In October, it will be 9 years since that fateful day when the random pains first hit. 9 years since getting sick. 9 years since my entire life (at least as I knew it) would end. 9 years since beginning the most epic battle of my life (and I’d already battled some real doozies, let me tell ya!). And 9 years experience living with Fibromyalgia (and a whole host of other ailments, but who’s counting?)
And 9 years ago, I never thought I could ever find peace within myself again or that I could ever let go of all the turbulent feelings of loss, guilt and desperation that I felt in the beginning. Yet here I sit, in my carefully constructed home bubble, with just that; inner peace. Peace doesn’t mean that I no longer wish things were different or that I’ve stopped hoping that someday they have more effective treatments. It’s just a place that has finally found acceptance with the circumstances with which I now live.
I think one of the ways I’ve arrived here is by taking the crummy things, mourning them as I let go and then finding new ways or things to love. It has not been easy and I still falter. Some things, I just can’t get around how very, very much they suck. But, for as much as chronic illness steals each of our lives, I won’t allow it to destroy me in the end. It cannot win, too.
So, as I look at all the things I’ve lost, here are the top 13 I’ve come up with AND how I’ve gotten past those losses:
- Vegetarianism. Adoring animals all my life, being a Vegetarian was always a natural choice for me. I could never handle eating something with a soul……and I still can’t. But two years ago, my Husband Bri vehemently fought me that I needed to eat meat. I was so thin and so sick, I could hardly move. So I conceded. I’m not cured, however, I can move. So as abhorrent as I find eating meat to be, I do it. I only eat meat that is humanely treated and free range. I also apologize before I eat it.
- High Heels. I loved shoes! Well, present tense, I still do. But my knees can’t handle them anymore. I recently bought a HOT pair of heels for my Daughter’s Wedding Shower. Two hours in, I was in so much pain, I was having trouble standing. So, I have now found a love for Chuck Taylors. I never had a pair as a kid, but they come in SO many cool colors, even flowered! It’s made needing to always wear sneakers a little more pleasant.
- Driving. Did I mention some of these losses REALLY suck? Not being able to drive is one of them. I’ll drive locally, but I don’t like it. I can get sick at the drop of a hat-so beyond it being massively inconvenient if someone has to come bail me out, it can be dangerous if I’m not on a backroad. As much as I hate not driving, I think my Husband is happy it’s somewhat curbed my love of shopping. LOL
- Tennis. Bri and I used to play tennis when we were first dating. It’s not that we were ever any good, it was just alot of fun. Once we got married, we used to take the kids to play. Now that the kids are all out of the house, Bri has no one to play with. So, we’ve come to treasure our dog walks.
- Independence. Ugh. Last week, I went food shopping on my own. With working overtime and going to college, Bri doesn’t get a ton of down time. So I hate using what little he does have, to do things like food shopping. So I did it, but it didn’t go well at all. I got sick in the store and spent the afternoon recovering. It’s the little things, like that, that drive me crazy about always needing a chaperone. The stuff you never considered, like going to the Doctor, becomes an obstacle in life. Things like not driving and not being independent can really get you down; until my Daughter reminded me last week that she doesn’t mind helping. It gives me more time with the people I love. It does scare the hell out of me to get old though.
- Working. I miss feeling accomplished. I miss the sense of satisfaction for a job well done or for the ability to chat with people. I miss being proud of what I do. At the end of my career, I was so sick, it became impossible to do anything but work and the quality of that work was not what I had always aspired to. When my boss kindly agreed to lay me off, I was grateful to have unemployment for a while to transition into being home and unemployed. While there’s still things I miss, my health has now improved enough to no longer be bedbound. That’s due, largely, to the careful little bubble I now live in. That bubble is only possible through my being home and on disability. And while I’m still couchbound about 50% of the time, it’s still a huge improvement.
