Tumbling through the Fog

There has been an amazing amount of activities going in in my brain lately.  Few things fascinate me as much as the human brain does. It regulates the body and all the functions. It makes sure to self protect from danger. It creates entire worlds in an imagination. It runs 24 hours a day, everyday for our entire lives. The brain is truly an incredible thing. But, as much as we don’t want to believe as a society, it can be sick.

Its easy to spot the sick brain when it has cancer, the skull is cracked, or if there is a hemorrhage. These are readily identified and show the causes as such. Treatments are fairly known and while it is terrible when these things happen, it is clear what is the problem When it comes to mental health, it becomes much more murky.

The few tests done are for chemical imbalances. It shows the nutrients and lacking minerals in the body, blood sugars, and toxin screenings. The next one goes through the history of your mental health, changes shown, what is being down to help. We are listed as a Risk/Non-risk to ourselves and we are shuffled on to the next set of testing.

This endless cycle of not knowing, being criticized by friends, family, and even the doctors themselves. It becomes almost unbearable. Going day in and day out fighting your own brain and having to argue with yourself that you do matter, and that there is something wrong with you. You have to convince yourself that, Yes you are sick and you need help. This constant wear strains the already weary brain.

Now we add in a physical illness. Lyme disease, fibromyalgia, or Crohn’s decease. Illnesses that are not an immediate threat but cause all kinds of havoc in the daily lives of sufferers. Lack of sleep, fighting pain and nerve medications, and the conditions themselves slowing and sometimes stopping us in our tracks. I have used over half my vacation time for sick time this last year. It wears through you at a steady rate and shows the problems that are evident in your body.

All these things make up for a depressive episode. Times when reason and rational go out the window and show that even when you are intelligent and even aware of all the answers and conditions, you still stumble and cannot make your brain see that it is wrong. You spiral down the drain and you argue with yourself 10 times over more than you usually do in an attempt to find peace. It is this peace that you seek. A peace that is the calm center in this hurricane.

It takes every bit of effort and help to find it.

And, like a hurricane, when you find this peace in the eye of the storm, you brace for the back half of the storm. You see the storm clouds, you feel the winds and you cringe as you know how much it is going to hurt. This is were I am at today. I have been through the wringer and am just trying to catch my breath. I feel the second half about to hit.

I am extremely grateful for those kind people who have helped me through this time. My life has been in pure turmoil for the last year. I have struggled and fought for each and every inch I have gained in my life. I have been finding my way through this fog and have done well from the outside. Inside, I am not sure if I have done enough to recover/

I will continue to fight and write and tell my store of how I feel and what it is like for you to read. I will continue to fight my brain and try to find the peace in my head to be able to relax. I hope, pray, and beg that I will be taken seriously. I will continue to buy and give away stuffed animals and plushies to help others and myself.

#hugaplushie my friends

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Sleep for the Sleepless

Sleeping shouldn’t be hard. In this age of bed technology and scented oils, sleep should come easier and be more restful than ever. Seeing commercials from C-PAP machines to sleep aids to pure cotton, hand spun bed sheets, we are constantly being shown how much we should be getting rest and sleeping. With someone with a chronic illness, it is completely different.

As someone who struggles with getting rest at night, it can be difficult to describe how hard it is to sleep well. I like to compare it to someone who went to the beach for a day, stayed in the sun, played in the water and sand, stayed up late drinking a bit but than being woken up at 7 am with only a few hours of sleep, none of it restful and having to work a normal day tired, worn thin, and in a fog of almost being hungover. Now add in the aches and pains of swimming and playing too hard, and the medicine you are taking isn’t working but making you feel sick to your stomach. You go back and forth with hot flashes and cold shivers like you have menopause and a sunburn all in one. Then at the end of the day, after you managed to get as much done as you feel well enough to do, you drag yourself to that luscious bed that should feel like a cloud that came down from heaven and you lay down to sleep the sleep of the dead.

Except it doesn’t help.

Instead you wake up the next day even worse. It feels like when you have the flu and the aches and pains of having that illness still lingers and holds you down. You tossed and turned trying to sleep but you are still having hot flashes like a rushed fever only to throw off the blanket and realize its ice cold in the room. You experience this every single day. For a week. For a month. For a year. Maybe the rest of your life. No rest, or break. The most you feel is on your best days, you almost feel like you haven’t been run over by a car. You only got grazed and you have a few bumps and bruises instead. That is the best you can hope for in your life now.

