Thursday, March 31, 2011

Whatever It Takes....

I am trying not to lose my shit here. I feel like I'm bi-polar or something. I guess I feel like the Fibromyalgia (FM) is bi-polar. I'm struggling to "keep up" but I'm not. I'm "borrowing spoons" and paying for it. So I do I what I need to, and then I can't do at all. I have had a few opportunities to write this last week, but held off, because I wanted to write something that wasn't all bitchy and angsty. Now, I'm not sure when that might be, if ever. Yes, I'm catastrophizing, I do it well; Watch & learn from the master. Today, my Irritable Bowel Syndrome (IBS) made another command performance. It was my own fault, but I get so wrapped up in just making it through day-to-day that I have trouble seeing the forest for the trees. Which means, I guess, I just cut them all down? I don't know where that metaphor was going, try and keep up, maybe you can explain it to me later. Let me back up a bit. I had a bad day Monday, both girls were in school and spent that time in bed. Got through the rest of our Monday afternoon and was hit with a migraine right around the time DaddySpeak got home. (Lucky him.) I ended up in bed at 6:00PM. I did manage to kick the migraine about 1o:00 PM, so I got a fair amount of sleep. Tuesday, (yesterday,) I spent the day trying to make up for Monday. LittleSpeak is home that day, so we hit the gym, (her class,) Target, (groceries & b-day gifts,) hair salon, (Little needed a trim,) eye doctor, (I needed more contacts,) and the library. During all of this, my mom called to inform me she might need a ride to the doctor because she may have broken her foot the night before. (Don't get me started on the fact that there are currently 3 other drivers living with her right now, and that she waited till they all were somewhere else to call me. I don't have an issue with helping her, I find it curious that I was her first choice, when, clearly she had other options. Yes, another post, another time.) So in-between all this running around, I was working the phone with my mom. Not a big deal, but an additional stressor. At 4:30 PM, Little had softball practice (because so many games have been canceled due to rain,) and BigSpeak needed to be at warm up for her game at 5:00. No, they are not at the same field. I worked out a carpool for Big, (original plan had involved G'ma,) and during Little's practice texted Daddy to pick up Subway for dinner, chairs to watch the game, (which were not in the van,) and the snack for Big's game (we were the snack parents that night, of course.) Keeping up? I drove from Little's practice to Big's game. You may remember, that I'm the unofficial photog for my kid's teams. (The parents on Little's team haven't quite gotten the memo yet.) Big's team is so used to me, they see me with a camera nearby and they check their teeth and smile. I'm not joking. I have a few reasons why I prefer being a soccer mom to a softball one, but the top of the list is photo ops. I can't get in close to the action in softball, like I can in soccer. Thus I spent half of every inning on my stomach at the foul line, just past the backstop fence. As you might imagine, this did much for my back pain. An hour after the game, I could barely move. My neck, shoulders, back, hips were all in agony. I slept like crap. If I stay perfectly still I'm fine. Whenever I moved, it would wake me up. This morning, was not my best. I got both girls off to school, but I was hurting so badly. I decided I wanted one of those Starbuck Mochas. My version of comfort food. I've been really, really good on my low-carb diet for a little over a week now. Honestly, I didn't feel like it was helping at all, so I splurged.

I won't ever do that again.

Within 30 minutes, I was so very sick. I don't really consider a warm mocha my comfort food anymore. In addition to the back, neck, shoulder, etc...pain, I added a very bad bout of IBS to the mix. I took some meds for the IBS, I've had limited success with them in the past. I've been very, very good about my fluids all day. I did have some cheese this afternoon and a few hours later, some nuts (almonds and cashews); all high protein stuff. I got crampy, but my stomach held. That's where I am now. I kinda don't ever want to eat again, but I'm sure that will pass.

I'm going away for a girls weekend on Friday. I'm torn about going. I feel like I have so many things I need to be doing, and this two steps forward, three steps back dance I'm doing, isn't helping. I scheduled this weekend because we had nothing going on, and I wouldn't be missing anything. Now, because all the rain we've had, all kinds of events have been rescheduled to this weekend. The girls have two birthday parties and games. Daddy is going to either have an appreciation for what I do, or be gone when I get back.

