing to do. It takes time, practice, and patience.

Be gentle with yourself today. Wishing you low pain, high energy, and laughter.

Definitions of Medical Conditions Listed in My Medical Chart

Cognitive Challenges (or Where the hell did I put the phone?)

Those with Fibromyalgia are all too familiar with the term "FibroFog" or the term to describe the cognitive difficulties that accompany this diagnosis.  The Mayo Clinic describes the cognitive challenges as impairment in the ability to focus, pay attention, and concentrate on mental tasks.  The Arthritis Foundation expands on this definition adding that it can also include confusion, lapses in memory, word mix-ups, and difficulty concentrating.

My long term memory is exceptional.  I have the ability to recall regulation from California Code of Regulations almost word for word and criteria for psychological diagnoses from the DSM IV TR.  Put me in a meeting with a group of people, and I can remember the smallest details of historical changes of policy and legislation (related to mental health in California). Give me an hour with a client to complete a full Biopsychosoial assessment, and I can recall details about the client years later.  

I'm a voracious reader.  I can read lengthy novels in a day.  Reviewing hospital or client charts could be done very quickly--and I usually can remember the information I read.  

In high school, a friend got me started into competitive public speaking, and my ability to speak up in meetings and sound like I know what I'm talking about is actually quite impressive.  While I'll never say I adore public speaking, I do enjoy conducting trainings.  (I play a great extrovert when necessary.)  

But for all of these tasks, concentration, focus, and being able to utilize my vocabulary is necessary.  It's frustrating when it's difficult to focus on a task or recall information, including words.  Fortunately, when it comes to work-related items, I can usually push to focus and concentrate, and I've become a master at substituting words smoothly so that no one sees me struggle.  

In my "downtime", though?  Or when I'm with friends or family that I allow to see behind the mask? When it's work-related, I can push through, but the fatigue I experience later is great and the FibroFog can get pretty bad.  (It also increases during times when I'm experiencing high stress levels.)

I learned a long time ago that I could be frustrated with my FibroFog moments, or I could laugh at them (although, some of them weren't so funny at the time).  

Since I'm a big believer in laughing at oneself being good for oneself, I'm going to share some of my "FibroFog Funnies".

• When my husband and I first started living together, he got to experience one of my fog moments after a grocery shopping trip.  We put the groceries away, and later that evening, I heard a noise of frustration coming from him as he looked into the pantry for something. Apparently, while putting away the groceries, I put the ice cream in the pantry and the cereal in the freezer, and the ice cream had melted (and dripped) all over the place.  After that experience, we learned not to buy the ice cream containers that open on multiple sides.

• One day a few years ago, I heard the phone ringing, but it was muffled, and I couldn't find it anywhere.  I was finally able to locate it...in the freezer.  Apparently, I had set it down when I went in there to get ice and forgot about it.  Unfortunately, the person on the other end ended up getting the greeting of "Hello?  Sh** that's cold!"  (I'd like to say I've learned to keep the phones out of the freezer, but it's happened multiple times.)

• Our house cleaner found the remote in my sock drawer.  We're still not sure how that happened.

• There have been several instances of lost words where I've been trying to say something I'm usually familiar with, but end up describing the words I'm looking for (frequently using sign language of sorts).  This can get highly entertaining for the individuals around me as my arms start flying.

• I've attempted (on three occasions, now) to brush my teeth by putting deodorant on my toothbrush.  (What makes this even more impressive is that my deodorant is the stick kind.)

• I've come close to cleaning my contact lenses with body wash.

• This last one is a potentially serious one, but it highlights how serious this can be.  I've actually taken my medication twice in one evening because I forgot I'd taken it earlier. Fortunately, I only experienced feeling like complete and total crap the next day.  (Please note that medications and medication errors should be taken very seriously and to seek medical attention should be sought immediately if errors have been made.)

How do I avoid FibroFog Moments?

• Develop habits.  I have a routine in the morning of what order I complete tasks in.  For example, after my shower, I put my contact lenses in, brush my teeth, and put deodorant on.  I do it in that order, and I keep the supplies for each of those tasks in the same place at all times.  
• Be organized.  I keep my keys on the hook by the door, my purse on the shelf, and my phone on the charger by my bed.  If I deviate from returning those items to those places, it's a problem.  
• Keep it simple.  Clutter is chaos.  If it's not something that is necessary or beautiful, don't keep it around.  The more stuff you have around you, the easier it is to lose things, and the easier it is to feel overwhelmed and add stress.  (And stress is the last thing that will help FibroFog.)
• Be gentle with yourself.  FibroFog can be incredibly frustrating, but it can also be an opportunity for great laughter.  And trust me, laughter is infinitely better for overall health than getting upset. 

A Final Note:  During the writing of this blog, I asked my husband if he could remember any FibroFog moments.  He just shot me a look that read "You're asking me to remember things that you've forgotten?".  Oh.