So here's the deal, I've written and re-written, and edited and re-written this stupid post several times at this point, and I'm having a really hard time getting my feelings down in words. As I've posted before my husband and I are in the middle of trying to decide whether or not I can feasibly stop working at this point and time. I firmly believe that I'm at a point where I can see the difference in the quality of life that I have when I'm working vs. not working, with fms. I have gradually over the past few years gone from working well over full-time hours, to now only working 30 hours a week. When I have time off the difference that it makes with my body is amazing. Not that I have more or less pain, fatigue, exhaustion,etc...but when I'm not working I have the time and freedom to take care of my own needs when I need to, and not to try and work through it because I have no other option.
Granted this is only a decision the my husband and I can make, but I have brought the topic up with several different people now, just to get their perspective. Sadly what ended up happening, is that I've found out that there are a few people out there that obviously don't get how much this disease affects not only my daily life, but those of my husband and son's too. I'm not sure why this bugs me so much, but it really really does.
I want so bad to communicate to people the devastation of this disease without being looked on as faking it....or be pitied because of it. When you are healthy you take for granted that those people closest to you will be there for you no matter what, but when you become sick, you really find out who will and will not stick by you. I'd like to say that it doesn't bother me what others think of me, but deep down inside it does, and I'll get over it. It's just another dynamic of being chronically ill that isn't talked about as much as the symptoms are. My husband and son are totally amazing and they both know exactly what fms looks like at home. I know that they would be just as greatful as me, if we found a way to make things work in our home without me working. When it comes down to it....their opinions are the only ones that really matter!
There's also this fuzzy line of how much of the impact of the disease do I share with people outside my immediate support system. I'm not ashamed of having fms and I have no problem being open and honest about my disease and the toll that it takes, but at the same time....one has to really pick and choose who to share this information with. Not all employers are supportive, not all friends and families know how to deal with such a big change in their loved one's life/health. I was diagnosed with this disease in may of 2005....well we moved to Alaska in August 2005 so really none of our immediate family has been around me much to see how my life has changed. And of course I shoot myself in the foot anyways, by trying to not let my disease impact others, so I try to "tough through" things, or say "everythings great" when it really isn't.
In that respect I'm just as much to blame as anyone.....this is so fricken huge and overwhelming right now. I know in my heart that what I need to do is quit working....but it isn't that easy and it's going to take some time to get to that point. So in the mean time I need to figure out a way to make all the different facets of my life mesh together....regardless of how outsiders see me or my family. But easier said than done.....hmmm i'll have to ponder this for a while