I really, really hate this. I'm getting depressed. I'm just so tired and hurting. Big had to write a sentence for homework using the word spine, I suggested something to do with mine not being great and she replied, "I don't want the whole world to know!" Um, okay. I reminded her that my health issues are not exactly a huge secret. She said, she knew that, and she didn't mind if her friends knew, but not the whole school. So, yeah, my 7yo is embarrassed of me. I also got on a scale for the first time in a while and my weight is up. I'm at my heaviest non-pregnant weight ever. I'm not surprised by it, I can tell by the way my clothes fit, but confirming it, isn't helping my mood. I just wish there was some way to fix this, to make it all stop. A magic pill or diet or exercise. If there was a way to make it go away, I would do it. Whatever it takes...

Monday, March 21, 2011

Asking for Help

Growing up, I was mocked if I complained about aches, pains, being ill, etc... I was (not so fondly,) referred to as "Sarah Bernhardt" by my parents and grandparents. I can think of many, many occasions in which not only were my feelings/fears not validated, but were flat out dismissed. I remember these incidents with amazing clarity. Amazing to them, not me. I suspect, that many of these "aches & pains" were the early signs of Fibromyalgia, (FM). At the time, I just knew something was wrong, and my parents, the people who were supposed to take care of me, to be my champions when no one else believed me, told me to "stop being so dramatic." I was often told to "toughen up" and "suck it up." This left me feeling like I was weak and inadequate. Getting that message as a kid, it sticks with you. I struggle now to feel like I'm not inept.
I'm NOT making this up. When I say it hurts, it really does hurt. When I say I'm exhausted, I don't mean I need to sit down for a few minutes, I mean if I sit or lie down, I will fall asleep.
It's so hard to believe that other people will understand, when those closest to you, don't. I was raised that self-reliance was positive. Asking for help, a sign of weakness. Failing, not an option. I'm sure if you asked my parents directly about what I just said, they'd deny ever saying such things. Maybe they didn't say those things either. But their actions and non-verbals were quite clear to me. What they told me, time and time again, was that there was nothing wrong with me. I was "looking for attention." Nothing could be further from the truth. When you learn, at a young age, that weak = bad, you do your best to hide the things that would be seen that way.

I suppose, some of their response was due to attention my younger brother was getting. They thought I was jealous. He had some severe learning disabilities as a young child. We spent a lot of time, for a lot of years, going to doctors and appointments to get him help. I honestly don't remember feeling jealous of any of the attention related to that. I had my bouts of "that's not fair." But I don't recall ever thinking he was being favored because of the attention he was getting related to his needs. (You would never know he had these issues now, BTW. He's not on the spectrum & never was, or anything remotely like that.) I don't recall feeling like I missed out on things for me because of these appointments. I'm sure that happened, but my point is, none of it felt different from the day-to-day family give and take that most people deal with while growing up. I'm bringing this up because I think my parents may have been sensitive to that situation. When I would complain about something I think they thought I was looking for attention, because of the attention my brother was getting. I understand that, to a point. But at some point, shouldn't someone have taken it seriously? When the complaints didn't go away, shouldn't someone had said, "Maybe there's something more to this?"

I'm venting because in the process of my FM symptoms coming back, I'm once again being dismissed. Made to feel like that 7yo, who was told time and again, she was just a drama queen and it was growing pains.

Little has had a rotten cold that 5 or so days. She has been up with nightmares, ear aches and sore throats for the last several nights. I have not been getting much sleep at night because of it. (Remember, I don't sleep, I have pain. I have pain, I don't sleep. It's a cycle, I'm working really hard to avoid.) Today, her cough and complaints were enough that I kept her home from school and took her to the doctor. It's nothing big, just a really rotten cold and not much sleep for either us. About noon, her and I were both starting to crash. I knew if we napped, I wouldn't wake up in time to pick up Big from school in a few hours. I called my mom to see if she would mind picking her up for me, so I could sleep. She said, "No, because she had stuff she needed to do." Later, while sitting in the pick up line at school (watching the hail,) my mom started to text me. She apparently felt bad. Her peace offering was to offer to take Big to dance at 4. I declined. Big had some schedule overlap and wasn't going to dance. But I have to say, it pissed me off. My mom will bend over backwards for anyone, BUT me. I do not know why. I'm not the only one who has noticed this and commented on it. My brother and his wife have noted, more than once, how my mom, "always gives me the short end of the stick" and "definitely does not cut me any slack." For my brother's family, she will move literal mountains. For me, not so much. Let me be clear, her peace offering was not for me. It was because she didn't want to disappoint Big. I could go suck eggs as far as she was concerned. (That, is me being overly dramatic. See, I do know the difference.) Her peace offering was for Big, not me. She doesn't seem to understand, that when I ask for help with the kids, it not for the kids, it's for me. I need to rest so I can function. My parents seem to consider that a luxury.

