the struggle with summer heat and having a illness

Summer time for me is the worst time of the year. Since 2012 I have had almost mental and complete break downs from mid July to mid August. I used to be able to handle the heat. Working in retail for thirteen years I would bring in karts. I was the only day time bag boy for many of those years.

But when I turn thirty my body begin to slowly change. I begin to notice I was having mental break downs. I could not handle the heat like I used to.

Then something else happen. I found out I had fibro. I found out there was a reason for my mental breakdowns and why I was hurting all the time and feeling like I had a sun burn that never went away and why I was hurting so bad I was in tears.

Getting fibro did help a lot with the question I wanted answer for. But it also caused more problems. I begin to learn that I had to changed my whole life style. What I was used to doing I could not do anymore. I had to learn to relive all over again.

During the fall, winter and spring my pain is not as bad as it is in the summer time. Don’t get me wrong I still have really bad pain and I still struggle all the time but there is something about the heat that kills the body more.

On a normal day I used to be able to work outside in the heat. But now even five minutes is over doing it. When you have an illness and you have to reexamine your life and learn to live again, you begin to notice things like heat.

You also begin to notice how it can cause stress levels to rise. Heat is already bad enough but when you add an illness on top of that it becomes hell on earth to even live during that time of the year.

 

What is on my mind

This might be kind of long but I need to get a few things off my chest. As most know I battle with fibromyalgia. Found out about it two years next month. Before I found out about I was very angry inside.

I was the type of Christian who would battle people just to get my ego going. I would fight and I would tell people off and I would be so bitter inside. I was mad cause people all around me where getting help.

Before I found out about my fibro I could not understand what was always happing to me. I would get in a state of anger and pain. I would feel like my flesh was being ripped off my body. I felt hot all over all the time and I was aching all over. I got so used to it though that I would sometimes ignore it until small out burst would happen. You know the old saying, ‘Anger is like cancer.’ That saying was very true. I had become so bitter inside it was like cancer. Tipping away at my soul everyday.

I would get so up set cause I would notice my mom and wife we’re getting help all the time. I felt like I was drowning and I could not be saved. I became a bitter Christian as well. I would get so up set at others blessings and how for some everything became so easy while I was struggling. I could not understand why I felt that way. I was losing my very Faith in God.

I was going down a dark road. My marriage was falling apart. Then something amazing happen. I found out I had fibro. I found out what was wrong. I went from being bitter to being in pain all the time. I had to leave my job and what should of destroy me was really preparing me for something wonderful.

A year ago we move to another town. We help my father in law with his complex. Eight apartments. It is kind of out in the country. I was used to being a city boy. But here I was in the country. It took me a while to enjoy myself.

Last night God showed me how getting sick and moving out here helped save my marriage. I know what you are thinking, sickness? How so? Think about it for a second. Before it happen I was bitter inside. I was falling away from God. Now I am so happy and peaceful inside I have become a better husband for my wife. Getting fibro has helped saved my marriage.

What also helped save it was loving myself. Letting go of the let downs and being contend with who I am today. That is the key to happiness. Being content with who and where you are.

message board i created for people with fibro and mental illness

http://fibromyalgiatalk101.freeforums.net/

Where the help when you need it?

Where is the help when you need it? No where. Where is the people who are supposed to be the voice for those who need a f*** voice? No where. Where is the right I should have as an American and a human being? No where.

Back when I was a teenager I had such a strong Faith in who I was. I never cared about what others said about me. I knew I would amount to something great. Then the real world happen.

No one really prepared me for what I would go through. No one prepared me for the struggles I would face. The struggles of being told I was no good. No good at my job. No good at taking care of someone. No good at nothing. NOTHING!!!!

Thirteen years I spent working at a retail store. I went there every day no matter what I was going through. I spent 13 years of my life bagging people food. Cleaning bathrooms, bring in karts in the rain, heat, snow. Thirteen years of never having enough money to daily to make it on my own without help from mom and grandpa.

I spent those years also being told how I was no good. Not fast enough. Not doing this right or doing that right. Never being told hey you are doing a good job. Instead all I got was wright ups after wright ups after wright ups. I was in a work program called good will and you know what? I had a case manger that would come out to see how I was doing and never once did they help me. Instead they went off on me also.