I was speaking to a dear friend of mine this week and we were talking about rest. She said, “…some of the health people I have been following have said that we need to stop pushing through and just rest but when you have needs and you have people depending on you you don’t have that luxury. So it’s harder to heal.” My only response was, ” I think that people do not realize the luxury it is to do things, anything. And resting doesn’t help when you never get rest. It’s the same advise of “you’re depressed? Just stop being depressed and doing something happy.” Her gentle response back was “You understand.”

Telling someone with a chronic illness to take it easy or to just to take an extra break won’t help that person. Just taking a sick day to “get better” won’t change our lifestyle. People fail to see the chronic part of a chronic illness. We don’t just get rest. We can’t just get better.

We can’t just sleep.

#hugaplushie my friends.

Short post in April

Being spring and having weather and pollen come through where I live makes for a unique challenge on a daily basis. The constant changing temperatures and pressure reek havoc on my body making it difficult to process all the new pain. I keep it short this post with a photo from the mighy.com on fibromyalgia. Keep chronic pain people in your mind with April being here.

#hugaplushie my friends

Running scared.

I have spoken on opioid use before and how it is getting harder and harder to receive a prescribed prescription. The opioid crisis seems to be in the news in a lot of places from talk radio, to the nightly news, to even Congress. I personally have written how doctors have become more and more adverse in regards to allowing the prescriptions to continue even if the person has been on said opioid for 5+ years with no ill effects. I have also written on how pharmacists have the ability to deny a medication based on a visual diagnosis and can refuse to give you the required medicine that has been authorized to you.
In all of this information, or misinformation, that is flying around, we encounter yet another advisory in this “crisis”. The public eye. Friends, family, and even strangers who find out what medications we are taking and the judgment is immediate. Everyone has an opinion, everyone has story they heard. The response is overwhelming.
I heard a news story recently that told of a pro American football player who was removed due to violations to the NFL’s drug policy by smoking marijuana. He responded with a video of him, while smoking, that it helps with his pain and mental health. He then spoke on how it is better for him to smoke that instead of being addicted to opioids like he has seen.
My chronic illness is not your scapegoat.
On a more personal note, I have had people come forward with threats that I cannot be taken seriously because of my prescription. The use of opioids in my past, it has been over 2 years, has now given people a reason to judge me further and to disregard my opinion, my judgment, and almost anything because “We just don’t know or cannot see the effects of those evil drugs on you yet.”
This is madness. I, like so many chronic illness sufferers, have daily struggles to get to work, take care of ourselves, fight an illness, fight doctors and pharmacists, and the public image of what medications we take. In all of this, we then get told we do not matter because of the drugs we are supposed to take to live have affected us too much.
Where is our voice? Who will speak for the trees?
I experience the “common knowledge” from people who know all about how bad the opioid crisis is and how they know what is better for me than my doctor. It is now said with such surety that everyone knows the horrors and effects of how it devastates lives. How dare anyone speak up in defense of this terrible drug use!
I am. Someone has to say something. I am tired of being judged. I am tired of being put in a box and quantified. I am tired of being labeled and categorized because of my medication. Is this how we deserve to be treated? With judgment and scorn about our illness and our help? How should we then live? We have to stand up and speak out.
#standwithaplushie my friends

Special Abilities of Special People

Having a chronic illness is almost like having a few cool super powers. I have mentioned this before with past writings that our illness has made us almost hyper aware and sensitive to many sights, sounds, and smells. These abilities come at a cost of our illness but they are something that I hold on to as something that makes me special.

1. Hyper hearing – I have noticed that those of us with a chronic or mental illnesses can hear so much better than our healthy counterparts. We can walk around in the dark and hear our foot falls and know where we are in the room. We can pick up a pill bottle, shake, and know our medications by the sounds it makes. We can hear the pain in peoples voices that they are trying to hid. We can hear the stress, anxiety, and even sometimes someone lying to us. This comes at a cost of being hurt by loud noises, yelling, and other panic inducing sounds.

2. Super sight/awareness – We pick up on the little details. The person fidgeting in pain in the corner of the room. When someone being uncomfortable around so many people. The look in someone’s eyes as they fail to meet anyone’s gaze. We can feel the room and know the mood immediately. We pick up on the smallest changes in someone’s routine and are extremely observant to those we care about. The weakness to this is we often focus so much on other people we do not focus on ourselves as much. We also can be sensitive to light and awkward situations can cause physical pain.

