The Origin Story of Fibrogirl

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Officially I’ve been at this game for four years, my fibro reality though, like so many others goes back years.

My first memory of super “this is not right at all” pain goes back to when I was 16, ten full years before my official diagnosis. I live in jealousy of those who get theirs quicker. 

But my origin story involves orchestras, and a day long workshop before the one and only performance that year of State District Orchestra, Band, and Choir.

The night before my right hand and wrist had started hurting. Which if you know stringed instruments isn’t good, that’s the bow hand, and bowing is all small and medium fine hand and wrist movements. I tried to limit my use that evening as my sisters and I prepped for the paper route but looking back, I knew even then I wasn’t dumb. I was worried about the next day and how I would hold up since my body was betraying me.

Next day only a few hours into the rehearsal, the only full rehearsal with the guest director, and things went bad fast. I was saved from my stubborn pride ( which was insisting everything was totally fines and I could play pain free) by my regular stand partner seated one stand behind me with a clear view of my face, and my younger sister in the bass section directly behind us awesome viola people, and also with a clear view of by face. They knew my facial expressions, they knew I was lying through my teeth when I said I was “fine” and they were the ones who got our regular director during a break and explained that something was wrong. And pushed back at my “I’m fine” because I was working that concept as best I could then, I’m better at it now.

I didn’t play the rest of the rehearsal, just did the fingerings on my instrument as it sat on my lap. That night I l only played one song, the one with the easiest bowings.

My director was the first to suggest it might be just “growing pains” to me and my parents, but hey he did also suggest we see my doctor.

Thus began a 10 year odyssey of pain, being ignored, taking at times the absolute max of over the counter painkillers, all for little to no relief. Until finally, the Rheumatologist in the first 5 minutes of meeting me and examining me gave me the diagnosis I knew at that point had to be coming. The one Neurologist #2 had suggested off hand and dismissed in one fell swoop 2 years earlier. ( point of order kids go to the Rheumatologist not the Neurologist # 1,#2 or #3, Rheumatologist knows more in this case.)

That’s my origin story. How I became a Fibrogirl. I’m not the only one out there. The more we speak up, the more we all showcase what makes us, us, the survivors and spookiest of chronic and invisible illness the more the world will see us.

Hip Pain, the bane of my existence

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Seriously you would think any pain would be the bane of my existence, right? Nope. Nope nope nopity nope. It’s hip pain. Knee pain is in there too, as a secondary, but it’s all about those hips.

When you can’t sleep because it feels like you’re hips are being crushed and separated all at the same time? That’s a magical sort of hell. When you have to surround yourself with pillows to prop up your aching body and it still hurts because OMG it’s touching you, but it’s a soft touch and it’s providing some support so you deal? Yup it’s that pain. That lovely pain of multiple Epsom salt baths a day, and if possible dips in the pool just half laying on a raft letting your body chill in the water. It’s weird, it looks uncomfortable as possible but it helps.

It’s that pain where if something takes the edge off you’re all for it. Because anything is better than nothing. And you never ever forget a dose of meds because you are up for all forms of pain relief.

This has been my world for about a week. I can’t really sit for long, I can’t lay down for long, I’ve had so many baths Ive run out of Epsom salts mid week and cried about it in the middle of the night when I just wanted a short bath to take the edge off.

Anything is better than nothing. Nights are worse than days. And little has been interesting to me. I’ve been slowly slipping into my fibro!depression where nothing matters and nothing is of interest. Not friends, not books, not favorite genres of anything.

Not my favorite mental place to be. But it’s an honest look at where I am at the moment. Tomorrow might be different. The pain might break sometime today or tonight. I can only hope it does. Mentally it’s hard to take. Even when you have practice.

When you all have your worst type of pain how do you all deal? Or not deal?

Episode 3: The Things I’ve Lost Part One

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Generally I don’t put much care into how I look anymore. Am I as healthy as I can be at this point, am I taking some steps forward, am I generally keeping up with my myself that’s all I’m after. Especially on bad days I just don’t care much. Soft gentle clothes, especially leggings and t shirts or tanks and hair in a messy bun. That’s my look.

But I used to dress nice for work. Makeup everyday or at least most days. Hair not just brushed but up and in a nice bun or pony tail. Maybe even down. I would wear heels some days.

