Our Lives – Robbed By CFS/ME and Fibromyalgia March 2, 2010
Posted by coolbeansg in : CFS/ME , add a commentHi everyone,
Thanks for visiting my page. I knew nothing at all about using a site like this one, or blogging, or any of this kind of stuff, so it’s just been trial and error etc. But I see that many of you have posted a bit about yourselves on your pages or in blogs, so I will try to do the same. I’m not sure yet if it will be posted in a blog or on my page, but either way, we’ll get it done somehow.
For nearly 30 years I have been married to Garry, who has a very severe case of CFS and Fibromyalgia. But when we got married back in 1980, he hadn’t been diagnosed yet, and was just finishing up his last three months in the US Air Force as a Weapons Control Specialist Radar Technician who repaired F4 and F5 fighter jets. In other words, it was his job to make sure everything was working properly and that the bullets and missiles hit the enemy’s airplanes. I realized early on that he wasn’t quite as healthy as the average person (or most people) but it didn’t seem like it was anything to really be too concerned about at the time. However, shortly after we had met each other, Garry (who was living with his parents) had something happen to him that certainly was quite unusual. One day when he woke up, he couldn’t get himself out of bed, because he was too weak and just couldn’t muster up enough strength to do it, almost as if he was paralyzed. I lived a few miles away from him at the time and was finishing up my senior year in high school. So since he wasn’t able to get up, he called for his dad who was in the kitchen. Once his dad came into the room, he tried to help Garry up, but to no avail. So his dad then called a friend who came over and helped lift Garry up out of the bed, and they carried him to the car, and took him to the hospital at the air force base. I don’t know about anyone else’s experiences in an air force hospital, but this particular one was terrible.
After some tests were run, even though Garry was too weak to get up and too sick to function or do anything, they told him what many CFS patients have heard over & over again – that there is “nothing wrong with you.” They also “accused” him of trying to get out of work, and sent him home the next day. I don’t remember what happened next because I wasn’t informed by his parents. But several days later, he seemed to be fine, and was back at work (although not as strong and healthy as he would’ve liked). From that point on, his health seemed okay, and we continued seeing each other, and later became engaged.
After we were married, Garry finished his time in the air force and had an honorable discharge, and then got a job testing, building, and programming computers. Over the next few years, he became a computer expert in computer hardware as well as in the software and programming. He used to fix people’s computers all the time, (on a voluntary basis and without charging them) and he also fixed their software problems as well. He also became very involved in a church, and gave of himself, his services, and his talents. He not only was their computer guy who took care of any computer issues they had, but he also took care of their sound system and electronics etc. Something else he did for them was played piano, and often led the singing for the services. He also played piano for their choir, and was in one of their bands that traveled around and played in other churches.
So we were extremely busy (usually every evening of the week) helping out in the church. I told Garry that I felt he was extending himself a bit too far, but he felt that it was okay since he was doing it to help others. This went on for years, and then his health problems started to manifest themselves. But he kept pushing himself and pushing himself because he felt that it was the right thing to do. You know how dedicated people are, and how they have an attitude that says “I’m not going to let my condition slow me down” right? Well, that’s exactly what they expected from him, and so that’s what he gave them. He just kept trying his best and kept helping them out when he really should have been resting. However neither of us realized at the time that he was actually harming himself by simply working hard and helping others
I was 18 and he was 22, and the church taught that sacrificing our time and energy to help others was the right thing to do, that our help was needed, and that you couldn’t ever go wrong by helping others. Well, these principles are basically correct, except for one very important thing that they failed to ever mention or acknowledge, and that is, that if you don’t take care of yourself or your own health, pretty soon you won’t be able to help anyone else either. This goes without saying of course, and is basic common sense, but unfortunately in this particular group, they were so big on “sacrificing your time and energy” for the sake of others that they caused you to feel like you were “missing the boat” as they say, unless you were sacrificing constantly. They taught their people to “put yourself last, and others needs ahead of your own” so much, that we were made to actually feel guilty if we considered our own needs at all. It’s almost as if it was wrong for us to take care of ourselves (which of course is ridiculous) and terribly unbalanced. The people in the church would say things like “Be strong, don’t give up.” They made Garry feel that he couldn’t say no, and that if he didn’t continue doing all this voluntary work, he wasn’t doing the right thing, and they made us feel guilty.
