health

The Dangers of Easy & Cheap Self-care.

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I have come across an article that talks about self care that is cheap and easy. In the article, Clean your room, go for a walk, breathe. Self-care is cheap and easy. it shows how a little bit of self care can go a long way to improve your mood and well-being. It reads as a, get in touch with yourself, ground yourself in the moment and get in line with your feelings. Look at nature and take a walk. Savor the moments. Eat a good meal. Exercise. So light and breezy anyone can do it.

I heartily disagree.

The author talks about self-care and the things she picked up on during a rough patch. She talked about small mental exercises. I want to look at these points separately.

Cleaning your house is not self-care. That is being an adult. Maintaining your living space and washing your body are not self-care for a normal person. When you have someone who has a chronic illness, especially when you have dizzy spells or energy issues, then bathing would be a form of self-care because it would a task that requires a lot of effort. The author feels like she is trying to convince herself and the article seems to shift topics often. Real self-care, to quote a friend of mine with Lyme Disease, is:

Self-care for me is saving my money so that I can spend $250 on one hour of Skype with a natural doctor in Canada so that I could help my body recover from Lyme disease and lupus.
Self care for me is spending $100 a month to have someone come in and clean my bathrooms because I literally cannot physically clean my own bathrooms.
Self-care for me is actually going out and working that part-time job in that dress boutique so that I can be happier by encouraging other women to feel good. And in turn, I make a little bit of money so that I can save up to see the doctor and to have my bathrooms cleaned.
Self care for me is also the hard part of asking people to help me do things, because I can’t do them alone by myself. Or because I get overwhelmed in trying to do them by myself.

I believe that when you perpetuate the notion of self-care in a flippant, valley girl almost, way of “its so easy!” it hurts those who cannot do those basic things. I understand that this article is not directed to the people who suffer chronic/mental health issues, but it is dangerous to paint everyone with a broad brush. Making a stereotype of self-care is cheap and easy results in either people who these efforts don’t work and it becomes a bigger issue, or, if you just “did these 5 easy steps” you would have a better life. What happens when these steps fail and the judgment comes? I fear that path.

As to the second part of changing mental habits, I agree with the Psychologist in the article that when we don’t have good habits that they are replaced with bad ones. It is very easy to fall into bad habits with chronic illness. Trying to feel mentally positive when you are fighting each day to do basic things is difficult to an extreme. These changes can improve your outlook but do not changes the facts of what your body is going through.
This can also lead to a sense of looking healthy on the outside (“You are so positive and happy on the outside, you must be better”) but still be going through an immensely difficult time on the inside. People become less inclined to believe that you are actually sick. You are trying so hard to put on a face and not be the person that no one wants to be around due to your illness that it turns into a real issue when symptoms manifest themselves in a terrible way. This results in “I thought you were getting better?” or “You must be exaggerating/faking.”
I feel the dangers are real when self-care is perpetuated in such a simple fashion. Can small changes in outlooks help relieve some stress? Yes. Can everyone do such actions. No, they cannot. It is not cheap and easy to do self-care.
#hugaplushie my friends
-Dedicated to R.A.
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Tumbling through the Fog

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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

Power on

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It takes an amazing amount of energy and work to get through the day. Speaking for myself, I know that it takes a lot to get out of bed, shower, work, clean, spend time with my girls, and then try not to collapse into bed too soon. Somewhere in there I have to find time to eat and write. It takes a lot to be me.

And I do it with a chronic illness.

Having a chronic illness makes everything you do seem like you are doing it with a large animal strapped to your back, holding you down on a good day and on a bad day, it is trying to drag you the opposite direction. You walk through what feels like jello, it takes an hour or two to wake up with your body hurting so much, and you fight to hold thoughts in your head through the brain fog. If you take medicine for this you are also judged, weighed, and told how it is just a crutch to make you feel better.

