Change can be stressful.....

I'll make this brief.

I have quite a lot on my plate right now:
1. I'm in charge of the online discussion for my web-based PhD course this week.
2. I have a two hour class to teach on Monday
3. The house I live in has been sold and I (we) need to be out by Wed. - the end of the month
4. We haven't found a suitable place to rent yet
5. This could mean temporarily living 40min from town in a place w/o running water or Internet (fun if I were my old self, not fun with a sick body).

I've moved a lot with this illness. Initially, after I lost my job, I surfed from place to place. The last three years I've rented a one bedroom house. Things have been fairly secure and low stress (except the house is VERY poorly insulated and I'm freezing all the time 9 months a year).

I'm looking forward to BEING moved, but not to moving. My good friend Sue has been packing my stuff for me which is wonderful. I pack a box and then get really exhausted and need to lay down. Let me tell you, there's more than a box to pack!! This is my first move where I've actually had help packing up my stuff (I have had help with the actual moving day and unpacking before).

I'm a fairly B-type personality, but the unknown of where I'm going to be in a few days has hit. I'm stressed and exhausted and feeling overwhelmed. And I'm frustrated at my body. I hate being sick and weak. I'm so frustrated of being vulnerable to any kind of physical stress. I have such limited energy. I wish I could just pack a bunch of stuff and deal with temporary housing. I'm trying to NOT stress and take deep breaths but my school schedule seems about my limit. I feel like I don't have a move in me, let alone two moves if we need to live somewhere temporarily. Even the last week of looking at places and talking to potential landlord/ladies on the phone has worn me down. I guess there's pros and cons to everything, though. At least I don't have to do it all alone.

The M.E. is just there. It's been worse and it's been better. I had four excellent days last week. Friday - Monday I felt pretty decent and did all kinds of things. My specialist sometimes compares energy to money....if you spend it all on your good days, there's nothing left. People with M.E. have no back account to draw from.

Advocacy - My Story

A couple years ago I wrote out "my M.E. story". I was frustrated and felt I wanted to advocate for M.E. sufferers in some way. I gave a copy to the provincial support group for their newsletter, however, they never ended up publishing it. I've made a few edits to it over time and I figured I'd post it here on the blog if anyone's interested. However, it is pretty long, so feel no pressure to read it.

MY M.E. STORY

THE BEGINNING

My story about Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) begins in 2002, back when I was in my early thirties. Following University I worked for eight years as a wilderness educator. For six years I worked for an organization called Outward Bound (in England for a year then for 5 ½ years in Northern Minnesota). Outward Bound is a not-for-profit that focuses on team building, leadership and personal development often through the use of wilderness expeditions. I really enjoyed my work. I had many hobbies (running, skiing, dog sledding, rock-climbing, music etc.) as well as a close group of friends/social life.

Then one weekend in June, 2002 just after I turned 32 everything changed. I came down with what felt like the strangest flu. I remember my chest hurting and feeling sweaty, shaky, and dizzy. I was flooded with these waves of exhaustion and weakness. I took myself to a clinic (I’d only seen a doctor once in the previous 5 years) where they ran some tests including checking for thyroid and Lyme disease. I was told I had a fever. That same afternoon I got a call informing me that I had mononucleosis. Ironically, I was also told that it would last two to six weeks. 

The next year was one of the worst in my life. As the weeks and then months went past I didn’t seem to be recovering from the Mono, in fact, I appeared to be getting worse. I considered myself to be a tough person. Heck, I’d led an eight day winter dog sledding course with bronchitis once. I could carry a 70lb canoe a kilometer without a break. I’d run a half marathon that year. At that point in my life I believed in the philosophy that anything was possible and that most obstacles could be overcome with positive thinking, strength and toughness. How wrong I was.

I kept trying to work. I cut down my hours. Outward Bound worked with me to modify my schedule. For a year I would work a few days and then completely crash for a few days. I didn’t understand how I could go from fairly functional to completely disabled, sometimes all within the period of a few hours. I would get up in the mornings and go to work, two hours later I’d be back in bed. I would take a 2 hour lunch and skip eating just to lengthen the time I could rest. When it was time to return to work at one or two o’clock I’d find myself crying just with the effort to get out of bed and walk the short distance to the office.

THE DIAGNOSIS

Every few months I would return to the local clinic in an attempt to get some help. At first they told me it was a lingering Mono infection. They would run more tests, be baffled by my continued fevers and weakness, however, have little advice to give me as the tests came back normal. Finally, after six months and little improvement I consulted with an Internal medicine doctor who decided to give me a diagnosis of Chronic Fatigue Syndrome (CFS).

I remember sitting on the examining table feeling terrible. I was overcome with flu-ache, head pressure, sore throat, dizziness, painful lymph nodes in my armpits, digestive problems, and worst of all, extreme fatigue and weakness. He told me he thought most likely I had CFS and handed me his medical book that had a description of CFS in it. He said he’d always considered it to be a non-entity, but he believed I was sick and couldn’t come up with any other explanation. I looked at the name ‘Chronic Fatigue Syndrome’. “I don’t believe it’s an illness either.” I remember telling him. What I had was a lot more than being chronically fatigued. I mean everyone gets fatigued. This weakness I had was worse than the fatigue I’d had on the worst day of the flu. And I felt more than tired. I felt sick – really sick. To me, there was something very serious going on in my body and it felt a lot more severe than any condition that could be called Chronic Fatigue Syndrome. However, as I read the description it did seem to fit. An illness that often strikes after having a serious virus (like Mono); all my symptoms were listed. But there was no known cause or treatment and according to the book it could last for years.

