bad day

[deza]

I mentioned to a friend that I was having a bad pain day today. She suggested a hot water bottle. While I truly appreciate her concern, it occured to me that she just didn't get what I meant. Then again, how could I expect her to know what it's like? I don't talk about it. If you live with a pain disease, you know what it's like.

So, here's what I mean by a bad pain day.

When my alarm went off, I was already exhausted. I don't sleep well at night; I keep trying to roll over onto my bad knee, which wakes me up and leaves me staring at the ceiling until the pain dies down. So the alarm goes off and Guinness jumps off the bed to be my brace so I can actually stand up and grab the walker. I yell at the kids to get moving and make my way to the bathroom.

I generally use the walker in the mornings. The doors in my house are the same width as my wheelchair, so getting from room to room is difficult at best. I'm in full flare, though, so every time I move with the walker, pain shoots up my wrists and radiates across my back and shoulders. My "good" foot is having fasciitis problems, so standing on it feels like standing on a small canvas bag stuffed with marbles and nails.I have a bad tendency to try to balance myself with my bad leg; it ends up feeling like my knee is being twisted out of socket. This is what I get with every.freaking.step.

There are 6 steps to the toilet, 14 to the kitchen, 27 to the car.

I get the kids up, dressed, fed and out to the car. I can't dose up on pain meds yet because I have to get them to school. By the time we wait through the 20 minute drop-off line, I'm starting to cry from the pain of the redhot iron poker that's replaced my spinal column. I'm so tired I'm having problems keeping my eyes focused on the way home.

I stop at the gas station for a quick hit of sugar and caffeine before I drive off the road. I bite my lip hard enough to bleed as I shuffle-hop to the back door of the car to pull the walker out. The pain of using it hasn't let up. As I'm heading toward the door I get shouldered aside by a pair of day laborers. They make a comment about fucking cripples never getting out of the way. Needless to say they don't bother holding the door, so I get to struggle with pulling it open, maneuvering the walker (which is bulky enough to need two hands) and keeping my balance. The laborers find this entertaining. Sunny the manager is kind enough to go grab my soda for me instead of me stumping through the whole store. I paste on a bright smile and thank him profusely before heading out. Fortunately getting the door open from the inside is a lot easier as long as I remember to lead with my butt.

I make it home, finally take my pain pills and stagger to my bed. Once the meds kick in I'll be able to stop crying. If I'm lucky I might even pass out for a while.

This is a bad pain day. I have far too many of these.

Comments

[miintikwa.livejournal.com]

*hug* I hate bastards like the laborers. I see too many of them.

To counteract them, I will share the lovely thing I saw the other day. A beautiful woman using a cane and moving stiffly-- obviously, to me, in a great deal of pain, but perhaps to others just looking stately-- was heading towards a convenience store door. (I was in the car while C pumped gas.) A pair of teens came out the door as she arrived, and instead of barrelling past her, as I expected, one of them held the door for her, smiling brightly at her. They exchanged words, I don't know what was said, but the one who held the door beamed all the way back to the car.

It was lovely, and gave me hope.

[deza.livejournal.com]

It's wonderful the teens were so polite. I wish more people were willing to take 10 seconds out of their day to help someone out.

[miintikwa.livejournal.com]

Amen to that.

[jerel.livejournal.com]

As we say, their mama raised 'em right. ("Mama" of course can be a substitute for whomever actually did raise them--with manners and consideration.)

{{{{deza}}}}}

[miintikwa.livejournal.com]

Amen to that!

[thewenchywiccan.livejournal.com]

*hugs* ♥ I don't know how you do it.

[deza.livejournal.com]

I do it because there isn't an alternative. We don't live on the bus route. If - don't drive them in, they don't go.

[thewenchywiccan.livejournal.com]

*hugs* Oh I understand, you have to do what you HAVE to do. I just wish it wasn't so rough on you. My Mom lives with Chronic Pain too, and I just can't imagine. *hugs* :(

[bouncepogo.livejournal.com]

In our county bus transportaion is mandatory if you don't live within walking distance of the school. A bus stop can be no further than a half mile from the house. Try calling the transportation dept and explaining your situation, you'd be surprised how easy it is to get them to make a exception/change.

Are there any fast food drive thrus you can hit for a soda so you don't have to get out of the car unnecessarily?

[deza.livejournal.com]

The bus situation is complicated. We lived at mom's house when I registered the kids at the school, and I chose to not make them switch schools a month later when we moved to our own place. There's a bus that goes by in the mornings; it just goes to a different school.

And I live out in the sticks, hon. The gas station and grocery store have only been here for the last 5 years. The closest drive-thru is 10 miles into town.

[heathrow.livejournal.com]

I think that if you changed their schools, your life would be SO much easier. Your medical situation is going to require some accommodations from the kids, I fear. Does the closer school have decent test scores?

