Thursday, October 20, 2011
Sunday, September 4, 2011
Friday, September 2, 2011
So there ya go... that's a heck of a lot of Silver Linings to my Fibromyalgia.
Monday, August 15, 2011
Once again it is almost 8pm and I still have not eaten anything today. As hard as it might be for some to believe that I am not intentionally starving myself. I am not anorexic... I just simply forgot. Again. Pain is a great appetite suppressant.
I've fed my son, and considered dinner options for my husband. I've shuffled around in the fridge and been in the kitchen multiple times. I discussed food with other members of my support group. But like so many many times before, it just didn't enter my mind that I needed to eat. About an hour ago I ended up cracking open a can of SlimFast, just to get some form of nutrition into me, and it took me nearly 3 hours to finally get the whole thing down (even though it tasted delicious).
I'm just not hungry, and the thought of eating is kinda repulsive. I'm not nauseous, although I am weak and in a pretty thick Fibro Fog. If I get hungry, it goes away by the time I get into the kitchen, and then I forget why I was in there in the first place... and come back out with my belly still empty. It's not abnormal for me to not eat anything until dinner, and to not get truly “hungry” until I'm actually in bed, finally relaxing and allowing the pain meds a chance to work their way into my system.
I know I'm not alone in this.
What is it exactly that makes so many Chronic Pain sufferers unable to force themselves to eat... and even forget all together? Is it that the pain makes us completely not hungry? The side effects of medications? Or that we don't have enough energy to make ourselves food because we haven't had any food?
This last one is a biggie. I was actually hungry a few hours ago, but couldn't drag my sorry behind up off the carpet. And my son was having enough fun climbing on me to be giggling like crazy... how could I stop that? By the time I got into the kitchen I had lost my appetite again, and nothing in the fridge or pantry looked good enough to override the whole “food is repulsive” thing.
I don't think it helps that it can be extremely hard to get to the store to get food in the first place... maybe it's because I am often too lost in a Ffog to be able to drive, or even to compile a list for someone else to go shopping for us. It also doesn't help that most stores are incredibly overwhelming to all of the senses and I have begun avoid them in fear having to process all that stimuli. There is also the fact that all of that reaching and bending and moving and planning and thinking and counting is EXHAUSTING. So is the effort of putting everything away when I get home. And by that time, I am in so much pain my appetite is completely gone again
How does pain change your eating habits?
Sunday, July 24, 2011
Thursday, July 7, 2011
I've spent a lot of time in the past few weeks reflecting on relationships, and how Fibromyalgia and CFS (and other chronic illnesses) seem to be a death sentence for them. Mostly, I've been thinking about how strongly illness affects friendships.
Growing up I never really had many friends... and what friendships I had never really lasted longer than a week or so. Since I was always sick, it was really hard to create a friendship with someone who didn't understand my health, and therefore I've always only had one or two friends at a time (The same ones from fifth and eighth grades, too). I ended up collecting quite a few online friends by the time I was 13, and found myself to be more comfortable with them than I ever had been with anyone in person... there was just nobody “in real life” that got me.
A few years ago I thought I had it all figured out. I had a few close friends surrounding me and I spent countless hours with them. I was really happy. I felt loved, special, and like a normal person. There were people that wanted to me around me, and it was WONDERFUL. My self esteem skyrocketed, because I mattered to someone. Someone thought about me when they weren't with me, cared enough to try to make me laugh, and would come visit me if I wasn't feeling well. People were willing to make the adjustments required by my health in order to have me a part of their lives, and vice versa.
But then sick 'ol me got even sicker.
When Fibromyalgia became the boss of my life, I couldn't even maintain the few relationships I had anymore. Everything around me crumbled, and the friendships that I had worked so hard to develop and nurture took a violent crash into the abyss. I couldn't hang out, I couldn't go anywhere, and coming to my apartment and watching me writhe in pain was more than most people could handle. (Although not many really tried... I admit I do have a couple "real life" friends that have been very supportive of me, especially lately. They know who they are, and how much I appreciate every bit of effort they put into taking care of me.)