None of us realized that he had a serious health condition, and so he basically became trapped to where he not only was being pushed to do more than his body could handle, and to where he didn’t feel he could say “no” but to where he was completely destroying his health. However, pretty soon it started to become evident. He began having instances where he would suddenly fall down due to severe weakness. Sometimes he’d fall down and then shake like a leaf, as if he was having a seizure of some sort. As it turned out, he was experiencing Hypoglycemia symptoms (low blood sugar) but the doctors and other people said it could be controlled with diet. Well, I made sure to follow the guidelines for the diet, but he still continued to have the hypoglycemia episodes and falls etc. almost as if he was going into insulin shock. I now know that Hypoglycemia symptoms are one of the signs of adrenal gland problems.
To make a long story short(er) it finally got to the point where he could no longer even get out of bed to use the bathroom (much less go to work). This was in 1989, (after being married and working a job and helping out in the church for nine years), and ever since then he hasn’t been able to work any kind of steady job at all – not even a desk job. When he tried to get up, he’d fall down onto the floor, and so I had to help him up and hold him up and walk him to the bathroom and then back to the bed, even though the bathroom was only two to three feet away from the bed. It was horrible because he couldn’t do anything. He was bedridden! He was completely disabled. Right about this time, the company he worked for started laying everyone off because they decided to ship their company overseas. So he didn’t receive any benefits of any kind. He also received his diagnosis of CFS, along with Fibromyalgia a few months later, but of course, there wasn’t anything they could do for him other than treat some of the symptoms, which really didn’t seem to help much at all, not to mention the fact that most doctors knew nothing about it, and thought he was crazy or a malingerer trying to get out of work.
Once we realized that he wasn’t getting any better, I applied for Social Security Disability for him, which unfortunately took over a year and a half to finally get approved for and receive. Since the Social Security Disability process took so long, we lost our only home and were forced into bankruptcy and had to move in with a friend. I tried working a part time job for a while, but it didn’t work out because Garry was so sick and weak, that he needed me to stay home to take care of him. So we were forced to live on food stamps and welfare, but the welfare check was so small, that it wouldn’t even cover the rent for a single rental in the whole town (or any other nearby towns or cities) not to mention the utilities. But if it weren’t for the small welfare check, our car would have been repossessed, and so we appreciated it greatly. By this time we had two little girls, who were now 4 and 7. When we planned to have children, and the girls were born, we had absolutely no idea that Garry’s health was going to go down like it did, and we certainly didn’t expect him to become completely and totally disabled, let alone, bedridden.
Thanks for visiting my page. I knew nothing at all about using a site like this one, or blogging, or any of this kind of stuff, so it’s just been trial and error etc. But I see that many of you have posted a bit about yourselves on your pages, so I will do the same.
To say it was extremely devastating for him would be a tremendous understatement, as it was extremely depressing and sad for both of us, and even for the girls. In a sense, they lost their daddy, and I lost my husband, and it was very difficult to see him suffering so much. I remember several times while I was working part time, coming home and finding my husband lying there on the floor, unable to get up because he had tried to get himself a drink or a snack, and ended up falling onto the floor due to the severe weakness he was experiencing. He also was experiencing excruciating pain in his shoulders, neck, and upper and lower back, and his shoulders were locking up on him.
So I soon became his full time caregiver along with being a full time mom and also trying to fulfill their father’s role in their lives. I was very relieved that I got to stay home to take care of them, rather than go out and work another job outside the home, and I was also very thankful for our friend who let us stay with him for quite a while until the Social Security Disability came through and we could afford to rent a place of our own. Garry also experienced mounds of guilt because he could no longer provide for the family. Most men get their fulfillment by working their jobs, and if they have a family, but can’t work, they often feel like a complete failure because they cannot do their job. This was far beyond completely devastating and heart wrenching for him. Not only was he unable to do any kind of work, but he was also unable to socialize at all, or even play with the girls. We couldn’t do anything for many of our anniversaries because he was too sick and too weak. One time we tried to go out to eat for one of our anniversaries, but by the time our food was served to us, he was too sick and weak to stay and eat, and so we had to bag up the food and quickly get home. (This has happened to us several times as a matter of fact).
