Category Archives: Invisible Illnesses

So sleepy…

It has been 16 months since I left my job as a full time engineer, which I loved, due to my illnesses. I couldn’t keep up the work level. I couldn’t wake up every day, go in for 8+ hours, work at a high stress job, with no break, no end, no way to recharge but the too-short weekends. I was falling apart. Losing my hair. Falling asleep at the wheel of my car. Getting sick constantly. Barely able to take care of my basic needs, and unable to do any more than that.

So I quit. And left a fulfilling career, which I was very good at, knowing odds were I would never be able to go back.

For a year I basically took time off. The first months were all recovery. Learning to smile again. Thinking about more than basic needs. Visiting specialist after specialist to try to get my health back under control.

And largely, I did.

After about 6 months I began to want more. More than my part-time jobs, cobbled together. More than time to rest and recuperate. I needed purpose. That desire continued to grow, until I not only wanted it, I felt I could handle it. I no longer thought so all-consumingly about my illnesses every day. Rarely did I sink into deep depression. Rarely was I so fatigued I couldn’t function. I was resting 12-16 hours a day, and it felt like I could do more with my remaining time.

So 2 months ago I enrolled in a masters program. It is online, so flexible, so I thought it would work well for me. I could adapt it to my energy needs. When I had more energy, I’d do school. When I had less, I’d rest, or do less taxing jobs. It seemed perfect. I fit it in around my other jobs, running Companions and tutoring/teaching at an after-school center. Ideal.

And it was working pretty well. I was feeling purposeful. I was feeling alive. I was feeling good about myself and what I was doing with my days for the first time in a long time.

I didn’t realize how close to the edge I was living.

Last week was a little bit harder than normal. It was my last week of my first semester, so I had final projects due in school. My tutoring summer camps ended that week, so classes were a bit hectic and I had some extra students as we transitioned over to the post-camp schedule. I left for a silent weekend on Thursday, and then left that early to go run a race on Saturday. And through it all, I was training, and had a mini rash of private client requests.

And in that week I borrowed heavily against my future spoons.

I didn’t quite realize I was doing it. I thought I was just handling things well. I knew I was tired last week, but with it being so crazy I figured that was OK. After all, I was getting through and doing everything! If it tired me out a little, that was OK! I was managing!

What I didn’t understand was that to be able to get through and do everything, I had had to borrow against my spoons for this week. I wasn’t able to do it with what I had. I had to take out a loan. And when you borrow spoons from the future, the interest on them is heavy.  So now, this week I am starting each day missing the spoons I borrowed to use last week. Plus missing extra spoons because of the interest on that loan. My days are starting with very few spoons. To the point that just getting out of bed almost depletes my stores.

So this week, when I am between semesters and thought I would be enjoying a relaxed week off, I am exhausted. I can barely function. I am sleeping in every morning, and still waking up tired. Last night I slept 11 hours, and only woke up when my dog decided he needed me (and no, it is not over sleeping, my body needs extra sleep) and I am still so groggy just standing up to straighten my hair so I can go to work is daunting. Yesterday I spent part of one tutoring session playing hangman because I was too tired to do the mental work necessary to come up with things to teach my student and keep up with his energy.

I am exhausted.

Because I have been living such a sheltered life these past 16 months, I thought I had made some progress. Maybe gotten beyond being so dependant on spoons. Maybe expanded my starting number of spoons, so it wasn’t such a big deal.

This is crashing me harshly back to reality. Sure, as long as I am an unproductive member of society working 20 hours a week and doing almost nothing at home I can function just fine. But try to add some more in there? And I can’t keep it up.

I hate this. It scares me. I’m not sure if I’ll ever be able to successfully hold down a “real” job.

I just want to be normal. God, it would be nice to not have to think about spoons.

Or at least close enough to normal I can be a functioning adult for a week without running myself into the ground.

Is that too much to ask?

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Why, hello again

Why, hello again, depression. It’s been awhile. Almost a month since you last gripped me so fully.

