Explaining to the lay person what chronic Lyme feels like | Liberation through #Lyme #chroniclife

“I have no doubt that my husband loves me but I know that it frustrates him when I try to explain that he will never be able to understand what I’m experiencing. After a great talk today I think I may have come up with a way that can help him at least wrap his brain around it. I thought I would share it with you all too.

Imagine the worst case of Mono that lasts for 3 months, leaving you unable to lift your head off of the bed or take care of your basic personal hygiene unassisted. Now add in…”


Spoon thief stole my spoons when I wasn’t looking #spoonie #chroniclife

One of the most frustrating things about the chronic life is that with out any warning at all, I can be suddenly exhausted. And for no reason I can see. Today I was doing pretty good, relatively speaking, when I felt my energy just draining out of my body. Like an invisible vampire, draining the life out of me. Was it because I didn’t eat enough? Was it because I didn’t take a break soon enough? Was it because I did quite a bit of cleaning yesterday? I have no idea. I tried to take a nap but it didn’t work at all. I just lay there, getting more and more frustrated. Probably about an hour. But the exhaustion didn’t go anywhere. Then I started to feel almost drugged – light headed, dizzy, and having difficulty thinking. And crazy food cravings. I rarely get food cravings anymore, now that I am on a strict elimination diet. I am home now and crashed on the couch. It is hard to hold my head up. My wonderful spouse is making me stir fry, with garlic, bacon, chicken and broccoli. If a normal person felt like this they would probably go to the hospital. But for me it’s just another day dealing with lyme disease and this chronic life.

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.

The power of acceptance #mecfs #Spoonie #chroniclife

“One of the most important and necessary steps in moving forward with anything in our lives is acceptance.”


How to not get angry at the advice givers #chroniclife #spoonie

We spoonies tend to get so annoyed at people’s efforts to try and tell us how to cure our disease. The complaint is that they don’t know anything really about our condition but want to go on and on about how their brother’s girlfriend’s yoga teacher was sick with what we have and they went on this diet / exercise / nutritional supplements / medication / meditation / used magical moon crystal magnets and was cured.

The part I find most annoying is how invisibilizing it is. I have spent thousands of hours not only living this illness, but researching it, trying a billion treatments, and going to doctor after doctor who gives me test after test. My chronic and debilitating illness impacts every single part of my life, leading to isolation, loneliness, pain, frustration and fatigue.

Even if the advice giver was right I wouldn’t want to listen to them because, quite frankly, they didn’t listen to me first. When living a chronic illness, most of the time alone and struggling, it appears incredibly arrogant for some one who is barely ever there to waltz in, tell me what to do, and then walk right back out, leaving me still alone and in pain. Arrogant, self-righteous, cruel, entitled, selfish, condescending, pedantic and thoughtless. This is the view from the bottom of the well.

On my good days, however, the days I can muster up compassion, the view can be different. On those days I realize the advice giver probably means well. Although they are not able to really see me, and have not the slightest clue what my life is like (which quite frankly I would not wish on anybody), they do feel some measure of compassion. Some part of them does wish I was not suffering, and makes an effort to alleviate that suffering, albeit in a very clumsy and self-absorbed manner.

They are much like a five year old who, knowing very little but meaning well, decides that a hello kitty band-aid will fix it. They hand me the band aid, expect a smile and thank you, then toddle off back to play with their toys and have fun with their life.

I would not rage at the five year old. Why do I rage at the adult? My expectations. Expectation that they should know better. They should see me. They should understand. I think all of these expectations unconsciously stem from the belief that they need to take care of me, or that they owe me something. Or something like that. But when I am able to not expect anything from them, when I am able to feel confident and secure in my ability to meet my own emotional needs, that is when I am most able to see their sincerity to make an offering.

Their advice won’t cure my disease, and that may trigger feelings of despair, sadness and anger. But that is on me, not them. Just like that five year old with the hello kitty band-aid – that won’t cure my disease either. But seeing through the offering to the part of the intention that is good and sweet can make me smile. And that is a gift indeed.

You are awesome #spoonie!

It’s easy to get down on myself because of the things I can no longer do, and how little I can get done nowadays. This is an excellent reminder I am awesome in my own unique way, even if I am totally different than many others in my (physical, not online) life.



how fighting for my health turned into fighting for myself #reblog #Spoonie

” For me to fight for myself took some drastic measures. Dealing with these illnesses and the abuse I did growing up, I had shitty ass self-esteem. I had to start learning that I was worth fighting for, that I matter.”