THE "CHRONIC" IN CHRONIC FATIGUE SYNDROME

I went on to see other doctors. An infectious disease specialist confirmed the diagnosis and when I didn’t improve, in fact got worse, I lost my job. Unfortunately my housing came with my job so I also lost my home. Over the next two years I slowly spent my savings, living on people’s couches and in their spare bedrooms. I tried naturopathic, chiropractic, energy medicine, homeopathic, counseling, exercising, changing my diet – anything that might help me dig my way out of this hell. While my friends believed that I was sick, there was skepticism from doctors and people I didn’t know. It was suggested explicitly or at other times subtly that I was ‘just tired’, needed to exercise, or that somehow my problems were motivational or caused by depression.

Eventually I ended up back in Ontario where I’d grown up but hadn’t lived for almost 10 years. Besides a few family members, I barely knew anybody. My support network was limited. During that period my living conditions were always temporary as I surfed from friend to family member. The longest I lived anywhere was 6 months. More often I’d stay somewhere 2 or 3 months only to move on to another place - someone else who might put me up for a little while. Once I stayed in someone’s home office, other times in a spare bedroom, even living in an unheated tent trailer for a few months one spring. Unfortunately, I was running out of options. I kept thinking I would get better soon, or improve enough to get a job. I saw this illness as a temporary thing even 2 1/2 years into it. Some days I would feel less sick and take it as a sign I was improving, getting better. Other days I would get up, get dressed, make my bed and have to rest for ½ hour just from the effort. Some days I didn’t have the strength to stand in the shower, walk a block, or fold laundry. Months passed in what seemed like a blur. I spent most of my time in bed. It was frustrating and baffling. I was no longer able to understand or make sense of my own body.

FINDING AND ACCEPTING HELP

However, I was still unwilling to accept that the M.E./CFS wasn’t going away. Thankfully I found an M.E./CFS specialist who strongly encouraged me to fill out an application for disability. While I couldn’t face how sick I was, I guess she was able to recognize that I might need to accept some financial help for a while. It ended up being very good guidance. It took almost a year and a half until I navigated the process and was finally granted ODSP. In some ways it was a life saver. Still, every time I receive a check, it’s a little bit of a knife in the gut. I don’t want to be living off the government, taking charity. On the other hand, without the help I don’t like to think about where I might have ended up. Being relatively young when I got sick, I’d never imagined any situation where I couldn’t support myself. Disability was for other people – maybe older people or folks in desperate situations – but not for me.

On receiving ODSP I was able to rent a cheap bachelor apartment and start to build a little stability back into my life. I don’t know where I’d be today without the ODSP or the support of that one doctor. Even though she hasn’t been able to ‘fix’ the M.E./CFS, my quality of life is so much better than it was. She has treated me with respect, dignity and compassion that few other doctors seem to be willing to afford patients with M.E./CFS. Either they are skeptical and dismissive or they are uneducated about what the illness entails or how to help people with it. When you’re sick and disabled with the never ending flu and unimaginable fatigue and weakness, a skeptical doctor and tenuous support network can lead to depression and despair. The last thing a vulnerable person needs.

BUILDING A POST-ILLNESS LIFE

Today, more than seven years into my journey with M.E./CFS, unfortunately I’m still sick. But as apposed to the first few years with M.E./CFS my life now has some stability. I have a roof over my head and enough to eat. And over the last few years I’ve even improved a little. I’ve learned to pace myself and rest, and more importantly not berate and blame myself for being sick (even though others might). I’ve also taken up graduate studies part-time where I’ve been given the flexibility to proceed at my own pace. It has given me some sense of accomplishment and self-worth despite my daily burden of illness and inability to maintain any amount of consistent energy. 

ADVOCACY (or Not)

I still try to avoid telling other people or doctors that I have M.E. There are still a lot of misconceptions and skepticism about the illness. However, when people know someone personally who’s afflicted, they seem to be more believing and supportive. I think a lot about what can be done to make the situation better for people with M.E./CFS and two main things come to mind. 

First, I wish the medical community as well as the general public were better informed about the illness; both what it entails and how it affects people. There’s just no reason that anyone would want to pretend or “fake” an illness as awful and disabling as this one. Why would anyone give up career, social life, hobbies and sometimes even their home in order to lie around sick all day? I want people to stop minimalizing M.E./CFS and thinking it’s just about being tired. Because it’s about being disabled by a fatigue and weakness regular people never experience and it’s also about being sick. It affects all kinds of systems in the body; neurological, immune and metabolic, to name a few.

