My dearest loves: books, writing, and chocolate fudge brownies 

Image is copy write to me. Follow me on Instagram at thisismandyslife

The day started in pain and horror then with some med changes the flare from hell seems to have broken. Bring on all the things I love dearly but haven’t been able to enjoy!


Hip Pain, the bane of my existence


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


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?