In grade school I was put in the MR classes. I was thrown out of the world I was used to and put in another world. After that no one in the regular classes wanted to be my friend. I got used to that world. That became my world. I miss that world cause in some sense that was who I am.

My wife  is trying real hard to get me to have faith in my self. But what she does not grasp or understand is I try so hard. I give it all I have. But it is not enough. I am not enough. I feel like a failure as a husband cause I can’t give her more. She works now and I stay home. I stay home cause I am sick. I have fibro, depression and anxiety. I was told by a lawyer I can’t win. I am not sick enough. Not sick enough? What do I got to do to get people to have compassion for me and to understand my daily struggles. This world has been so cold to me. I just don’t know what to do anymore. I don’t know how to handle this stuff anymore.

Holidays

Holidays can be a hard time. I know. This thanksgiving I lost my grandpa. He’s only been gone for a week but it feels like years already. There are some days I see people with money buying stuff and I feel like a failure cause of the fibro and cause of my mental problems. I feel like I wish I could do more for my wife and buy her the world.

 

This year we are not fixing up our place. We just don’t feel in the Christmas spirit. Instead I just feel like staying in bed and sleeping away the rest of this damn year.

I want to believe in healing but I never see it happen. I hear about it all the time and I used to believe in it but lately I just feel like maybe it’s not for me. Some of my health issues go deeper then just fibro. Some I have had since birth. That is thirty three years of believing in something but nothing never happens. Instead I feel like a fool at times.

My depression seems to get worse during this time of the year as well. Any kind of issue sets me off so bad it takes a long time for me to clam down. I am ready for this year and the holidays to finally be over.

Daily Struggles

When I first found out about having fibro I did not know what to think. I just knew I was having really bad moments of pain and depression and anxiety so bad that it took hours to calm down. Plus I could sleep for hours and hours. But that all changed the day I found out about the fibro.

It has been over a year since I left my job. On a daily day I can have good days. Days when I hurt by they are not as bad. I can get a lot done mostly at night. But then there are days when I have body shakes and spasms real bad. I hurt all over. I feel like my head is going to blow up. I feel like I got the flu bug that won’t go away. Light hurts my head and eyes real bad. I can’t even get off the bed. My body hurts all over. I feel like I was in a car wreck plus was just doing eight hours of working out. I also feel like my body is on fire all over.

On those days all I can do is sleep. I feel like sometimes my wife does not understand. God bless her she really tries to understand but the truth is unless you are in shoes of someone who has this you can never fully understand. I went to the doctor one time and the doctor we went to told me he does not give out drugs. He looked at me like I was a pot head. Screw you dude. Do I look like a pot head? No I do not. I am just a man who in his early thirties who wish he could be the best he can be for his wife and family. But sadly it does not work that way.

One of my main struggles is I struggle with remember things. I can remember something’s but others I can not. Mostly when I am put on the spot.

Hello

This is the first time I have ever made a blog so bare with me for a second. Allow me to introduce myself. My name is Benjamin. I am thirty three years old. I live in Coweta, Oklahoma. I am married to a wonderful woman name Shallen. We got married back in 2012.

I decided to create this page cause I felt like I needed a voice. All my life I have battled with handicaps and learning issues. When I was two I had to go to speech programs cause I could barley speak good. Nobody but my mom, sister and grandma could really understand me.

I was held back in preschool cause of my motor skill issues and my speech problems. I went on to be in regular classes until third grade when I was put in LD classes as well. I stayed that way until fifth grade when I had taken a test to see where I was. The school system had a talk with my mom and pretty much told her that even if I stayed in regular classes by the time I would in High School I would be so far behind everyone I would drop out. So they felt like what was best for me was if I was put in the MR classes. So I was.

Before I go any further I wan to talk about that for just a second. Image if you will you are just eleven years old and just like the snap of a finger you went from in one world to being in a whole complete different world. A world in which you did not understand or could grasp why you we’re in there. That is what happen to me. Was pulled out my class from my old teacher and brought down stairs to this very small class. My life changed for ever that day.

