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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5 Comments

Filed under Invisible Illnesses, Life

5 responses to “So sleepy…

  1. Wow. Thank you for the spoon link. I understand you so much better now.

    In my very humble and unasked for opinion, you should use your spoons on school. You seem so excited about that degree. I think it would fulfill you emotionally more so than other tasks.

    Get some rest, friend.

    • I love spoon theory. It really does help people understand what living with a chronic illness is like. That is what I hate most about CFS, especially. The fact that every single thing I do every single day of my life has to be thought about, and weighed in the balance of how many spoons it will take vs. how many spoons I need for other activities. Every. Single. Day. That is what wears you down.

      Thanks, I am trying to use them for school. :) I am excited, and I am very, very hopeful that I could maybe hold down a job teaching. After all, there are breaks in teaching and shifts period to period, so hopefully I can make that work. My problem then comes on which job to give up now. Tutoring? It pays well and is good experience. Training? I have worked hard to get it to where it is, and hate to give it up without very good reason because I couldn’t just go back to it later easily. So I’m trying to cut back everything and still stay functional. We’ll see come fall…

  2. Kathryn

    If I could figure out how to borrow some of my kids spoons, I’d gladly lend you as many as you need. Since science hasn’t progressed to that point yet, I hope you are able to rest and recover as many spoons as you can this week. I’m sure that Toby will be good about making sure you rest well (and warmly). I’ll send some mental spoons your way.

  3. Kathryn

    I also meant to say that I have always been impressed with how you are able to do so much. You are a very impressive person and I’m glad I know you. You will get rested, get your spoons back, and get this all figured out so you can amaze the world with all you can do so well!

  4. Pingback: spoons and impromptu self therapy « CFS Introspections

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