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

Everyday tasks that become challenges for Chronic Pain Warriors/those with invisible illness

In the field of mental health, we often talk about a client's ability to perform Activities of Daily Living (or ADLs, because we mental health types tend to talk in alphabet soup). These are activities related to hygiene, ability to cook and care for oneself, ability to complete chores, ability to function appropriately in social settings, ability to budget and manage finances, and just generally things that most adults are able to do for themselves.

There are times when adults aren't able to complete ADLs for themselves. Illness tends to be a big factor in this, whether it's physical or mental illness. Those who know my professional persona typically see someone that's fairly high energy, on-the-go, jumping from one task to the next, being the calm in the storm, great in a crisis type of person.  I'm the one who can strike up a conversation at the hair salon or in the grocery store with complete strangers.  It's not fake; I genuinely care about people and I genuinely enjoy what I do.  I enjoy what I do for a living, and I want to be the kind of person other people enjoy working with.

But I have to admit, it's an act. I don't fake being sick; I fake being well.  And yes, there are times when I can be considered someone who is unable to complete their ADLs.  There are many everyday tasks that can be difficult for individuals with chronic pain/invisible illness to complete.  Here are a few things that can be challenges:

Showering
Showering can be an interesting experience.  Many people with autoimmune disease/fibromyalgia/chronic pain experience a condition called Dysautonomia, which can cause exhaustion, tachycardia (fast heart beat), and the feeling that one might faint (or that one might actually faint).  While the heat from the shower can help ease some of the pain and relax muscles, the heat from showering can also cause other problems.

For someone like me, without a working internal thermostat, the heat can cause me to overheat quite easily.  Conversely, a cooler shower can also cause problems because the cooler water can trigger my Reynaud's phenomenon.

It's not uncommon for me to sit in the tub of the shower to bathe while the shower is running, or to take baths and use the handheld shower-head to wash my hair.  But there are days when bathing in the morning just does me in for the day.

Cooking
I love to cook, and I'm a pretty good one.  There's nothing quite as exciting as getting new recipes or walking through the produce section of a Whole Foods or a farmer's market during the summer months and seeing all of the great produce.  I can come up with fantastic recipes off the top of my head, and I love cooking with fresh herbs from my garden.

But I had to learn awhile ago that I had to make a choice.  After working all day, I don't have the energy to cook meals.  Some days, I barely have energy to heat something up in the microwave. Sometimes I just hurt too much to stand any longer.

This is where it becomes a trade-off. I'm fortunate in that my husband is willing to do much of the cooking and I try to help with finding easy and health recipes that can make leftovers. I still get to cook at times, but it's usually relegated to weekends and I usually throw something together for the crock pot.  I have to be honest, though.  If it weren't for him, ensuring that I ate regularly would be a problem.

Cleaning
Flat out, I pay someone to come clean regularly. I learned a long time ago that if my priority was being able to work that meant two things when it came to cleaning: 1) I wasn't going to be able to work full time and clean my house regularly and 2) paying someone else to clean is a necessary expense for my health.

Now, housecleaning happens every other week, and so we still have to do things like dishes and laundry and general day-to-day cleaning, and that can still be a challenge.  I've had to be okay with shortcuts on some things.  Again, my husband has had to take on more than his fair share of chores. And I've had to learn to ask for help...which I'm still working on.

Paying Bills
This is where brain fog can really cause problems.  It's so easy to simply forget to pay a bill unless there's some sort of system in place.  For me, I actually put which bills to pay when on my calendar on my computer and my banking is all online.  (The issues with my hands have become worse over the last few months and typing is infinitely easier for me than writing checks.)  But I admit, there are times when due dates slip by.

Part of self-care means taking care of these activities. There are some aids to help with showering and cleaning, but it can also mean sometimes those of us dealing with Chronic Pain/Invisible Illness need to reach out and ask for assistance. It's hard to admit that one has trouble with tasks that a "normal person" takes for granted, particularly when we're talking about a disability that's invisible.

To friends and supporters of someone dealing with Chronic Pain/Invisible Illness, be there. Be willing to listen and support. Don't judge. Don't make jokes about these sorts of things. Be honored if they ask you for help and support, because that means they trust you.

