Cycles

For whatever reason, I often post when I'm feeling pretty sick.
Usually in the afternoon on a bad day. The last two days I've been feeling decent and I've been out of the house both days. So I thought I'd post now rather then when the crash hits (if it does).

I think I write when I'm feeling especially sick because it's a release .....as many of you who read this know through personal experience, there can be a cathartic effect when writing about how difficult it is to suffer chronic illness. Sometimes after writing, I feel like I've let go of something, but also that I may have connected - that I'm not alone, and I've sent my voice out into the great universe (or Internet as the case may be).

Morning is my best time of day. I always feel the least sick about an hour after I wake up. This is usually the time when I do some work if I have some to do (reading, editing, marking, writing).

My experience with this illness is an experience of cycles.

I have daily cycles - morning OK (or least sick) with increasing fatigue over the end of the morning into the afternoon, usually peaking in the 3-5 pm period. After 6pm I start to pick up a bit. I feel better than the afternoon, but still sicker than the a.m.

During the week I also have good and bad days...this can relate to how much I've been doing and if I crash, generally it's about 36 hours after an activity.

Then there's the yearly cycle...I got sick on the weekend of June 15th, 2002 and for the first several years during the fall I thought I was "getting better" only to be thrown into some-kind of relapse later in the winter. After 8 years I think I have enough evidence to support my observation that I seem to pick up every fall and then get worse sometime in the winter (late Dec., January, or Feb). My worst months generally seem to be March and or April.

For as long as I can remember, I've felt a connection and draw towards the natural world. I don't need to go into a history of me, but I spent much of my childhood outdoors playing in the fields, ponds and woods near our home. This love and passion led me to pursue degrees in outdoor recreation and natural science as well as a career in outdoor environmental education (for 8 of those years as a wilderness guide working mostly with youth).

As someone who spent so many years outdoors, I was (and still am - although less so) aware of nature's many cycles. The cycles of the moon and the sun for instance, or the cycle of the seasons. If you stop to think about it, we live in a world of circles or cycles. The earth cycles (rotates) and revolves (circles) around the sun. Life itself is a cycle - birth through death - and when things die and decay they serve to nourish other forms of life through their circle.

So I guess it doesn't surprise me, looking at the big picture, that whatever this illness is, I experience it in cycles. And I'm not alone. Sue at "learning to live with CFS" http://livewithcfs.blogspot.com/2010/12/laura-hillenbrand-in-elle.html
was mentioning a similar daily pattern to mine on her blog last week. However, there seems to be all kinds of variety within the M.E. community. People, for instance who never feel well, or never seem to have a "better" time of day or month. Or others who have an opposite daily pattern to mine - that is, they feel sicker in the morning and best in the afternoon.

If and when this illness ever gets figured out, I don't expect we'll all end up classified as having the same disease. In fact, I barely fit some of the descriptions as it is. I was diagnosed in the U.S.A. with the Fukunda criteria and then when I moved back to Canada with the Canadian Clinical Definition. But when I look at it, it's a stretch http://www.cfids-cab.org/MESA/ccpccd.pdf (for example, my neurocognitive issues are minor and I have no pain outside of throat and lymph nodes).

Taking it easy

I've been taking it easy.
Teaching is done (as well as all my grading)
I'm not taking a course right now
I'm not doing any editing.

I don't think my little get-away a couple weeks ago was a good idea.
I don't blame myself for going because other times I've gone and not suffered significant consequences. But I think at this point in time it was too much.

I live with my friend (and cousin) and her husband. He's been away for a week and a half and she works most evenings. I think the time alone (not counting Teagan my dog) has been good. I've been resting lots. During the day I've been letting my cousin do errands for me and really she does almost all the grocery shopping. I hate feeling dependant or like a burden, but the last couple weeks I've been asking for help, accepting help, and feeling grateful for help. My friend has even done my laundry and this morning I went so far as to ask her to fill the dog food container for me rather than lifting the bag myself. A few times when I've had to go out the last week or so, I've asked her to drive me which really seems to help me from crashing as hard from the outing.

I've been feeling fairly sick. I spent the weekend running low-grade fevers (99-100F) and feeling the chest/breathing ache that comes with my sicker days. Interestingly, though, my throat hasn't been too raw. The fatigue is bad, but not severe. (I mean not severe for M.E. - a normal would probably find it pretty severe).

I was trying to walk 1/2 a block again for a while, but mostly I haven't been doing that either. While I think the movement helps, I've had almost a second sense lately that even that amount of exercise isn't the best idea right now - I think even very short walks are making things worse.

I don't know why I'm treating myself with "kid gloves" right now, but I am.
The idea of being "disabled" is really hard for me to get my head around. For some reason I think of myself as sick, rather than "disabled" although the sickness does impose limits on me.

After 8 years of being sick, usually I take the philosophy that I want to do the absolute most I can within the imposed limits. I want to feel as if I'm doing something useful and/or meaningful. For some reason I don't feel that way right now. I just feel like resting, laying in bed, playing online scrabble, reading, napping, and drinking coffee or tea. I have three events/outings I want to do in the next three weeks. I'm going to rest as much as I can before each of them. Otherwise, I think I'm mostly going to stick with being a shut-in. Maybe I can build enough of a reserve of energy to get through the holidays without a crash.

Realistic goals

Because my health and functioning status fluctuates, I have trouble setting realistic goals.

