Art - Creative for a Second

I'm part of the Creative for a Second journal project. These journals (a total of 8 at this point) travel around the world to people with M.E., and when they reach someone, that person has two weeks to do something creative in the journal before passing it on.

I received journal #7 a week ago and it was a little intimidating because I was the first to receive this journal. Originally I was at the bottom of a list so a journal would have arrived full of art and inspiration. Luckily there's a facebook page where people have been posting their work so I didn't really feel like the first one to have to produce something. Some of the art and creativity I've seen posted by people in this project is so amazing! Which is awesome, but also intimidating.

So I decided to do a block print, which is my preferred medium when it comes to art . I'm in no way an artist, but I really love doing amateur printmaking (at least I say I do until I'm in the process and remember how much energy it takes and how many times I produce things I don't like - around 19 out of every 20 blocks I carve).

I'll post the two here that I put in the journal. I also did a creative free verse poem/drawing thing which I'll post here at some point. Photographed, the blue one looks OK, but on paper, the green one (which is my favourite of the two) has some really cool colour tones that just don't show up here. Anyways, It's not my best work. But it did capture a little of what I wanted to express about having M.E....I'll let you interpret it how you want.

To drug or not to drug?

I've been on an antiviral for the past week. At first it caused terrible nausea and headache, even on a low dose.....so I lowered the dose (my Dr. had thought I might need to at first). After lowering the dose, I was able to bear the side effects for the second 1/2 the week. I was VERY weak/fatigued all week and had viral symptoms (sore throat and painful lymph nodes) as bad, if not worse, than usual. The worsened fatigue and viral symptoms could have been caused by the anti-viral, or just a continued crash from my visit south.

I did some online research and found that the antiviral (famciclovir) only keeps herpes viruses from replicating, it doesn't actually get rid of a virus. While my Dr. and I both suspect I have some kind of virus, who knows if this particular drug targets it?......it just got me thinking. In my research, I found one case of a Dr. who had used it in a severe case of mononucleosis with excellent results, otherwise, outside of shingles, simplex herpes, and chicken-pox there isn't much info available.

So, I'm going OFF the drug after only a week.

If later in the summer or autumn I start to get an especially large flare of viral symptoms, I may try it again. Unfortunately I can't discuss this with my Dr. until Dec. when I see her, but I decided the side effects aren't worth it, especially since it seems this antiviral doesn't get rid of viruses anyways.

It's funny because when I feel awful I'm so desperate to "try something" and yet after trying something for only a week I'm deciding it isn't worth the hassle of dealing with the side effects at this point (especially when this antiviral is experimental for M.E./cfs anyways).

The last two days my energy has begun to pick up just a little. I'm hoping the trend continues. I'm desperate to "get out" and do something. For the last week, I've been doing editing work in the mornings (part of my graduate assistant work) and resting in the afternoons and evenings.

placebo effect

Warning: long post ahead!

I've been home for a few days. I've spent most my time resting. It's so nice to have my bed back. As well, while it was great to see family, the pressures and energy of visiting were draining for a person who's ill.

It was ghastly hot down south and that too, took a toll on me. The day my friend Cathy drove me to Toronto to see my specialist, as we were driving into the suburbs, we noticed a haze -almost like a cloud. At first I thought it was the humidity, then I realized it was more than that. It was clearly a haze of poor air quality. It made me feel so spoiled and blessed to live where I do. Although it's been hot here too, the air is cleaner and there is less humidity. My roommate called it "freshness" the other day.

The photos I've included here are from day trips to local sights with family. The one of the garden is my mom's "bank". My parents have a steep hill on their property and she's filled it with perennials and flowing bushes as well as little paths made from natural rocks and stones. The photo does not do it justice.

The last day of my visit I saw my specialist. It was a good appointment. It's just such a relief to talk with someone who sees 100's maybe 1000 patients with M.E./CFS a year. She's been doing it over 15 years. There is such a loneliness to having an illness that's invisible (you can't see I'm ill by looking at me) and virtually unknown to most regular GP's. I was so so sick this spring and yet my GP here knew very little about the illness and had nothing useful to offer me.

Among other things, I talked with my specialist about how with M.E. there's such a number of disturbing symptoms. I can't discuss them with my GP without presenting myself as a hypochondriac. Unfortunately, I've had some fairly significant "new" issues this year that I just sat on (and lived with) waiting to see my specialist who I knew would take them seriously. I was able to discuss most of them with her, but it may be that she can't help me too much with them, being that I see her at best maybe two times a year.


My specialist's main form of treatment for everyone is "pacing" and "rest". We talked about my inability to rest when I'm doing well. For some reason when I'm feeling decent I feel as if I want to do lots. I have trouble believing I'm really that sick (even if I was in bed feeling awful a few days earlier). I think it's a combination of things: guilt over being on disability allowance especially on my good days, my desire to be active, my ironically "high" energy personality, not wanting myself or others to perceive me as weak or useless.

