Credit and Fibro

While reading the book How To be Sick, my view of life changed pretty drastically. I began to view Fibro as a separate entity residing in my body... a parasite, or second personality. I'd talk to it. I'd bargain with it. I would tell it that if I could have a low pain Saturday, I'd stay in bed all day Sunday.  And with that separation between Erin and Fibromyalgia, I began to gain some understanding of my own fight with this illness and how to live around it. I never considered that with the bargains I was making, I was really learning to manage my energy and pain levels. I now know that my energy is not that dissimilar from a credit card with horrible interest rates and a really low limit.  Any energy I expend reduces my available "credit."  Overdoing things and pushing myself past my body's limits is no different than going over my credit limit. And just like with a credit card, I will have to pay everything back with interest if I don't repay the loan immediately. With this view,  my medications, pain pills, and naps seem no different than the monthly payments I need to make to protect myself from additional "fees" like a flare. I learned that paying my "bills" on time and not going over my limit made the pain shorter, and often less intense.  When it's time for the Fibro to collect and my bill is due, I surrender without a fight... Because I accept that I took on this debt.  By accepting that I would be paying for every activity with interest, I began budgeting my energy the way I try to budget our finances. I manage my energy usage the way I do my credit cards... And like with the credit account cards, I get better at it every day.

Lessons from Mom....

As I lay in bed unable to keep my legs from spasming in response to the intense stabbing pain I am experiencing, I am overwhelmed with a intense feeling of respect and love for my mom.  Not only am I a mom fighting against chronic pain, I am the child of a mom fighting against chronic pain.

In my earliest memories my mom hurt. I cannot remember a time when she did not have pain in her back, her feet, or her hands. I remember wrist braces and chiropractor visits... On one of which I screamed at the chiropractor to "Stop hurting my Mommy!!" because she was yelling every time her cracked her back. (I think I was about 4.) 

I remember being a teenager and growing frustrated at her for not wanting to take me to the mall, or for never having the stamina to keep up with me. Her feet hurt, or her back... And we would have to stop and go home. (Granted, about half the time we had to go home in order for dinner to be on the table when Daddy got home.)

We didn't always have the best relationship... looking back I think some of that can be attributed to the fact that I didn't really understand what an hour on her feet could do to her... I didn't really understand the pain. And the fact that I was a teenager probably didn't help much either.

But now, I'm grasping what she went through. Oh boy, I definitely do.

I find myself filled with a new-found appreciation for her strength now that I am facing my own battle with chronic pain. I am thankful for each second she gritted her teeth and pushed through that one last store for me... And I am selfishly thankful that she still does it, because I have more fun out in the world when she is by my side. I am extremely grateful to her for every move that she makes to play with my son and spend time with him... I know it is hard on her physically, but watching the joy on their faces when they are together makes it obvious that it is worth it to her.

While my body is not coping well with Fibromyalgia and CFS, my soul is. And I can credit my mom for showing me how to keep pushing through the pain to keep my family taken care of... And for teaching me that I need to let them take care of me, too. 

I am grateful to her for teaching me that you can still laugh even when you hurt, and that it is okay to cry when it hurts too much to laugh. While I wish that neither of us had had these experiences, the closeness that pain has brought us has become another Silver Lining of Fibromyalgia.

The Cane Belongs to Fibro, Not Me....

Tonight I was going through the posts in my support group and came upon one that struck close to home. A friend was wishing for her old self back... not liking the changes she has had to make in her life to compensate for her Fibromyalgia. She lamented the need for a bath seat, and a cane. Yesterday another friend texted me for hours, trying to accept the fact that at 30 she is taking more medications than a friend who is a cancer patient.

I'm younger than both of them... and I've already had to make these adjustments too. I made some of them long ago (I've been on medications since I was 15), while the safety bar in my shower was only installed hours ago. At the ripe old age of 26 I got to walk into my apartment complex's office where I used to be a manager and request a safety bar so I could get out of the bathtub on my own. Talk about killing a girl's outlook on her future!

But as I was reading the posts tonight, it hit me. It doesn't matter what I need to do to get around, because it doesn't change who I am. Canes, walkers, braces, multiple ice packs, pain medicines, multiple tubes of Bengay on the dresser, heated car seats, hours and hours in a bed... that's NOT ME.

It's that thing I share my body with... Fibromyalgia.

Because I still laugh, I still cry, I still smile and frown... I still love my husband and my son, worship the ground my daddy walks on, and consider my mommy my best friend. I am still Auntie to 9 amazing children, and mommy to a little boy so beautiful and smart I still don't believe it's possible he came out of this body. I still love to read, get all tingly at the thought of seeing Phantom of the Opera live, and love chocolate. I still think that green olives are nasty, and black ones nearly ambrosia.

While I might need a cane sometimes, and might need it all the time by next year... and whether I take more medications than my near centenarian grandmother did, it doesn't change the fact that my dream trip would include seeing every place that Laura Ingalls Wilder lived.

If I've changed since Fibro decided to join up with the CFS... so what? I am a stronger woman, I have more compassion, and more perspective. I have developed new passions that I frankly enjoy more than my old ones, and I am actually liking who I am for the first time in my life.

And of course, if I never had Fibro, I would have never met so many amazing people and made so many caring friends or been a part of something so accepting and inclusive as this very diverse group of people who share so much in common.

So there ya go... that's a heck of a lot of Silver Linings to my Fibromyalgia.

Fibro, Food, and Me

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?

The Way We Were....

Due to events that have been happening to the members of my support group and in my own family, I find myself contemplating why it is that our parents and other family members have such a hard time accepting our Fibro/CFS and the fact that there is no miracle cure that will return us to normal.

They express their concern to us on a regular basis... telling us that if we eat better, take supplements, or just get up and move that we will feel better. The gut reaction for most of us is to put up large and rather thick walls, because this advice just makes us feel like our family members just "don't get it."

I think it boils down to something extremely simple... they just don't WANT us to be sick. They WANT us to be healthy, and having to face the fact that the child that they raised for so many years is doomed to spend the rest of their life in pain is extremely hard for them to take... so they grasp at straws, trying desperately to heal us but only driving us away. There is a strong desire within them to pretend that our illnesses do not exist, hoping that by ignoring the pain it will go away.

What are your thoughts on the matter?

Friendships

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.

"You've got Fibro and a BABY?!"

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.

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