3. Intelligence/wisdom – This one is a bit different. I know that brain fog can be our weakness but when we have a good day, our brains fire off like a super computer. We know we have to take advantage in those precious few hours of being able to think so we tend to work through all of the different areas of our lives. On the other side, when we cannot think or even move from the bed, we tend to stay quiet. This gives us time to think and mull over what is going on. By taking, or some cases forcing, time to slow down, we are able to thoroughly think through each situation. Besides the brain fog as being a weakness, you are also sometimes observed as “Not being sick” because you are too smart or have your life together. What they don’t realize is that we know we will forget things and we have a million reminders, post it notes, and other various systems in place to help us not forget things.

If you noticed, I put a weakness with each super ability. Just like all super heroes, we have our unique weaknesses. Those kryptonite are areas we should be aware of and knowing is half the battle.

These are just three different areas where we are super! I know there are others and please feel free to share those with me, I would love to read about them. I believe more knowledge is power in this regard and we need all the encouragement in world some days to make it through.

Now go and be super and remember, you are special just the way you are.

#hugaplushie everyone

Getting Sick While Chronically Ill

This article is not giving medical advice. I am not a doctor. This is just observations from someone who has walked a path of illness and the problems encountered. Please consult your doctor before trying any new medication or making changes to them. 

Having been chronically ill for well over 5 years now has been a journey. I have talked about the five stages of grief that you have to survive, the horrors of trying to find doctors that believe you, and even the opioid crisis that has swept the nation and gotten the attention of Congress. One aspect I have not touched on is getting a common illness while being diagnosed chronically ill.

The common cold or flu is debilitating for most people. The coughing and fever run havoc on your body and the aches and pains are terrible to deal with. People take these times to call in sick and take time to recover with grandma’s chicken soup. Others try to prevent it with the flu shot or a Z-pak. The most common option is to stock up on cold medicine and cough drops and power through it while not missing a day at work.

How I wish it was that easy to do.

When you are already taking 5-7 medications (or more), it is very difficult to just grab a box or bottle of cold medicine. You have to check the ingredients in each medicine as you need to compare it to what you are taking to avoid an overdose. I end up having to mix and match different basic medications in order to find the right amount to help. I always cringe when thinking about the liver or kidney damage that is done by the abuse of these medications and since I have been taking mine for many years now, I worry about the stress and damage I have done to my own body in taking what I need to get through each day.

On a good day, I still deal with aches and pains on a level most people would find extremely uncomfortable. While sick with a cold or flu, this pushes my pain tolerance to the limit. Having the wheezy chest and the sinus pressure that makes you fall back into the pillows is hard enough, but add in my fibromyalgia muscle and nerve pain and it hits a whole new level. Factor in that I might not be able to take my normal medication and it just gets worse. Symptom on symptoms will break you.

Common beliefs say that you can just use a sick day and take time for your body to recover. Unfortunately here in the US, that tends to be difficult for many people as sick days for people in jobs in retail, fast food, or the service industries don’t have many days we are allowed to take off with pay. Balancing the options of taking an unpaid day off and the possibility to getting better by not working is difficult. Chronic illness survivors will run into other issues on this as well. We tend to use sick days on particularly hard flare days when your medicine doesn’t help, when your medication has run out and you can’t get more yet, or when your medications have made it too difficult to function and you are in a haze. We tend to be extra cautious in using sick days because we never know “How will I feel tomorrow?”

Having a chronic illness and being medicated as such also invites reinfection. With weaker immune systems due to medications, inability to fight off infections like normal, and body fatigue all factor in to a rolling cold that can last many times longer than a normal person. We take joy in feeling “better” because the cold is gone but in the back our minds we worry about getting it again once it comes back around the office or store.

It can be especially difficult during cold and flu season. I want to say to each and every chronic illness “spoonie” out there that you are a gladiator and deserve the recognition as such. You fight your own body on a daily basis and having an outside invader makes it even tougher. You are a survivor. I see you an I salute you for your bravery and courage for making it each and every day. May you stay healthy this cold and flu season. Those of you who are sick, grab some hot tea and chicken soup, huddle up with your plushie and blanket, and may you get better soon.

#hugaplushie my friends

Focusing Life

Life has been rough for many friends and family. I have seen illness, heartbreak, money issues, and personal problems effect almost everyone in my life. It has been a rough and hard year for me and mine. I have had to keep my chin up, keep going and try to find ways of not only keeping myself going, but also the rest of my readers. In my life, I have found a very important philosophy. What you will seek, you will find.

When you are looking for reasons to be angry, they appear like magic. The little annoyances seem to come out of everything. The office chair wheel squeaking, the car that always seems to cut you off in the morning, and the sound of a sigh that just hits your last nerve like a marksman, all of these just seem to multiply. It can be so easy to see and even seek reasons to be angry if we are not careful.

Conversely, seeing someone who seeks out happiness and the joy that comes with it is awe-inspiring. That person who makes lemonade out of lemons, sees the rain as a way to make flowers bloom, or even their car breaking down as a way to meet a new person and brighten someone else’s day just seems magical. I believe we all have met someone in our lives that just seem to do that. These are people who are looking, seeking, grasping at the happiness, joy and peace that comes with it. These are the people who we strive to be at times but we always seem to fail.

Why is that?

I believe our focus is wrong. We are seeking he happiness, joy, good in life but have our eyes on the dark, terrible things that try and grab our attention. It is very easy to dismiss these happy, bright people as oblivious or even not paying attention to the issues. I argue that they see these issues and seek to find the good in life. Why spread the hate, anger, and depression? How does this help those who need help? I am guilty of not focusing on the good. I am seeking to change that. My first step is to look at some positives.

There are some amazing things that have come out in the disabled community lately. I was watching an infomercial on an Up walker or Upright walker. This is one of those medical devices that allow people who would be hurt by being hunched over in a walker, stand upright and keep moving without stress on their back. People with Parkinson’s disease who would not be able to hold themselves up now have a way to be mobile. Amazing. There is an Xbox gaming pad for disabled gamers. This is a customizable gamepad for people who have lost limbs, have limited mobility, or even people who can’t even hold a controller still be able to play video games and enjoy life. Microsoft poured tons of hours of development and research in making a fully customizable device that is able to allow people to still do what they enjoy.

What you will seek, you will find. Try to look for the positives. Start with a week. Set an alarm on your phone to go off each morning to remind you. See if you can find the good in the world. Let others know your success.

Take me home, Country roads.

Music is such a powerful healer. The sounds and vibrations can help break up stress and tension. Feeling the the beat can raise or lower your heart rate. It provides positive feelings and an escape. For someone with chronic illness, this can be such a welcome escape.

When I am going through a fibromyalgia flare or when anxiety starts to pump adrenaline through my body, I have a method of calming down. I use a sensory deprivation where I go to a dark room, put a nice heavy blanket on, hug a plushie, and I listen to music.

My personal favorite is the Lord of the Rings soundtrack (Fellowship of the Ring, Track 17 The Breaking of the Fellowship). I hear the notes and get lost in the music. It gives the soul something to attach on to and it pulls the body with it. By closing off the rest of your senses, with darkness and being alone, you get swept up in the sounds. It is amazingly peaceful.

In difficult times, music has a way of helping us find a way through. I have known quite a few people going through a bad break-up and listening to their couple’s song over and over. I distinctly remember living in a 22-foot pop-up camper with my family (6 people and a dog for 6 months) in a trailer park. The trailer site next to us had a husband and wife who fought like cats and dogs. Being a trailer park, and VERY thin walls, everyone in a 5 mile radius heard everything, much to our regret. The husband who leave each night slamming the door and the wife would play I Will Always Love You by Dolly Parton, sung by Whitney Houston while drinking wine.

Every night.

As a teenager, this was not a fun event each night. However, I realized that this was a coping method and was a way for her to calm down. The next morning they would come out of the trailer, smiles and hugs until the next evening. Now this is a very unhealthy situation and was horrible for them (and all of us around them). It has shown me that music can help in a very difficult situations and lead you through them.

I am currently facing a huge hurdle in my health. I am having my Tramadol removed from my medication. My doctor is no longer allowed to prescribe it to me. He was very chagrin while telling me. He was upset. Due to the “Opioid Crisis” I am found to be no longer fit to take it. After almost 6 years of being on it with little/to no side effects, a much higher quality of life, and one of the backbones of my pain management, I am being told there is no reason to have it. My chronic pain and illness disagrees.

Strenuously.

I have have to agree with it. I am having to go through a new cycle of pain management. I am having to adapt to life with severe pain once again on a daily basis. So in order to do this, I have been bringing out music once again. My new favorite is Country Roads by John Denver. I have listen to the track 20 hours in the last month alone, though not all at once. Most times it is only about ten minutes. And finding ten minutes to allow my body to relax and get a break from feeling is sometimes all I can get.

I will take it.

#hugaplushie my friends.

PS 

I have seen my readers in Germany SKYROCKET! I wanted to call upon all you out there and thank you with all that I have. Hugs and love to you all! I will being doing a special post for you all! PROST! ZUM WOLH!

The little things.

One of the hardest issues facing someone with a chronic illness is facing what you cannot do anymore. There is a mourning and grieving process that so many of us face. You go through the Five Stages of Grief.  Denial, anger, bargaining, depression and acceptance all rush through you as you mourn the lose of some dear to you. Yourself.

It has taken away my ability to be Jason Bourne. All the action/super hero movies that I watch, I no longer look at and say to myself “I could do that.” I look at trampoline parks that my daughters want to go to for a party and cringe. I feel my body ache prematurely as my wife wants to do a marathon. You dread looking at yard work because you know you will be down for days and not be able to do anything.

Denial sets in when you see life starting to pass you by. You tell yourself to suck it up and do things. You believe what others tell you that you don’t look sick. You listen to what people say when they shout “Why can’t you just be normal.” You push and push to be normal and this makes your condition worse.

Anger sets in because you cannot keep up. You lash out at others who are frustrated with you at not being the person they remember. You scream in your mind that you should be normal and why is this happening to you. The anger rolls off of you in waves, pushing those who try to help you away.

Bargaining comes when you see people walking away who used to be close to you. You start to plead with people to stay. You cling to those last few people so hard it crushes them. You try to keep up and make deals. You try every supplement, exercise, and diet known to man in an effort to make things better. You bargain with yourself that it can’t get worse, but it does.

Depression sets in hard. You see no way out. In the deep hole you have dug, you see what you believe to be your only options. You find yourself trapped and weighed down by your illness. Loneliness, regret, and suffering. You see the bottle, pills or worse as your only way out. You thought at the beginning of all this it would never be this bad. In the general population, suicide is the second leading cause of death for people ages 15-24.

If you are at this stage, please reach out.

Call 1-800-273-8255
Available 24 hours everyday

Acceptance is the hardest to achieve. You have to fight your body, your mind, doubters, and all the other stages to get here. You have to accept that you cannot do what you could before. You have to grieve the loss of your old self. It can feel a very hollow victory when you still have a life chronic illness ahead of you. I look at these stages and milestones at how far I have personally fought to get over. You have to accept what you are now and that is OK. It is OK that you are sick.

I may never be Jason Bourne, but he is not real. I am. And I am still here.

#hugapony my friends

A Vacation, Part 2

Vacations are fun for a multitude of reasons. Being away from home, feeling special in public, and not having too many responsibilities. For someone with a chronic illness it has an unexpected side effect.

A vacation from yourself.

When you are at home surrounded by people who know you, there is a certain expectation. Those close to you know what you are going through and help out in the areas you are lacking. The flip side of this is they know how you used to be. They remember how you were able to do so many things. This can make things awkward when you are faced with an activity that used to be so simple but now is a task and a chore.

When in a new setting and with new people, there comes an easier understanding. You explain your condition and there is a moment of understanding (for the most part). You are able to be yourself a bit more than usual. You don’t have to hide behind the mask you put up when in pain.

Two main things came out of my vacation in this regard. First, you are able to truly look at yourself and see your condition in a new light. You get to be honest with yourself, in being honest with those around you. You get to see the amount of pain you are truly experiencing instead of trying to mask cover, or make excuses to yourself and those around you. This can be a harsh reality to face.

The second thing I realized was the effect of my condition of those close to me. I know I can get wrapped up in the misery of my condition and not see the reaction of those around me. Those around you are suffering from the loss of an able friend. A spouse who now has to pick up the slack. The brother who is not the superman he once was.

It is very easy to forget that our condition effects more then just yourself and your body. It touched the lives of all those who know you. The suffering reaches beyond your own body. The ones closest to you suffer with you. It is true we have to fight the guilt that is sometimes associated with not being able to do activities with love ones. I feel we tend to forget that those same loved ones are suffering as well.

Take a moment, all you chronic illness warriors, and reach out to those close to you and thank them. Tell them you love them and appreciate all the ways they help you. Remember, a vacation from yourself is not a vacation from those who love you.

#hugapony everyone.