See-Sawing

Up and down.  Down and up. Up and down.... I'm stuck on a friggin' see-saw called Fibromyalgia.

Up and Down:  While I was pregnant with my first, I had a Fibro remission.  6 weeks after having Roo the Fibro came back with a vengeance.  It chewed me up, spat me out, and then did it again.  I felt like I was paying the cost of the remission. The next months were pure hell.... (The hell many other Fibro patients face when trying to find treatment and a doctor that gives a fig.)

Down and Up:  While pregnant with Alex I had lots of flares, many migraines that sent me to the ER, and the CFS was always on my butt.  It was really miserable, physically, mentally, and emotionally.  After delivery I felt absolutely great. Some days I even wondered if I was entering into another remission. 

Up and Down: I've been trying to do better at my job as a Stay-at-Home-Mom.  I've been really motivated to get our apartment back into decent and organized shape after a lot of neglect.  I've made some leaps forward that I'm proud of.  I've cooked yummier meals in the last 2 months than I had in the past year. I've scrubbed and wiped and cleaned. And I've done it all while keeping the rugrats happy, fed, and out of trouble.  But with the increased activity, the pain has been building.  Fatigue is sinking into the marrow of my bones.  Today I heard a voice in my ear as I got out of bed (It sounded remarkably like the little girl in Poltergeist)..... "It's back!"  I acknowledged it and shoved it aside... then pushed myself to get the boys to the park.  By the time I collapsed on the couch after getting lunch made, I was done for the day.  My body was shot.  I hurt, I ached, my back burned, my fingers were about to shatter like glass... And my eyes could barely stay open.

Down:  And every time my pain levels rise my anxiety rises too.  My mood darkens.  My will shrivels.  I have to re-learn Fibro.... Again.  I had a handle on all this crap before I got "in the family way" with Alex.  I had routines, I had methods to deal with Roo, I had meds that (mostly) worked, and I was in a place where flares weren't taking me down emotionally. I was coping far far better than I am now.  But then again, I only had one kid to take care of.  Now I have 2 - a toddler in an intense "Mommy cling" phase and a three month old that needs to nurse every 2 hours.

And Up: My Silver Linings are that my hubby is still helping.  My toddler understands "Mommy doesn't feel good, it's going to be an iPad day."  My baby doesn't need much other than my boobs, arms, and some cooing.  I know that since I've figured out pacing before, I'll figure it out again.  Another is that the flares I've been experiencing have been "mini flares" and have yet to confine me to bed or render me unable to care for the kids..... And for that I am truly grateful.

I can ride this see-saw, I just gotta remember how... And believe that I can.

Illness with Fibro

Today I’m not just in Fibro pain.  CFS is rearing its ugly head, and I have a kidney infection as well.  Last night I slept wrapped in heating pads trying to keep the pain down... checking the clock every few moments to see if I could call my doctor yet.   

It really seems like there is no Silver Lining to being sick while you have Fibro.  It’s all grey and dreary and the clouds are too dang thick.  On top of your incomprehensible pain, your immune system is attacking your body as well.  It’s the final betrayal... not only has your body succumbed to the permanence of chronic pain, it has also opened the gates to more.

Except that unlike Fibro, this will pass.  Unlike a chronic illness, it’s only a temporary agony.  There are antibiotics, there is an abundance of cold medicines, supplements, and treatment plans. It’s treatable. Doctors believe in colds and infections... diseases that can be measured and tested.  Many don’t believe in Fibro or CFS (or a litany of other pain-based chronic illnesses), and finding effective treatment is nigh impossible.

Compared to the fight against a chronic illness, almost any “normal” illness becomes an easy battle.

And that, my friends, is a Silver Lining, and the only thing keeping me from collapsing from this damn pain and fatigue.

Roo

Today the pain is bad enough that I want nothing more to be in bed. When you have a little boy that is 1 1/2 years old and extremely mischievous, that is impossible. I need to be active and alert for him. I was sitting at the kitchen table a few minutes ago, resting in between loading the dishwasher, and watching him play with his cars on the living room floor. It really sounded like he was pretending the cars were talking to each other. I cannot believe how quickly this day has come.