Nice shoes when necessary are wedge heels. Im too unsteady even with my cane and physical therapy to pull off heels themselves. Mostly nice shoes are flats though. If I wear makeup it’s concealer and bb cream or foundation. If I’m super doing well lipstick. Because a) I love lipstick and b) my GMM taught me to be polished when I leave the house. I’m just rarely so polished anymore.

So in the things about me I miss, it’s having the energy to look nice. Winter, fall and spring my work look involves scarfs, my ever present fingerless gloves (woven and going up to at least my elbows) and some form of sweater or cardigan. I generally also wear tights and pants or jeans. Even though my skin hates all the contact the clothes give, nothing else is as big a “keep away no touching” signal I’ve found. And in a building that is always always cold I can stay a little warmer in the cool and cold months. But keeping up with my hair or my face? That’s rare and requires good days. And I love makeup. I love messing with my hair and having others do my hair. I love wearing makeup. So having lost this part of me? It feels as devastating as losing my balance and ability to walk without an aid has been.

What thing have any of you lost that has been devastating to you and how have you reclaimed it? Or tried to?

The Never-Ending Flare From Hell

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Lately I can’t seem to get out of this flare. I’m still trying to be active within it, going to work as much as I can, going to baseball games, going to physical therapy, but nothing seems to be breaking the flare.

Result? I feel awful and am starting to sink into old bad habits. I’m not walking as much. I’m not interested in things. And I can feel myself starting to sink into the pain depression of chronic pain.

Things will turn around. They always do. The flare will end. Maybe not when I want it to, but it will. And until then I just have to focus on not letting it control me.

Sometimes it’s the Small Things

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When things get hard and I need a fast way to feel a little more human and a little better, a quick face wash. Once with an exfoliating facewash (I love Simple brand) and once with a gentle cleanser (again I love love love Simple brand and I also love Garnier SkinActive.)

It’s a fast easy way especially in summer heat and humidity to make me feel a little more human. It doesn’t take away pain or reduce it, but reclaiming moments of humanity and feeling comfortable in my body are just as important to me.

Anyone have their own favorite facewash products that help with the inevitable sensitive skin issues of fibromyalgia? Or some small way that lets them feel more human and better even if it doesn’t reduce pain?

Disclaimer: I am not paid in any way shape or form to mention Simple Brand or Garnier SkinActive. I buy both with my own money and use them. This is not a sponsored post or ad.

Self Care Saturday

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Take a bath. Take a bath with Epsom salts. Especially if you hurt like hell it will help. I am terrible about remembering to do this simple basic thing that I like that helps.

Even if you don’t hurt, take a bath. Put in a bath bomb. They aren’t all super expensive and exotic. Well they are exotic. And fun. You can find them on a million Etsy stores, you can find recipes to make your own if your into DIY, and more and more stores are selling them. I can pick up a pack at Ulta or at my local grocery store or any box store. Also Amazon if you prefer that. Basically, they are relatively easy to get ahold of or to get ahold of the ingredients if you want to make your own. A gazillion Etsy stores selling them online can’t be wrong on how (relatively) easy they should be to make.

Me? When I hurt like hell and my hair hurts I pull out Dr Teals Epsom salts, and today at least the foaming bath as well. Since today was bad, last night was lots of rain and storms and mostly painsomia for me followed by an early morning for work, I used the Therapy and Relief with Rosemary and Mint Epsom Salts from Dr Teals, and the Relax and Relief with Eucalyptus and Spearmint Foaming Bath from the same. Now I own both, I bought and buy with my own money and will continue to do so. (There’s your disclaimer that this is not an ad or sponsored!)

I always feel better after soaking, especially on the super bad, my hair hurts days. Its basically magic.

