The Good Things....

Having been so sick all winter, it's been hard to see past the never ending flu, weakness, dizziness, chest ache, low grade fevers, and fatigue.

During my first couple years of illness I underwent a lot of losses: I lost my job/career, home, community (was forced to move, thus also lost daily contact with friends). I lost my physical health which meant losing almost all my hobbies.

While I was going through these losses, I got very depressed. One way I dealt with it was to keep a journal as an outlet. Many days I started my journal with a list of things to be grateful for, or things I hadn't lost.

Having endured another long winter of illness, I have been feeling the heaviness of depression for all those things I can't do (work, hobbies, exercise, socialize etc.), and all the continued losses (career, many of my friends, having children, etc). I thought it would be both nice (and healthy) to focus on a few of the things I'm grateful for:

1. I have a wonderful, funny, entertaining and loyal friend in my life - Teagan, my dog.

2. My cousin and her husband (both good friends) live with me so I'm not completely isolated and I reap many benefits including company, help with groceries, errands, and physical tasks (drives to appointments, taking out the garbage, vacuuming etc.).

3. I didn't get sick until I had just turned 32 so I had 32 healthy, physically active years. I traveled many amazing wilderness areas, and worked with interesting and sometimes inspiring teens and youth. My co-instructors were usually adventurous and compassionate people. Some people never get to work their "dream" job and pursue their passions the way I did before I became ill.

4. I have a home - which is huge since I was virtually "homeless" for the first 3 years of this illness - surfing from couch, to spare bedroom, even living in a tent trailer for a while.

5. I have an amazing specialist. I realize this is not the case for many with M.E.

6. While I've lost friends through distance and time, I still have some good, supportive friends.

7. I'm still able to read (which is a huge pass-time for me).

8. At this point, I am still well enough to pursue graduate work part-time, although that is being re-assessed at the moment.

9. I live in a great country.

10. I live in a beautiful area, so those few times a year I'm up for it, I get to enjoy amazing views, swim in clear, clean water, observe some incredible wildlife, etc.

Feels like spring....

Just thought I'd write a little update. I think (and hope) that perhaps this second crash of the winter is abating. Fingers crossed.

It's interesting to me how sick I've been this winter. It's so hard from year to year to have a good perspective on whether I've improved overall with this illness. While the first two years I had my lowest lows health wise, I also think I had my highest highs (or weller periods). But when I'm laying in bed feeling as weak and fluy as I have most this winter, it's really hard to remember and compare.

I've heard people talk about M.E as a progressive disease, as a fluctuating disease, and as an illness that improves over time. My guess, or instinct, is that it's all three. Perhaps some people improve or get better. I know a couple of these people. My specialist seems to think that most (not all) of her patients improve over time, but that no one is ever really "home free". That is, even the recovered need to be careful not to push too hard.

It seems like I have a fluctuating form of the illness - I've never been well since day one, but I've had some periods where I can function to some degree, and periods where I'm pretty disabled. I've never had really long period of either (long being more than a few months).

This time of year, the place where I live is pretty ugly. The snow starts to melt and everything is brown. The garbage and trash under the snow reveals itself. It's wet and muddy with brown piles of slushy snow everywhere.

Since I've spent most the winter home-bound, I haven't been taking photos. My roommates did take me on two drives (separate occasions) in Feb so here's a few photos (along with one of Teagan sitting on the front porch). I live on a huge beautiful lake (largest fresh water lake in the world). I think the boats frozen in the ice and the grain elevators capture a "snapshot" of this industrial city surrounded by natural beauty.

symptom questions

Still pretty crashed, day 10. Haven't left the house in 10 days!!! This sucks. I might actually walk a 1/4 block today and to hell with the consequences just so I don't go crazy.

For all my fellow M.E. bloggers - first, thanks for your supportive kind words. It's so nice to know I'm not alone suffering this awful illness.

Second - I want to list a few symptoms and see if they sound familiar and if you've found anything that helps?

Symptoms are tough. There are so many M.E. symptoms that when I list them all I feel like a hypochondriac. It's no wonder that Dr.s may be prone to dismiss us with so many many symptoms and so few signs. I was lucky to be taken seriously in the beginning partly because I did have some signs of illness - I clearly had mono (tested positive by monospot) as well as a red raw throat, swollen lymph nodes, and ongoing fevers even a year after mono (which I still get fairly often).

As for symptoms, some come and go, some are always with me and they range from mild to severe - but most are mild (except fatigue, weakness, and the "ill" or "malaise" sensation).

The symptoms I want to ask about are:

1. I've been having severe weakness in my arms and legs as well as a buzzing or what feels like an internal tremor. This tremor seems to be coming from the muscles in my arms and legs. Yesterday, trying to use my arms led to shaking as well. Has anyone else experienced this tremor? I actually felt it on the day I got sick (it was one of my initial symptoms).
2. One of my worst symptoms that's always there and worsens during relapses -but one that I don't hear much about from fellow sufferers is an achy chest/flu ache that is very deep seated and dull. It hurts to take a breath, especially a deep breath. It is not a sharp or severe pain, just a really sicky, deep, heavy achy feeling. When I was a kid and would spend all day swimming in the waves (and breathing in water) I would get a very similar ache. I don't think it's anything like a bronchitis or pneumonia because I've had it terribly while at the Dr. and they've listened to my chest and heard nothing. Also, it is not accompanied by any coughing. I also feel like I'm getting air, just with discomfort.