Of course, there was also the unspoken trend of “This is BS, Fibro isn't real, all she needs to do is get off her duff and things will be better, blah blah blah” from the people in my life with imaginary medical degrees. Anyone that said “Push through it” and “Suck it up, everyone hurts” was making a choice not to be a part of my life by refusing to learn about what I was going through. Most of these people I ended up having to remove from my life all together because their callousness was toxic to me. Some just couldn't handle seeing me in pain, and slowly backed away, saying that we could resume our friendship when I was better (which we know is pretty much “never.”) Once again, I was alone.
After being a member of a support group on Facebook for a few months, it hit me.... I was trying to develop and maintain all these normal friendships with all these normal people who I had very little in common with anymore. I was making myself miserable by the constant reminders of what I couldn't do and couldn't have. I cried constantly because friends were going to the beach and I hadn't been invited (not that I could go anyway, but being thought of would have been nice...).
The support groups first taught me that I wasn't alone. There were other people who were in the same situation I was.... they had the same health problems, they spent days in bed because the pain was too bad to move, they took 3 baths a day, swallowed handfuls of pills, and were as lonely as I was. It was nice to have someone to talk to, but I still felt like my life was lacking. I was still lonely, although less so, and I was still every so depressed because of it. My fellow Fibromites were great acquaintances, but I still didn't really have friends.
Then it hit me. Why the shouldn't I put all the effort I had been using to mourn my dead friendships into developing new online friendships like the ones that got me through my teen years? It's not like I can go anywhere or have a normal friend relationship since I'm so unstable right now. But these women in my support group... they really got it and knew what I was going through day to day. And when I met Brandi and Torill, things started to change for me really fast... especially after launching the Silver Lining of Fibro support group. I began feeling like I had worth as a human being again, that I was valuable, and loved, and needed, and special.
Because of the experiences Brandi and I have had with our personal friendships and fibromyalgia, our “mission” was to create a support group that would be a group of friends, rather than a bunch of random women complaining that they hurt all the damn time. It would be a place to talk about our kids, our horrible experiences at the grocery store, but mostly to learn how to have a real life while living in pain. As our ties to each other have become stronger, we've taken them offline – creating a snail mail club, making each other's phones blow up with texts... and for a lucky few that live close together, planning get togethers and lunches. Since our members are around the globe and we are all a bunch of insomniacs anyway, there is always someone we can talk to, to cry with, or to make laugh. There is always someone to send us a mental hug.
Recently my depression came back again, with its gaping toothy maw open and ready to eat me alive. I felt lost and extremely alone. My husband realized I hadn't talked about “the girls” in the last few days, and he asked me if I'd been talking to my support group lately. I realized I'd been hiding from them... trying to keep my depression from leaking out into their lives. (Something I frequently yell at the other women for doing.) I took a deep breath, got online, and confessed my emotional state. Within seconds I had two texts and a flood of messages from my new friends asking how they could help me, trying to set up a lunch date with me, and just saying “I love you. Stay strong, you'll get through this.”
Each message was like a ladder rung, giving me the support I needed to climb out of the hole. Yesterday morning I woke up and the world was bright again... and I knew I was gonna be okay.... simply because I had rediscovered the Silver Lining to my Fibromyalgia... FRIENDS.
Wednesday, June 22, 2011
There's one question I seemed to get asked more than anything else: How the heck are you raising a baby with Fibromyalgia and CFS? I don't really have a good answer for this one except that you do what you have to do for your child.
One of the most heartbreaking moments of my life came one morning when my son was about 6 weeks old. That day I got out of bed and I ACHED. I knelt on the floor in tears, my face buried in the comforter, sobbing hysterically. My husband woke up and asked me what was wrong... and all I could saw was “It's back. It came back...”
You see, I had hit nearly complete remission while I was pregnant. My pregnancy wasn't entirely easy, but it was very probably the best and easiest time of my life. So much less pain... everything that was wrong could be easily treated... and everything I went through was “normal.” I didn't feel like a sick freak with a weird disease, I felt like a human. Since I had been told by a few doctors that pregnancy could very likely cure my Fibromyalgia and make it go away forever, I hoped and prayed that would be the case for me.
