invisible disablity

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.

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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

 

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

Pain invades my sleep.

/ Daniel/Codefreak / 3 Comments

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

Pleasant Company.

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Over the past few weeks I have been introduced to many people who suffer from chronic illnesses and disabilities. Some online through blog posts, some through video games, and others in real life. I have gotten to talk and help quite a few people who are suffering. I have seen people in so much worse situations and see them powering through with a strength that makes me ashamed of myself.

In my opinion, everyone who suffers like this goes through a period of time when they question themselves on how much suffering they go through. I have been hit hard this last week. I have question how bad am I, what level pain should I admit too, and what right do I have to suffer in all my suffering. One of my issues with invisible illnesses is that I am in constant stress over being judged on how I look. “You don’t look sick” “Are you sure you aren’t feeling well” “It can’t be that bad if you are still able to walk around your house” Words ring in my ears and brain, reminding me that it must all be in my head. Famous words for anyone suffering from fibromyalgia as most doctors are quick to through them out.

I have had personal events happen that reinforce this. I have been denied disability. I submitted to the 8 month long process that took place and have seen more doctors and nurse than I care to admit. Being weighed and measured, poked and prodded has been an absolute nightmare. I suffered through it and in the end I was deemed too fit to be on disability. In the end letter, it was determined that I did suffer from fibromyalgia, insomnia, anxiety disorder, nerve pain, muscle pain and more. A total of 9 severe problems with my health. They did not find these severe enough to warrant me disabled. My final icing on the cake was reading on of the last lines in my letter saying: “If your job is too difficult for your condition, find an easier job.” My mind’s sarcastic response was “Sure I’ll go to the job tree and pick a new job straight off the branch.”

I have also had to fight with new insurance and new medications. I have been prescribed Lyrica. This is the first drug that I have seen that is specifically made for fibromyalgia sufferers. Being new, it is expensive. The classification it has been giving by insurance is that unless every other test and drug has been used and found not to work, then they will not pay for it. Fighting to get help is one of the most common themes I see in chronic illness patients. As if we didn’t suffer enough.

In my recent post that has been published, I have been able to interact with many people that have a myriad of different conditions. I have wept over reading the stories of those who have suffered. I have talked and comforted those who asked. I have been praised for helping raise our voice so others can see. In all of this, I look back at myself and ask “Am I really that sick?” Do I have the right to be a voice if I am not suffering as much as those around me. I am constantly questioned on how bad my pain and condition is that I am beginning to question myself. Yes, I have pain but is it bad enough.

I read an article recently that brought it to light for me. Erin from The Mighty.com posted on how Doctors are Advocating on Pain Acceptance. Doctors are now looking into “pain acceptance” as a treatment philosophy. It is an eye opening to see the direction this is going. As someone who suffers, I find it interesting to see that not believing chronic pain sufferers is a new direction to go. To be told that we should learn to live with the pain is insulting. To be told that my opinion, the patient’s opinion is not considered and the doctor’s view of my pain and condition makes me all the more fearful of doctors who don’t listen. Being told that I should just accept and live in pain, which is something I do every day, makes my and so many other voices sound like we are complainers.

It is infuriating.

If anything I have seen over these past few weeks is how many there are of us. It has shown me that we need a voice. It has shown that I matter. It has shown me more kind and compassionate people who, suffering like me, agree that we are not being heard. We have to fight our illness. We have to fight for our diagnosis. We have to sometimes fight our doctors and pharmacies and lawmakers. We have to fight to make our voices heard.

Thank you all for the pleasant company.

#hugapony my friends.

World War me.

/ Daniel/Codefreak / 1 Comment

I am recovering from my last convention and am trying to regain lost rest and sleep. I want to thank everyone who came out to visit and I plan on special post for all of you. I am humbled and honored by the response that was given. It meant as much to me as to you.

I have been diagnosed Fibromyalgia, panic disorder, insomnia, and quite a few other conditions for 5 years now. I have experienced a lot and have struggled to find the help I need to make it through my day to day routine much less when life throws me curve balls. I have tried and put into place all manner of methods of managing my conditions. I have changed diet, put in a modified exercise regiment, and adjusted my life to fit my condition.

I also take prescribed opioids.

News outlets have been reporting on the “Opioid Crisis” that has arisen. They talk about the real effects on people’s lives. They talk about the families being torn apart with the misuse of the drug. They are representing every side of the issue.

Except mine.

I, like many other chronic illness sufferers, rely on the use of these drugs to lead somewhat regular lives. Understandably we do not represent all responsible opioid use. However, we do regularly get added to the group of opioid abusers. The news loves to report the numbers of total users or the max number of prescribed people in US. Using these numbers all kinds of data can be thrown around as to the approximate number of abusers. I am not ignoring the rising numbers of opioid related deaths, I fear that too many people are caught up in the panic and it is hurting the people who need the help.

I have recently changed pharmacies due to the national response. CVS has come out to say that they will not prescribe more than a weeks worth of an opioid to cut down on the number of pills in the public. This hurts in several ways. I now have more co-pays to look forward to paying. I now have the stress of going to the pharmacy once a week instead of once a month. I get to be faced with the pharmacy techs who judge me on my condition. They have to evaluate what I take, how many I take, and how often I take it to ensure that I am doing everything correctly.

It can be humiliating and debilitating.

It can also lead to them to refusing to fill a medication. When I was first being diagnosed, I had a tech tell me I couldn’t have any more medication, even though I was taking them as prescribed (Post is here “Anxiety now?“). I have also been through the panic of not being able to see the doctor in time or canceling my appointment so I end up running out before I can get the help I need (Oh Day of days). It is so tight now, my new doctor has a new form that I had to fill out saying I have to bring all my meds into the office each visit and be subjected to random pill count checks.

To quote a friend, “This is victim shaming.”

“We are not getting the prescribed medications from our dealer or a junkie. We getting these medications from a licensed doctor who has examined, poked, prodded, and run tests to find out what can help. We are not using these pills for recreational use. We are using them so we can get out of bed and live a somewhat normal and have a job.”

This is a crisis. My crisis. My own personal war inside me. I have to fight to get help. I have to fight to get time to go to the doctor each time. Taking off work to go see a doctor takes a lot of time and most jobs are not forgiving. I have to look at what I have and ration. I have several medications that are “As needed”. Do I take them now when I am having a rough day or do I save it in case I have a worse day? Why do I have to choose?  Who is speaking for me? For us?

I am only one small voice on a small platform.

I am speaking up.

Don’t forget us in the crisis.

#hugaplushie my friends.

 

 

 

Ikkikon 2017.

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I will be at Ikkicon 2017 and I will be doing a panel on invisible disability on Saturday Dec 31st at 6 pm to 7 pm. Come join me as we talk about living with invisible disabilities and share in a safe space our experiences and ways to help each other. I will have a special prize for the first two people who come up to me in the panel and say “clumsy draconequus” will get a small prize!(Kudos for those who get the reference).

I cant wait to see you all!

Come out and hug a pony with me!

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PS – Picture from http://tygerbug.deviantart.com/art/Hug-Life-Shirt-319992930