To the Chronic Pain Warriors/Individuals with Invisible Illness, let your supporters help you. Be gentle with yourself. And do what you need to do to take care of yourself, even if it means having to put other things on that "to do" list aside.


Definitions of medical conditions listed in my medical chart

Fatigue and Autoimmune Disease (Or When did I have these lead bricks attached to my extremities?)

I've been meaning to write the post on fatigue for awhile, but I've been way too tired to compose my thoughts.

(And I wish I were joking when I say that.)

The fatigue of conditions like Fibromyalgia, Lupus, R/A, Chronic Fatigue Syndrome (now known as "Systemic Exertion Intolerance Disease"), and other Autoimmune Conditions (or conditions that mimic autoimmunity) isn't just a feeling of being tired.  It's not something that can be resolved with a nap or a good night's sleep.

The fatigue--much like the pain--is always there.  There are days when it may be "fatigue lite" and the fatigue isn't so bad, but there are also days when it can be extremely debilitating.  Each person experiences their fatigue differently, and just like the pain, it can be unpredictable.

I recently read something that stated it takes a person with Fibromyalgia 5 times more energy to complete a simple task than someone who does not have Fibromyalgia.  I'm not sure if that's true--or if it's simply a matter that it requires so much more of the little energy we have combined with the lack of physical ability and/or cognitive ability due to the fatigue--but it highlights a point that the fatigue of these conditions is one of the biggest challenges to living with them.

The fatigue impacts everything.  Simple, everyday activities are made just that much harder by fatigue.  And if it's a really bad fatigue day, those activities may be impossible for the person to perform.  For me, I can handle the pain relatively easy, but the fatigue--particularly if it's a severe fatigue day--is what will completely do me in.

The fact is that fatigue is a major part of conditions like these.  Chronic pain fatigues the body.  The assault that our bodies go through from the autoimmune conditions fatigues us. To those who don't experience life with chronic pain/invisible illness, it can be difficult to fathom how the fatigue can feel.

Fatigue isn't fun, but there are a few things that I've learned over the years that can help with it:

• Regular light exercise.  Look for an upcoming post on this topic, but in short, activities that get your blood pumping like walking or aqua aerobics can be great.  
• Practice good sleep hygiene.  This will also be an upcoming blog topic, but you want to try to keep your sleep schedule as regular as possible. A few tips now? Avoid television and electronic devices before going to bed, avoid exercise right before bed, and keep the same schedule for sleeping (i.e.- go to bed at ten every night, wake up at 6 every morning).
• Spend time outside.  Time spent in sunshine, fresh air, and nature has been shown to improve mood, decrease anxiety, and gives you Vitamin D.
• Avoid caffeine and sugar. Yes, it can be a quick boost in the moment, and even I've been guilty of using these trying to get through the day, but while they provide a quick boost, the crash tends to be harder and meaner.
• Get rest when you need to.  One of the biggest challenges with any of these conditions is difficulty falling asleep and staying asleep, and so "rest" doesn't necessarily mean "sleep".  It can mean just sitting with your legs up for a half hour or doing something mindless, like watching a funny movie.
• Manage activities.  "No" is a very important (and underused) word.  No one can do it all, and in order to focus on your health, you'll need to prioritize activites and you'll likely have to turn down activities.  And that's okay.
• Manage stress.  This corresponds to "manage activities", but developing coping skills to manage other stressors is also extremely helpful.  
• Get creative.  Television can be a great way to escape for a little while, but it can also be an easy way to suddenly realize you haven't moved in 8 hours. Doing something that may not be active, but that can engage the mind a little, can be a good thing.  For instance, I enjoy knitting. If my hands are really bad that day, but if I can hold a pencil, I'll color mandalas.  
• Meditation.  Meditation can be extremely relaxing and healing.  This doesn't mean you have to find a cushion to sit on and chant "Om" for hours on end. (Although, if that's your preferred style of meditation, go for it.)  Guided imagery can be a great tool, and there are several meditation aps on the market today (I love Simply Being.).  Another great tool is restorative yoga or Yoga Nidra.  The more you practice meditative techniques, the better you'll get at it.
• And most of all, Be Gentle With Yourself.  Beating yourself up won't help you feel better and it certainly won't help the fatigue.  

Definitions of Conditions Listed in my Medical Chart