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

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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.

 

A Vacation, Part 1

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.

Support day.

This year has turned into quite a roller-coaster for quite a few people, myself included. I , I feel as if we have had nine months of news stories in the span of only 60 days. I know I have had to look for the positive stories more than anything to remain hopeful. I have also worked hard to bring the fight for others like me who are suffering in the opioid crisis. During this time I have been dealing with a long run of fibromyalgia flare ups.

I am hurting, tired, and worn out.

This is a unique time of year. The darker, colder months of the year for the US and this leads to more depression. The break from holidays and the excitement of the new year has worn off for most people. It becomes harder to stay focused and to be able to focus on the positives.

It also happens to be my birthday time.

My birthday is in the beginning of March (actual date redacted). Birthdays were always an old day for me. I have been very blessed with a wife who goes and plans a wonderful day for me. She is quite a amazing at it. I quite grateful for all that she does. There can be one thing that holds me back.

My condition.

I have to take time every month and access my pain levels, what I can and cannot do physically, and more. It is difficult to look over the past month or two and see where I have declined, what I have done better, and general self care. In doing so, I have found myself in a rougher spot this time of year than most birthdays.

It is difficult to be in a happy time and be brought down by your illness. You struggle and fight to be happy and appreciative. Inside, you are trying your hardest, and want to shout out that it is all amazing. What can escape your lips is far less than what you want to say.

But still I fight. I know many who fight with me. I know many who fight for us.

I want to give a shout out to those who fight to be happy in the bad times. I am proud of you and I believe the world is a better place with you still in it. I want to give a huge shout out to those who help take care of us. You all go above and beyond with trying to show us how much we are loved and do amazing things. You make life worth living for so many of us. You are amazing and strong.

As always, a big shout out to all those who read and support me. I am humbled and honored that you choose to read what I write. You guys rock and make me feel like a rock star.

I ask all of you to give some love and gratitude to those who support you. Sometimes the best way to help yourself out of a hole is to help others. Showing love and compassion will return it back to you.

Thank you and I love you all.

#hugapony everyone.

Pain invades my sleep.

It has been a bad couple of weeks. Pain has been a constant reminder of my condition. An aggravating and hard reminder. One that reminds me that, yes, I am sick. A reminder I wish I could forget.

Waking up in pain makes me never forget. You lay in bed feeling like a major test in school is waiting for you, that you just worked out so hard your body is screaming, and if you even tried to roll out of bed and hit the floor, you would not feel it as your are at your pain level cap. I hurry to get pills in me and have them start working as soon as possible. A baby waits to be taken care of and I am responsible for this 7 month old bundle of joy and energy. I have to get going as soon as she wakes up.

Coffee is my nectar of the gods very morning.

Pain is also available in the evening, free of charge. I hurt in the hours leading up to the time when I can lay down to not sleeping. My body does not relax and is tight from being in pain all day. Insomnia sets in for a few hours. I used to be able to fall asleep in under a minute. I trained myself in college to fall asleep fast as I had 3 noisy roommates. Those days are gone now.

And now pain invades my dreams.

I had a dream last night. Dreams are a rare occurrence. Most nights I can’t fall into REM sleep. This night I was given a very strange view of my life. In this dream, I was hooked to a morphine pump for my pain and told to press the button as often as I needed it. As soon as I felt the pain, I would hit the button. Every 5 minutes I would press it. Over and over again. The pain never left me. It was dulled for about 30 seconds. Then it came back. For what seemed like hours I tried to fight off this pain. It never went away.

I woke to my usual pain and I grew afraid. Was this my life? Was this my fate and destiny to be chained to drugs? This is what drives people to depression. This is what causes anxiety. To be under constant bombardment and never getting a moments peace.

On common theme I see in my fellow pain warriors is when we do get a low pain day, we over-do it. We push ourselves and celebrate. We try so hard to live a normal life, even for a day. To get that day of relief is a blessing. It keeps us sane for when the next comes crashing down. It keeps us going.

I fully understand my need for help. I understand my need for medicine and how it helps me. I know some days, most days I would not be able to get out of bed without this help. This blessing and curse.

And my constant pain reminder that follows me.

#hugapony my friends