That's it.

With everything going on in the world right now and all the people suffering the effects of the earthquake, tsunami, and war, it's hard to feel justified complaining. However, I find it so tough to make it through these long days of laying in bed. My existence seems so meaningless. I want to find a way to get outside myself - I feel so selfish - but don't really know how to do this when it's so hard to "do" anything with this level of energy and severity of malaise.

crashed

Last Thursday I went to the U and did two hours of work.
Friday I went in for 1 1/2 hours to listen to a talk.

This is always (for no reason I can figure) my worst time of year.
While in the fall this might have been manageable, I guess I should have known better.

Saturday I crashed
Sunday I felt worse
Monday I was sicker
Tuesday I was sicker than that
Today I'm even worse and I've been thinking "doctor?" "hospital?". But it's just M.E. and I know there's nothing they can do. I can't believe how sick and weak I am.

Trying to pursue something....with a medical disability

I tried running errands this afternoon (a quick stop at the bank two blocks away) and I bought some dog biscuits at the pet store. I returned home feeling ill - very fluy, weak and beyond fatigued - muscle tremors to boot. It was more than I could handle. No art class for me tonight, which makes me sad.

I sometimes question everything I'm trying to do. I've been deemed "permanently" disabled which means I will receive payments until I'm 65, unless I go back to work and am earning more than my payments (which wouldn't actually be that much). It's a type of social assistance disability. So being sick, why am I trying to pursue this PhD?

I've been asking myself this question lately. Since my M.E./CFS fluctuates, there are times where part-time graduate work - mostly from home - is doable. However, there are also times when I'm crashed, or the demands of the graduate work are higher, where it's just too much.

And as anyone with M.E. knows, sometimes you attempt something at the edge of your limit, and you succeed, and other times you crash hard and loose function (which to put it bluntly sucks).

I really enjoy both the social and intellectual aspects of working on this degree. Most mornings I spend 30min -2 hours reading, researching and/or writing. It gives me a sense of purpose - and it's just interesting. Because my energy/illness is so unreliable, I have trouble imagining other things I could do if I decide to drop the PhD that would give me equal fulfillment with such a flexible schedule. However, whether I drop out of the PhD or manage to get it, I'm hoping either way I'll find some at-home work I can do on a part-time flexible basis.

I've been trying to figure out what's so disabling about this condition for me and perhaps others? Well first, I think it's the PEM (post exertional malaise). Basically effort = feeling very ill and weak and the more I do, the sicker and weaker I feel.

Why was I able to do a full-time high energy job before M.E., even when I had something like a cold or the flu, but I can't push through the M.E.? Well I think the first thing is that pushing makes M.E. much worse, whereas when you have a cold or something and you push, you just continue to have the cold.

Also, the fatigue/weakness of M.E. along with the fluishness is so much more severe than anything I experienced in my past "well" life. The only similar experience was perhaps a day with influenza - while the symptoms are much milder, the weakness is similar or worse. The other disabling M.E. symptom (which comes when I push) is dizziness - a flu-like dizzy experience. It's hard to function with the M.E. dizziness.

Finally, I think the chronicness is disabling. While some of us in the beginning year or years were able to work, working while sick month after month takes it's toll (and in my case anyways) made the condition worse.

New poll on the right :)

This and that

I've been feeling a little uninspired bloggingwise - hence the posts that have been a little further a part.

On the feet of the PACE trial studies and all the media, another study came out which found that over 600 proteins in the spinal fluid of M.E./CFS patients were unique to those of healthy controls. While it might help with a biomarker (and test) for the illness, some of the news coverage was disappointing and seemed (to me) to downplay the seriousness of the illness. Oh well, I guess I have to be thankful that someone at least found something, right?

Here is another really great story written by journalist John Falk who's "coming out" of the closet so to speak as a CFS/M.E. sufferer. A very brave thing to do given the stigmatization.

http://www.huffingtonpost.com/john-falk/chronic-fatigue-syndrome-_b_829651.html

In fact, just today, I met with a classmate for coffee to discuss the online class we're taking. Through talking it came up that I have a chronic illness (partly because I missed a course I was supposed to do last summer). When she asked what I have, I actually deferred and said "If you don't mind, I'd rather not say".

Yes, I'm a coward. Sometimes I just don't want to deal with potential skepticism. And if it's not skepticism, it's often educating someone about the fact that M.E./CFS is actually is a multi system illness and not just about being tired.

On a positive note, my health in Feb. was considerably better than January.

The last two days my energy has crashed and I'm back dealing with major flu symptoms again. Strange, because I can't point to any "overdoing" it. But sometimes this illness is just like that. Bad days come. As much as I would like to, I can't control this illness.