I know what triggered you to come seeping back into my life, subtly but strongly enough to completely envelop me. I expected you on Friday night, but I guess you were just taking your time until I wasn’t prepared. Maybe me blaring music so loudly I couldn’t think or feel for my hour drive home had something to do with the delay, too.

That’s OK, though. I’d like to thank you for holding off until today to grab me and pull me down to these depths. It gave me time to have a wonderful 24 hours away with my sweet hubby on our impromptu vacation. So take that. *sticks out tongue*

As you know, you are never welcome. I don’t know why I remind you, you always seem to invite yourself on in, anyway.

Please be sure you grab all your stuff when you go this time. Don’t want to leave any reason for you to come back.

While giving you the tour (again), I just would like to highlight this lovely door. It is the exit to my brain. Please, don’t hesitate to use it.

This time try to remember, it’s one-way only.

Forever yours,

Me

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Sleep Deprived (AKA So Effing Tired)

I.

Am.

Exhausted.

I was going to bold one of those words, but I’m too tired.

It has been weeks since I slept well. Since I slept through the night. Since I didn’t have stress dreams/nightmares.

My insomnia has kicked in with a passion.

I cannot fall asleep. No matter what hour I go to bed or how exhausted I am when my head hits the pillow, I spend the next 1-3 hours lying wide awake with my eyes shut, trying to relax enough to let some peace in.

I cannot stay asleep. I have woken up several hours before I needed to every. Single. Morning.

My CFS is not caused by my insomnia, but it sure can be made worse by it. And, unrelated to any of that, I need an abnormal amount of sleep just to stay normal. About 10 hours a night. Ridiculous. Unreasonable. Which is why I am often low-level tired. But that is my base level that is really required for functioning. I can do 9 sometimes, but I’ll pay for it.

So let’s look at last night, just as a typical example.

Fall asleep around 12:30AM.

Wake up from nightmares at 6AM.

In case you’re a bit fuzzy on math, that’s 5.5 hours of (nightmare-riddled) sleep.

And in case that fuzziness extends, 5.5 < 10. Also, 5.5 < 9.

Yeah.

That.

For 2+ weeks.

So.

Effing.

Tired.

I’m hoping it’s hormones. And that as my body regulates to being off the pill (pleaseohpleaseohplease) this will go away.

Soon.

Really, really soon.

So tired of living in a fog and being unable to do the one thing that would help: sleep.

So tired of the bitchy, short-tempered person I become on this cocktail of minimal sleep + wonky hormones.

Just so tired.

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Stupid depression stupid

My dysthymia has gotten better. My average mood is not as low as it used to be. And my dives into deep depression are not as deep, nor as frequent.

All of which is fantabulous.

But the downside I’m being reminded of now?

It means I’ve lost many of my coping mechanisms.

So this deeper bout I’m going through today I am totally stuck by. I’m not as practiced (and thus as good) at shaking it off.

Stupid depression stupid.

Can’t better just mean better?

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Modern Medicine

One thing I love (love LOVE!) about the midwifery model of care is the continuity of care and presence that the midwife has with her clients. Prenatal appointments always last 45 to 90 minutes. The midwife is the one who takes you back, does all the initial readings, answering of questions, and more “professional” tests herself. She is with you throughout the entire birth, from when labor gets going until a few hours (at least) after the baby is born. She will let that time take as long as it takes, no intervening to hurry things along, but she also knows when to go to interventions.

Compare that to an OB/hospital birth. Prenatal appointments may last 45 minutes…but only about 5 minutes of that (maybe 10 if you’re lucky) are with your actual OB. Much of the rest of the time you’re waiting, filling out paperwork, or an assistant is asking you questions and doing procedures. The assistant takes you back and does all the initial readings. OBs are often frustrated that you have questions that expand the length of your appointment, and I know women who have even been told, “Well your questions took so long now we have no time to do any of the normal checks for this appointment.” The OB ducks in to do the professional tests, then ducks back out and sends results or follow-up info back in with the assistant. At the birth you are attended mainly by L&D nurses, who are likely to rotate throughout your stay. No one has ultimate responsibility for your care, it’s easy to pass the buck if something confusing happens. And it can be hard to notice long-term patterns, since there is no one with you long-term. The OB shows up just at the end to catch the baby…and not uncommonly you are told to wait for the OB to show up so they can catch. The other time the OB might show up is to try to get you more on their schedule, so you can deliver before their shift is over or it gets too late at night, by advising additional procedures.