It wasn't. Once the aching started, it didn't take long for my other symptoms to return. They built up slowly... gradually returning me to the state that I had been in before conceiving. I began to wake up stiff again. I began crying when I tried to get my clothes on in the morning. I began to be frozen in pain for the first and last hours of the day. (I know now that a lot of this was due to CFS, which I had not been diagnosed with yet.)
This time around I was very active in treating my pain. I took my pills like a good girl... I didn't skip or try to make do nearly as often as I did before having a baby. I had to function for him, which meant I had to take the pills for him. (Although within a month I had completely run out of my pain medication, and my doctors refused to give me any more... but that's another blog...) I tried to nap when he napped. I let the pile of dishes pile up to the kitchen sink, forcing myself to leave them there instead of wearing myself out even more. I knew that if I didn't take care of myself, I would be unable to take care of Robbie. To be a good Mommy, I had to be good to myself and damn the housework so I had the energy to do it.
I think the biggest thing that helps me is going to bed at night and not staying up all night to read. That's really hard for me to accomplish... I usually am glued to my Nook until about 1:30am when I just can't keep my eyes open any longer. While I'm reading, I know I should be going to sleep to rest up for the next day, but it's just too hard to stop. When I read there is no pain.. because I'm not me, I'm a character in the book. Escaping is much more seductive and enjoyable than sleep, no matter how tired I am. (Hi, I'm Erin and I'm addicted to reading....) However, if I go to bed like a good girl around 9:30 or 10pm I usually have an easier time of it the next day. I won't claim that I always do that, though.
Another thing that really makes a difference is how and when I wake up. If I open my eyes naturally, I can expect a halfway decent day. If the baby wakes up at 6 and won't go back to sleep, I'm in for a pretty hellish day. Mornings were a lot easier when he was little enough to happily play in my bed for an hour while I allowed my body to slowly wake up and give the pain dullers time to kick in. The longer I could stay in bed, the easier my day would be. On many mornings my husband would bring coffee to me in bed, and Robbie and I would just chill and watch an Elmo DVD while playing with the toys we store in our headboard until I was ready to get up. Now that he wants to be up and playing within a 15 minute span, I don't have that luxury anymore, although my husband tries very hard to let me stay in bed until he has to go to work. Now the best thing I can do for myself is swallow my meds on the way to the kitchen to feed him his breakfast while I try to loosen my muscles up as much as possible. And gulp that coffee.
Sharing my epsom baths with Robbie after they had cooled enough for him has been one of our favorite ways to bond, play, and manage my pain at the same time. Mike has come home many times to find us giggling in the bathtub while we soak away my aches. Sometimes we just hop into a hot shower – my back blocking the spray from hitting him while he plays on the tub floor (this is usually the only way I end up getting a shower, too...).
We have made a lot of concessions to my pain while purchasing baby gear. I have learned to shop for strollers and car-seats during a flare to make sure I can manage them while in bad shape. My son is 8 months old and we are already on our third stroller, simply because I couldn't lift his infant seat onto the infant seat stroller anymore. I made sure that each stroller could double as a walking aid for me as well and that it would support my weight if I had to lean heavily on it. Our current “daily” stroller is about 10 lbs, and I can lift it with my bad arm on the most painful of days. We also have a second stroller for longer walks and Disneyland trips... I cannot lift it a millimeter off the ground, but it makes a very comfortable walker for me and has enough basket space to carry whatever I need with me.
Thanks to hand-me-downs, I have collected a rather impressive array of baby-wearing contraptions... but there is one carrier that I fell head over heels in love with. The Mobi is just a really long length of soft jersey fabric that is incredibly comfortable and doesn't put painful pressure anywhere on my body. I call it my Fibro-friendly carrier... because it doesn't add to the pain that's already there while making it easier to carry Robbie around the house or through the grocery store.
The hardest part of being a Fibro Mom is when your baby is lying on the floor crying, and you lack the ability to bend and strength to pick him up. You have to inch-worm over to his side and lay on the floor with him in order to pull him to your body and comfort him... because you know that if you try to pick him up you will probably drop him. Robbie is slowly learning that Mommy can't always pick him up, and loves cuddling with me on the floor. I will be investing in floor pillows very soon in order to make playing with him more comfortable as well.... laying on the floor tends to hurt after a few minutes.