Ultimately I think my specialist and I disagree that all relapses are caused by a lack of pacing. I think sometimes as M.E./CFS sufferers we can't control everything. I think we can do everything "right" and still have crashes. That being said, I am going to try to pace a bit better again anyways. When I was visiting family I was feeling decent so I threw caution to the wind and did WAY more than I should have rather than face the awkwardness of having to say "no" I can't do this or that. I get so sick of always having to advocate for myself and my need to pace and rest! Now that I'm home and ill, though, I guess I wish I had insisted on more rest. Maybe the solution is to become a hermit (NOOooooo!).

As for the antiviral, I started today. It will be hard to tell at first if it's working due to the regular fluctuations I have with the illness. Hopefully there aren't too many side effects and I can stay on it for a while and get a sense long-term if it makes a difference.

My Dr. said to be very careful not to push too hard if I start to feel better. She had a physiological reason why, but I can't remember the explanation. Only that if I start to improve, I shouldn't jump into a more active lifestyle - that I should continue to pace and rest throughout the day. As for the placebo effect (improving because you believe something will work) I don't think I will get it. I've tried WAY TOO many treatments over eight years to get my hopes up.

Trying something new.....

I'm exhausted from my trip/visit south. I overdid it (of course). Not sure how long it will take to recover, but I spent most of today in bed (where I am now). I hope if I dedicate the weekend to resting I can start doing some editing type work at home by Monday.

I have some interesting things to report, including a good visit to my specialist - which was much needed. She really is wonderful. I wish I could have had two hours with her, but still she gave me more than 30min instead of the scheduled 20min appointment so I can't complain.

I may try some Famciclovir which in the U.S. is Famvir. It's an antiviral. Has anyone who reads this blog ever tried it for viral/immune symptoms related to M.E./CFS? I did a 3 month round of low dose Valtrex once and didn't notice much difference. We both thought this might be worth a try given my inability to rid myself of what she thinks in an ongoing (eight year long) low-grade viral infection.

Can I just say that this a ridiculously hard illness to understand on so many levels? On that note, I've also just signed consent to have my blood and DNA contributed to the CFIDS BioBank in the U.S. (Canadians are invited to participate which is nice). The samples are "banked" and researchers can use them reducing the time and money researchers put into participant recruitment.

I'll blog again soon, once I've rested up.

Short update

I thought I'd write a short update. I'm in southern Ontario for a few more days....my specialist appointment is on Thursday, then I fly home Friday.

My body has been holding up just great. Even though my family knows about my illness, it always takes a lot of energy visiting. Right now I'm staying with my brother and family and playing lots with the kids (my niece and nephew). This amount of activity two months ago would have completely floored me, however, I'm holding up pretty well. I've been taking rests throughout the day and my usual flu symptoms are very minor. It's so nice to have a break from feeling completely ill and dragged down by my body. Of course I should probably be more prudent so I don't crash from this visit later, but I don't get the feeling I will.

It makes me realize I probably could have managed the month long course. At the same time, I'm not a fortune teller - I can't see the future. I made the best decision I could based on how ill I was three weeks or so ago. I really DO need to get some work done, though. I'm doing an abysmal job of fitting any tasks into my schedule.

Slowing down.......

It's really hard for me to slow myself down lately. I've had a couple weeks of feeling somewhat better. I seem to have only the occasional bad day here or there (usually a consequence of doing something physically active). I usually start to pick up in summer. I think it's all the vitamin D. Despite not attending the course this summer, somehow I already have a packed summer schedule.

For example, I leave this weekend to visit family in southern Ontario, then see my specialist. I'm really really looking forward to both. I stay with my Aunt when I'm down south which is a fairly good set up. It's quiet at her house most of the day so I can rest when needed. My parents live just down the street.

I'm in serious need of a visit to my specialist after a really rough winter/spring including some new symptoms this year. She's overworked and I have the last appointment of the day so I expect it might not be too productive an appointment. I'm trying not to get my hopes too high. I have a list of things to discuss with her (she likes to deal with only one issue an appointment which is hard when I only see her once or twice a year).

I'm posting a few photos for fun. One is of my flying dog!!!

I've also added the new poll of the month for July - for anyone to vote on.

As most of you with M.E. probably know, this was a big week for XMRV retrovirus research and buzz. I found the situation really depressing. The study (done by the FDA and NIH) that found a M.E./CFS link to the retrovirus and was reportedly already peer reviewed and accepted for publication got suppressed for the time being. Meanwhile the negative useless study done by the CDC (that didn't even use people with true M.E./CFS) was published.
See a description of the events here:
http://www.nature.com/news/2010/100702/full/news.2010.332.html?s=news_rss

See the assessment (somewhat and appropriately scathing) of the CDC study by a CFS researcher and patient advocate here:
http://www.cfids.org/xmrv/070110study.asp

I can't help but think that as a patient community, we are karmically jinxed....I'm trying not to feel too depressed about the whole situation by distracting myself with life (reading I need to do, packing, small garden chores).

I may not post too much in the next few weeks.