Hi there.
I was diagnosed in 1998. I am 45. I went to my dr with very similar symptoms. I thought originally I had Strep Throat, as it felt like I was swallowing glass. The symptoms eventially subsided, some. I was going through a stressful time. When the symptoms persisted and came back I was tested for Epstine Barr. Ok I am 45 and have Mono? With that I understood that this would take some time to get over and was viral and could reoccur. I resumed my daily routine the best I could, however, shortly after rising I would feel like I already had done a full day. I have always been a A type personally and often doing a lot of things at the same time, yet I could barely finish what I started. I became frustrated. I finally could no longer accept this modified way of life. I too was prescibed Provigil which works, however to get this approved with some insurance companies is a real HASSLE. It has been a point of contentsion and addition of stress which I found to be a trigger. For awhile my symptoms went into remission, returning in 2001 (another stress related event) and off and on since. I went to chiro, acupuncture and massage, physical therapy, you name it, again symptoms subsiding yet coming back. You can feel when the are coming. And then you just tence up because you know it is going to be a long haul, and you were just feeling better. I would love to know what it feels like to be 100% again? Last Jan (09), I was laid off. Since then, I have been attending school, which has been very difficult cognitively as around 2-3pm, I hit a wall, I cannot think, I cannot process any more information. So, without being able to control what time of day classes are offered, I had a difficult time asking for assistance or allowances for my illness based on the lack of understandind of CFS and the negative association of being considered LAZY. I was able to decrease my class load by a class, which was still more than a full time job for me to complete. Somedays I just want to shut off. I am so tired. I cannot sleep at night. I suffer from anxiety about the next day, and the fear of not waking up feeling like I slept at all. I take Ambien to sleep. And I too had issues with weight gain, I would assume related to the stress and sleep deprivation. I started taking Adderall to assist with my cognitive issues for school, and that helps but does not address the same chemical functions as the Provigal, which is still and issue getting approved with insurance, so against my dr's advice I am not taking that med currently. I cannot medicate after the morning, as I do not want to further challenge my sleep. I have constant headaches, which I take pain medication for. I started taking suppliments, including D3, C and Mag/Cal. These have helped. Being unemployed I was able to lay in the sun just about everyday during the summer, which was beneficial (not to my skin) but to my overall depression, allowed me to rest and collect Vit D. I also started to work out, for one hour 3x's a week doing pilates mat class at a local gym. This allowed me to drop 15 lbs over the last year. I found this also helped me with sleep issues, and improved my focus some. However, I regognize this is easier said than done. The littlest things can trigger a negative result. I have been feeling GREAT and then wham, I cleaned the house, worked out and did laundry, now I am down for days...my friends never see me. It is a huge stress to get my daughter to outside activities (she is 15) and she just hates to ask. So now my illness is affecting her. She wonders if it is ok to ask, will it stress me out? When you are constantly tired, it is like poking a bear...Last week I was offered a job, a bit of an apprentice position, which will require A LOT of training FAST. I was offered this because of my past professional experience with the manager, now I cannot sleep. I fear I will disappoint them, not be able to take in all this info, fear of working 40 + hours a week, for LESS than what unemployment pays. How can I do this as a single mother? The experience in this economy out weighs the symptoms? This is the 1st position I have been offered in a year...needless to say, from the day I was offered this job last week, I have been in crisis, not able to function. I am so fearful taking this job is like shooting myself in the foot. I applied for disability last year and never completed the paper work (which was so tedious, and felt like I was defeated before I began) so I was denied. I really feel like CFS is a DISABILITY, yet noboby will ackowledge it. My life has been drastically changed. I want it back! I hate taking a handful of meds and suppliments daily just to get by. I guess my advice to you would be to look at some additional medications. I would enlist husband, family and friends to help and learn more about your illness. Ask for help. Understand it is ok if the beds aren't made. Pre-make dinners in advance and freeze. I know you are used to doing more, but you will have to learn that a lot will not happen and that is ok. Rest when you can and learn to say no when you are feeling ill, it is your body telling you something.
