Worked up from home.

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.

The Fibro-Dad

Being a dad with fibromyalgia is a difficult life. The days are long, lacking energy and being racked with pain. You end up staring at the clock, trying to survive to the next min, hour, anything to the time when you can get relief. However, when you have your kids involved, this adds a new level of pain, shame, and hardships.

When I was diagnosed with fibromyalgia 2 years ago, my daughters were 5 and 7. I was already a full-time dad with tons of responsibilities. I was working full-time, managing flareups, and trying to find time and energy to be a dad. Over the next 2 years, my condition and health worsened. I had to leave two jobs over my medical conditions and ended up a stay-at-home dad. My wonderful wife picked up the slack on the job front, and my daughters started helping me at home.

I would have days were I could not move from the bed. My daughters became super troopers and would ask, “Daddy, are you having a bad pain day?” “Yes baby, I am.” My soul would be crushed at having my daughters help me. I was the dad. I should be the one taking care of them. Over the next year, I would learn to swallow my pride and shame, and learn that I needed to accept help. My girls adjusted and learned to cook, clean, and help me around.

Then my wife got pregnant.

We were overjoyed. I love my daughters and wanted the best for them. Now there would be a new little sister added to the family. I was so happy for a moment. Then it dawned on me that my new daughter would never know a daddy who was not in pain. This new life would never be able to see me at my full best. Would I have the energy to keep up with this new little one? Would I be able to overcome the pain to be there for my wife? How was I going to be able to help?

I was terrified and ashamed.

Throughout the pregnancy, I did my best. I got a part-time job to help with the bills. I helped around the house, pushing myself in ways I thought were the most I could give. Little did I know that more was required of me.

I was only able to hold the job for a few months before pain and fatigue set in and I was unable to continue. Amazing family and friends pitched in support in ways that still make me tear up. I pushed though until the wondrous day of the birth of my new baby girl. I was a proud dad for a third time. We brought this bundle of joy home and she is amazing. She laughs and talks and makes life so fulfilling.

My health chose to find this happy moment and turn things to 11.

Over the past three months, I have had my pain levels spike and maintain those levels for weeks. After two weeks at a time with no relief makes for a serious mental breakdown. I had to find days to which to take heavy meds just to get relief. Caring for a newborn is difficult in the best of times.

Doing it with Fibromyalgia is a nightmare.

There are no breaks in the day at which you can just lay down to try and relax your body. The little restless sleep that never gives rest is gone. You learn to survive on even less energy, more pain, more problems. That survival has made me go back to watching the clock tick by the minutes until my next moment of peace.

I find time to catch a break in these small moments of the baby sleeping. I rest for 5-10 min before another daughter needs me or I try and summon the energy to complete a task of housework. I would not trade my life with my beautiful wife and amazing daughters for anything. It just takes me longer and is harder for me to do the things that need to be done. Sometimes I don’t know how I am able to get all the daily tasks done. I feel that makes me a super hero.

The Fibro-Dad.

#hugapony my friends.

Back in the Saddle again.

I have taken today by the horns and started writing. Again. I have taken a sabbatical from it to refresh my mind and handle life events. I return today feeling ready to start again.

Writing has a way of clearing my mind and making a way for new thoughts and ideas. I have mulled over a paper/book thing for a while now and I have hopes of continuing on in this pursuit.

Scared? You bet I am.

It is always hard to put yourself out there in front of people and share what you think. In today’s society, this is more true than ever. The current political and social environment make it quite difficult to express an idea or view.

This makes me quite sad.

How many writers, painters, and scientists are being squashed beneath the overbearing weight of the public eye? How many of these are being judged in the open court of public opinion?

Sharing yourself is a scary business.

I will continue on in this endeavor. I will try and share my ideas and thoughts to the world, God willing.

I hope you will join me.

#hugapony My friends.

Quicky. Busy season.

I have been in the busy season for conventions. August is very busy month for me. I have worked 5 events in 6 weeks, including several panels for my Invisible disability panel. 

While this has been enjoyable helping and working, I have not had the time to sit down and write as much as I should. I apologize and I hope to be back in the swing of things soon.

Know that I love you all and that you are all wonderful people. I want you to remember that you (yes, you) are wonderfully made and are special to me.

#hugapony