flare is waning

well my flare from hell is starting to ease up...but still I'm so sore from my muscles being so tense, that I feel like I was hit repeatedly by a mack truck. I had a few days of overwhelming exhaustion, where getting out of bed and taking care of my 9mo old seemed monumental. As all things, flares don't last forever and this one has eased up considerably...yay time!

I got an Rx for a muscle relaxant and that eased the tension in my muscles a great deal...I think from now on at the beginning of a flare I'm going to get on muscle relaxers right away with hopes on staving off the worst of the muscle pain.

I've been thinking of self-esteem/confidence a lot lately, and even chatted with some other fibro sufferers today about it. I find it rather interesting how deeply this aspect of my life is affected by my disease. We came to the conclusion today, that a lot of the low self-esteem has to do with the ongoing guilt that we feel. I feel guilty for not working, for not being there wholly for my kids...for taking away from my husband, for not being the person I used to, for having to cancel plans all the time....seriously this list could go on for pages. One chat friend noted that "guilt" should be listed under symptoms of fibromyalgia...hahahaha. But why this crazy self-esteem breaking guilt? For me, I think it's partly due to the inherent underlying belief in our society that one must be an over-achieving, workaholic, pta going parent or we are failing somehow. I've been the over-achiever...I've done the work several jobs until you drop...and did it ever make me a better person???? In my humble opinion...NO! Still somehow I feel the judgement of others in this respect on an almost daily basis. The well meant, however misguided comments, like...."oh I don't have time to be sick"..."if you were more active you would feel better"..."you were fine yesterday, therefore...."..."how come you have so many sick days"..."must be nice to stay in bed so much"...." i wish I could nap everyday"....these statements have that underlying doubt, that you just somehow are lazy or your're not putting in the same effort as everyone else. I'm the one that gives these statements power, by listening to them, but sometimes it's hard not to. I know my reality and I know how toast I am after a day of work...so much so that I can't even spend the evening with my family. I have a new "normal" now, and it involves taking care of myself so that the fibro doesn't take over. People can't see the disease or the disability so somehow it doesn't really exist to them...

On the flip side I contribute to this doubt by pretending that all is well, when talking to or spending time with family and friends. I've seen the uncomfortable looks and endured the stuttering, blundering responses...to my statements that today just isn't a good fibro day....so to save them the uncomfortableness of it...and more importantly to save me the frustration of not being understood or supported, it has somehow become easier to pretend that I'm fine. The reality is tho, that this is NOT the easier route for me...I do have fibro, and there isn't an hour a day...any day, where I'm not reminded of this by my body. I''m never pain free...I just have ok days and not so ok days...so I build up this unspoken resentment towards those I feel the need to act for. How F'd up is that? I'm building a resentment towards them...because of a behavior I have chosen....yikes.

I guess the conclusion is....that if I want to be true to me, I need to be upfront and honest about how I'm feeling at any given moment. Not whine...but be honest. This is the most respectful route for myself and those I love. Even if someone is uncomfortable around me, then I have to remember that that is their issue not mine...all I can do is allow them the space they need, or give them the info they desire to feel a little less uncomfortable.....

not sure if any of that makes sense, or if I'm just rambling...but that's kinda where I'm at right now.

may you all be, kind, honest, loving, and patient with those around you and especially yourselves!!!!

hobbz

It's been a long couple of days...

I've tried to deny it over the last week, but I'm officially in a flare from hell. Not sleeping, completely exhausted, and I'm in icky icky pain....sigh. At first I of course panicked and decided that the savella was no longer working, but I've gained some perspective again and now I think it just is what it is a flare. I have been extremely lucky in that when I was pregnant my fibro was almost a non-issue so it's been close to 2 year since I've had a really bad flare...so i think that's why this has caught me off guard.

It's one of those flares where you just want to curl up in the fetal position and cry. The good thing however, is that I've been able, for the most part, to keep a reasonable perspective and not nose dive emotionally too. Not that I could have said that at 4 this morning, but I'm trying. Progress not perfection...progress not perfection...this mantra is keeping me going. It's just after 2 in the afternoon and I've been up for 12 hours and my little one is just happy as a clam playing, so I don't think much of a nap is in sight. Emma goes to bed early though so mom will be right behind her.