All this for me is made harder in that I am socially awkward. Being an introvert makes it socially draining on me to be around other people. Just talking and interacting with people takes a toll. I take my issue a step further by helping others and providing advise to those who ask. I stop and listen to see what is needed and just to let others talk. I take extra time to ask people about their day and to see what I can do for them.

Why do I do this despite the fact I deal with so much from my illness?

Because we have to be better and overcome our issues. Everyone has them. We all have things holding us back. Be it physical, mental, emotional, or otherwise, we have issues that cause us to not be the best we can be. Our problems are not the issue. It is our attitude. Sitting down and throwing a pity party will not fix things. Getting up, giving it a 100% even in the times we know that we might not win. Just because we don’t like it doesn’t change the fact that we have the power to change our viewpoint on it.

I know what I have been through in both this last year personally and over the past five years with my illness. I have seen the hardships it has caused and the problems to come. I have seen where it has gotten the best of me. However, I do see where I did not let it hold me back. I have seen the problems I have overcome by continuing on my path even when it got hard. I made the decisions that needed to be made and followed through on them. Just because life has gotten tougher does not mean you give up.

I have learned in the hardest ways that I am not perfect. It has not stopped me from trying. Some days are going to be rough and get the better of you. It will happen. You have to decide what to do with the days that does not happen.

What do you do when you have a good day?

Keep powering on and #hugaplushie my friends

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.

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

Resolute Resolution

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As we come to the midpoint of the first month of the year, we come into the time period where most of us abandon our “New Year’s Resolutions”. The first 15 days are difficult and making a habit to keep takes from 21-30 days according to most studies. So I have one question for you, dear reader.

How well are you doing?

I will be the first to admit I am not perfect. I have messed up a day or two. It has been extremely difficult to keep going with depression and my physical condition. I also tried a new thing where I started my “resolution” the day after Christmas. This way by the time New Year’s rolled around I was already a week into my workout and diet.

Now I would say again I have missed a day or two. I also weighed myself and I am 5 pounds (2.2 Kilos) HEAVIER then I was when I started the diet. It can be extremely discouraging to put time and effort in and not see the returns just yet. I understand the pain of not seeing the fruits of your labor.

Now is not the time to quit. Now is the time to push through. Now is the time to say I will continue instead of giving up. Given up? Time to start back. The key to it all isn’t failing. The key is to continue going even after falling. You pick yourself back up and you start again. Fell again?

Keep going.

Life isn’t going to stop because you fell. As much as wish we could get a break, or we make a break, life gives us no chance to catch our breath. Then, when we take a breather, we end up living in a “break“. In the moments where we are finding ourselves, take the day off, all activates that we need to recharge ourselves, we stay there.

Are you living in a break?

Find the motivation. Listen to the music that boosts you. Find that small reward at the end of the day that gives you the focus to make it through. Now is not the time to live in a break.

Now is the time to live for yourself.

#hugaplushie my friends

The Year of Hell – 2018

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As this year closes, I find myself with quite a few people who have not had a very fond year. Memories of 2018 seem to be cutting deep for all of us with personal and private losses. I know for myself that it was a record year for what I have been through.

In the past year I have lost several family members. Deaths of my grandmother, uncle, and grandfather-in-law hit hard at several points over the year. They were spread out so it was not all at once but baring those loses still bore down on me.

This year, my wife and I separated and were divorced. I cannot begin to describe the amount of pain, anguish, and hurt that I have been through in this process. Dealing with the courts, being there for my kids, and being single all have been overwhelming in all cases. I will say that my Ex-wife has done a tremendous job of trying her best and we are very civil. Pain, however, is part of the process and it does not stop.

As with the above mentioned divorce, I have had to: Find a new job, Find a place to live, Get a car, and rebuild a life. Much in the same way as getting a chronic illness diagnosis, in a divorce you have to find a new you. Rediscovering everything about yourself is quick daunting and can crush you. Having now been through both of these has added a whole new level of understanding. Learning to live and work and even play (when you even can find the energy) is completely different and is amazingly difficult. You find strength you never knew you had. Some days, it just doesn’t happen and you have to learn to accept that.