When I was in 7th grade I went on to Junior high. There I was bulled all the time. Was told I could not even use the bathroom or I would die. I was beaten up everyday in PE class. Would come home with my glasses broken. I was so scared to go to school I would fake illness and would shake if my mom even made me go. My mom try to talk to the people in control but nothing happen. Even the PE teacher watched and laugh as I was bulled and beaten up. Finally a door open up for my mom and me to get out of that town we we’re living in and move back to Tulsa just twenty minutes from where I grew up.

My school life after that got better. I had my up and downs. Met a few girlfriends along the way. I gave my life to the Lord my senior year in Sept of 2000. During that time I was a loner type. Always had my headphones on and wearing black clothes and baggie clothes (a lot like how I am today lol). I was listing to slipknot wait and bleed when a girl name Holly approach me and told me God loved me. She spoke to me for a few seconds and ask me my name. I told her my name and she smiled and walked off. I did not think anything of it for two days. Then during lunch hour on the third day she approach me and asked me if wanted to join a Christian group with her. Now I was raised as a Christian. My mom raised my sister and me on her own with my family help and she raised us with the love of Christ in the household. My sister got married when I was just a preteen. My mom would make me go to church every Saturday as a teenager with my girlfriends and buddies. She then would drop us off for the nine clock dollar movie every weekend. It was the only way she could get me into church. So here Holly was asking me to join her and I decided why not. I did it cause I though she was cute. Not knowing just a few days later I would be giving my life to the Lord at a youth group at a church called Guts.

The night I gave my life to the Lord I remember sitting in youth and board out of my mind. Then I found out we had a guest speaker. This speaker was talking about his own struggles and how God saved him while he was high. I hung out with handicaps kids and stoner types. Even though I was not a stoner I understood what the guy was saying. I remember sitting there and he asked if anyone needs Christ be raise your hands. I felt lead to do that but I refuse to do it. Then all of a sudden a gust of wind came in and lifted my hand up. I was the only person to give my life to the Lord that night. I begin to change real fast. I begin to listen to Christian music and even brought the Bible with me.

My ex and I we’re in a work program during that year. We would leave and go to a goodwill store and was train in a classroom the last few hours of the school day. We had two teachers that year come into our lifes. Both ended up being youth pastor and helped me in my begin journey with the Lord. That year my life changed so much. It changed in another way I lost my father that year as well. I only knew him a short time when I met him when I was 14. He chose drugs and drinking over his own kids. I was at the funeral with my sister and ex BIL and I remember sitting there and there was a small group there cause he died a poor man death. He did not even have a tombstone or was imbombed cause he was so poor he could not afford it. I remember his biker friends on one side and my sister and BIL on the other and I was in the middle alone. It looked like it was about to rain. I told God I was not going to cry. Then right as the tears being to run down it begin to rain. Then I felt the wind holding me and I felt God whispering in my ear I was not alone. He was there holding me.

So as I said my life changed forever that year. One of the job coaches ended up helping me at the end of the summer get a job. I worked in my job for 13 years. I bag people food. Moved out on my own in 2002 cause my mom wanted me to learn to live on my own. I had many things happen to me over the course of those years. I was put down a lot in my job cause I was slow. Then in 2011 something wonderful happen. I met my wife Shallen.

We met in June of 2011 on Plenty of fish. Eleven months later we got married at a wonderful Christian coffee house called Holy Joe’s with our families and closet friends there.

The first month of our marriage was great. Then a month after we got married my wife had a bi polar attack which lead her to be in the mental hospital for two weeks. I had never seen her have an attack before that. I knew about her sickness but never imagine it would happen again cause the whole year we we’re engaged and dating she seemed normal. She held down a job and everything.

I also had a job. I worked in a retail store by our old apartment. I was the head bagger there from 01 until August of last year. But I will get to that here in a bit.

My wife was in the hospital like I said for two weeks and during that time I felt defeated in a way I never felt before. The second day she was in the hospital we we’re talking on the phone while I was on lunch and she felt so defeated and sad. She was not sure if I was real and our marriage was real and all kinds of sad things. I knew in my hearts of hearts this was an attack from Satan.

