14 Thursday May 2015
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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
25 Wednesday Mar 2015
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…and have not for a few days, so hooray!
Notes to self:
Waking up and feeling alert, with clear mind and like myself, what a gift this is.
19 Monday Jan 2015
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Doing laundry is a victory.
It extracts a bit of your life force to get through the laundromat process, but you exchange this for some clean clothes and bedding.
And then you sleep better.
Victory.
07 Sunday Dec 2014
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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.
04 Thursday Dec 2014
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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.
03 Wednesday Dec 2014
Posted in Status Report, Things that help
Tags
CFS, goals and strategy, laundry, manage stress, post exertional malaise, recovery, rest, results
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:
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!
14 Friday Nov 2014
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Tags
brain fog, CFS, managing energy, pacing, post exertional malaise, recovery, results, travel plans
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.
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.
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%.
28 Tuesday Oct 2014
Posted in Status Report
I cannot stop being hungry today. Eat, satisfied, hungry again, a faster pattern than normal. But I am in good spirits. Although tired and “giving up” for the day, taking to the couch with laptop will give me a smidgen more activities to complete that I have not the energy to do from office chair.
I am pleased that today my naturopath gave an alternate perspective that I can try which rather than managing symptoms, is a test for cause. It just makes more sense to me. So my new health adventure is to test for heavy metal toxins. Fun times! But doable and results will be helpful. Hopefully very helpful, but I’ll settle for simply helpful.
And the other thing is once again a diet change and supplement array to combat yeast overgrowth. this won’t solve my greater problem but it will help my current “minor” problem, which is quite annoying indeed. Which is an IBS kind of thing with exacerbated PMS thrown in to boot. I know, aren’t you jealous?
I have to say though, I am pleased to undergo a treatment whose side effects are not worse than my condition. I am still working with my medical doctor; I will share this adventure and all connected results with her as well.
And for now, back to being hungry, and hungry again. Ah so it goes.
24 Friday Oct 2014
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20 Monday Oct 2014
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Now is the time in my treatment where my doctor would like to add an anti-inflammatory to the anti-viral medication that I have been taking. Because I am sensitive to medication, I will probably get at least one side effect. I definitely need to be careful about what I introduce to my system, since the whole point of treatment is to increase health, well-being and general functionality.
So now I am shopping for side effects, needing to choose an affordable drug with side effects that I can deal with should they arise. I am seeing how scary the world of anti-inflammatories is; from “suicidal thoughts”, panic attacks, blurry vision, to the very symptoms that I am working to prevent. Never mind cost or availability to insurance, or any of those more mundane details.
I am understandably looking into alternative treatments, nutrition and otherwise. These may also carry side-effects but perhaps more gentle?
The thing that occurs to me is that my actual illness is almost like a collection of side-effects in itself. All of the medication I am taking or looking into is really for a different disease. This is all a big experiment. I am betting my life on it. In one sense I must proceed with care, and in another sense I am already “all in” and simply need to bravely face whatever comes next.