One of the more positive aspects of having a kid is that it is a lot harder for me to retreat to my “cave” during a flare and not leave the apartment for days. I just don't have the option anymore. But I am extremely motivated to do everything in my power to keep my health from sheltering my child, so we go on walks whenever I can push through the pain in order to show him the world and give him fresh air and new stimuli. Although I suffer increased pain after our walks for at least 36 hours, I do it for my child... and his enjoyment is a pretty decent pain-duller in itself.
There are a few other things that really seem to help things be easier. I recently switched to Drop-In bottles, because it was getting to be just too much to stand at the sink for half an hour before going to bed to scrub that day's bottles. I order diapers from Amazon.com and have them delivered automatically every month... and save a bundle by doing it. I try to team up with my mom as often as I can when I run errands, or wait for my husband to go with me. I make an obscene amount of lists to prevent Fibro-Fog from taking hold. I take full advantage of Robbie's fascination with Elmo and the rest of the Sesame Street gang so I can lay on the floor while my medications slowly work their way into my bloodstream. I see my doctor monthly in order to fine tune my medications and come up with new ideas that may help me. I always take my vitamins and controller medications.
The hardest for me is to ask for help when I need it... as hard as it is to admit to weakness, it is easier to swallow my pride and have someone help carry the groceries or come play with Robbie for an hour so I can lay down than it is to manage the flare that is guaranteed to happen if I don't ask for help.
And, of course, my husband is the biggest help of all. There are no words to express the relief and surge of love I feel when he says “Yes, honey, go lay down and take care of your pain” or says we can once again have mac'n'cheese because he knows I hurt too bad and am too tired to cook.
It's incredibly hard to have a baby. It's also incredibly hard to have Fibromyalgia and CFS. But to have all three still seems like an impossible task. Each night when I go to bed I stare at the ceiling and wonder how I got through the day. I take inventory of my body, amazed at how I managed to take care of my son with the amount of pain that I had been in, and as tired as I was. I lie there in fear of what the next day will bring in the same breath that I hope it will be a better day... knowing that the only way it will be is through the grace of the Gods, a heck of a lot of pharmaceuticals, and with a hell of a lot of help from my husband during the hours he would be home.
But ya know what? The smile on that little boy's face and the look in his eyes when he sees me is worth every single ounce of pain it takes to make him happy and cared for. And I can honestly say that I am proud of myself for being able to do both of those things. Fibro and CFS will NOT stop me from being a good mommy... and I'm DAMN proud of that.
Sunday, June 12, 2011
Monday, May 23, 2011
It hurts to have Fibromyalgia in more ways than may be obvious at first glance. I believe that Fibro creates even more emotional pain than it does physical. Nothing reaffirms the emotional pain more than my husband's eyes when I see all hope crash and burn whenever he comes home and finds me still hurting.
There is always the space of a breath after he asks me how I feel where I have to make a conscious decision between confessing my pain or keeping it to myself by avoiding the question or lying. I know that if I decide to choose honesty I will see that look of disappointment and pain, and feel horribly guilty for being the instigator of those feelings.... especially when he comes through the door after work smiling and one look at my tear-stained face wipes the smile off his for the rest of the night. There is no way to deny that I am the cause of his pain, even if I'm not causing it on purpose. There is no way to deny that my Fibromyalgia ruined his happy. How can I not feel guilt at this?
Sometimes I've been in a flare for so long that when I tell him that I hurt, his only response is “What's new about that?” That's as hard to deal with as the look in his eyes. It forces me to remember how much time we have lost with each other because of the pain or fatigue. I know that his anger isn't directed at me, but at the disease... but I still feel the guilt for being the host of the disease.
If I choose to try to protect him from the truth I will pay a heavy price for the strain of trying to carry the lie... and in the long run, I most often fail miserably. The fact is that the better job I do of hiding the pain, the higher the price I will pay, the longer I will be paying, and the sooner I will have to pay it. And I usually try to hold on too long.
On my husband's birthday I held on as tight as I could, determined to make it special for him and not let my Fibro kill yet another BBQ. That night I broke down and the pain I'd been pushing away caught up to me like Arnold's secret son. It's a good thing the next day was Mother's Day and he had already planned to wait on me hand and foot, because he probably wouldn't have had much of a choice. That flare ended up lasting two weeks and making my husband pretty damn ticked I stressed my body out that badly... and making him feel guilty that I cause myself pain for him.