It has me looking back on the last 18 months, and how much he has helped me cope with my Fibro and CFS... how tending to his needs keeps me out of bed and (usually) out of depression. I wonder if I would be forcing myself to move around, to pick up the house, or take a walk without him to push me into it.

He’s sitting beside me now, coloring in a coloring book and talking to me. My back is screaming at me... but he just picked up the word “blue” 30 seconds ago.

I wouldn’t miss this Silver Lining for the world.

The Waiting Game

I feel lost, although I'm not unhappy or depressed per-say.  I just don't know where I am going right now.  Everything, it seems, is in a holding pattern.  

- My social life.... being homebound a great deal of the time means I don't get to go out to play dates, or take frequent trips to the park where I could be meeting other moms. 

- My marriage sometimes seems to always be on hold as well, as my husband and I anxiously await an opportunity for the horizontal tango to not cause me additional pain, or just to cuddle on the couch without me yelling at him not to touch me 'cause it hurts.

- My education is on hold until my children are in school.  This is going to be a long wait, since I only have 1 of the planned 2.5 kids so far.  I know it will be at least 7 more years before I have the opportunity to chase after that Master's Degree in English Lit that I've been salivating over for the last few years. 

- Our financial situation is virtually on hold while I wait to be approved for Disability. We can't make real progress on our debt until we have that income. I've already received my first rejection letter and have a lawyer, but this waiting game could take years... and I'm willing to bet that it will, given my age. What is keeping me sane is that my lawyer only takes "winnable" cases, so at least I stand a good chance of eventually being approved.

- There's the pain and fatigue that never goes way, suspending us by our eyelids over boiling oil... forcing us to await the drop into a flare. I'm always waiting for the pain to ramp up, or waiting for it to go down... waiting for pills to kick in or work out of my system... you all know the drill.

I don't know what my Silver Lining is here, so I'm asking for your help this time.  Can you find a Silver Lining in this waiting game that we all play?

Revisiting My Terms

The weather's (finally) changing, the barometer is all-the-heck all over the place, i can't get warm, my kid seems to weigh 80 lbs and my body aches like I've got the same flu that gave me Fibro in the first place.  But I'm not sick, oh no... I'm just heading into a Flare.

The mindset that goes with it is nearly always the same: I feel like i want to cry. My brain says I'm a huge disappointment for letting *IT* win again.  Last night, I barely managed to cook dinner... tonight, my husband will come home and have to take over for me... again.  He'll be nurse to me and caretaker to our child, as well as chef and maid while I lay alone in our bed.  (I almost feel like I'm the second child with how badly I need to be taken care of right now.) Depression is creeping up on me like Count Dracula himself, sucking the life out of me.

Given the strength and repetitive nature of these negative feelings, I began to believe that I am no longer coping with having Fibro and CFS as well as I was a few months ago.  Frankly, being sick is starting to bug me again.  It's infuriating, because I felt at peace with myself only a few months ago.  In the search to figure out how this happened,  I realized that the Terms of Agreement for having Fibro that I set for myself have slipped completely out of my mind.

These Terms were meant to be my roadmap on this painful journey, and a way to keep my spirit in one piece and at peace.  Somehow I lost that map... and my emotions went straight back to the beginning.  I'm hoping that by "reevaluating" how I'm meeting these terms i may figure out where I'm falling off the Happy Wagon.  Therefore I begin again, hoping to identify where I got lost last time.

My Terms of Agreement "Self-Evaluation"