It took me years to learn how to ask for help when I needed it. Years. I was taught that I should be able to do it all. When I couldn't and I fell on my face, they told me to "just get over it." "What would people think?" Falling on my face, was on an emotional level. Oh no, I did not do a public swan dive. Because, yes, what would people think? It didn't become public until I had fallen into such a deep depression it was obvious to the homeless guy on the corner, that something was wrong with me. At that point, I'm not sure what got me out of bed. On a lot of days nothing did. I asked for help today. I'm asking for help before it gets out of hand. I have kids now, I can't afford to worry about what people might think. I need to be there for them. I know I can't do it alone. Not right now. I let the house go. I haven't showered for days. I wear sweats and baseball caps to try to hide what I'm not doing. I have to prioritize my energies. But when I get to the point of asking for help, I need it. I can hear it in her voice, and see it on her face, she doesn't understand that I'm sick. She doesn't believe I'm sick. "Because I don't look sick." I'm sorry, I don't have a blood test or x-ray or CAT scan to prove something is wrong, but it is. If I get turned down, because you truly can't, that's fine, I understand. Trust me, I really do understand. But know, that if I asked you for help, I needed it. Something else is going to give.

Sunday, March 20, 2011


Yeah, I'm going through the 12 steps, maybe by the time I'm done, the Fibro will be gone? Wouldn't that be nice.

I'm angry about a lot of things. Who wouldn't be? There are the things I'm missing, which makes me angry; activities w/the kids for example. I'm angry w/being sick & feeling like crap all the time. I'm angry about having an illness that isn't understood and that some people don't believe in. What I'm most angry about is all the guilt I have associated with being angry. There's a huge part of me that feels like I'm not allowed to be angry. I don't understand it either. I didn't choose to be like this. I don't choose to miss out on those things. I often borrow spoons from the future, so I won't miss out, but in the choosing I'm losing other things and I often get mad or at least frustrated with all of it.