I have lost around a third of my friends in my life this past year. Be it time, distance, personal beliefs, or something else entirely, I have lost much more then I have gained in terms of numbers. Such losses take quite a toll on someone who doesn’t have many friends. Chronic illness tends to get in the way of making new ones or keeping the ones you have at the moment. I will say that I have seen a few friendships grow deeper and the ones who have stayed have been amongst the best of people. Thank you.

In all this madness of this year, it has been a bad year for chronic illness sufferers. The Opioid Crisis has been one of the focuses of the year. My medical insurance has skyrocketed along with my medication cost. I have written more published articles than all my years past combined and most have dealt with these issues. Depression and anxiety with the growing social issues and personal issues have taken a huge chunk of my spirit and I find it hard to find the faith I once did before.

However, in all of this, I have survived. I use survived as it has been one hell of a battle to make it through this year. I come to the close of this calendar and I live. By reading this, you as well have made it. I am so proud of you and us in general. I want to congratulate all of us for making it. I still plan on being here, encouraging everyone, staying the course on being positive in this valley. I hope by sharing my story of this year has brought you hope that if I can make it, so can you.

#hugaplushie my friends

PS – Props to those who get the title reference.

Getting Sick While Chronically Ill

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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

Opioid-Ed

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I am angry. I have been watching the opioid crisis “epidemic” for quite a while now. Congress just passed legislation to reform everything on opioids. I have read the plan and I see so many issues with what happened. I am deeply concerned at how it is going to affect chronic illness patients and I believes it shows exactly how the country views mental health and chronic illness as a whole.

 

The money spent is a stopgap. The call was for $20 billion dollars and the bill didn’t even get half that. Quoting the Washington Post, “Yet many public health advocates and experts say it doesn’t offer the one thing truly needed: The massive amount of funding needed to fully combat a crisis that deeply affects rural and urban communities across America.” It goes on to say how little prepared we are for mental health in the medical system. This is not the overhaul we need to fix the broken mental care that so many desperately need. This bill will only help people in the form of a grant which may or may not be available to everyone. Grants are competitive and once used up, there is no more help until more money comes.

 

Congress also had to deal with a little known rule known as Institutions for Mental Diseases exclusion rule. It had prohibited Medicaid from reimbursing substance abuse centers with a certain number of beds (16 or more) for patients with mental illness. Why this obscure rule that is decades old shows exactly how broken and old the system has become. An even bigger concern of mine is who is the oversight on this money now to be released? Are we watching were this money is going? Is it even being used properly? I know close friends who get run through mental health “mills” that don’t treat patients and are more concerned with getting money for the number of patients they process. This is going to feed into this broken system and we are going to see a rise in the number of claims in an effort to get a piece of this pie.

 

In the same thought, the number of opioid addictions are declining, however heroin overdose is rising. The CDC says that in 2017, out of 72,000 overdose deaths, 30,000 were caused by synthetic opioids. This is not prescribed medications. This is not for the chronic pain users. This is a synthetic compound that is in laced heroin and is an illegal drug. Almost all the chronic illness patients I know are responsible people and do not abuse their medication. These are the statistics that are being used against the people that actually need help.

 

I look at these actions and I know it is an important election year. I feel this is mainly a political grandstand and we are showing that we are not serious about reform. Chronic illness patients are once again overlooked and not even considered in the bill. It focuses on how opioids are a gateway to addiction. Congress and the general public view us now as heroin users and we need to be treated for our addiction and not looking for ways to help us except with small mental health improvements. That also shows they believe that chronic pain and other similar afflictions are viewed as mental health issues and not a disease. We can view addiction as a disease but not something like Fibromyalgia, that is all in your head.

 

Please senators, congress, anyone in government, come live in my head or body for a day. I have never wanted to do this before but I wish you could feel the pain me and so many others are in daily so you could understand.

Take me home, Country roads.

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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!