New"er" symptom

I'm home safe and sound. Not completely crashed (yet). Travel was very very difficult but worth it because it ended, with me being home.

To get "credit" for the course I just took, I have one assignment I still need to do worth 25%. I'm not even sure if I will. I'm feeling disillusioned by the whole experience.

Had I known how difficult and awkward it would be to do that course, I wouldn't have tried. But hindsight is 20/20 right? I feel like I've been through some kind of trauma. I pushed myself so hard to move through the feelings of illness and fatigue that each day by the time I came home I was crying or close to crying (not in public mind you).

It was awkward dealing with the social aspects...people asking why I left class, people asking me to do projects or social things that I couldn't do but didn't want to have to explain. When I missed three days in a row, people asking what was wrong, how I was.

It's a weird dance this "trying to participate" isn't it? On the one hand I wanted to be another student...defined by my personhood and studentness, not by the fact that I'm ill. I think some people were purely curious and perhaps others sympathetic; however, I didn't want to have to share my story with everyone. Ultimately I didn't want to be different.

It's funny too, I did not come out of the closest with my diagnosis either. I just told the three or four people I had to, that I have an "immune disease". Very much the truth; however, I guess not the whole truth.

One last thing and it's a question for my fellow M.E.ers.

I'm not someone with M.E. who struggles with neurological symptoms to the degree that most do. In fact, looking at the new international criterea, I'm short in the neurological category (by one or two) and might not even get a diagnosis. However, since the spring I have a newish and definitely increasingly problematic symptom: tremor.

Now I've had tremor (more like an internal buzzing) since onset on and off, but this is a much more "motor" tremor. It's very visible and much worse if I'm trying to do any fine motor task. I've broken numerous dishes, dropped things, had trouble with my fork, a pen, and even typing. This morning it took two hands to lift my mug I was so shaky. It's worse if I'm tired or hot (like after a bath). And my roommate this summer noticed it (awkward). It's starting to get bad enough that it's limiting my function to some degree.

Sound familiar? Thoughts? I'm going to ask my specialist about it when we have a phone consult next week.

Bad crash: Options

Well I'm in a bad crash. Not unexpected.

I've attended one hour of class this week.

Very weak (trouble lifting arms) and exhausted.
Mild sore throat, hoarse voice, tremors and shakes. Major OI. And the worsened breathing/chest ache of course.

So my plan was to head home. However, the course is more than half over and I didn't want to lose it, so I contacted the profs about finishing the assignments from home.

Unfortunately they aren't willing to go this route.

They would rather me stay, and attend portions of class when I can, in order for me to get credit.

This makes for a difficult decision. I fear if I head home and lose the credit that's it for the PhD. This would have been my last course; however, I NEVER want to put myself through something like this again. But without finishing this course I can't move forward.

On the other hand, I talked to my housemate Joe and he said it's really really hot at home with no air conditioning and maybe I'm better off here. At least here I'm laying sick in an air conditioned room.

Getting a physician's advice popped into my head but my experience with GPs is that they are mostly ignorant and useless when it comes to this illness. Although I wonder if my WBC has plummeted? Even so, all they ever say is when it does, is "don't get sick". Aren't I already?

To top it all off my suitemate's a bit freaked out unfortunately. Perhaps because I lay in bed most the day sick looking pale? She thinks I should go home and "get well".....wouldn't that be nice. She even approached one of my profs about it today.

I'll let you know what I decide, but for today I'm just resting.

Frustrated

I'm frustrated with myself.

On the one hand I realize it's not my fault - this illness, how it affects my body.

On the other hand, I WANT to function enough to get through two more weeks.

Unfortunately the weekend wasn't enough time for me to recover....from the cumulative energy output of these past two weeks.

I should have skipped today. However, I woke up this morning and thought "I should go, even for an hour", "show a presense".

I knew walking the two blocks that I was wiped: winded, weak, fluy, sick.