I get that for a lot of people taking a bath is a pain in the butt or not really possible. Maybe you don’t have a tub, maybe you aren’t physically able to manage, maybe you have kids who won’t leave you alone for 20 minutes to soak away pain and tears. I get that. If you can borrow a friends tub and you aren’t weirded out too much, ask if you can borrow to have a soak. If you have physical issues managing, ask for help if you can. I walk with a cane and managing getting into a slick bath on my own is a minor terror. If you have friends, family, etc who can help even installing in hand holds to help, asking never hurt anyone. If you have people in your life who can help get you in and out and your not shy again, it’s all about asking. I have several work friends who used to be home health aids or otherwise worked in that industry and while I’m sure they would totally help me if I needed it with professionalism and even humor (we’re the same age we’ve got to laugh a bit right? Or I have to laugh at myself) I would still feel awkward I know. But again, ask if you need assistance. Even family. My mom helped bathe my grandmother, my GMN, for several years, and when she would get stuck in the tub and couldn’t get out safely would help get her out. So I know I could ask there. So there’s options, they just all involve me needing a great sense of humor and letting go of maybe some of my body issues. (But that’s another post!)

As for those with kids. Since locking them out is apparently bad form, see if a partner or spouse or even a friend can occupy them for 20 to 30 minutes. Or a grandparent. Use the support network you have as a parent and a spoonie.

Also if you are in an area with high lead concentrations or other water contamination, this might not be an option at all. If you can get a filter that will work and filter out whatever contamination is in the water and you can afford it, I recommend to do so. If you cannot, I understand, water rights have become a major civil and human rights issue in the last several years. If there is anything the chronic illness community can do to assist that you feel would be immediately impactful and good don’t hesitate to leave a comment. If I can help even with just a signal boost I will, if I can do more, and let me know specifics on how and what, I will fight for you and help. We’re all in this together.

If you can, if its an option, I highly recommend this basic easy method of self care. Not all self care has to be expensive, the best methods are free or cheap. Or at the least, and most importantly, make you feel better. If something helps you feel better do not ever apologize for using that method of self care. Unless it’s spending tons of money you don’t have that’s probably not a good idea. But still, self care is self preservation, and for us who hurt, for us who ache, for us who are ill, it is as necessary as doctors appointments and medicine and understanding.

A life reminder that I sometimes forget especially while in a flare. I am Wonder Woman. I am a fighter. And I will always win.

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I just got out of a 5 day flare from hell. The first 4 days I still went to work and functioned even though it was trying to break me. The 5th day I couldn’t move when I woke up in the morning. More than just my typical morning stiffness it took til when my “lunch” would be at work for me to move without wanting to burst into tears. The 5th day broke me. After that I rested and came out of the flare.
Facebook has two Wonder Woman filters right now. A regular one just for Wonder Woman and one that ties to Justice League, I took a few pics and posted them on my insta to remind myself I am strong, I am a fighter, and I am a Wonder Woman.

(can you tell the movie was an amazing brilliant experience for me and I want to see it again a million more times?)

SideQuest 2: Music for the Soul

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I’m trying to adjust from a second shift to an early first shift schedule at work and well…it’s going about as well as anyone would think. I’m drinking too much coffee, not enough water, and the adjustment on my sleeping schedule has me sleeping 17 hours on one off day and nothing on another. Oh and I have no desire to walk or move or do any of my exercises. So all round I really want the adjustment period over. Between then and now, and even after, music will be the thing that feeds my soul while my body tries to reject sleep as a concept.

Hamilton is a major major favorite. It has been for a while. If I need to get pumped up, or get ready mentally in any way for anything, Hamilton is a great way to do that. Guns and Ships, Yorktown, My Shot, Nonstop and The Schuyler Sisters from Act 1 are all a great way for me to sing or rap along and get ready for the day.

90s girl pop is also something that I listen to and that helps me a lot. The cheesier the better. Spice Girls, Billie Piper, Brandi, Brittany Spears, etc, it is the music of my childhood/ adolescence, and when I’m heading in to work it can help. The 90s boy bands too. I don’t choose between N’Sync and BackStreet Boys, I adore them both.

Thing is these help get me mentally ready to head into work and to deal with pain. Because let’s face it, the pain is omnipresent, it’s always around.

In a way the music gives me a little bit of power over it. A way to Bad Wolf myself over the pain, I can create myself anew when dealing with it. Music gives me that extra jolt of energy on walks to go a little further and do a little more. It gives me the jolt i need to deal with pain when I can’t manage it any other way.

Anyone have any music they love or that lets them deal with the pain better? Personally I’m always willing to find and try out new music, so share!