Do I need to find a way to take leave from work? #spoonie #chronicillness #disability #lyme

I had to take five days off work during the last two weeks because of migraines and then a terrible cold. I went back to work on a Wednesday, and worked Thursday and Friday too. I worked, but I was utterly exhausted. My regular chronic illness of Lyme, hashimoto’s, Myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), autoimmune disorders, etc is bad enough without adding a cold on top of it! They only reason I worked Wed, thurs, fri was fear and guilt. Fear of eating away at my leave when I am so very sick and have a long way to go to get better. Fear of losing my job and being penniless with no benefits. Guilt for not doing a very good job at my job. Guilt for not trying “harder”, by which I mean pushing myself until I collapse. But that pushing so hard is part of what got me here in the first place. My standards are outrageously high. My understanding of what health is is very poor. I am learning to adjust these things, but it is hard. They are automatic, unconscious and feel “right”. Most people when feeling a 3 out of 10 would call in sick, and rest all day (and then feel better the next day, lucky people!), but for me a 3 is a typical day. I still go to work, cook, do the dishes, etc. I’m exhausted and miserable, but I can do it. It feels wrong to force myself to lie on the couch when I technically can do things. The problem is, yes I can do things but I am constantly depleting myself so that I can never get better (relatively speaking).

I was thinking of working Saturday to make up some of the time I had to take off, so I didn’t lose so much leave. But I realized I was just exhausted and it would be so much better for my health if I didn’t work Saturday, but instead took care of my health. It was really really really hard to make that decision. I felt super guilty. It feel incredibly decadent. Luxuriant and indulgent. I felt excited and nervous, like I might get caught and get into trouble.

I think these feelings stem from a deep unconscious belief that I don’t deserve good things. Unless I have worked myself almost to death for them. This needs to change. It must be blocking me in many areas of my life. And the stress of those beliefs are terrible for healing.

Saturday I did nothing. Well not nothing, but in my mind it was nothing. Which isn’t really fair to me, now that I think about it. I baked big batches of zucchini, mushrooms and chicken. I did a few loads of dishes. I did a couple of stream treatments for coughing and congestion from the last bit of this cold. But not all at once. I would do 30-45 minutes of work, and try to stop before I was super tired. I was successful more times than not, but not always. Then I would rest for a couple hours. I did a mix of tv, reading, podcasts, audiobooks, and surfing the web and Twitter. It was nice that I could actually read and understand most of it. The lyme brain fog has made it very difficult at times.

Today, Sunday, was very similar. Small bits of work, and large bits of rest. And I am feeling much better in energy, mood, and brain function than I have felt in a long time. Plus tomorrow is a holiday which makes it even better!

The fact that I feel so much better after two days of doing very little is both nice and scary. It is a reminder to me that I need to even more jealously guard my time, be even more disciplined about rest, no matter what comes my way. But I fear that this is very clearly telling me that I need to find a way to take time off work, either completely stopping, or going down to half time. This would be very financially difficult. But how am I going to get better with out doing it? Besides the exhaustion of being so sick for so long, lyme disease has killed people and I was heading very much downhill before I started treatment and got so fanatical about rest. I’m not sure what to do, but I need to start thinking about this. Crunch some numbers to see if I can pull it off. Try living super frugally and see how it goes.

I have been on this journey for a long time. A few months ago I came to realize that I am chronically ill, that I do have an invisible disability. But I still had lots of denial. This latest thought about taking time off seems like a deeper acceptance. Getting off the hamster wheel of trying to pretend I’m ok. It feels very calming and freeing.