This is so different. So wildly different. I know some don’t understand my desire to have a midwife over an OB. This is one of the many reasons. Social Anxiety Disorder, people. I will have a hard enough time relaxing in front of one person I trust enough to make good progress through labor (because yes, being scared, nervous or anxious can stop or slow labor), constantly changing nurses and whatever OB is on call at the time is not my cup ‘o’ tea. Especially when I don’t trust them to let me be me..possibly outside of the “average” progression or procedure of labor but still perfectly safe. I have had too many doctors not accept that I am the way I am and just try to “fix” me against my will, I don’t need to go through that at birth, too.

But my thoughts here were more than just birth.

I recently made the connection between this attitude in obstetrics and this attitude of all of modern medicine.

Recently I found a new doctor (recommended by a friend). I’ve only seen her once, but I thought she was fabulous. She talked to me for 45 minutes, really getting a history. She was happy to explain why she recommended everything, answering all of my questions without making me feel guilty for taking up her time. She recommended, and I got, 3 vaccines, but I felt pretty OK taking her recommendations, because she was happy to explain her reasoning behind them and every time she had a good, concrete reason.

Now I have to go back to get the follow up vaccine (since it’s a multi-shot series for one of them).

I called yesterday to make my appointment (because I am anal retentive and I wanted it scheduled waaaaaaay ahead of time so I don’t forget and then have to wait one extra day for an appointment but when I got the first one it was too waaaaay early to schedule the second). Since I first saw the doctor, and she seemed so happy to answer my questions, I had started a list of follow-up questions that I had been thinking of. I was so disheartened by past bad doctors I hadn’t made a big list before the first appointment (plus I had that one big issue on my mind), so I was excited for this next one when I could ask all those little things I’d been wondering about for early pregnancy and TTC.

As I scheduled the appointment, the scheduler let me know, “So if this is just for a vaccine you won’t see the doctor, this will just be an appointment with her assistant.”

It makes sense, given the modern medical model. The assistant pulls me back. She does all the basic intake tests. She delivers the vaccines. So why would the doctor even need to come in?

Except that I want to see my primary care provider. Because that’s who I go to the office to see. I want her to do my care. All of it. Start to finish.

I hadn’t realized how much this fragmented model of care kind of got under my skin. Not a lot. But a little.

The endless repetitive paperwork.

The re-answering the questions for the assistant.

The re-re-answering the questions for the doctor.

The doctors’ time just feels like it’s too precious to be spent with patients. You need your blood pressure read? Eh, someone less skilled could handle that. You need a prescription? Eh, I’ll send it back in with the nurse, if you have (any or further) questions you can ask the pharmacist. You’re coming in to get a vaccination? Eh, the assistant can handle everything there.

I’m pretty sure I’m paying the same price for the office visit, doctor or no doctor showing up (though maybe not). So why can’t she just stop by to look everything over quickly before giving me the shot?

I mean, heck, even the vets want to see my dog before just giving him shots.

*sigh*

I want continuous models of care to become common. So I don’t feel like I’m wasting the time of professional who I hired to provide a service by asking her to provide that service in depth. I just want to see her regularly. And, maybe more importantly, have her see me.

Not a big deal. Just feels kinda off. Something else for me to think about.

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It sees you when you’re sleeping…

When you have dysthymia, the depression is always there. Always. Just waiting around the corner. Watching every second of your life for a crack it can sneak in through.

It is a life-long battle.

It will never get (all the way) better.

It will never go away.

You cannot beat it.

All you can do is learn to live with it so that it affects you as little as possible.

And build up a kick @$$ support system, so that when it does start to win, they’ll hold you up while you fight it off.

I think one of the hardest things about dysthymia for me is how stinkin’ sneaky it can be.

The past week I’ve felt like I’m doing pretty good.