The really sucky part is that no matter what I choose, we are both going to lose. If I tell the truth, he's unhappy, and I feel guilty, and then he feels guilty because I feel guilty. Or I don't tell the truth, and I'm inevitably caught, making him feel guilty for making me feel like I have to lie, so I feel guilty, and so on, and so on... until we're both just walking people-shaped sculptures of misery and guilt... alternately sharing our feelings and then keeping them secrets... and keeping the cycle of guilt and frustration going.
I know what's probably going through some of your minds, because I've had those thoughts too. I'm the one that's sick, he should be extra careful not to upset me and stress me out further.... he needs to keep a tighter lid on his emotions and he has no right to be angry..... WRONG!!!!!!!!
No one ever grows up saying "I want a sick wife, a pretty much nonexistent sex life because she hurts too badly to make love, to go to work every day while she lies in bed popping pills and then to come home and take care of her, a kid or two, cook dinner, put them all to bed, and try to find the energy to clean up after holding basically 1 full time and 3 part time jobs... while never having any money to spend on myself because all the extra ends up going to medical bills.”
I am not the only one that saw my future darken with my diagnosis. He may not feel the physical pain of Fibro, but he feels the emotional toll of it as deeply, if not deeper, than I do. He is even more isolated than I am... because who really understands what he is going through? I at least have support groups and friendships with women in the same situation I'm in. Like most men, he feels a strong responsibility to protect and take care of his family, but there is no way he can protect me from my own body. He can't fix me... and each moment is another reminder that he's failed to keep me safe.
He tries so hard to hold in his frustrations. I am in awe of that strength... I don't think I could do what he has done for me over the course of our relationship. He is an amazing husband, a wonderful father, and a fantastic friend. He is an amazing caretaker and nurse. But his guilt is tangible when he reacts sarcastically or with anger to my pain.... Or when he "allows" me to push myself too hard.... Or when he knows that I caught that heartbroken look when he gets home from work and asks how I'm doing and I am not able to tell him I feel amazing.... Or when he's massaged me for so long his hands hurt and he has to stop.... Or when I tell him there's nothing he can do. And I think that that's a big problem... because it's totally okay for him to have those feelings. It's human, and it shows that he cares about me... because if he didn't he wouldn't get so upset.
But we can't live like this. I can't lock myself in the bathroom with the shower running to cover the sounds of my sobs when he gets home, like I did only days ago. I can't continue to have warring emotions when he comes home... part of me desperate to see his beautiful hazel eyes smiling at me and feel his arms around me in a tight hug, but the rest of me knowing that what I will actually see is those eyes darken in disappointment when he realizes that tonight will be another one where he is unable to relax. He needs to be able to express his feelings about my illness and what my being sick means for him. And we need to stop keeping our negative emotions secret and bottled up.
The only way to fix things is to really focus on communication. Maybe over sharing would be beneficial for a while, until we get used to not bottling up. Maybe if we let it out, it won't really be a big deal anymore... and we'll be on a better track to individual and marital health. I know that if we don't, Fibromyalgia is going to drive in a wedge that may never be able to removed, and I find that to be completely unacceptable.
How do you all keep your relationships healthy? I know both Brandi and I are eager to hear what works for others.
Tuesday, May 10, 2011
I believe things happen for a reason. It might be a bad reason, not really thought completely through by the powers that be, or it may be a completely invisible one. But I do believe there is a reason for everything that happens in our lives. It's easy to believe that I got Fibromyalgia because life is unfair. I can be a victim and lay back in bed and cry away every day. I can wallow in my pain and let Life go on around me, watching and not participating
Or I can believe that I got Fibromyalgia for a reason. There were qualities and experiences in my life that I was lacking... that I never would have had if I hadn't gotten so sick. (If you have Fibromyalgia, you know the basic story of what we went through those first months/years. Someday I'll share the “how I got sick” story, but it's not really relevant to this one.)
