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...
Greetings my (hope to be) new friends. I am new here on DS and wanted to introduce myself. I found DS while searching (desperately) for a support group for those of us who suffer from CFS/ME/SEID/whatever they want to call it next week. The last year has been a true challenge for me. I work full time right now, but I missed almost two months of work over the CFS issues, but have no idea how to talk to my doc (FNP) about it. I brought it up at my physical in September, but we didn't really talk about it. I've set an appointment this Friday to talk about that and nothing else with her. I hope it's a productive talk.
Meantime, I am tired, hurting, and well, you all know how it is. I am grateful to finally find a group of people that understand what it means. I have been trying to explain it to my husband, but he just doesn't get it. Shocker, right? He tries to make me feel better by telling me it's not that bad, but that doesn't help, as you know.
So thank you for taking the time to read my rambling rant/introduction. I hope I can help some of you even as you help me.
Meantime, I am tired, hurting, and well, you all know how it is. I am grateful to finally find a group of people that understand what it means. I have been trying to explain it to my husband, but he just doesn't get it. Shocker, right? He tries to make me feel better by telling me it's not that bad, but that doesn't help, as you know.
So thank you for taking the time to read my rambling rant/introduction. I hope I can help some of you even as you help me.
I agree with triunfadora, he's probably in denial. But YOU have nothing to feel guilty about. Did you decide to have this illness? No? Well then, it's not 'your fault'. And if I may be so bold, you can't hide what this illness is doing to you from him -- TELL him the effects of the couch cushion, last night and today. If he pull the long-suffering act, I give you my permission to be angry and tell him I DON'T LIKE THIS ANY BETTER THAN YOU DO!! IT'S REAL AND IT'S WITH ME *EVERY* *SINGLE* (insert vulgarity here if necessary) *DAY*!! YOU THINK THIS IS AN INCONVENIENCE FOR YOU??? LET'S TRADE; THEN YOU TELL ME IF IT'S REAL OR NOT!!
As I man, I can say that the odds are quite high that some honest anger from you will wake him up. (Of course, then you'll need a nap...)
HTH,
Jack
On the other side, wow, I am so delighted for you that your MD gets it and is really in tune with the treatments for CFS, etc... This is great news and I join you in your optimism. Just be careful, Don't over - do. And, if you continue to feel that you cannot work, you may need to go on temporary disability for a time. It's not the end of the world, but it may allow you some needed time to rest more deeply during your treatment. IT's something to consider. I know how hard it is to consider leaving work. We've all had to do it and it is a very difficult, but forced decision. I hope you are not forced into it, but can recover enough to continue working. Have you thought about working part-time? Anyway, good luck to you JC and keep us posted. And you are right, the treatments are not silver bullets and they don't work immediately, so patience is in order. A tall order, but..... Good luck and healing hugs to you....