Finding Rest and Saying No on the Holidays

andrew_stevovich_oil_painting_woman_with_autumn_leaves_1994_36-_x_72

Woman resting on fall leaves, from Wiki Commons

Nothing else is worse for trashing all my spoons than the holidays. I don’t know what it is, but when I get around my family specifically at the holidays for some reason it is so hard to draw boundaries or do pacing. Maybe it’s that I revert back to being 12 again and feel like I have to live up to everybody’s expectations of me? Normally I am really good at saying no. Even when someone isn’t asking me to do something, I feel this nebulous exterior expectation of how things “should be” and I feel a great deal of anxiety about living up to it.

This isn’t conscious. Consciously I completely disagree with this and actively work to undo it. But in the moment I find myself acting unconsciously and before I know it all my spoons have slipped through my fingers and shattered across the floor.

Normally I’m a huge advocate of direct communication and working things out with the other person. However I recognize process takes a lot of spoons then I may not have, especially with all the hustle and bustle of the holidays. Sometimes I just have to do what I have to do to take care of myself. And that comes first before anything else. I don’t actually owe anybody any explanation and feeling like I do is just socialized pressure that impinges on my health.

These may not work for you, but hopefully they spark some ideas

Pacing

Find ways of getting a break. I set alarms on my phone reminding me. Even just 5 minutes every hour helps me a lot. Good ways to get a rest if it feels hard to just say it directly:

  1. Put reminder on my phone to never expend more than about 30% of my spoons at a time. By the time I notice, I’m flagging it may be too late
  2. Go to the bathroom and stay a long time. If asked, say not feeling well. I don’t need to explain that I always feel unwell
  3. Say I’m not feeling well and find a bedroom or quiet space to lie down
  4. “Forget” something in the car, then rest there
  5. Go for a “walk” and find a place to sit
  6. Say I need something from the store, drive to store, nap in car. If asked, say it was hard to find what I needed (since this is probably true)
  7. Arrive late and leave early
  8. Put a relative who likes to be bossy in charge of making sure I take breaks. Gives them purpose and reminds me to do it
  9. Anything I do, like chopping vegetables, try to do it sitting down

 

Saying No

This can be so hard! And often the person I most need to say no to is myself. Questions I ask myself to help myself figure it out:

  1. Am  I willing to do nothing else today and the next few days if this takes all my spoons?
  2. What will happen if I don’t do this?
  3. If I don’t do this will anybody be seriously harmed?
  4. Is it more important to do this thing or is it more important to spend time with loved ones?
  5. Will anybody remember that this wasn’t done in 10 years?

When the person won’t accept no as an answer or it would just take too many spoons to have the conversation (this includes getting out of political conversations):

  1. Excuse myself to go to the bathroom.
  2. Say I need a kleenex
  3. Say I’m going to see if ____ needs help.
  4. Ask friend to call with urgent problem. In a huge pinch, just pretend someone is calling, preferably work
  5. Avoid areas like the kitchen or people who get into politics
  6. Cough on them and say I think I’m getting a cold
  7. Start talking about graphic medical procedures I’ve had

Some of these are rather silly but the trick is for each of us to find what works for us. We are worth the effort! Wishing you a high spoon, low pain day

Xx

No More Menstrual Migraines?

This is going to sound really bizarre, and I really don’t understand it myself, but it seems like I’ve gotten rid of my terrible migraines during my period!

For more than a year I have had migraines so terrible during my period that I have seriously considered doing harm to myself. I have had times where I have had to talk myself down from getting a drill, wanting to put a hole in my head. That sounds extreme, but that is the level of pain that I was in. I could honestly understand why some indigenous cultures did trepanning, where they would drill a hole in their head to let the evil spirits out. I was in so much pain that I honestly would have done just about anything to make it stop.

a_human_skull_showing_signs_of_trepanning-_wellcome_l0035690

Skull with signs of trepanning, from WikiCommons

I have always had a difficult period but I haven’t always had this level of pain. But the brain fog makes it difficult to remember when they started. I keep a bullet journal of symptoms to track my symptoms, medication,  what I’m eating, etc. However I didn’t start the bullet journal till after the terrible migraines had started.

In talking to my doctor about how to manage the extreme level of pain, he encouraged me to take a second look at my bullet journal to try to see if I could figure out what possibly could be causing them. I didn’t think that would work but I gave it a shot just in case. Going through my bullet journal I actually did not have a terrible migraine in the month of June and July. The only things that I could figure out that was different during those two months were these:

1. Eating potatoes and potato chips

2. Putting on weight

Okay, okay, I know this sounds ridiculous, but those were the only things I could think of that were different. And as I said I was willing to try ANYTHING.

My period was due in a few days but I decided to eat a bunch of potatoes and potato chips and not worry at all about calories. Up until then I had been eating really strict keto diet, because that is supposed to help with killing off Lyme disease.  I have late-stage chronic lyme disease that is extremely debilitating.

In just a few days of eating potatoes and potato chips and not worrying about calories, I still had a very painful migraine but it wasn’t the dear God I think I need to kill myself level of migraine. It was bearable. It was something I could live through it without wanting to hurt myself.

For the next month I continued to eat potato chips and potatoes and not worry about calories. I put on about 10 pounds. Everytime I started to worry about weight and disliking the way it felt on my body, I just remembered that I would do anything to get rid of those migraines.

MY NEXT PERIOD I DID NOT HAVE ANY MIGRAINE AT ALL. Just a bad headache, which to me is absolutely nothing at all. In addition my cramps were much much better.

I asked my doctor why this was happening and he said something about levels of hormones and that fat can help with transforming hormones or something like that. Honestly I don’t really remember the details. And right now I don’t really care. My next period is due in about a week and I desperately hope that this will be my second period in a row without a migraine.

Spoonie Online Events Calendar

There are now so many online events for spoonies, it’s hard to keep track of them all! I created a calendar to view them (also accessible from the tabs at the top of the page in most views). Let me know if I missed any!

 

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…”

https://lymemoksha.wordpress.com/2015/05/16/explaining-to-the-lay-person-what-chronic-lyme-feels-like/

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.”

http://www.getupandgoguru.com/day-1-31-days-to-a-better-cfs-life-3-myths-of-acceptance-that-hold-us-back/?utm_content=buffer2b5e4&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer