illness

Tumbling through the Fog

/ Daniel/Codefreak / 3 Comments

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

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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.

Running scared.

/ Daniel/Codefreak / Leave a comment

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

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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

A Vacation, Part 1

/ Daniel/Codefreak / 3 Comments

I am currently on vacation in Tennessee visiting family. It is a welcome reprieve form life and the stresses in it. We have not had a true vacation in five or more years. This spring break for my girls is their first since entering the public school system. It is exciting to see their minds to take a break and I admire, and am so proud, of how smart they are becoming.

One issue I am having with this vacation is me. I am finding myself not being able to do the activities with others. I am in constant need of more breaks and rest stops. Some times I just need to stop and sit for 20 minutes as my energy levels are too low.

Chronic fatigue hurts.

This coupled with the pain I am constantly in makes it difficult to enjoy some of the exciting aspects of my vacation. I am having to accept the fact that I have more limitations on what I can do. This hurts more than I first anticipated.

Yesterday I went to a children’s arcade/play place with my two eldest daughters and my nephew. My girls had a blast running around in the playground area and climbing the inflatables. They wanted “dad” to run and jump and play. I smiled and did my best, but no where near what I felt I should be doing. It hurt me to tears and not being able to play with my girls.

Today we went shopping. I was the only dad in the group of 6 girls so I ended up with both shopping carts and helped with the lifting and sorting. It was a morning that was already rough due to a fibromyalgia flare up. I ended up sitting more often than not. I smiled a fake smile and pushed as hard as I could through the pain. It wasn’t enough and I felt terrible. I felt guilty at holding the group back, even though I knew I could do nothing about it.

It is a hard situation in the fact that I am suffering from a chronic illness, feeling that I am letting my family down by not keeping up, and then having the guilt and depression from all of it. Constant 24 hour pain and having some seasonal allergies pop up complete the horrid picture. I feel so tired of fighting.

And its not just the chronic fatigue.

I have been reviewing my condition and well-being these past few months. I have looked at my medication and doses and have decided that i am in need of an increase. I have been reviewing how much I have limited myself in lowering my dosage to not have to deal with the pending opioid crisis. I have talked with my doctors at lower it so I am not considered in the “addict” category. I am slowly realizing that this is futile and I need to focus more on making sure that my needs are met.

Then there is the guilt from others at taking a vacation.

Society seems to think that a disabled person is someone in a wheelchair or crutches, barely able to move ever. I have received, for lack of a better word, hate for doing activities that I love that I should not “be able to do” because of my condition. Just because I suffer does not mean that I cannot take a vacation. Do we give up our right to happiness by having a condition that holds us back? This does not mean I get to take a break from my illness. I have suffered everyday of my vacation. I do not get a break from my symptoms. Why must I suffer the feelings of others who feel the need to tell me that I must be faking if I go on vacation. Why add that to someone who is already suffering?

It feels incredibly frustrating.

We try to live normal lives. We deserve to have vacations and enjoy life when and where we can just like everyone else.

#hugapony everyone.