This disease is one that is constantly with you, but for me at least, still has the ability to sneak up and bite me in the butt...even when I think I'm on top of it. I have to remember that flares are just part and parcel of the whole deal. So yes life sucks right now....and of course my husband left this morning for his 2 weeks away at work...so the baby and I are on our own once again...why would it happen any other way???? We all have our crap, and I guess this is my crap to deal with...so I'll march on, and cry when I need to...rest when I can...and love my little girl the best that I know how.

here's hoping all of you are having a minimal pain day!

hobbz

slowly but surely

Things are slowly returning to normal. Working from home is going better than anticipated. I've been able to do an hour in the evening and then about an hour and a half in the mornings, which is working well with the baby in the morning. Just about time that Emma has been up for about 45 min and is ready for some attention and oatmeal, I'm wrapping up my work and can attend to her needs.

My husband is home right now, and that makes a huge difference of course in the morning as he takes care of Emma and I can just focus on work. I sleep less when he is home, because he snores. I've found this past week my fibro has been kind enough to wake me up from midnight until about 4am...so I'm definitely lacking in the sleep department. Naps have made it back into the schedule. I'd managed to eliminate them for several months and it was easier to sleep at night...but when I get way behind like this, I have no choice but to nap, otherwise my ability to deal with life and those around me is severely impaired.

I've had several migraines over the past 2 weeks which has been miserable. I was quite surprised when I went to pick up the migraine Rx that I've had for several years, to find out that it actually is contra-indicated with 2 of the meds that I've also taken for years. Why is it that the pharmacy is only just flagging this potentially deadly mix???? I'm not impressed to say the least! So luckily, thus far I haven't had any negative effects with my meds, but the flip side is, I'll have to find something else to take for my migraines. sigh. I'm wondering if I get something like ambien or Valium to help me sleep/relax, if that won't curb the migraines. The trick is to just take them as needed and not become dependant on them...that can be a slippery slope, and I don't want to put myself at risk for dependency issues. Man, while I'm soooo grateful for having found meds that improve my quality of life...it gets pretty overwhelming managing them all, and sometimes I feel like I'm 102 yrs old when I look at all the pill bottles that I have in the cupboard....hahahaha

The weather has been pretty warm and stable lately which has helped my fibro pain considerably! yippee, I always support the weather when it cooperates with my body :)

I hope everyone is getting through the dreary months of winter ok. We are gaining over 5 min of sunlight a day at this point, which makes a huge difference in the amount of light we get over the course of a week. Summer in Alaska is as beautiful as it gets! 20 hours of sunlight a day and temperate temperatures...LOVE IT LOVE IT LOVE IT.

take good care everyone!

hobbz

whew made it thru the last couple of months...

Once again time has sped by at break-neck speed...but the last 2 months have been really crazy and sobering for me. In early December we travelled to San Diego for 10 days and had an amazing time...it was great to be in semi-warm weather again! As soon as I got back I started work, and that was a total disaster. The first week I worked Wed-Fri, and thought I was going to die of exhaustion, from the fibromyalgia and lack of sleep with an 8 month old, but I made it through. Went to work the following Monday and that night came down with the flu/cold from hell! I was sick as a dog for about 9 days. I know that it was a killer bug, but I also know that it was compounded by the fact that I was exhausted from working. During my sick time off of work, it became abundantly clear that I just can't hack working in a conventional job anymore. While I knew this when I originally left the position, I kind of forgot, because I was feeling relatively good, being at home with the baby...and I was only going back for a limited amount of time. Who can't handle a couple months of work...right? Well apparently I can't...and I fricking hate hate hate hate it. It makes me feel so flipping useless, i don't even know how to express it. I know that I'm doing a great job at home and with the kids, but i hate the thought that my body won't let me work if I want to. The lack of control is quite infuriating.
I keep trying to tell myself that there are lots of folks a lot worse off than I, and that for now I really am enjoying being at home with Emma...but there is still that lingering voice that hints that I'm a failure and "less than" everyone else.
I will get over it, and I will accept the fact as it is...but to be honest it just plain sucks ass! I'm an over achiever by nature, and fms certainly has put me in my place. I'm checking into some Internet stuff to make some extra cash...and I've agreed to work 3 hours a day from home, until my boss can find a replacement for me...only because I felt guilty as hell bailing on them like I did.
This new reality sucks...it's been almost 6 yrs since I was diagnosed and 8 months since I stopped working and I'm still struggling with how this disease takes away from my life. argh. As I'm sure you can tell, I keep trying to tell myself positives...but to be honest right now I think they are a load of crap and I just don't believe them...so at this point I think time is the answer. I need to give myself time to accept what has happened...accept my reality...and realize that I really do enjoy my life as it is today...I just hate this stupid disease. I'm tired of hurting, not sleeping, not being able to handle sound, smells etc...and most of all and I know this sounds weird to folks who don't have a chronic condition, but a big part of me wishes this disease wasn't so invisible so that others could see it and understand at least on some level what I'm dealing with.... we will see what time does for the ego/brain lol