Last night, LittleSpeak came in about midnight, upset from a bad dream. I let her lay in bed w/us, which, of course, turned into sleeping with us. I don't do well w/either of the kids in our bed. I tend not to be able to get any real sleep (REM) when they're there because I stay somewhat aware of what they're doing. I did get a few hours, but at 3 AM I woke because she had me pinned w/one of her legs. (She was pretty much sideways.) I had to wake up DaddySpeak to take her back to her room. Again, my sleep wasn't great, which means when I woke up this morning, I was already starting the day minus spoons; I was hurting. Little (our alarm clock,) came in to get us (me) up. (Somehow Daddy seems to "sleep though" her little wake up visits every morning.) I had forgotten to set the alarm, so we were late. (Big has CCD on Sunday's before church.) I got up, got both girls dressed, fed and dropped off Big at CCD. Came home, set Little up w/a "movie" (cartoons) and unloaded the dishwasher. Daddy came down in sweats a few minutes before we needed to pick up Big. I left to pick her up, took her to the bookstore, (gift for a party was going to later,) got her home, wrapped her gift, redid her hair (braids for jumping, going to trampoline place,) and pulled up the waiver for the trampoline place. I'd done all of this before 10 AM and was hurting more & more as we went along. In the meantime, Daddy was sitting in the same place, watching basketball recaps from yesterday. (Yes, he'd already seen them before.) Note; we have two printers in this house. One is supposed to be wifi, but went off-line a few months ago & we haven't been able to get it back online since. The other is plugged into our computer upstairs. I had to go upstairs to pull up the waiver for the party & print it. Sounds easy, yes? Except, my husband has loaded all kinds of extra software on that computer and it constantly wants to be updated. There's a continuous stream of pop-ups appearing to ask you if you want to update. He has put so much crap on there, that I don't know what's legit & what isn't, so I don't feel comfortable saying yes to any of the updates. I've asked him multiple times, over several months, to fix this, but he has yet to do it. Because the pop-ups are running (or trying to,) it inevitably locks up the computer. It took me 20 mins to print that damn waiver. (It should've taken 2.) During all of this, the girls kept coming upstairs to ask me how to spell words (b-day card,) & where things were (wrapping & card making supplies.) Daddy was sitting 10 feet away from them, but he doesn't answer or even acknowledge when he's watching (reruns) basketball. Stress will up your symptoms w/Fibro, and I was feeling pretty stressed by the time I got done. So, my pain level was going up, not down. Then I reread the email & realized I needed to drive Big to the b-day girls house, (I misread it & thought they were picking her up.) So I was scrambling to get her to their house. I was hoping to take Little to this place, to the little kids free play area & maybe get some pix of the the b-day party and Little bouncing, but I'm not up for it. I got back from dropping Big off & told Daddy that and I can tell he's not thrilled to take her on his own. But I don't think being bounced around is in my best interest right now. Truth be told, I need some down time alone right now. I also bit his head off about the computer thing, so he's thrilled w/me right nwo. I'm irritated w/life and him and he's irritated w/me. Here's the thing, I have a huge amount of guilt for being frustrated with him. Bah! It's not like he hasn't had plenty of time to fix the computer situation. But I'm feeling guilty because I end up missing so much and he has to do with the kids on the weekends.
I know rationally that he should spend the time with his kids. That, I too, deserve a break. I get that when I stay home from something fun, I'm not really getting "me time. I'm just making sure I have enough spoons to finish the day. I would actually be happy if I were to get to sleep in once a week, ever. He is slacking on getting the computer stuff done. But I feel guilty because I would take care of this stuff if I wasn't sick. It's like cruel trick of nature; you're going to feel like shite, you're going to miss out on lots of fun things and you're going to feel guilt for missing it all.
When do I get a break?

Tuesday, March 15, 2011


The last few weeks have been an emotional roller coaster. There's an understatement. I'm currently in what one would call a "Fibro Flare." I went through a very long period of denial, months in fact, and the last couple weeks have been a hard lesson in acceptance. I was going to write something about how hard it is to have a chronic illness. Then I started thinking about all the chronic stuff out there; diabetes, arthritis, lupus...and realized that I need to get over that part. It sucks, there's no doubt about that. But everyone has crap they have to deal with on a daily basis, (and don't get me started on the stuff in Japan, because that will put me into depression,) so I need to quit my bitching about that. No, the hard part this last couple weeks is knowing what is coming and feeling a complete loss of control. Before, I didn't know what was in store for me. My primary Fibro symptoms have included; migraines, non-restorative sleep, insomnia, Irritable Bowel Syndrome (IBS), Chronic Fatigue, depression, TMJ, wide-spread muscular pain, etc... It's a long list, but those are the symptoms that were bad enough to require medical care. My migraines started back up several months ago. At first, they were clustering around "my time of the month," but started becoming more and more frequent and debilitating. I finally got into a doctor for them and also admitted my sleep patterns had not been that stellar as of late. This doctor was actually somewhat excited to treat me. He had "some great meds for migraines that weren't around when I'd been treated for them previously." He's also the one who brought up my Fibro and started asking questions about my sleep. He prescribed me a low dose anti-depressant to see if it would help with my sleep. Since then I've had only 1 full blown migraine, which I was able to mitigate w/the migraine meds he gave me. Lasted less than four hours, as opposed to the multiple day ones I was having before. I also realized all the peri-menopause symptoms I'd been having (bad hot flashes & night sweats,) seemed to have stopped around that time. Bonus! Awesome!

