It was all very normal and typical. My husband had a full time job and I had a part time job while finishing my degree. We traveled all over the southern half of the USA. We even traveled internationally. We lived life to the fullest. Then in 2003 my husband became increasingly and alarming debilitated. We ran the gambit of doctors looking for answers. We saw Internists, Pulmonologist, Gastroenterologists, Endocrinologists, Immunologists, Oncologists, Cardiologists, Neuropsycologist, and finally we received the diagnosis we had by this time figured out. My husband had CFS/ME. We then went to see a specialist. The specialist told us that he "had one of the most severe case she had ever seen." Treatment was tweaked and we learned what our new normal was going to be.
While the gambit of doctors was being run. I saw my husband struggle with the day to day tasks we all take for granted. Walking to the kitchen, showering, sleeping, paying bills, and cooking for himself. Forget trying to go skiing, play volleyball, racquetball, and dancing. All the activities my husband loved where all snatched away from him. He now had to settle for just getting out of bed and being able to run and errand with me. He like so many CFS/ME patients was unable to work anymore. He was a reservist who got called back. It was while on active duty he came down with this illness. It took a very long time for him to be discharged from the military correctly and receive pay. We lost everything we had worked our whole lives for. We spent a long time grieving for the things we lost like our home, his job, my job that I had to quit to take care of him, and many friends who couldn't understand why we couldn't just go out to a movie anymore. I cried many days seeing my once outgoing, fearless husband come to terms with being forced onto a new path in life. I watched his dreams of going into space slip away. These where our darkest days.
This horrible illness did one thing for us. We grew stronger and closer in our relationship. We educated ourselves on CFS/ME to the point where I can now bring forth new treatment ideas to our doctors and have them try them on us. I learned how to cut threw government red tape and to NEVER give in or loose hope. I became as my husband called me his portable "brain" and "advocate". We had two sons. Since we are both home we are able to spend more time with them while they are young. These precious children keep my husband and I going.
After my second son was born I became increasing ill with strange symptoms. Symptoms eerily similar to my hubbies. I tried to claim it was all pregnancy related. After a year of more muscle fatigue, joint pain, random increased anxiety, and insomnia I knew in my heart what I was dealing with. My hubby knew before me. Together we ran the gambit of doctors but this time I was the one lying on those hard exam tables with the paper covers. I was no stranger to exams and testing. I had two previous back surgeries due to being born with a benign tumor on my spine. These tests where scarier. I was a new Mom. How would I handle two small active toddlers? How would this disease effect my body and ability to function? Most of all could our son get this. This summer I received my official diagnosis. Now we are two CFS/ME parents trying to figure out how to keep up with our very healthy children. .
You would think with my husband having this illness for 9 years now that I would know all the things I should be doing. Wrong! He tells me things to do but CFS effects me a bit differently so I am in that beginning learning curve. I try to find that invisible line we all have that says, "Pass me and you will be down for days." With two young children being a Mommy doesn't stop. So I push myself every day. Together the hubby and I are figuring out a schedule that works for us as parents. Also, through the help of one very loyal and loving friend we do have backup whenever we need it.
I thank you for those who read my personal story. I will attempt to post more on dealing with CFS/ME as a wife, caretaker, patient, and Mom. I would love to hear from other parents who have children and how they cope. I would also love to hear more tips on things to Do and Not Do as a newbie.
My Most Sincere Wishes for 2013 to bring better treatment, better understanding, and more research for this disease. Happy New Years Everyone!
While the gambit of doctors was being run. I saw my husband struggle with the day to day tasks we all take for granted. Walking to the kitchen, showering, sleeping, paying bills, and cooking for himself. Forget trying to go skiing, play volleyball, racquetball, and dancing. All the activities my husband loved where all snatched away from him. He now had to settle for just getting out of bed and being able to run and errand with me. He like so many CFS/ME patients was unable to work anymore. He was a reservist who got called back. It was while on active duty he came down with this illness. It took a very long time for him to be discharged from the military correctly and receive pay. We lost everything we had worked our whole lives for. We spent a long time grieving for the things we lost like our home, his job, my job that I had to quit to take care of him, and many friends who couldn't understand why we couldn't just go out to a movie anymore. I cried many days seeing my once outgoing, fearless husband come to terms with being forced onto a new path in life. I watched his dreams of going into space slip away. These where our darkest days.
This horrible illness did one thing for us. We grew stronger and closer in our relationship. We educated ourselves on CFS/ME to the point where I can now bring forth new treatment ideas to our doctors and have them try them on us. I learned how to cut threw government red tape and to NEVER give in or loose hope. I became as my husband called me his portable "brain" and "advocate". We had two sons. Since we are both home we are able to spend more time with them while they are young. These precious children keep my husband and I going.
After my second son was born I became increasing ill with strange symptoms. Symptoms eerily similar to my hubbies. I tried to claim it was all pregnancy related. After a year of more muscle fatigue, joint pain, random increased anxiety, and insomnia I knew in my heart what I was dealing with. My hubby knew before me. Together we ran the gambit of doctors but this time I was the one lying on those hard exam tables with the paper covers. I was no stranger to exams and testing. I had two previous back surgeries due to being born with a benign tumor on my spine. These tests where scarier. I was a new Mom. How would I handle two small active toddlers? How would this disease effect my body and ability to function? Most of all could our son get this. This summer I received my official diagnosis. Now we are two CFS/ME parents trying to figure out how to keep up with our very healthy children. .
You would think with my husband having this illness for 9 years now that I would know all the things I should be doing. Wrong! He tells me things to do but CFS effects me a bit differently so I am in that beginning learning curve. I try to find that invisible line we all have that says, "Pass me and you will be down for days." With two young children being a Mommy doesn't stop. So I push myself every day. Together the hubby and I are figuring out a schedule that works for us as parents. Also, through the help of one very loyal and loving friend we do have backup whenever we need it.
I thank you for those who read my personal story. I will attempt to post more on dealing with CFS/ME as a wife, caretaker, patient, and Mom. I would love to hear from other parents who have children and how they cope. I would also love to hear more tips on things to Do and Not Do as a newbie.
My Most Sincere Wishes for 2013 to bring better treatment, better understanding, and more research for this disease. Happy New Years Everyone!