I've spent the past week mostly crashed and sick from my little vacation. Almost to the degree that I wish I hadn't gone. It's got me thinking about how to set realistic goals within the limits defined by this chronic illness?

Today I tried going to the grocery store to buy a few vegetables and crashed hard. I'm sure all of you with M.E. know what I'm talking about. The dizziness, weakness and overwhelming flu feeling sets in. Standing in line just for a few minutes was like climbing a mountain (which I've done), but harder. It was all I could do to hold off crying until I hit the car.

It's really hard for me to figure out how to set realistic goals for myself. I don't want to over do it and crash, however, I don't want to give up and never try anything. Over time I've improved to some degree. If I'd never attempted anything, I would have never known what I could/couldn't manage. From those years when I was mostly bed and house-bound, I've re-entered the "real" world in slow steps.

• First was a once a week art course - no pressure, no expectations
• Next was the masters degree, the first semester I took only one course
• Next I tried two courses during one 12 week semester and managed (just)
• Doing most my work from home in bed I ended up with a Masters degree after 3 years
• Now I'm plugging away at a PhD slowly, but I wonder if it's a realistic goal given my fluctuating functional status? I had to take medical leave over the summer and this fall (teaching 4 hours a week) I was at my absolute limit.

Eight and a half years into this illness, I still can't seem to do more than one out-of-the- house activity two days in a row without crashing. If it's a good day, 2 or 3 hours out of the house (not two days in a row) is doable without a crash, especially if someone else drives and the activity doesn't involve any standing. I can't seem to exercise esp. if I increase my heart rate EVEN SLIGHTLY. On good days I can do gentle walking (between 5-10min max).

But all of these activities are subject to the moods of the illness. While yesterday I managed to do a little art at home and walk around the block, today I couldn't manage 5 minutes in the grocery store and last Tuesday and Wed. I couldn't manage much more than laying in bed or on the couch - let alone leaving the house.

• How do I come to terms with these limitations? How do I deal with the fact that my level of disability changes day to day (often unpredictably?)
• How do I set realistic goals within these limitations?
• And for me, the hardest struggle of all is coping with my sickest days....where do I draw the emotional strength to get through them when the "disease" seems to penetrate into my every cell and even breathing hurts?

These are the questions I'm pondering this week.

After posting this, I read a recent blog entry by Laurel who has severe M.E. It relates to some of these questions I'm struggling with and is eloquently written. If interested, check it out here: http://dreamsatstake.blogspot.com/2010/11/finding-grace-when-life-is-hard.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+DreamsAtStake+%28Dreams+At+Stake%29

windy day photos

Vacation - Day 2

Some people with M.E are so disabled they can't leave the house. In this case, any kind of vacation that involved travelling would probably cause a relapse.

I have a moderate case of M.E. I contend with flu symptoms, fatigue, and weakness everyday; however, I can fake my way through social gatherings or outings on good days (sometimes even without consequences). I have also managed to study and work a little since 2006. I'm sincerely grateful to be able to do this as I know that the M.E. could be a lot worse.

This week I decided to take my art supplies and travel to a nearby town where there's a printmaking studio for a few days. I've done this other times. I stay at a beautiful but inexpensive little motel. My bedroom has an amazing view of Lake Superior. It's just nice to be some place different. It feels like a vacation.

The most difficult part for me is the drive. Many people with M.E. can't drive for various reasons (dizziness, weakness, the energy it takes). If I drive any kind of distance, I incur a crash the next day. The longer the drive, the worse and longer the crash. The exception is that on a good day I can drive short distances and do an errand (if the errand doesn't take too long).

I drove yesterday to get here (1 1/2 hours) and today I woke up sick and fatigued. I'm looking out my window at the lake and listening to the waves crash on the rocky beach.

I'm hoping to be able to "rally" enough to do a little art today. If not, I'll lie here and enjoy the scenery and feel grateful that I'm well enough to go on vacation. Looking at the Lake I'm once again in awe of this beautiful world that we call home.

Running

I've had a really good four days. Last week I spent 5 or 6 days with some kind of stomach infection (second one of the fall) which was pretty bad. But the last four days I've been wrapping up my class and marking, marking, marking. The whole time I've been feeling pretty decent. I've had to go in to the U for a few hours the last 3 days and I've managed OK. I mean I'm no ball of energy, but the ill feeling has been quite minor.

Yesterday was the final class and one of the students presented a lesson and activity that included running. I could have just passed and "observed" the activity, but instead I participated. My compromise what that I mostly walked. However, at one point I jogged a little and while doing it I was thinking, "This is so nice". "It's been so long" and "Wow, am I ever out of shape!". As I crash from physical activity I wondered yesterday whether I would crash, and if so, when. This morning I woke up and thought I'd gotten away with it. Well it's been exactly 24 hours and it hit at about 22 hours. The immune and fatigue symptoms arrived like a freight train.

It makes the cerebral part of me think about what M.E. really is? I figure:

1. There must be some kind of "damage" happening when I'm active. Something related to energy metabolism. Something that takes 24 to 36 hours to hit the immune and/or metabolic system.

2. Or, if it's some kind of virus, the activity (physical stress) does something to the virus to make it more active....It could be like chicken pox which, once you've had it, lays latent in your body until your immune system becomes super stressed for some reason and you get an outbreak of shingles.


Whatever the case, this is both an interesting and stupid illness.