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.

Advertisements

Gone baby gone.

I have been so sick I don’t remember the last 2 days. I have been trying to sleep but a fever has kept me in the mid state of sleep/not sleeping. Not my favorite way of enjoying myself.

I did want to share that I have been hired by a subcontractor company for Google as a website reviewer. I passed all the testing and I can’t be more happy.

Thank you all for your thoughts and prayers. I am going to go eat for the first time in forever.

Rolling stones.

I had a fun weekend. I managed to pass another kidney stone (that’s 2 so far for those keeping score). I was able to pass it without the extreme pain (fortunately). Still the discomfort was there and I did not the energy to do anything else but sleep.

Its been disappointing because I really had things to do. Places to go. People to see. Instead I was stuck sleeping 12 straight hours. While it sounds great, I woke up even more tired the next day.

I was not a happy camper.

My co-workers have been sympathetic to my pain. They have increased their water intake by 3-fold. While I am glad to promote such a healthy life style for them, I don’t believe the cost of pain was worth it.

Still, work is going well. I have been acclimating myself to office work (new to me). It is a whole different style of work. The fact that I can go to the bathroom whenever I need to has been a major plus. I hope it helps with this rocky problem I have been having.

Hug a pony my friends.

Just a stone’s throw.

I have not had a chance to write here in the past few days due to a medical complication. I managed to survive but it was not an easy ride. On this past Monday I was at work when I felt a slight pain at my side and the need to rush to the restroom. I sprinted (gently) to the room only to have the pain increase. I did my business and left feeling only slightly better. As I walked out of the room I was hit with some of the worse ( at this time) pain I had ever felt in my life.

I have had a kidney stone in the past. It was not a pleasant experience and I did not expect to repeat the performance. My colleges at work were extremely helpful and watched over me for about an hour until I could pull myself up off the floor. I was curled in the fetal position as I whimpered in pain. A completely helpless feeling.

I hate that.

I was driven home and crawled into bed on a heating pad. I was feeling better and could move around. I took it easy the rest of the day. And then the night came.

And also the pain.

I spent most of the night on the floor pleading with God asking for help. My cries of pain and agony woke my dearest wife. She sat helpless to help me as there was nothing she could do as this stone of great pain ripped through my body. When you have a kidney stone, you just try to find a position that relieves the pain some. Anything will help.

Hour upon hour passed until the dawn broke. Still the pain lasted. I sat on a heating pad for most of the day and drank as much water as I could. Pain came and went throughout the day but the evening came brought some relief. I had not seen the stone but I had hoped it passed. I ate some dinner (first real food I had eating besides a few small snacks). I felt well enough to hop on a video game and play with some friends. I had not been playing with them too long when once again I was struck with pain that overwhelmed the body.

Sweat and tears ran down my body. The agony had doubled and now there is no relief in sight. The hardest part is the fact there is no end. It is just constant pain. If it came in waves or if you could get a break (like I did during the daytime) I could have handled it much better. I have a pretty high pain tolerance but this broke me. I could not find relief. As a fever took hold of me, I stepped into the shower to cool my body and to help hydrate myself. Cool water washed over me, cooling me. it brought the pain down some. Some was the best I got.

Hour upon hour of straight agony is too much for anyone. I would not wish this upon my worse enemy. My body could not keep up with the pain. I threw everything I had eaten up in. Nausea washed over me. My stomach twisted with the rest of my body. No medication would stay down. Water that was drank would come up an hour later. I pushed and pushed trying, willing, pleading for the stone to move. Only one thing met me after each try.

More pain. More twisting.

Morning broke as I managed to grab about 20 min of restless sleep. After 12 straight hours of pain you would have hoped I would have passed out. I came to the realization that I would not be able to pass this without help. My wife and I went and dropped my daughters off with a friend. We then rushed to the ER. Agony was still my bedfellow as I was admitted. They gave me some heavy duty narcotics which, unfortunately, did not seem as heavy duty as they made them out to be.

And then the tests and scans came.

More meds and waiting followed.

After about 6 hours of being there, the doctor told me that I had mostly passed the stone and I was in the last stages of the process. She prescribed more meds for pain and to help push things along.

About an hour later I was the parent to a brand new kidney stone. I will never be able to truly put into words how painful and helpless it was. I did manage one picture (with a pony of course) that I will share. I hope you all have had a better time than I have this week. I will now go rest a body that is sore with muscles that should not be sore.

Hug a pony my friends. I now await my hospital bills…..

CR300xQVAAAglMi

The weekender

Just a quick update for the weekend.

I want to thank everyone who has been sending me pony links. I have been going through each one and I drool over them every time. I have actually been working with a 3d modeling program to try and 3d print my own pony. The results are better than what I had first anticipated but I have a ways to go.

I have been sick over the past few days (even taking a day off of work *gasp) and have been trying to recover. My body seems adamant to kill me so I have to put up the usual fight.

I do hope to have some big news soon but until it gets confirmed you will just have to wait along side me.

Until next time, hug a pony my friends.

Weary traveler

I have worked a lot this past 3 weeks. I clocked over a hundred hours last pay period (2 weeks). I am on track this week for another 50 hours. Working this much always puts my body into shock and I usually get sick. Last night I was running a fever. I went to bed in bad mood. 

I slept. 

A long time.

I didn’t have to open the next morning so I could sleep in late. I was not expecting to sleep almost 9 hours. I woke to myself feeling a lot better.

Sometimes, we just need to sleep.

Just rest.

Snuggle with a pony my friends.

image

Mini post!

I have a mini post today as I have completed a very long week at work (yes, in retail our weeks are different from yours as this thing you call the weekend just means we are busier).

As it so happens, like always, life is coming down hard on me and iis making it difficult to post. My wife has been sick and with the incredibly busy week at work, I have not had a chance to get one of the post I have been meaning to get out complete. Fear not though, I will be back and hopefully in greater numbers.

Hug a pony my friends.  Here is a picture for your amusement.

image

Storms on the horizon.

A storm of despair is brewing for me at work. Hours cut, budgets slashed, everyone in crisis mode. My strength is going to be tested. I will need my family dearly, and my plushies close. I fear that this will be a bad time. I look at this though with some hope as I can see this one coming. The storms I can prepare for are always easier for me. I work hard at improving myself and I am doing better at dealing with the ones that pop up. I have also looked into changing my horizons. Those far off dreams that seem out of reach in my mind, are now not so far. Touching that glimpse of greatness that I can be has been a tremendous encouragement for me.

I spent a good 20 minutes with my Big Shy plush yesterday after work. It still amazes me that it can stem off headaches and calm me down. Some people have told me how strange it is, but my response is still the same. If it works, but looks strange, why would you care. It helps me and that is all that matters.

Hug a pony my friends.