Getting better at pacing, but…

Tags

CFS, goals and strategy, pacing

This week I begin each day with a detailed and timed plan. I can select up to 2 hours of computer/mental based tasks, schedule rests in between as well as limiting my errand-running. I am giving myself one “big event” per week, with days around it of added rest. It seems to be a good plan, though of course “stuff” can “happen” that throws off my plan. I am getting better at knowing how to adjust accordingly and have had 3 successful days of this.

Today though, I messed up. I met a friend in the morning for what used to be a run and is now a slow walk, and we walked for 1 hour. I felt fine all during and adjusted my walking pace so I would not be “pushing it”. However when I returned home I realized it had been too much. I was unsure whether I needed to nap before taking a shower and I felt too depleted. After my shower, which I prompted myself to go through all slow and methodical-like, I took a nap which ended up being sleeping for 90 minutes. I did not wake up refreshed, and was “pushing it” to get through my morning routine, feeding myself and some tasks. Not so good!  I had a 2hour meeting “out in the world” in the afternoon, and required caffeine to regain my mental focus. Meh.

Next week, we’ll try 30 min for the walk and see if that is an improvement. As for this evening, it shall be spent sitting or lying down, breathing in and out quietly, and perhaps getting to bed on the early side, what.

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Booksmeller

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books, reading, sensory input

Hello, my name is Julia and I like to smell books as I read them. I guess I have a thing for ink and paper. I find myself getting all frustrated trying to read with a cold and I can’t smell anything.

Guess I will listen to podcasts today instead, eh

Thoughts on having a cold

Tags

count blessings, musing

Having a cold is odd. It brings feelings from the beginning of my life into the spot where I am now, and the feelings are the same.

There is that familiar smell that for me heralds a cold; I cannot describe it but all colds have smelled this way to me.

There is the thing where I don’t want anything to be close to my face– I guess a heightened claustrophobia? I also feel farther away from things than normal. My senses are filtered through an invisible pillow, like if cotton batting were air.

I am woozy (is that the fatigue?) but strangely energetic (maybe remnant from the decongestant 2 days ago?). My body is comfortable on the couch but my mind is active.

***

Today also I feel calm and happy. I woke up with this wonderful feeling, even though still sick with cold. Could that have been refreshing sleep?

I feel thankful that the sore throat has diminished. The cough sounds kind of awful but I like to think it is heralding the exit from my body this acute condition. Or parts of it. (yuck)

I have strange pockets of heat– the bottoms of my feet, behind my ears, my fingertips. These sensations are new, perhaps more CFS related. (ah, mystery symptoms, you are now so familiar too)

***

When I was a child and I had a cold, I would stay home from school. I remember playing through a particular book of music on the piano, just playing all the pieces however well I could and returning to the ones I enjoyed most. I think from this time I remember one from CPE Bach. It was one where the right and left hands alternate a lot so felt balanced and fluid playing it.

I remember this every time I have a cold. Maybe today if there is a point where my back does not desire pillow support, I will play some piano. I am playing it in my head right now.

Be not the Squirrel

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CFS, managing energy, not-to-do, pacing

As much as I enjoy observing the squirrels around (and on) my house, I must remember to refrain from being the human embodiment of squirrel energy.

I should be more like a pond turtle, cruising slowly in a cool, clear pond. It calmly gets to where it’s going, it’s not worried about where the nuts are.

Starting my NOT TO DO list

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CFS, goals and strategy, not-to-do

Having read this article: http://www.cfidsselfhelp.org/library/making-a-not-to-do-list

I see that I can benefit from listing some things NOT to do. I am a beginner at this, much easier to list out plans and commitments, isn’t it! But we all start somewhere. I start here.

Things I shall not do:

1. Push myself
2. Add items to my schedule without removing an equal number first
3. Feel bad about having a short daily to-do
4. Schedule travel without scheduling rest and preparation days before and after
5. Assume that others will have negative thoughts about me
6. Eat sugar, even if it is looking at me funny

OK that is enough to start with. Resting now.

I just realized

Tags

CFS, goals and strategy, pacing

I just realized that although I have a good morning routine that I can move through on good days and bad, I do not actually have an established evening routine.

I bet this harms my waking and exacerbates insomnia. I sometimes have evening plans and sometimes not. When I do, there is no real pattern to how long they last and when I get to bed.

My inclination for how to solve this:

1. Observe what helps my sleep
2. Allow “time pillows” between last active task of the day and going to bed that put in place what helps me sleep
3. Observe when winding down time needs to start
4. Schedule winding down time. This will mean learning to say no to evening activities I might otherwise enjoy.

Will this help? I don’t know. Try and see.

Reflection

Tags

CFS, goals and strategy, pacing

I pause on the eve of my one vacation item this year, a 3 day self-made retreat with a friend. I am feeling draggy and I don’t want to pack or eat or clean or even rest; but all this is all right.

• I do not have to move quickly.
• I do not have to power through any activity.
• I am obligated to none but my own peace of mind.

I have in fact, preserved my own sense of peace, which was a goal I had this week. I have done this through moving slowly, taking frequent breaks, allowing myself silence and space, and also by allowing myself to listen to programs I enjoy and to spend time with people I enjoy.

I can bring this sense with me, whatever activity it is that I do next.

Theory on sugar revisited

Tags

CFS, diet and nutrition, fatigue symptoms

Yes. Well, I did go ahead and had a bowl of non-dairy ice cream on the 31st day of my 30 day no-sugar challenge. For science.

Results:

• Immediately my stomach felt bloated and heavy.
• Within ten minutes I received a small headache. It went away in the evening, but still.
• This morning I was slow, woozy, got up way late, and had a bit of brain fog which is currently decreasing, but still present.

Conclusion:

I will continue my exclusion of processed sugar. My body prefers to be without it.

Epilogue test:

This afternoon I consumed a dessert with much the same ingredients as the frozen dessert, but no processed sugar added. So far no differences in general body experience, so I am reasonably certain that I am right about this. Also eating fruit does not affect me negatively, so plenty of sweet items for me to consume.

 

Water temperature

Tags

CFS, managing energy

I have noticed that if I finish my morning shower with cool water, I feel less noodly and have more energy. And that much closer to a focussed mind.

🙂

A theory on sugar

Tags

CFS, diet and nutrition, fatigue symptoms

My theory is that sugar exacerbates fatigue and brain fog symptoms.

I have been abstaining from sugar for the past 30 days, a pact I made with a friend. Within the first two weeks I dropped 10 pounds. This was during a time of heightened fatigue, and I have been exercising very little, so I am reasonably certain that the abstention from processed sugar led to my losing weight.

I have been gradually improving from fatigue symptoms as well, and for the past two (?) weeks I have experienced only the fatigue; the nausea, pins and needles in my hands and feet, brain fog and headaches have subsided. I have been taking prescribed antiviral medication as well as making changes in my schedule and indeed general approach to life.

So then, last night I had a restaurant-based dinner which alas contained the dreaded ingredient. This morning I woke up feeling reasonably well, but some brain fog was back. I am normally a total morning person who does not have trouble feeling alert, so for me this was a distinct change.

Oh, I suppose it could have been any normal ebb and flow in the life of people with Chronic Fatigue but I am suspicious. My conclusion is to continue to stay away from it as I can, and see if I don’t continue to feel better. And if I would like to have some dairy-free frozen dessert at some point, it will be an experiment in the name of science so I can track how I am affected. Yeah, that’s the ticket.