When I hit a remission during my pregnancy, part of me hoped that I would be one of the few women that pregnancy cured. When the Fibro returned again about 6 weeks after giving birth, I had a major break down. This was NOT the way I wanted to be raising my son.
Desperation and depression drove me to begin utilizing the support groups on Facebook. I became extremely active in a particular group, and began to find friends that really understood what I was going through. My mom (a long time chronic pain sufferer) and I bonded in our pain. I read a book called “How to Be Sick,” which helped me finally accept that Fibromyalgia was just going to be a part of my life and I was going to be sharing my body with it for a long time.... the book made me realize I needed to learn to cope with my life TODAY, instead of worrying about what would greet me when I open my eyes tomorrow. I decided that if I was going to share my body with this syndrome, it was going to be on my terms.
I suppose it was natural that these terms blended into the experiment with positive thinking I started with the Facebook group a few months ago. I made a conscious effort to try to change the way I thought and felt about being sick. My life slowly improved from almost every angle. My relationship with my husband swiveled to “amazing.” Coping with a teething, crawling 6 month old was easier. I was able to let go of the things I couldn't change like the pile of dishes by the sink and the people who didn't really get that I was sick. As emotions became more stable, the Fibro did too. I'm still in physical pain each, but the emotional pain I had been under for the past several years was lifting and I began to co-exist with my illness instead of letting it run my life.
Then something wonderful happened. I didn't have to consciously implement the terms... they started to become natural to me.... and for the first time in my life external stressors and “what-ifs” didn't send me into a tailspin of emotions and anxiety attacks. I was coping with Life better than I ever had pre-Fibro. Part of me wants to wonder: “If I never had Fibromyalgia, would I have ever learned to chill out?”
But that would be against my terms, so I won't. I refuse to look this gift horse in the mouth.
Here my "Terms of Agreement for a Fibromite":
I will take all medications and supplements that may help me (and that I can afford.) I will take them as scheduled.
I will not be a martyr. If I need to sit, I will sit. If I need to go home and go to bed, I will go home and go to bed. If I need a pain pill, I will take it.
I will pace myself, even if it takes a week to clean one room of the house. If I overdo it, I will accept the consequences and allow my body time to heal.
If I can't do something I am asked to do, I will say “no” without guilt.
I will be grateful for what I can do, and not lament what I cannot.
I will not invest myself in the hope that the next thing I try will be a cure. I will not focus on a cure until there is one; instead I will focus on managing my symptoms.
I will not be ashamed of having Fibromyalgia OR taking any necessary medications. I will not let ignorance cause me additional pain and stress. Instead, I will take every opportunity I am given to spread awareness and erase ignorance.
If I can't make myself feel better, I will put my energy into helping someone else feel better. I may not be able to help their pain any more than I can help mine... but I can try to help them smile and cope.
I will not waste my time or energy on things that I cannot change, whether they are related to my illness or just a part of life. If I can't change something, then it is not worth fretting over.
And most importantly: I WILL find the Silver Lining to having Fibromyalgia. I will no longer make pain the focus of my thoughts, heart, and soul.
Sunday, May 1, 2011
It worked. Through this experiment and her support group she came to a point where she could start the healing of her soul since it was impossible to heal her body. And it seemed that people were listening.... and that maybe she was helping someone else the way that her support group helped her. Her depression lifted, the view of the future brightened, and each day it was just a little easier to face the challenges and changes to come.
At the same time, Brandi and Erin were rapidly becoming friends through the aforementioned support group. When Brandi brought up the idea of starting her own blog, Erin jumped on the opportunity and asked Brandi to join forces with her to turn The Silver Lining into an "intermediate" level support group for people with fibromyalgia. A place for the people that have come to accept their conditions and limitations and still live each day to to that day's full potential... no matter how unpredictable and variable that potential is. A place for people to share their triumphs, their failings, their heartaches, and their joy. A place for people to share their lives, not just their disease.... to remember who they were before they got sick and grow into a new and whole person even if they had to spend several days each week in bed and take countless medications. A place to learn how to cope after they accept there is no other choice other than to admit defeat.
Most of all, they wanted a place for friendships to form... because in knowing each other they figured out that the connections that had been formed despite their daily exhaustion and pain had become the true silver lining of having fibromyalgia.