Since that time though, my body has been trying to change it's clock. Trust me on this, when your body does this, there isn't much you can do. My body clock would like to be from sometime after noonish to about two or three AM. I am trying to keep it on the 10 PM to 7 AM for sleep vibe, (since it's almost midnight now, you can see how well that's working,) so I can deal with my kids when they're awake, but not so much. I know all the tricks related to sleep issues; only sleep in bed, no TV, no books; go to bed and get up at the same time every night, keep paper by your bed to write things down (keep your mind from spinning,) there's more, but you get the idea. It's not working. My body is running at it's peak about 10 PM to 1 or 2 AM. I can't seem to shut down before that. New flash: When you don't get enough sleep you're exhausted. Your PSA for the day, you're welcome. I'm great at pointing out the obvious. The exhaustion is typically accompanied by pain, and round the cycle goes; the pain makes it hard to sleep, you don't sleep so you have pain. Whee! The final straw, (in the past,) has been my digestive system. When my GI Tract gets involved it goes big. By big I mean it's landed me in the hospital a couple times. I don't think it'll ever do that again, (I did a lot of the wrong things in the past & know better now,) but never say never, right?

The widespread pain started in earnest about 2 weeks ago. (I've had major pain before that time, it just seemed to be centered to my sciatic issues.) I have 2 types of pain, nerve, from my disc problems and muscular, from my Fibro. I may have been dealing with the pain issues for much longer, but it started traveling to old favorite areas (mid-back, neck, shoulders, ankles...) in the last month. Areas that have nothing to do w/my lower back or leg. I suspect the two things exacerbate each other for fun. The exhaustion kicked in at that time as well. For the last two weeks or so, I get up, get the kids where they need to go and get back in bed till I have to go get them. When they're home, I lay on the couch and have them move the kids chairs & tables near so I can help with homework, read to them, etc... Yeah, no nominations for mother of the year over here. I feel like I've got the flu or mono, that's the kind of tired I'm dealing with here. I've been working on getting back onto a very low-carb diet, because I felt in the past that it helped with my symptoms, but it's been slow going. When I'm in pain I want chocolate. (Understandable, chocolate releases endorphins, your body's natural pain killer.) What I really want is my Starbucks Mocha. It's my version of comfort food. The warmth of that chocolate going down my throat immediately relaxes me. That craving, is my Achilles heel for the low-carb diet. It's the hurdle I'm having trouble getting over. This morning, after 5 or 6 days without one. Five to six days spent in bed because of pain, I decided I was going to have one. I figured if I limited my carbs everywhere else all day that could be low-carb enough. I was taking Little to gymnastics, where I sit for an hour on a cold bench in an unheated gym. It doesn't do wonders for my pain level. I wanted one to get through that hour, and the next couple after that which would more than likely be pain filled. I indulged. My pain had been slightly better and the feeling of that warm mocha seemed to help melt the last of it away. Surprisingly, I ended up running quite a few errands with Little after gymnastics because I felt so much better. Then my stomach joined in. My IBS seems to have taken exception at that mocha. It took the Fibro pain and turned it into Fibro IBS. All the bloated, uncomfortable, out-of-control feelings that come with IBS have shown up. There are other, more graphic details, I'll spare you, that accompany a bout of IBS. Let's just say I have no doubt it's not just something I ate. It's me. It's the way my body responds to this; it's the Fibro.

I haven't wanted to admit it's back. I know I've said that in the recent past, but I'm still fighting it. I still don't want to believe it. I want to be back how I was when Little was an infant. That short period of time when both girls where born, my back had not been injured yet, and my Fibro was gone. I want that back. I want my girls to know that mom.

I have owned up to the fact this is for real. My old rheumatoligist considers me a new patient because of the amount of time since I've seen her. "She's no longer taking new patients." Can't make this shit up people. I went to see my GP last week. Seeing a doctor about it, makes it real. She's good, she listens and seems to care. I told her my details, she's concerned about depression. (She "doesn't know much about Fibro.") My response? "Chicken or the egg?" One follows the other, you don't sleep, you will eventually experience a true physical depression. I know of what I speak. She referred me to another rheumy & wants to me see a shrink as well. I have an appointment in April w/the rheumy; I'd seen him briefly 10 yrs ago, but had to change due to insurance. That got me the April appointment, as opposed to May. Glad I'm not an emergency. I still need to find a shrink, but I'm procrastinating. I've had good & bad ones in the past. The bad outnumber the good 2-1, I'm just not into it. I know I need to see one, but I just hate the process.

Know what I hate more though? I hate that my body feels like it's attacking itself. I'm ready to be done with that.