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.

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?