chronic illness

Worked up from home.

/ Daniel/Codefreak / Leave a comment

In this period of post-COVID and the struggles of the mental health/invisible illness community that has been given a spotlight to the world. The struggles of not being able to leave the house or the mental strain has been enlightening for many.  There is one area that surprises me that has garnered so little attention. The ability to work from home.

This lovely ability which so few of us even considered pre-pandemic is now such a staple to the workplace there has been active fights to go “back to normal”. Seeing articles like this where people and governments want more butts in seats at offices to ensure “work is being done” or to justify the multimillion dollar leases/buildings that they have spent money to obtain. The constant fighting and arguing about how working from home is hurting the economy and society (really?) is getting tiresome. This however is a ruse, in my opinion, and brings up a separate point. Being that we switched to working from home so fast and with such ease, it begs the question, why haven’t we done this sooner for those who CAN’T work in office or have disabilities working?

I have worked in office during the majority of the pandemic and find myself very fortunate to have worked in jobs that have been understanding of my illnesses (Fibromyalgia, Chronic Pain Disorder, IBS) even before that. However, more recently, I have been put in a position of a new job and the ability to work partially (hybrid) from home. The difference has been amazing. On days were I have a severe flareup, I am able to use my heating pad and wear comfortable clothes. I can relax my body and not stress out over the constant people at my desk. I do not have to risk my lower immune system to any and every passing cold, flu, whatever a few times a week. It is quite lovely.

This comes back to the point at which asks, why did we not do this sooner? How long have businesses gone and said “we can never do remote work”? It took them less than a month to get an entire world the ability to work from home during lockdown. Now they want to go back because they want more control. They have never cared about the invisible illness community or those who are immunocompromised or people in general. Workplaces and companies have claimed inclusion but ignore so many people suffering when they themselves took advantage of the situation and got their employees working from home.

There has never been a more shining example of the blatant disregard to those who are struggling or suffering due to the fact they have an illness they cannot control. I have many friends who have a difficult financially who would love to take advantage of the ability to work from home. The technology is here, we have been shown it works. The workplace has adapted and changed forever, and in the best of ways. Don’t let them take back this opportunity.

I will say, not every job can work from home. I understand the industries and businesses that require in-person interaction. However, please tell me how data entry and answering phones cannot be done remote? Please tell me why you don’t want to be accommodating to those who can’t leave the house without risking their safety? This is an issue that needs to be answered. We have been ignored long enough.  

Stay safe my friends. Hug a plushie.

PS I have been informed that I have been here 8 years writing. It has been a pleasure sharing my story with you. May I be here for many more.

Advertisement

The Dangers of Easy & Cheap Self-care.

/ Daniel/Codefreak / Leave a comment

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.

Ring in the Holidays

/ Daniel/Codefreak / 2 Comments

I am sorry for the lapse in posts. I have had a few life events that have made it difficult to post and I hope to explain a few of those here. I hope everyone is well and I look forward to bringing you more posts with this new year. Stay Mighty and Hug a plushie everyone.

It has been an active, interesting few months for me. I have had a little time to reflect on this past year and it has been quite overwhelming. I have been faced with a brand new life as a single dad. I have found a new job, career, car, and people. Change can be good but it is difficult for someone with an invisible illness.

Change is difficult for many reasons. One of the mainstays of a routine is that you are able to plan accordingly. With an illness, you do not know when the next fibromyalgia flare up will be, if the day with lupus will give you enough energy, or if yours Crohn’s disease will give you time away from the bathroom. Having a routine allows you to be able to plan around those when you build in time or because you expect things to go poorly.

Holidays seem to complicate those times.

Last minute parties, rushing to get a gift, cleaning the house for guests all seem to through those routines off schedule and it makes it difficult to find time. It always is hard to tell someone who invited you to a last minute event “No” but we really are running on empty and we are just trying to get back in a grove. We face so many issues in the day that when something does come up, our bodies scream, “Please no more.”

I have gone and seen a new doctor in the past 2 months. My PCP had gotten a Rheumatologist recommendation and I was eager to see what help I could get. The doctor was kind and receptive and confirmed every diagnosis that I had been given. She also started me on a new medication and did quite a few tests. My routine was soon uprooted by the new medication.

Introducing a new medicine is hard on a person. The side effects, which can be many, take hold and throw your body off. You have (yet another) pill to remember to take, make sure it is taken with food or not, and what clashes with the other 6 medications you already take (at least for me). Your routine gets thrown out the window. Add in the fact that we are knee deep in the holiday season and it is a recipe for disaster.

I am however, still going strong. I have been able to make a trip with my girls across states to visit family. I have held steady at my job. I have continued on with my life. Even with this “Playing life on hard mode”, I have tried my best to keep myself leveled up to be able to continue. I encourage you all with invisible illness to not give up, the routine will come back, and it will get better. I am proud of each and every warrior that is fighting their own battles. To those who help champion us with illness, I thank you from the bottom of my heart. You truly are great people.

For those who interact with the invisible illness community, take a moment and see if someone you know is doing OK this holiday season. Reach out and call or text some encouragement. Give a little leniency to someone who cannot make it out to your party or event. Remember to give the gift of grace to those who need it.

Happy Holidays and #hugaplushie my friends

 

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

Sleep for the Sleepless

/ Daniel/Codefreak / Leave a comment

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

/ Daniel/Codefreak / Leave a comment

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.

/ 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

/ Daniel/Codefreak / Leave a comment

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

/ Daniel/Codefreak / Leave a comment

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

/ Daniel/Codefreak / Leave a comment

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.