So along with all of his physical pain and symptoms and along with all of the exhaustion, he had to battle with feeling completely worthless and useless, and of course, started battling with depression as a result, and unfortunately he still struggles with these feelings today, especially when he is so sick that all he can do is lay there and pray and wish that he felt better. He’ll be too sick to talk, too sick to watch TV (even while laying on the couch), too sick to eat, too sick to use his computer (which we setup for him to use while laying on the couch because he’s not able to sit up for more than a few minutes at a time). Can you blame the poor guy for being depressed? Certainly not! Who wouldn’t be? After all he was only 32 years old. I remember many nights when he was in tears, and where I had to hold him in bed and try to comfort him because he was in so much physical and emotional pain, and would shake uncontrollably, and sometimes even had convulsions. And yet there are idiots out there who actually think it’s all in the mind, and that they can do things if they really want to.
I wish they could’ve seen the many times that I helped my husband get ready for work, and then on his way to the front door, he involuntarily collapsed onto the floor because his body was so sick and weak that he couldn’t even walk 10 feet!! I wish they could have seen the times that he fell onto the floor while on his way to the bathroom (when the bathroom was only a few feet away) or the times he fell onto the floor while I was at work, and he couldn’t get up and had to wait until I got home to help him up! I also wish that the so called health experts (who like to write articles claiming to understand CFS, and say it’s just a matter of nutrition and sleep) could watch him and see how much he struggles regardless of how much good food or vitamins he takes (or how much sleep he gets). He used to be so bad that he had to sleep 20 – 23 hours a day because he was unable to stay awake!! I also wish that they could “feel” his physical pain that is so severe that the doctor has him on two narcotics (Morphine and Darvocet) along with a muscle relaxant to help ease the pain, and that they could see his swollen glands and other physical symptoms, and feel his emotional pain and inability to handle any stress, and watch him get all sweaty, and cold and clammy just from getting up to use the bathroom.
Another thing I often wish is that these people who claim to have CFS who are still able to work their jobs, and are still working out, and who have never had the swollen glands or fevers and sore throats or severe muscle pain, or problems remembering what they were just talking about – would stop thinking and claiming to have a bad case of the illness. Forgive me please for expressing some of my frustrations. Thank God for the Whittemore – Peterson Institute, and for the fact that they actually care enough about the illness and it’s sufferers to do all this research they’ve been doing. I congratulate them for their persistence and hard work, and for the discovery of the retrovirus, and I sincerely hope for the sake of all who suffer from this horrible illness, that they will be able to come up with some effective treatments very soon.
My husband is now 52, and has been suffering with this illness even before I met him when he was 22 (even though he wasn’t diagnosed until age 32). He also came extremely close to dying seven years after being diagnosed with the CFS and Fibromyalgia, due to a very severe case of congestive heart failure with an ejection fraction of only 12%, which is heart transplant level. They now have discovered that CFS can definitely cause (or lead to) heart problems and in some cases congestive heart failure where the heart is just too weak to function correctly and pump properly. He used to be a song writer, great singer, and piano player, and now he can barely even speak many times, and has a hard time breathing, and sometimes can’t even complete a sentence due to extreme exhaustion, brain fog and memory problems. He used to help people with their computer problems, help out in the church almost every single night, and pour his whole heart into whatever he did, and he more than deserves to receive treatment for this horrible devastating illness that has robbed him from enjoying his life for the last 30 years.
Our first grandchild is due in a few months, and I sure hope and pray that Garry can receive treatment before his body completely gives out on us, and he leaves this earth. After all, if he didn’t believe that God hasn’t given us the right to end our own lives, he surely would have given in at some point of weakness and despair, and done so, just so he could get some relief from all the physical and emotional pain that he’s been enduring all these years. Please, if anyone knows of any way that we can get him some of the treatment that he desperately needs from a specialist anywhere near the Phoenix area, please let me know. We would love to go to Reno, but he just can’t travel that far because he’s way too sick and is not able to. Thanks so much for taking the time to read his story, and please feel free to forward this on to anyone who you believe would benefit from reading it, or anyone who you would like to understand a little more about how devastating the illness can be. Also, if you know of a good CFS specialist who might consider coming to the Phoenix area to help him before his life ends from this devastating disease or from heart failure, please feel free to send this letter to them and ask them to contact me on me-cfscommunity.com. Thanks again.
Sincerely,
Sandy Cooley