What I want: a poem, an observation

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What I want is so grandiose

My challenge is to understand how to start with one tiny, attainable goal

To allow myself to start with with one tiny, attainable goal

To be happy and satisfied with my attempt to attain one tiny goal, so that I may move on to attain the next tiny, attainable step

Toward my grandiose plans

Understanding CFIDS from a healthy standpoint

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Having a chronic illness is hard to wrap your mind around when your inner person thinks you are a type A adventurer. I am sure it is even more difficult to fathom if it is your family or friend whose health is also affecting you and how you interact with them. The IOM report and subsequent media coverage of it has raised the issue of pubic perception of CFIDS. Here are some resources to help understand your health-compromised loved ones:

Family and friends support:

http://www.cfidsselfhelp.org/library/coping-with-impacts-cfs-and-fm

more like this: http://www.cfidsselfhelp.org/library/for-family-friends

What is it like to have physical/mental/energetic limitations? Introducing the spoon theory, written by a woman with Lupus, which features similar day to day experience to CFIDS:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Medical research and education— doctors educating doctors:

There are 8 hours of videos here. As an introduction, Video #1 has a great overview of the illness without going into personal experience of patients.

http://med.stanford.edu/chronicfatiguesyndrome/2014SymposiumVideo.html

More from the clinic overseeing my own care:

http://med.stanford.edu/chronicfatiguesyndrome/

Thank you for listening, I hope this helps.

Weekend goals

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Part of how I am trying to pace myself to stay healthy is to limit my weekend activities to one big event, or one big goal and not worry about anything else but do supportive tasks to accomplishing the one thing. When I am able to do this, it works.

Two weeks ago, it was laundry. I have spoken before about the laundry problem. My life is better the more often I do it, but it is time consuming and takes a tremendous amount of energy. I go to a laundromat, so I need additional energy to be out in public with this, and relate to others (“may I use this basket?”) not to mention the physical work of managing what for me is at least 3 loads of clothes and linens. It raises my heart rate and seems to deflate my life-force. Total time: 2 – 3 hours, including sorting beforehand and putting away after. I had waited so long as my energy has been very low for the past three months, so I needed to make the rule for myself to get it done: the only thing I need to accomplish this weekend is laundry. Outside of doing laundry I was free to rest. And it worked.

Last week, I wanted to address my small kitchen, rendered all but unusable with so many dirty dishes. Again: the only thing I need to accomplish this weekend is to wash and put away dishes. I do this in 15 minute increments, as it must be all done by hand, and rest for at least as long as it takes the dishes to air-dry. I was able to complete my goal with two sessions Saturday and two Sunday. How good does it feel to have a burden lifted! And how much more do I then enjoy cooking.

This week my imperative was to at long last, put the Christmas ornaments and decorations in their boxes and store the boxes in the closet. I had already taken care of the tree, realizing that it would be easier to get the tree to the curb in time for local pickup if I did not worry about putting away the ornaments as I did so. That helped me then, and now I have had these lovely heirlooms sitting on my dining table, waiting patiently for the past two weeks. I have wanted to put them away. I have not had the mental focus and determination on work days or left on weekends when I have serviced other goals. But today I said: the only thing I need to accomplish today is to put the items thoughtfully into boxes, helpfully labeled, and return to the closet. I listened to interesting podcasts and had it done in the space of 2 hours. My heart rate was raised a bit putting the boxes in the closet, pst the heavy coats and beyond my easy reach, and I have just now realized the tree stand is still on the front porch waiting also to return to storage. Sigh. I can do this another time, my work for this day and weekend is done. Now I can enjoy the feeling of satisfaction.

Checkerboard health pattern

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This week continues to be one day up, the next down, the next up and so forth. Today is once again an “up” day, and because my hobby is finding different ways to describe my physical experience:

It is as if my inner system is working on a project, and has to interrupt my life progress to get some time to focus on it.

And you know, I understand, I often want the world to pipe down so I can get my work done so why wouldn’t my internal processes be similar. It would be nice if it could tell me clearly what is bothering it, and how I can help, but you know, fantasy.

Unrefreshing Sleep

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Yesterday was an amazing bounty of clear-headed normalcy. Today the pain-helmet was back. I slept more than the night before but un-refreshing. PErhaps did not drink enough water?

The other mistake I made today was I waited too long to eat lunch and ended up eating too much.

That being said! My positive outlook made it out unharmed. As well as my productivity level.

And then: Always another chance to wake up fresh tomorrow.

Awake again

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This morning awoke feeling clear and, dare I say, normal. Able to do my 5min yoga routine and even a smidgen of a meditation.

It struck me how different this feels and that I have not felt this way for some few weeks. That I awoke not just from sleep this morning but from a month-long crash.

It is of course fantastic to feel this way! It certainly feels like I will be this way from now on, and I very much hope that I can sustain this level through December. I just have one big question for myself:

What got me out of the crash?

As much as possible I have been limiting my physical activities, and ranged from the 30’s to just above bedridden for much of the past two weeks. I’ve been giving myself breaks from mental activities and spreading out longer more stressful projects (like figuring out how I can be insured for 2015). <– by the way, I was able to find health insurance that I could afford that my practitioners would accept only just yesterday. Could lifting this heavy burden have helped to lift my crash?

