Wow, my fibro is in full blown flare up mode, luckily I'm entering week 3 of working from home and have been pretty much able to compensate for my body's lack of co-operation. I've been finding it next to impossible to sleep...the night just drags on and on without even a hint of sleep. Or the flip side is that I've "slept" (so to speak) through the night, but wake up even more exhausted than when I went to bed. It's a horrible cycle to be in and I hope it will end soon. The one bright light is that I know at some point it WILL end and I'll start getting some rest, but in the meantime, I have to really be careful to not over extend myself, while sleep is scarce.
I've definitely had lots of time to read and catch up on just "me" time, which I'm finding is more and more necessary. I've gone most of my life putting others first and me last, however that doesn't work so well with fibromyalgia. It's more important than ever to keep myself focused and centered so that I have the energy and strength to be there for my family and loved ones. I guess you can find a blessing within any dark cloud, huh.
It is still hard though, to feel so isolated when you're not around others who are struggling with the disease. Once I get into a routine with my working from home, I really want to start up a face to face support group for others suffering from FMS. I know it would make a huge difference for me, so I can only postulate that it would do the same for others. It seems as though, there is a huge gap in terms of lack of support for family members of those of us who suffer from fibro. They go through it all day to day with us, but find it equally as hard to get any face to face support from other family members dealing with the same issues. Maybe that can be something I look at when setting up a support grp. Maybe we have a family members group run concurrently so that it becomes a family healing process....I don't know yet, but those are some of the ideas I'm thinking of.
Obviously I have a lot of thinking time at night so I have to be careful to not bite off more than I can chew. I've requested some information online, for starting local support groups, and I assume it will outline some of these same concerns and how others have dealt with them. In the past I would have seen going to a support group as a sign of weakness (shaking my head as I type), but now I see it in the exact opposite light. I think it takes strong, courageous person to walk into a room of strangers, and say "I need help"...hopefully I'll find a way to create a safe and welcoming environment for people to do just that. Nobody, regardless of whether you suffer from a chronic illness or not, can survive in a bubble all their own. It's important to ask for help when you need it, AND to lean on others when you can't do it alone. Through the process of learning to live WITH and not in spite of my disease, I have come to rely on others in a way that is not always what I would want in my "ideal" world, But thank god I have two guys in my life that are there for me day and night no matter what I need to help me. I'm not sure what I would do without them!
until next time...
hobbz
Sunday, October 26, 2008
Thursday, October 16, 2008
I'm still here
It has definitely been awhile since my last post. I'm almost through my first official week of working from home, and I can see the difference already. Monday I spent the entire day at home and felt great. Wednesday I had meetings all day and was at work for over 5 hours....I was exhausted, it was back to how I felt daily going to work and slogging it out. I'm so thankful that today, I was able to get up with my son and do a couple hours of work before taking him to school. The beautiful part was that when I got home from dropping him off, and my legs were killing me and I was drop dead tired, I simply went back to bed. Wow, what a concept. I slept for a few hours and then got up and did some work. It's all at my leisure and while my body is cooperating. Obviously I can't get out of set meetings, but most days won't be 5 hours long like yesterday. I am so incredibly thankful for this opportunity.
Other than that, I've noticed the last couple of weeks that my mind has been enveloped by the "fibro fog", and I absolutely hate it. It's like I'm 4 steps behind everyone else, and it makes me feel so dumb. I play an online computer game where we talk with each other on headsets...my fog got so bad a couple of nights that the group I was playing with insisted that I was drunk...and in all seriousness I was just plain old fogged out me....How depressing! Our weather has turned decidedly winter-like, so I'm hoping it's just my body adjusting to the new weather. "they" say that fibromyalgia isn't a progressive disease, but honestly sometimes I wonder. When you're in a never ending (seemingly) flare, it's hard to remember that this too shall pass.
Like Cinders mentioned in her last comment, it's my online fibro links/buddies that keep me feeling normal and sane. I too go through periods of self-doubt and fear that this is all in my head. However it only takes a quick conversation with those I live with, or to get online with those that know first hand to realize that this is a very REAL disease. Who would make this stuff up, anyways? It's just easy to lose sight of what's real when your life and symptoms are so nebulous and ever changing.
Until next time...here's wishing good health to all!
hobbz
Other than that, I've noticed the last couple of weeks that my mind has been enveloped by the "fibro fog", and I absolutely hate it. It's like I'm 4 steps behind everyone else, and it makes me feel so dumb. I play an online computer game where we talk with each other on headsets...my fog got so bad a couple of nights that the group I was playing with insisted that I was drunk...and in all seriousness I was just plain old fogged out me....How depressing! Our weather has turned decidedly winter-like, so I'm hoping it's just my body adjusting to the new weather. "they" say that fibromyalgia isn't a progressive disease, but honestly sometimes I wonder. When you're in a never ending (seemingly) flare, it's hard to remember that this too shall pass.
Like Cinders mentioned in her last comment, it's my online fibro links/buddies that keep me feeling normal and sane. I too go through periods of self-doubt and fear that this is all in my head. However it only takes a quick conversation with those I live with, or to get online with those that know first hand to realize that this is a very REAL disease. Who would make this stuff up, anyways? It's just easy to lose sight of what's real when your life and symptoms are so nebulous and ever changing.
Until next time...here's wishing good health to all!
hobbz
Sunday, October 5, 2008
5 more days
Only 5 more days of working in the hospital and then it will be working from home in my jammies...lol...I totally cannot wait. It's like a HUGE weight has been lifted off of my shoulders. I'm so confident that this is the right decision, it's not very often I have this level of peace with a big life altering decision. It's even to the point that it doesn't bother me when others (who don't understand) aren't supportive.
It's funny how people get stuck in a way of thinking about you, and even when you have changed they still see you as someone you were a long time ago. I'm not saying this with any judgement, because I've been guilty of it many times myself...I just find it interesting, is all. I've had comments like you don't want to leave work, because they'll forget who you are...in reference to the fact that I'm 38yrs old and my focus should be on career right now. If it weren't for fibromyalgia, that is where my focus would be...but in many respects I'm thankful that I've been forced to look at my life and how I view "success" in a different light. There are others who feel that I've set myself up for days of wallowing in pain and self pity, but honestly I don't see it happening. I have so many plans, and I will STILL be working, all that's changing is my ability to take care of my physical needs better....woot woot.
Only time will tell, if this has been the right decision, but in the end, it will only matter to me, my husband, and my son. Everybody else's opinion is simply that, an opinion. Going through this most difficult decision process has really opened my eyes to what's important in life, and who and what really matters to me, when you cut out all the bullshit. I know that peoples varied reactions are based out of fear, and ignorance and I have to just let that be what it is. It's not my job to make others feel ok about my decision, the only job I can take on is to help educate them on how it really is day to day, living with this disease, and hope that their awareness and understanding improves.
I know that both my husband and I have really felt better about how we feel about the disease when we read the comments that are posted...or the blogs that I have listed. It's allowed us to feel "normal" again, and not so isolated by this hellish disease. It takes away EVERYTHING that you have, but now we know that we are NOT alone and are thinking ISN'T distorted. What we are going through is normal and there are others out there that have the same struggles and understand our pain....without that knowledge and support I shudder to think where we'd be today????
thanks all!
hobbz
It's funny how people get stuck in a way of thinking about you, and even when you have changed they still see you as someone you were a long time ago. I'm not saying this with any judgement, because I've been guilty of it many times myself...I just find it interesting, is all. I've had comments like you don't want to leave work, because they'll forget who you are...in reference to the fact that I'm 38yrs old and my focus should be on career right now. If it weren't for fibromyalgia, that is where my focus would be...but in many respects I'm thankful that I've been forced to look at my life and how I view "success" in a different light. There are others who feel that I've set myself up for days of wallowing in pain and self pity, but honestly I don't see it happening. I have so many plans, and I will STILL be working, all that's changing is my ability to take care of my physical needs better....woot woot.
Only time will tell, if this has been the right decision, but in the end, it will only matter to me, my husband, and my son. Everybody else's opinion is simply that, an opinion. Going through this most difficult decision process has really opened my eyes to what's important in life, and who and what really matters to me, when you cut out all the bullshit. I know that peoples varied reactions are based out of fear, and ignorance and I have to just let that be what it is. It's not my job to make others feel ok about my decision, the only job I can take on is to help educate them on how it really is day to day, living with this disease, and hope that their awareness and understanding improves.
I know that both my husband and I have really felt better about how we feel about the disease when we read the comments that are posted...or the blogs that I have listed. It's allowed us to feel "normal" again, and not so isolated by this hellish disease. It takes away EVERYTHING that you have, but now we know that we are NOT alone and are thinking ISN'T distorted. What we are going through is normal and there are others out there that have the same struggles and understand our pain....without that knowledge and support I shudder to think where we'd be today????
thanks all!
hobbz
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