Working, Thinking, Being

I’ve been working a little bit as an independent contractor. And it’s been keeping me busy. All of a sudden I’ve had to deal with several bosses all at once. Also, I’ve had to deal with some ghosts of graduate school. It’s been kind of rough and pretty tiring.

I’m trying to remember to just be. And not to let anything get in the way of who I am. But it can be tough.

I suppose we never finish growing up.

Abigail

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What Chronic Fatigue Syndrome & Ehlers-Danlos Syndrome Feel Like

For the PFAM carnival, Duncan wants to know what my illness feels like. Well, Duncan, since you asked, my illness feels like ASDLKHGA[OYI2(&^#!$LJBFAPDGI09*^@~(*^{KLJAHSDGO[YAWEGFB;L. Got it? Oh wait, that’s how I feel about my illness.

imagine being the pea (rather than the princess)

What does my illness feel like? Well, it’s awful. There are no words to describe it. It makes you feel like you’re buried under a mountain of mattresses and like you can’t get out. In order to do anything (like walking across the room and putting your laundry away), you feel like you’re a robot trying to learn how to walk while waist-deep in an ocean of molasses. Things like light, smell, food, and inpatient people stress me out and stress causes pain which causes fatigue which causes me to lose weight (but also have something to talk about in therapy.) Illness numbs my mind so I easily lose my train of thought or just can’t think because wait, WHAT are we talking about again? That’s what chronic fatigue syndrome feels like.

Plus the pain. I don’t have any way to adequately describe the pain. Except that a pain scale of 1-10 is just WAY too simplistic. I can tell you about persistent, throbbing, intense, background, fluctuating, numbing, stabbing, and localized pain. I can tell you about achy pain, about the feeling that you can’t use your eyes or ears correctly & you guess that can be called pain too?

Ehlers-Danlos syndrome or a connective tissue disorder (if that’s what I have). Well, pretty much that means that anything is more dangerous, so you’re constantly having to be alert. Try doing that at the same time as battle brain fog. There’s no point in trying to have energy for anything else. Anyways, I have to be really careful when I walk or reach for things or lay down or write or whatever, because my body is super flexible. That means I can sit in some really awkward position and not even realize it until six months later I’m trying to figure out what that stabbing pain is in my hip. Oh? Sitting with your legs double-crossed isn’t normal??? Ooops. My left elbow gets pulled out of joint pretty easily, so I have to make sure I don’t slam that elbow against the wall while I’m asleep or try to lift things with just my left arm. It means that I fall really easily so I have to wear tennis shoes all the time, and even then I’ve fallen on flat surfaces and had to spend months in physical therapy. It means that I can’t wear fun shoes like all my friends and they like to make fun of me for it. It means that I have to wear long sleeves and leggings if I want to be outside at night in the summer; why? Because I bruise really easily and mosquito bites turn into bruises and then I look like a victim of child abuse or maybe domestic violence now that I’m older. It also means that I don’t have a typical response to almost anything, so add a huge amount of frustration to everything.

in case you forgot what Oscar the Grouch typically looks like

It means that I come across as a very cynical person. Abigail, are you sure you need to wear leggings to watch fireworks? I mean, why are you so worried about people thinking you’re a victim of abuse? That’s ridiculous. Everyone can see that you’re happy. OR Abigail, why don’t you ever want to have a good time? Maybe things will just be fine this time. Mostly, I’m just very practical. I’ve discovered things like if I’m around loud noises for an hour, sometimes I’ll be in bed for four hours recovering. So guess what? Going to that church service just isn’t worth it. Or it takes forever for those bruises to heal, so I’m not taking my chances. Because people do ask.

I’ve become an Eeyore. He’s cynical and doesn’t look at the bright side of anything. But, he’s still pretty happy. He’s not like Oscar the Grouch. He has friends, and he cares about them. He likes the color purple and knows that going to a birthday party is important. He just looks at life differently. Because that’s who he is. And so, most of the time, I have Eeyore days. I’m being honest & transparent. That might come across as Eeyore the cynical. And that’s okay. Because I like Eeyore.

In fact, I’ve decorated my bedroom with an Eeyore theme.* Just a little bit. And more in a sophisticated way than nursery decor. It’s not super obvious because I didn’t want to overwhelm my friends with doom and gloom. But seeing him makes me happy. Because he gets me. That life is hard. And painful. And exhausting. So he’s peeking out of various nooks and crannies.

And to give you a glimpse of what my room could look like, I compiled this treasury on etsy. It’s a bit much, especially since I have nowhere near that many light switches to cover. But it’s the general sentiment.

with love (and honesty),

Abigail Cashelle

___

*I gravitate towards smiling Eeyore though. He’s surprising not that hard to find. But you do have to look. And that’s the Eeyore I know.

Random Symptoms: Ear Pain

So, my left ear has been killing me. For. No. Good. Reason. And I’ve been working on a new quilt but apparently I can’t add any more. (When your queen size quilt is 35% smaller than it should be, we have issues.) And so life has been exciting.

But this ear thing? Seriously. It’s driving me crazy.

Half the time I think it’s a jaw thing. Because my 13-year molars are still emerging on the left side, and the gum is swollen. Plus if I don’t open my mouth for a while, it hurts more.

But the other half of the time it feels like an ear thing. Like WAY deep inside the left ear. And it hurts to hear. And to think. And to sleep.

The ENT I saw removed a bunch of ear wax from that ear, which relieved a bunch of the pressure, but it still hurts a lot.

I’m secretly convinced that there’s something wrong with the left side of my body. Okay, it’s not really a secret. And it doesn’t take all that much convincing. It’s more of an observation.

Anyhow, I remember having bad TMJ pain when I started graduate school two years ago. But somehow this feels different. Maybe I need to go find the notes from the doctor that I saw back then.

So much to do. Somewhat overwhelmed. And out of spoons. Do you think reading The Ear Book would just make this all better? Because I used to love that book. And it would be so much easier.

Just another day in the life,
Abigail

An update

Just a quick update to give you a glimpse of my life and to ask for some prayers.

I’m settling in to life at my parents’ house. I never imagined that I would stay here, but I’m grateful to just be in one place for more than two weeks at a time. The last few months have been kind of crazy, including three week-long “visits” to friends’ houses.

I’m having a hard time transferring my medical care down here. Part of the issue is that the medical landscape here is just different and because it’s so much bigger, it’s more confusing. But another part of the problem is that I’m having a hard time explaining to someone why I’m sick and why it’s important that I need help. I’ve spent so much time and effort accepting my illness for what it is and learning to live life in spite of it that it’s hard to convince someone that I do actually need help and that there is something majorly wrong going on.

I hurt my left hip somehow in the move to my parents’ place. I’ve been in and out of chiropractic appointments, but I’m not convinced that anything besides the first visit really helped. It’s really bothering me a lot though and keeping me up at night. (It’s super painful and also kind of wobbly.)

I’ve been having pretty intense inner ear pain in my left ear. It’s been going along with headaches and toothaches, which are immensely hard. I tend to want to sleep on the left side of my face, which is tricky since I can’t sleep on my left hip. All in all, falling asleep is hard and when I wake up, my body feels all twisted. I’ve already been screened for an ear infection and for other obvious stuff. We’re not really sure what’s wrong, but now that I’m starting to hear ringing (only) in that ear, I think I’m going to have to go down the investigative route.

Good news is that the breast pain is bothering me a lot less. Part of it might have to do with the fact that I’ve been home a lot and just lounging around in sleepwear. But a former chiropractor of mine is graciously allowing me to undergo cold laser therapy at her office, and I think it’s actually helping with the pain & inflammation. I’m skeptical, but I’m fitting into more clothes now, so something is actually changing.

I’ve got some freelance work coming up, but honestly finding a job has kind of taken a second place to getting medical stuff sorted out. It would be nice to have some pseudostable though. Plus, when I’m not resting or unpacking or dealing with health stuff, I’ve had to do the whole run around of getting a new driver’s license and changing my car insurance and hassling the credit card company, etc.

Prayer requests: that I would get adjusted to living in this new place, that the medical stuff would get under control & that I would have the strength/the help/the support I need to get what I so desperately need, that things would stabilize so that I can focus on more meaningful (to me) stuff like going to church, and that somehow I’d continue to have the energy to live with my family.

Abigail

you know you have chronic fatigue when…

2 of your 6 dresser drawers are packed full of “loungewear”.

So I’m finally unpacking my stuff at my parents’ house. I think I’m going to stay here for a while, although I’m trying to redecorate the room so it looks totally different from how it felt before. Maybe that will help with some of the memories.

Anyhow, I have a six drawer dresser, and in unpacking, I found that my clothes fall equally into three categories: (1) business casual, (2) loungewear, and (3) tshirts, sweaters/jackets, and dresses. So ummmm, yeah. It’s either work clothes or sick clothes or other. I had no idea how many pajamas or “lounge” clothes I had collected in the last two years, but hey, that’s a small price of having chronic fatigue syndrome, right?

Abigail

5000 years old

… I have a million posts in my head, but the truth is that I feel like a 5000 year old man. That doesn’t give me very much time for writing (but a lot of time for thinking and resting.)