cheers...hobbz

Hellooooo all

Wow it's the middle of November already, can you believe it? Celebrated my 41st birthday with my husband and two kiddos last week and thoroughly enjoyed it. It was nice and quiet, but having the 4 of us all together for the evening was just what the doctor ordered.

I really don't have much new going on since my last post. I continue to try and manage the stress of daily life, and all that comes with it. Our weather has gotten significantly colder and I notice I sleep less and less when the weather is cold. The good thing is that my pain has been pretty good over the past couple of weeks.

In late December I'm going to help my old job out for a couple of months to help out with maternity and surgery leaves. I will work pretty much full time for January and February and then just on-call to cover vacations etc. after that. While it will be nice to have the extra pay, and get out of the house a bit, I'm pretty nervous about the whole idea. I'm really scared that when my hubby isn't home, it's going to really take a toll on my body....trying to care for a 6 month old and working full time...and then having my son home on the weekends....but it's time limited, and that needs to be my focus. I'm not really sure if this is the best decision or not right now...but it will help out financially and like I said it's only a couple of months. I can do anything for 2 months....that would appall me to do for a lifetime????? right????

we will see....sigh

long week

Well it's been a long week! Winter has definitely arrived in Alaska, and I'm feeling woefully unprepared for it mentally. I can already see the decline/change in my health.

Also feeling the impact of a lot of losses this week. I've lost some key pillars that I relied on in my life over the last year, and when I'm on my own, with a struggling teen and an infant I have no experience with, I feel pretty overwhelmed. Some of those pillars were people and some were ideals that I had on how things would play out under certain circumstances....I guess either way they are losses.

So colder weather and mental stress always triggers the fibro. Still not sleeping well, and feeling more pain because of it. It's like a vicious circle, when one thing falters it becomes a horrible snowball effect that leaves one exhausted and in pain. It's a lot harder to keep positive during these times....the good part is, that even though I feel poopy, I'm still better off now on the new meds than before...so I guess it could always be worse right?

cup half full and all that :0)

hobbz

the fibro continues

I know I should have updated sooner, but my doc appt was postponed. All in all things went well, however, and as per usual I let my mind get the best of me. She feels that the joint issues are all part of the fibro, and unless I start getting swelling or pain not associated with caring for Emma...then I'm just fine.

I think part of the issue is that before I was on Savella, I was in so much muscle pain, i didn't really notice the joint pain, and now that the muscle pain is greatly reduced, I feel more of the other fms symptoms.

Been having lots of trouble sleeping lately, and I'm feeling like my old friend fibromyalgia is settling in again after the reprieve of pregnancy. I guess that's just the way it is. Really trying to keep physically active, which is always hard when you're tired, but I know that the payoff is worth it.

I've noticed alot of touch sensitivity lately...does anyone else notice that. We have a super soft blanket on our bed, and I bought it because it was so comfy...but when my fibro is rearing it's ugly head...I can't bear to touch it...it's too soft and it gives me the worst feeling ever.....weird huh