More things I have resolved recently:

  1. kitchen and bathroom sinks unclogged
  2. backlog of dishes well on their way to being all washed
  3. made dent in laundry
  4. got through thanksgiving, able to contribute two dishes!
  5. digestive issues evening out
  6. signed some new contracts
  7. paid some bills
  8. Almost all christmas shopping done (online) and already delivered, ready to wrap

I know that my Post Exertional Malaise crashes are not psychosomatic, so I am not convinced that one can end a crash simply by resolution of stressful issues. However it does seem to support recovery to do so. I also did physical therapy on myself yesterday by stretching, and attempting to release pressure points by holding them until they were no longer intensely painful (the arches of my feet, and back of my head at base of skull mostly). Did any of this contribute in a meaningful way to my apparent recovery?

Summary conclusion: I have a much better sense of how to keep crashing at bay than active things I can do to help recover from one. When they drag on for weeks, all the resting feels like it has no effect. No instant gratification here! Certainly difficult to ascertain what results from my actions. For now it must be good enough that I can recover, no matter how slowly.

I am for sure very grateful to feel so good today!

 

 

Results and Consequences

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Last week, as noted in my recent posts, I had scheduled three big events in a row. Two were work-related and involved intensive mental focus, social interaction, traveling 70+ miles and an overnight stay. The third involved careful execution of hand-lettering and artwork, as well as socially interacting with people, helping to clean up, etc.

Here’s what happened:

I did get through the first two days just fine. I had brought my special diet food with me and gave myself permission to take breaks and/or leave early, which I did in fact do. I felt it was a success because I was able to learn what I came there to learn, and make the important business connections. I saw my family and had a nice drive home. But oh, how happy was I to reach my own county! I can drive for about 30 minutes with no fatigue consequences, but 1 hour 30 minutes, different story. I have learned to hear when my body would like to get out of the car now please, and stopped just short of my neighborhood at a friends house, where we sat jawing on the porch in this perfect and crisp fall weather. Ahhh!

And then at home I ate something and went to bed early. Good thing too, as I had not slept so well when out of town.

So the third day. I was OK, no brain fog, but I felt uncentered and ungrounded. Tired but able to feed myself and complete the art project. I did notice the ungrounded feeling produced in me a shaky hand thus preventing smooth brush strokes, and so I sketched the lettering with a pencil. It turned out great and was quite fun. And then it was time to take this masterpiece to the event, oh right, getting dressed first, which I did and upon arrival was exhorted to complete other lettering tasks with certificates and signage. I didn’t do quite as well on these, but still a better use of my energy than moving furniture, eh.  I was pretty tired and felt subdued at the party itself. However it was great, and I stayed to help clean up which involved a lot of standing around and talking actually.

The Fourth day was Sunday. And Sunday is the day of rest in many traditions. In my case, the day of Consequences. Here we come, Post Exertional Malaise! Instead of doing my laundry, dishes, and any other household task that being away for two days might have uncovered, I slept as long as I could and spent most of the rest of the day on the couch reading, talking on phone or watching screen-based entertainments. No brain fog or headache, hooray! Just the “I can’t move, I hope that’s all right with you” sort of deal.

Today is the following Friday. I have been about 50-60% of “feeling great” all week. Yesterday was a bit better and today I am a bit lower. Tomorrow I have another event at which I will need to sustain mental focus and physical energy from 2-6pm. Glorble snop. It’s just this time of year, you know!

So I think I will make my November and December the easiest I can and think about these past two weeks when taking on commitments. And yes, fun holiday social engagements are indeed commitments! I will need to make this as simple as possible and if I can do without much travel, all the better.

Here’s what I know:

There are weeks coming up where I will have several consecutive big events. I must accept that the following week I will be 50-60% of “feeling great”. And that will be a week which will house a few more big events, including some major holidays. I will have to say no to things that I prefer to do. And I will have to communicate clearly so that I will keep my professional and personal relationships intact. I have an index card that tells me to forgive myself for having this illness. I will be looking at this card, internalizing the sentiment.

All this I must tell myself, so that I can live my life to my best ability, even at 50%.

Surviving the conference: Planning

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I am doing something risky. I am spending two consecutive days away from home at an intensive conference related to my work. The next day after that, I have a rather important event to attend. I would like to do all this without crashing. I was pretty anxious at first and thought I maybe could not attend. But then I made a plan, and immediately realized it was doable.

Or at least, I am doing it! We hope this works:

  • Made food plan for my wacky restricted diet, yummy foods that i can easily carry around with me and don’t need a kitchen.
    • Got needed ingredients
    • Cooked dishes ahead
    • Divided meals up into buckets ready to go
  • Made arrangements to stay overnight in town with family (I’m 70 miles away)
  • Packed clothing and toiletries
  • Packed laptop, notebooks, pens and other needed items

Permissions and Rules:

  • I am allowed to take a break whenever I want
  • I do not have to be on time or stay late
  • I do not have to worry about things I cannot take care of while away

SO. Day 1, so far so good. Next week (or as early as tomorrow) we shall see if I have successfully avoided relapse.