I will return at some point, hopefully soon!

Abigail

it helped my neighbor’s godfather’s cousin’s dog’s sister’s owner’s mother (and other trite comments)

I have a new pet peeve. It might have something to do with the fact that a lot of things are going on in my life right now. And I feel like I have no control over them. It might also have to do with the fact that this is supposed to be a period of healing and things are actually {gasp} getting worse!!

I (sometimes) have the patience of a saint, but when things get really hard, it seems that people say more and more unhelpful things and it gets harder and harder to just smile and nod.

Here are some of the trite comments I’ve already heard:

  • Have you tried _____? Because it helped my neighbor’s godfather’s cousin’s dog’s sister’s owner’s mother. (Ummm, okay.)
  • Your life seems really exciting. (Actually I wish it was boring.)
  • Have you thought about writing a book? (Yes, and I would rather my life be boring.)
  • Maybe you need to stop sleeping and start doing things. (Ummmm, yeah, that’s how I got here.)
  • Have you considered volunteering? For example, if you walked someone’s dog every day, you might feel better. (Ummmm, no.)
  • Maybe you’re bored. (Yes, because there is nothing I’d rather do than be sick.)
  • Do you go out looking for trouble? (No. I have too much of it as it is.)
  • Can you please tell me what your plan is? Or when you’re moving? Or what it is you want to do with my life? (How about I introduce you to my grandchildren? I think that might be easier.)
  • You just need to get along with people. (Ummm, doesn’t that take two people? I mean, if it takes two people to have an argument, it ought to take two people to have cooperation.)

Sigh. Hopefully, things will be looking up soon.

Abigail

Moved In & Exhausted

I am moved in but exhausted. Aaron’s friends came to help out and they put all my stuff in cars within 10 minutes. It was amazing.

I’m loving the new room, the new housemates, the awesome kitchen, and such. I met the dogs last night. One dog loves socks and underwear; the other dog tried to get on my bed. Both dogs weigh more than me so that was interesting.

I’ll write more later when I’m not drop-dead exhausted. Don’t forget that PFAM submissions are due on MondayWednesday (apparently I can’t count)!!

Abigail

PFAM: Recharge?

Duncan is hosting Patients for a Moment this month, and he asks us how we recharge. Well, Duncan, funny that you should ask. I just got home from a whirlwind weekend of visiting family, attending a wedding, and seeing some old friends. Right before that, I just finished a whole semester of working really, really hard to try to satiate the ravenous lion only to wind up leaving my graduate program. Oh, and to top it all off, I’m battling massive inflammation of unknown origins; after the last specialist told me that she was SO glad I was responsible and came in to see her, then she capped the exam by telling me to go home and “be well”. (Ummm, yeah, I think Dr. Bryan was right when he said, Well, if only it was that easy.)

So apparently, I have been charged to “be well” and all I feel like is being trapped under a mattress (or 500). There are a million things I could be doing like applying for jobs or doing laundry (or updating this blog or reading my own email!), but I just don’t feel like it.

iPhone 3GS Low Battery
except my battery has about -5% remaining

I’ve decided that I need to take a week off. A week where I do nothing. So far it’s been interesting. I’m not sure that I’m getting better. But, the key thing here is that I’m not getting worse either. And in the world of vicious circles of downward spiraling symptoms, that is a MAJOR accomplishment.

Some of my friends have come over to visit me. They’ve brought food and presents and fun stories. But mostly I’ve just tried desperately not to fall asleep when they’re here. Diana even came and watched a movie with me, and I wound up laying down on the futon through almost all of it.

It’s hard not to do anything. But I’ve decided that in order to recharge, I need to stop doing stuff. Just say no, so to speak. Just roll over and keep sleeping. And not feel guilty for not doing anything. All the stuff I normally do to recharge? Have friends over, write letters, work on crafts, play the piano….. Yeah, I don’t have the energy for those either.

After all, someone called me yesterday about a credit card application. After about 30 seconds of me trying to think and failing miserably, I just told him to nix the application. I was so glad it wasn’t someone following up on a job application. Because I would have probably told them the same thing. And when a girl gets like that, it doesn’t matter what things are on her to-do list. Recharging gets priority. Because this girl has been running on empty for far too long.

Abigail

Sleep

The problem with chronic fatigue syndrome is that you always need more sleep. Of course, when you lay down to sleep, there’s no guarantee that you’ll actually fall asleep. CFS = fatigue + insomnia.

With the ravenous lion, I think I have somnifaculty.

But Eric, one of the ravenous lion’s other students, and I go to the same church as the ravenous lion. And, we saw the ravenous lion fall asleep during the service today…. I wonder what that’s called!?!

Abigail