Haven’t been super sad.

Have been able to leave the house.

No anxiety melt downs.

No crying fits.

But it’s still got me. It just found a new way.

A subtle way.

One I didn’t notice.

So it managed to interfere with my life for a solid. week.

What way is that?

I have not returned any phone calls.

No big deal, you may think. So my friends aren’t hearing from me.

But that’s not it. My friends know not to call me, because I hate phones anyway and they’re much more likely to get a fast response texting or e-mailing.

It’s my business. Dog training. Potential clients. Current clients. People trying to get ahold of me to give me money.

I need to call them back to keep my business afloat.

And yet I just…haven’t.

I think of it, and my mind slides to something else.

I make excuses, things like, “It’s too late now,”…at 6 PM.

I keep myself busy doing nothing until after 9 (when I won’t call).

I say I’m “too tired” when I’ve woken up in the morning.

The result?

People who were seriously interested in my services haven’t heard from me.

And they left a message a week ago.

Now the calls are going to be that much more painful.

But I need to man up and do them.

Damn you, dysthymia, for being so damn sneaky.

It’s played the phone game before. It’s just always been for only a day or two, and as a minor side-effect, while other, more major symptoms took most of the attention and really let me know I was in it.

Time to go do what I have to do, despite my mind fighting me every step of the way.

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WTHW: Life Insurance Sucks

I just had my exam for getting life insurance. Because, you know, they have to know the odds of me offing myself or otherwise dying so they can lay their bets.

First off, WHAT THE HELL crazy examiner? It took you FOUR F*CKING TRIES to get the vein in my arm! And every! single! one! hurt!!! I have gotten blood draws every few months for the last many years bouncing between specialists trying to figure out WHAT THE HELL is wrong with me, and never once since 7 years ago when I was severely dehydrated from mono has anyone had to try more than once to find my vein. I’M AN EASY DRAW. Also, I don’t even dread the draws anymore because I barely feel them. But this hurt!!! I am not a baby about needles anymore, but OW! She left half an hour ago, and my arm is STILL throbbing and painful!

Also, you want to know a big no-no, examiner? Asking me what dysthymic disorder is and then saying, “Oh, I wonder if everyone has that! ’cause sometimes there are days when I don’t want to get out of bed and go to work!” WHAT THE HELL were you thinking?? Really? Someone has a diagnosed medical condition which severely effects every single day of their life, and you brush it off because you sometimes are lazy or feel crummy? Come on!

And finally, WHAT THE HELL is with your crazy religious conclusions? Twilight came up, and I asked if she had read it. She said no, and launched into a lengthy explanation that she didn’t because Stephanie Meyers was LDS and she’s Mormon, too, and she doesn’t understand why someone of their faith would write about vampires because there’s nothing “light” about vampires, unless they were doing it for money. (Because yes, when she created a whole new genre that didn’t exist yet and didn’t have any kind of teen following, she totally did it because she absolutely knew it would be a hit and she would make so much money from it. Somehow.) I couldn’t help myself, and I asked, “Light?” She said, “You know, lightening, spiritual, uplifting.” I gave her a fisheye. She went on to say, “There’s nothing lightening about vampires.” I tentatively offered, “Well, I think the books are more about overcoming your own personal demons and battles, and finding ways to be moral in the face of any challenges…” at which point she cut me off and said, “Yeah, my nieces told me they don’t drink human blood, only animal blood. I was like, what?? Besides, it doesn’t matter. In the Bible does it ever portray vampires as light? No. My point exactly.” At which point I let things go because you can’t argue with insanity and WHAT THE HELL crazy lady, when something is mentioned in the Bible one way does that mean we can view it or portray it or consider it in any other way again? So I guess stones are just for killing adulteresses, and menstrual cycles are not signs of fertility but something which makes us unworthy of being touched, and hey, come to think of it, in the Bible does it ever portray slavery as evil? No. My point exactly. Slavery, thus, can never be thought of as evil.

ARGH!!!

Glad that is over. And we’re buying the f*cking life insurance, because I don’t want to go through this again.

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