- Travel. It used to be nothing for me to travel alone for work. At the height of my career, it was two or three times a month. We hoped, then, that we would eventually be able to travel for pleasure. Doesn’t everyone? These days, any travel, whatsoever, is a huge challenge for me. I get super sick everywhere we go and end up needing down time to recover; even when we only travel from Massachusetts to Maine. The thing about shorter trips is, I can actually get back up after resting. We hope that eventually, maybe we could get to see Hawaii, but beyond that, we now settle for getting to see the ocean. Let’s face it, any beach is beautiful.
- Aspirations. The last set of goals, I can really remember setting, were to be able to get my Volvo SUV and to pay off the mortgage (didn’t hit either of those before I retired). Now, some days it’s as simple as showering or sweeping the floor. It’s not that I’ve given up on life, it’s just that setting goals too far out of reach only reiterates those feelings of worthlessness that bubble right under the surface. So now, I keep it simple. Eat healthy (as often as I can), rest often, blog as I can. While I’m eventually hoping to write a book; it’s simply that: eventually.
- Sex. Name something that makes you feel more guilty than not being able to have sex (very often)? I’ve cried 100 times for my poor Husband; we’re still young and were still sort of newlyweds when I got sick. It just shouldn’t be something you’re forced to skip. Thankfully, we communicate, even about the tough stuff. Now, I initiate when I’m not sick or in pain. We’ve learned to try different ways or angles. AND my Doctor prescribed muscle relaxers to help make it less painful. It still isn’t ideal, especially for a guy. But talking, being honest and taking meds has helped remediate some of the biggest challenges.
- Spontaneity. Yeah, what was that word? I don’t remember because it no longer exists. These days, we plan everything and pack for it. While I choose to laugh about it and call it a “baby bag”; in all seriousness, we even pack a bag for the grocery store. Big events are carefully timed and planned, like my Daughter’s wedding. While the excitement may be slightly diminished, I’m happy I get to do things, when they’re adequately planned for.
- My hair. I cannot get around how very, very badly this one sucks. My hair is nothing remotely like it once was. We originally thought it was the low dose Chemo they tried, but my hair never came back even after we stopped that. My once super thick, really curly hair is now super thin and losing it’s curl. Of all the things I’ve lost or had changed, my hair has hurt the most. It was one of the things that attracted my Husband to me and was always sort of my signature. I can’t change this and nothing I’ve done has been able to improve it. These days, I use sulfate free, healthy products, I don’t towel dry it and I get it cut often. While I hope it doesn’t come to it again, I’ve resorted to wigs before. It is somewhat neat to have the straight hair of a wig.
- Money. Ahhhh yes. I cannot say enough how much I miss my salary. Disability is about what I made per week, before getting sick. When I first retired, it was like financially freefalling via somersaults. It’s not that we have ever lived extravagantly; but losing half your household income makes paying the bills quite a challenge. For a while, we thought we’d even lose the house. Thankfully, we were able to eventually adjust and now, I’m just grateful to have Disability.
- Eloquence. Oh Lord…….I saved a huge one for last. I actually wrote an entire blog post on “Why Fibro Affects Your Speech”, which you can find here: https://fightingwithfibro.com/2019/01/12/why-fibro-affects-your-speech// I used to pride myself on my ability to speak eloquently and public speaking was part of my every day job. These days, I try to stop myself from even interacting with strangers at the store. I can’t find my words, can’t remember what I was thinking of or worst *of all*, I have some weird glob of words come out of my mouth that I never intended. It’s embarrassing and belittling. As a family, we laugh about it. For me, I think it’s another aspect that I’ll always struggle with, like my hair. Since I can’t find a work around, now I just try to put it out there and talk with other sufferers. At least we know we aren’t alone in that struggle.
Fibro and chronic illness take hold of your life and throw it in a blender. It gets jostled around, chewed up, makes a mess and looks NOTHING like it did before it got pulverized. More often, it results in a liquidy, watered down version of what once was. But for me, there’s only two options:
- Let it steal your life
- Add some ice and grab a straw to drink what’s left.
Since I’ve always been a bad loser, I choose to drink up the mess I’ve been left with. That’s the control I still get. Just remember, everyone chokes on the lumps 😉
With Love, Stace <3