My mother in law called me up at work (she worked for the same company I did) and told me that Shallen had been court order into the hospital. At that time I was told there was a clean up by the beer area. Hot sauce was everywhere. I went to clean it. As I was cleaning I just started to cry. I called out to God and asked him what do I need to do? Right then a song came on the road at my store. Casting crowns courages came on. I felt the words hit me real deep. There I felt God like I never felt him before. He told me get up and to go over to her job and get her job saved and for three days during the lunch time he wanted me to fasted. So for the first time I really did what God told me to do.

God told me that a week later my wife would be coming home on the last day of my fasting. A week later she did. She did a full 360.

 After my wife got better the day after July 4 I was walking home from work for lunch. All I remember about that day was walking in and passing out as soon as I came in. I had gotten over heated. My wife called my job up and told them I would not be coming in for the rest of the day. They knew all that had happen to us the month before and how tired and warn out I really was and the next day was Friday and I was off on the weekends. So they told my wife they would see me on Monday and for me to rest. During that weekend my wife and I had a talk about maybe me taking some time off of work. I was worn out and I was depressed real bad and was battling anxiety and I was a complete mess. So on the following Monday I told my job I would be taking a month and a half off. I was going to the doctor to get a note and I needed a break from it all.

We did not know how we would be okay money wise but I did what I felt lead by the spirit to do. I took off for a month and a half. God did miracles for us during those six weeks. After that I got better. But my wife had another attack just a few days before Christmas and she was put in the hospital again during our first Christmas as a married couple.

She only stated in the hospital for a week that time. After that she was okay again and things got back to normal until March of 2013 when we had a big event hit us.

My mom’s ex called us up one evening and my mom was out of it. My mom lived just five minutes from us. I met my wife over there and we had to take my mom to the hospital. She had a mini stroke and ended up in the hospital for a week. There we also found out she had dementia. My mom at the time was working helping to take care of handicap people. Something she done my whole life. I had health issues of my own and was in the MR and LD classes my whole life. My mom was told she could not work every again. That meant she had to leave her apartment. We went and talk to our old land lords and they we’re going to give us this one two bedroom apartment. But each time it was time they keep lying to us. Finally we got the key to another two bedroom apartment. The night we got the keys and was told we could move in I was at work and it was around 10 at night and I only had an hour left of work and I got a call from my wife. My nephew who was 18 at the time had gotten his old GF pregnant and they had a daughter just four months before. Their daughter had rolled over and sids happen. We had to rush to the hospital. She was brain dead. I had to take a few more days away from work cause our complex only gave us three days to move. So during the night I would be caring boxes over there while going back and fourth to the hospital. During those three days my great niece passed away. So while dealing with that blow I also had to deal with that move. on the move day I moved for 12 hours got 4 hours of sleep and pulled a 9 hour shift. I was starting to lose it again. We try to get me help but cause of my insurance I could not get help. So we dropped my insurance and I only worked part time. Luckily my mom was able to get on SS. During that summer I had another break down during the same time and had to take another leave off of work. By that time we noticed something was up with my health. My wife had another attack and this time she had a health aid nurse come to our apartment to help her. For six months he would help her. He also was also a strong Christian and helped her spiritual. She keep obsession over demons but slowly that begin to change. She is now two years with out a bi polar attack. PTL

She started to get better but I did not. Last summer my health got so bad that we found out I had fibromyalgia. I keep feeling like someone was ripping off my skin and I was hurting and depressed. the night we found out about it I had a bad attack. I was at work and I felt sick to my stomach. I sat down for few minutes and it went away. an hour later it hit me again. This time my whole body lost it. I felt like I had been in a car wreck after working out for hours. I called my wife to come and get me. I could barley talk and walk. a few day later it hit me again and that was the last day I worked. the next day I quick. I could not do it anymore

Fast forward to April. My mom met a guy who is just like her and she is now staying with him and his family. My father in law owns a few apartments and we ended up move there. My wife, our dog and I moved there. I went from being a bag boy to now helping with apartments. I don’t work cause of my health. I am trying to get on SS. My wife gets it and works part time.

But anyways sorry this was so long but just wanted to let people know a little bit more about me. I am hoping to use this page to help talk about living with fibro and illness and handicap and being a Christian guy. Thanks for reading!!!!!