1. I will take all medications and supplements that may help me (and that I can afford.) I will take them as scheduled. - I've been pretty bad about this one.  I have to eat to take my pills, and since I usually forget to eat, I usually forget to take my AM pills at the least.  So I guess I need to commit myself to eating... and eating healthy.
2. 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've gotten much better at resting, but not taking the needed pain pills.  I started feeling like a donkey's rear for taking so much medication and I stopped taking the pain ones.  Stopping my pain medication hasn't helped me at all, I just feel worse.
3. 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. - Getting better at this one.... slowly....
4. If I can't do something I am asked to do, I will say “no” without guilt. - The without guilt part is still hard.  
5. I will be grateful for what I can do, and not lament what I cannot. - I have to say I've gotten a heck of a lot better at this one.  There's always room for improvement, but I am making progress in this area.
6. 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'm feeling jaded lately, and no longer believe in a cure.  When my rheumy told me that the HCG therapy could cause me as much nausea as pregnancy did, it went on the "not feasible" shelf along with going to the Fibro and Fatigue Center.
7. 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. - Oops.  By not taking my pain pills I've really blown this one.
8. 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. - Running the SLOF page and group helps me keep on track with this goal.
9. 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. - That's why I'm writing this blog, and recommitting to these Terms.  I only seem to fret when I'm not focused on them.
10. 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. - Hey, maybe I'm doing better than I thought, because I do pretty good at this one when I'm not flaring.

I'm not doing too bad, heck, one might even consider that I'm overall doing well at following these Terms. Overall, I am.... until I flare.  Then I stop taking care of myself, ignore the Terms, and just let myself feel like crap.  So I guess it's time to conquer the hard part, be a big girl, and recommit to the Terms.

Here it goes.......!

Guilt and Fibro Expenses

There are two days of the month that I hate more than any other.  The horribleness of these two days even transcends Auntie Flo's monthly visit.  Why?  Those two days are Pay Days... days where some people get to be excited that they have money again and go out for a steak dinner.  For me, though, Pay Day means it is Bill-Paying Day and I have to take our debt, our low checking account, and our virtually non-existant savings... throw it into a blender, and try to make everything fit into one gut-kicking smoothie.  And then try to make it fit into our budget.

I'm already done paying the bills for this cycle, and am teetering on the edge of a flare from the residual stress.  My keyboard feels as if it's made of tiny needles rather than smooth plastic, my fingers are throbbing and swollen, and I won't even get into the fact that my son is tugging on me and begging me to pick him up and my body just will not do it.  I want to cry... and although our finances look dreary and this isn't the financial position we planned to be in... the money isn't the part that sends me reeling into a flare twice a month and causes one of my friends to always check on me while I'm paying bills.

It's the guilt that arises when I see an endless list of huge transactions to CVS pharmacy, co-pays to doctors, and various other places where I get my herbal supplements, massages, bath salts, heating pads... and the occasional wheelchair rental here and there.  (Not to mention the other expenses... a new baby stroller I can actually lift into the car that can double as a walking assistant to me is the latest one)

I feel like it is pretty much all my fault we are in this poor financial situation, no matter what others tell me.  I know i never asked to get sick, but if I wasn't, things would be very different.  Our initial chunk of debt was accrued under the assumption my husband and I would have a dual income to pay it back... But since I've been unable to go back to work that second source of income has dried up to a grand total of.... $0.19/month. (I hold the title of Resident Manager of our apartment complex, although my husband does all the work.  We receive a small amount off our rent in exchange for keeping an eye on the property.)  The rest of the debt came after I developed Fibro and could no longer work.

I think it would be easier to accept this financial crapolla (and drastically reduce the guilt) if I was physically capable of being June Cleaver.  Keeping house, cooking, taking care of kids, etc., is a full time job and a half.  If I could handle all these responsibilities the way that I used to when I was going to school I would feel like less of a burden on my husband.

So now, after purging all of these negative emotions, it is once again time to find the Silver Lining in a crappy situation and turn my frown upside down. Here goes....

One Silver Lining is that my husband accepts all of this in stride, telling me that the amount we spend on my health is fine.  He doesn't expect me to keep the apartment in the condition i used to be able to... in fact, I think he's more okay living with dust bunnies than I am.  Another Silver Lining is the fact that I have learned about juggling our finances, budgeting, and avoid certain stores... something I would have been incapable of doing a few years ago.  I can also find comfort in the Silver Lining that this situation is only temporary... that once my SSD is approved I will be bringing in my own income and will feel less guilt about our finances.  A Silver Lining can be found in the fact that I am able to have pride that no matter what, the bills are paid and there is food on the table (when I can cook it.)

How do Fibro and Finances interact for you?  Do they cause the same problems?  Do have Silver Linings to them that you can share?

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.