Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
If I dare speak this to another human being I feel like I am setting myself up for a fall. Not talking about it, however, is equally frustrating and scary. My stomach is doing flip flops and it is empty because I don't have the strength to get up and fix myself something to eat.
I have been getting pounded these last couple of days at work. I was off Monday and Tuesday and went back to work Wednesday. Wednesday felt like I was never off. I was pushing myself to do the bare minimum. Thursday was even worse than Wednesday. Everyday I wanted to call off and rest but knowing we needed the money was my only motivation. I have been walking down the halls going back to the desk and literally had to tell myself out loud, " Come on. You can do it. You are almost there."
I can't work three days in a row anymore. It's too hard on my body. But, nobody knows this but me. I need my job. My salary is the one that makes life keep going for my family.
I have heard a number of things in recent days. I have heard that the only reason I am sick is because I keep claiming the sickness and talking about it. What else am I supposed to say when I can not accomplish simple tasks and I am asked why?
My parents think I should quit my job and apply for government disability but Christmas is coming up and my income will ensure things go the way I want them to.
I feel like I am killing myself. All I can do is work and lay in the bed. My house is a mess. I am supposed to be taking care of some important business right now but I can't do anything but lay in the bed.
I have a plan. To work full time until after Christmas and then cut down to part-time. Save my income tax refund for the next two years and then live off of that money until disability kicks in. It's a good plan but my body is not cooperating. I don't know what to do.
I live paycheck to paycheck. I know it is not the smartest thing to do but I ended up on that road anyway. My children are children. They don't understand the gravity of what is going on. I am confused, lost, alone.... and scared.
My body is turning on me and becoming my enemy. It is not following the plan and I don't know what my next move is. I see the rheumatologist next month and an endocrinologist in December. I went to the doctor last week and he put me on Inderal for elevated pulse. I complained about being tired and he checked my lungs for the first time. He said my lung sounds were diminished at the base. I had pneumonia three years ago when I was pregnant with my twins. It was a bad case and took me six months and lengthy antibiotic treatment to get over it but I knew my lungs were never the same. I get short of breath very easily but I always push ahead. So now, I have an inhaler. He ran labs and they all came back normal. I figured they would. That makes me feel like maybe I am crazy. Maybe this is all in my head.
Since my dx is so new I don't know what the road ahead looks like. I guess some advice from someone with fibro and chronic fatigue syndrome would be great. Someone who has been down this road of decision making and knows where it leads.
Thanks for any and all help.
I have been getting pounded these last couple of days at work. I was off Monday and Tuesday and went back to work Wednesday. Wednesday felt like I was never off. I was pushing myself to do the bare minimum. Thursday was even worse than Wednesday. Everyday I wanted to call off and rest but knowing we needed the money was my only motivation. I have been walking down the halls going back to the desk and literally had to tell myself out loud, " Come on. You can do it. You are almost there."
I can't work three days in a row anymore. It's too hard on my body. But, nobody knows this but me. I need my job. My salary is the one that makes life keep going for my family.
I have heard a number of things in recent days. I have heard that the only reason I am sick is because I keep claiming the sickness and talking about it. What else am I supposed to say when I can not accomplish simple tasks and I am asked why?
My parents think I should quit my job and apply for government disability but Christmas is coming up and my income will ensure things go the way I want them to.
I feel like I am killing myself. All I can do is work and lay in the bed. My house is a mess. I am supposed to be taking care of some important business right now but I can't do anything but lay in the bed.
I have a plan. To work full time until after Christmas and then cut down to part-time. Save my income tax refund for the next two years and then live off of that money until disability kicks in. It's a good plan but my body is not cooperating. I don't know what to do.
I live paycheck to paycheck. I know it is not the smartest thing to do but I ended up on that road anyway. My children are children. They don't understand the gravity of what is going on. I am confused, lost, alone.... and scared.
My body is turning on me and becoming my enemy. It is not following the plan and I don't know what my next move is. I see the rheumatologist next month and an endocrinologist in December. I went to the doctor last week and he put me on Inderal for elevated pulse. I complained about being tired and he checked my lungs for the first time. He said my lung sounds were diminished at the base. I had pneumonia three years ago when I was pregnant with my twins. It was a bad case and took me six months and lengthy antibiotic treatment to get over it but I knew my lungs were never the same. I get short of breath very easily but I always push ahead. So now, I have an inhaler. He ran labs and they all came back normal. I figured they would. That makes me feel like maybe I am crazy. Maybe this is all in my head.
Since my dx is so new I don't know what the road ahead looks like. I guess some advice from someone with fibro and chronic fatigue syndrome would be great. Someone who has been down this road of decision making and knows where it leads.
Thanks for any and all help.
I pushed myself to work for nearly a year after first being diagnosed and that year was part-time. The hours were still too much in hindsight and I am one of those many people who look back and wish I had cut down more, earlier. My work finally told me to cut back more and I had basically six months off. That has helped tremendously. I would suggest re-thinking your working until after xmas. Work is very stressful, more than you may think. I only know now after going back to work that it takes so much from me. I really can't believe I managed to work as much as I did.
Believe me, your health is more important and think that if you stop earlier than planned you could recover sooner than if you push yourself at the moment.
I understand your problem here. It's one many of us have had to face. Can we work? Is it gonna kill us? How do we decide?? Well, the answer is going to be different depending on who you talk to. If I might make a suggestion:
You seem to have a plan of working for a certain amount of time and then applying for disability. May I suggest that you apply for disability before you end up quitting work because your body has given out! Had I known what illness I had, and that bed rest was what was needed, I would have done it!!
I made it on to SSD and am living on that now. It took me 10 months to get on, so the sooner you apply, the better. The process takes time!! I was on state disability while I was waiting, so there was really no break in some kind of payment to help us live. For this, I am most thankful.
Try to think ahead, just a bit. Getting started on applying for SSD is something you can do now, in case the illness sneaks up on you and you're forced to quit your job.
I wish you the best! We're here to support you. You are not facing these things alone!
Forget your Xmas plan, you may not be able to attend, it's now all about you and CFS. The first 3 years are the hardest. Hopefully your parents can help until disability is in effect, and hopefully you have private disability insurance.
I kept pushing myself even before my diagnosis with work, exercise and servere juicing.....I didn't know it at the time but I became worse for every energy expenditure, especially talking.
"The only reason you are sick is because you want it"...sounds like my mother who had a vested interest in me staying well to take care of her. Absolute BS. Would anyone choose this illness over being healthy? Yes, we don't want to have a life anymore LOL!
Your body is sick, you will not be able to overcome it with your mind for long. I keep having to learn this again and again. Listen to your body, it will tell you what it needs.
You need to see a good CFS doc, rare but you can fly to them and worth it when you are so early on with this.
Hollie
Get a lawyer. Maybe even now. Ask what you should be doing to build your case. Remember that start to finish you are most likely looking at a good 18 months without income; so see what you will do while that is happening. Live with parents? Get help with the kids? (ss will wonder why you can care for your kids but not work) See if you qualify for SSI.... there's a lot to this. I'm not at all trying to discourage you, just making sure you know what you are up against so you can begin to plan.
Oh and when you see your docs - be sure they are noting all you are telling them for symptoms. When they go to fill out ssdi paperwork they won't remember what you told them and they will need to go by their own notes. In fact it might help you both if you tell them you may be going for ssdi and could they please take lots of notes... Wishing you all the best. Hope endo can help!