So I sat for the first hour just waiting for a good pause in the discussion so I could tactfully slip out.

The hard part is how much I want to be here doing this. Intellectually I'm present and engaged. But the physical seems to overrule that mental/intellectual...it's very powerful and persistent.

Breaking all the rules

I've heard many "rules" or guidelines when it comes to pacing and M.E/cfs.

My M.E./CFS specialist is a HUGE proponent of pacing so I feel like these rules (and versions of these) have been drilled into my mind.

1. The 10% rule: Only increase activity by 10%. For example if you can walk slowly for 10 minutes and you want to bump it up, increase your walk by 1 minute.

2. The 50% rule. Assess your energy at the beginning of the day and do only 50% of what you think you have the energy for. That way you keep a "balance" in the energy bank.

3. Make sure you can manage something consistently without crashing for 3 months before you increase your activity level.

4. Small increments. Break up tasks and activities into small increments and take rests in between.

5. Learn your warning signals: If there are symptoms that appear when you're on the verge of "too much" (e.g. tremors, sore throat etc.), learn to heed them rather than pushing through and incurring a crash.

6. Rest on the "good" days. When you're having a good day, don't try to get everything done. Instead, rest the same as you would on a bad day.


During the last two weeks I've broken every rule listed above.

In a scientific way, I'm conducting an experiment on myself. I could never endure this schedule long-term. It's a short-term experiment. And it's not like I'm trying to work an 8 hour day. I'm just trying to manage 2-3 hours of class 4 days a week. But for someone with moderate M.E. this is A LOT!!!!

Feeling as viral and fluy as I do, emotionally and mentally I couldn't keep this up for long.

But can I manage two more weeks of it (both physically and emotionally) without instigating a major relapse (vs crash)? That is the question.

Yesterday I was quite crashed and thought seriously (again) of heading home.

Today I pushed too hard AGAIN and left class when I was shaking and dizzy rather than leaving BEFORE it became unbearable.

I'm very clearly breaking all the above rules.

Now the weekend is here and I will try to follow ALL the rules at least for two days.

Week Two

I'm not feeling too well. On the other hand, I'm feeling less sick than I expected given what I've been doing activity-wise so far this week.

Today another student and I presented the morning class. It took a fair amount of prep and it meant that I had to stay for the full four hours. At the end I was high on adrenaline and coffee so I didn't feel too badly.

I walked home and lay down immediately. As the afternoon wore on I felt worse and worse.

Tomorrow is a rest day. I'm not going in to class....it's a session I've done before and therefore a good one to miss.

I find myself contemplating this process of straddling the line between catering to my sick body and participating in this course. It's very challenging. Partly because I don't know from day to day which "push" will cause a crash. Also, I'm wrestling with my desire to participate, learn, and socialize with my need to rest and placate this monster of an illness.

That's it for my update. More later once I've rested up.

On the positive side, it's looking like I just might pull this off!

Ready to go home....

I'm not saying I'm heading home....just that I'm ready to.

The travel Sunday was so exhausting.

It was a flight of 2 hours, 3 hours at the airport and then a flight of 1 hour. Then meeting my suite mate who is a very nice, intelligent, and interesting woman but also chatty.

By Monday I was exhausted already but I forced myself through a welcome breakfast and then two hours of class. I came back to my room and collapsed. I was so exhausted and felt so sick. I was ready to quit right then.

I rested in bed from noon until night and felt a bit better.

Tues I did two of the four hours. I escaped at break - awkward, but a good choice.

Today (Wed.) I forced myself to do three hours of the four but came home and fell apart emotionally and physically.

I just don't seem to have the stamina for this.

But after all the money and effort and prep work spent getting here I really don't want to leave.

And having spent most the last 6 months lying down (couch and bed) even sitting up for two or three hours is difficult let alone the interacting and walking to and from the building.

I woke up today with a sore throat and flu ache and I should have stayed home.

I have a sore throat every night when I'm tired but if it starts in the morning it's a true warning sign for me.