[deza.livejournal.com]

It's not as good a school, no. The kids are already about to get yanked out of this school, which they absolutely love, in a month or two when we get the final orders for North Carolina. I'd really prefer to traumatize them as little as possible.

[heathrow.livejournal.com]

I can definitely understand that desire to not uproot them twice in a couple of months, but this is so much abuse on your body right now. Is there a non-sedating pain medication you can take first thing (like a tramadol) to get you through that first hour til you get home?

I wish I was closer so I could do more for you.

[deza.livejournal.com]

My current drug cocktail is tramadol, naproxen and oxycodone.

[heathrow.livejournal.com]

Would staggering one of them by an hour mess things up horribly?

[deza.livejournal.com]

Unfortunately yes. If I take enough drugs to be functional, my judgement and reaction times are affected enough that I'm not a safe driver. :(

[heathrow.livejournal.com]

I understand. :( I tend to think of tramadol as a "safe" drug because I've had it a few times and it's bounced off my migraines with no effect. I guess I've had not had enough or my mind was not in the right place (heh!).

I apologize for butting into your business with this. I have my gal pals with who also have migraines, and we have to tweak our medications in order to fight the good fight. (We have our daily meds, the abortants, the meds to take when there is a 3+ day migraine, and what you get when you go to the ER when the migraine has moved in.)

Last suggestion for the night: have you told your doctor about your daily schedule? He/she may have another trick up his/her sleeve.

[deza.livejournal.com]

If I didn't want opinions, I wouldn't have made the post. ;) I really do appreciate the suggestions!

I've had a few low-grade migraines (brought on by stress or med reactions) and I've got nothing but respect for y'all that keep functioning through them on a regular basis.

I've got a couple of appts next week, so I'll ask around for ideas. Wouldn't it be nice to find a med that let's you wake up refreshed, active and pain-free?

[heathrow.livejournal.com]

That would be the Holy Grail of meds. :)

[ladyleo.livejournal.com]

SO agreed.

[maradydd.livejournal.com]

What do they give for a 3+ day migraine? I've got Maxalt as an abortant but lately I've started to have migraines that it doesn't touch, and which go on for days.

Sadly I can't go on beta blockers as my blood pressure is already low enough as it is.

[heathrow.livejournal.com]

A course of anti-inflammatories usually, such as prednisone. I've developed an allergy to it (which was a fun trip to the ER), so I'm on meloxicam, which is in the same class but not as effective. The course will last for 5-10 days, but will normally break the migraine in 2-3 days.

You can also go to urgent care or the ER and get a shot of demerol/phenergan to knock the headache out quickly. Neurologists _hate_ when we do this because it's an opioid. For really entrenched migraines, it can come back as soon as the shot wears off. I had a nasty 23 day long migraine where I had 2 shots and it kept coming back. I went on a 10 day course of meloxicam and it finally died.

Are you on a preventative like topamax? It works for a lot of people. Also, do you belong to the migraines community? Lots of good people there. :)

[these-3-remain.livejournal.com]

I wish I was closer so I could do more for you.

I said the EXACT. SAME. THING.

[deza.livejournal.com]

And you are both incredibly sweet for feeling this way!

[heathrow.livejournal.com]

:D

[these-3-remain.livejournal.com]

So many of my friends deal with chronic, painful illness. I wish I was closer so I could be of some help to you :-(

[millysdaughter.livejournal.com]

**hugs**

I wish I could help, but I am too far away to help with the morning drive. I hope the new duty location will offer a school bus service.

[tomassilverloc.livejournal.com]

*light hugs*..I wish I lived close to help you, I hate seeing you in this much pain.

[paradoxymoron.livejournal.com]

http://www.butyoudontlooksick.com/the_spoon_theory/
Have you read this?
http://www.butyoudontlooksick.com/the_spoon_theory/


This is the part where I say inappropriate things. You were warned.

---

Dude, you totally need to develop your metnal-y skills so you can just telepath the kids awake. Plus? Shaving your head? Tooootally makes getting ready so much easier. Bad news? Some scruffy Canadian guy will call you Wheels.

[deza.livejournal.com]

I first heard about spoons back in 1992 when I was getting chemo.

[ayoub.livejournal.com]

I hope the days become less frequent...

[deza.livejournal.com]

Thanks. The current flare started in early June. Bad flares like this generally last from 4 to 6 months. The longest so far lasted a little over 9 months.

[vvalkyri.livejournal.com]

;leaves pebble

[ladyleo.livejournal.com]

Darlin, I have you in my thoughts. I wish there was more I could do, even though we are "local" we are still a ways away :(

Much love, and hope that the pain days lessen. I wish I didn't know of what you spoke of. But you describe it so well.

[magickcat.livejournal.com]

*hugs* I can definitely relate. Haven't been able to read all that much lately due to my own issues, but wanted to pop in and let you know I am here.

[fallconsmate.livejournal.com]

I've had months on end like that. I am so sorry you are having to go through this.

*hugs*