Second, there is a real need for more and better research. When I consider the number of people sick with this illness (4.2 per 1000 people), it blows my mind how little research is being done to investigate the causes and find treatments. Maybe it’s because most people don’t die from M.E./CFS. Still lots of lives are ruined and the cost to society is still significant (in the U.S. they estimate 9.1 billion dollars a year). Canada needs to invest some time and money into this problem.

On a personal level, I’m hesitant to be an advocate for myself and others with the illness. I don’t want people to know that I have M.E./CFS because of the stigma that is still attached to the illness. When I do disclose to someone about M.E./CFS I don’t want to always have to explain and/or defend myself. I wish it were like other chronic diseases like M.S., heart disease, or diabetes where there’s at least acceptance and understanding in the public that they are real and disabling conditions. I want things to improve, both for me and the M.E. community as a whole. I hope at least one person reading this will be inspired to be more supportive and help to advocate for people who suffer from M.E./CFS.

This and that..........

RECENT ACTIVITY AND HEALTH STATUS.......

Recently, life has been interesting. I'm taking an online course which entails about 10hrs of work a week (once I start working on the assignments, probably more). Then I'm teaching two hours a week. With prep and assignments this will probably work out to about 10 hours a week as well. That's 20 hours of work a week! The good part is only about 4-5 hours of this time involves me needing to be out of the house....the rest I can do at home in bed. However, since I'm still not functioning at my "normal" I decided that if things don't improve by Friday, I'm going to make some changes....not sure what they will be, but I might have to find a way to further limit my activity to avoid a real major relapse (see previous post).

ON ORTHOSTATIC INTOLERANCE.......

I've had a tough week health-wise. I've been pretty weak and I'm running a low grade fever. Also, I've had lots of dizzy spells with a worsening of my Orthostatic Intolerance (OI). My bouts of OI are directly related to my CFS/M.E. status. I say this because a doctor once told me it was due to deconditioning. If that were true, the OI would get worse when I've had a long bad patch and have had to spend lots of time in bed. However, this is not the case. Instead, if I've had a couple good weeks and I've been fairly active, and I then have a crash, it gets instantly worse the first day of the crash. After I rest (spend lots of time in bed - e.g. decondition) the OI starts to improve again.

For those who don't know what orthostatic intolerance is, I'll give a very brief description. When I go from laying down to standing, from sitting to standing, or (worst) from squatting to standing, I get a major head rush/black out and occasionally completely pass out. It's do to the fact that my blood pressure (which in a person without OI typically regulates itself when that person changes position) instead drops. I have a fairly low BP to begin with (at least since my illness onset). The last two times I checked, my systolic was below 100.

ON ART......

I've been too busy to do art lately, which has been an outlet for me since becoming ill. It's not the end of the world, but yesterday I walked around the block with Teagan and took my camera. My goal was to find and photograph (artistically if possible) any beauty I saw. I've posted a few of my shots here.

Check out this link.........

Today I read a guest blog entry on Cort's "Bringing the Heat" blog site (which is about M.E./CFS). The entry was written by a woman named Laurel who has M.E.

I thought she made some really good points in sharing her story. (Points that I should probably be taking to heart about what can happen when a person with M.E. pushes too hard). She writes about how people (even fellow M.E./CFSers) would rather hear about the stories of those who've recovered, not those who are severely ill or have gotten worse.

I have experienced this on a small scale when people ask how I am, when they only really want to hear that I'm doing "well" or "improving".....they don't want to hear if I've had a crash or if I'm having a really bad day.... Of course some people ARE sincere when they ask how I am, but there are others who would really rather not know unless the answer is positive and cheery.......

Here's the link:

http://aboutmecfs.org/blog/?p=769

30 Things about my invisible illness you may not know....

Evidently this is invisible chronic illness awareness week....who knew?
There is a list on the website (which I've posted a link to below) where you can share 30 things about your Invisible Illness. I've decided to do this here....

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Myalgic Encephalomyelitis (M.E.) also known as Chronic Fatigue Syndrome (which is not the same as chronic fatigue).

2. I was diagnosed with it in the year: 2002

3. I had symptoms since: The weekend of June 15th, 2002 - one day I was well, the next day I wasn't.

4. The biggest adjustment I’ve had to make is: loosing my job, home, and pretty much all of my hobbies.

5. Most people assume: M.E./CFS is mostly about being tired and is a result of stress, depression etc. (rather than a significant biological illness with symptoms such as dizziness, sore throat, fevers, painful and swollen lymph nodes, sleep issues etc.). While I'm sure you get very tired sometimes, the exhaustion, weakness and fatigue I feel are nothing like what a "well" person feels.

6. The hardest part about mornings are: Waking up and realizing I'm still sick.

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn't live without is: hmmm...... perhaps my washer and dryer

9. The hardest part about nights are: Getting to sleep....

10. Each day I take: 2 pills & vitamins... no income for more...(No comments, please)

11. Regarding alternative treatments: In the first few years of illness I spent thousands of dollars (perhaps $10 000 if you include all the supplements and pills) trying treatments that people thought would "cure" me including - homeopathic, naturalpathic, chiropractic, acupuncture, energy medicine etc.

12. If I had to choose between an invisible illness or visible I would choose: Some days I like being able to "hide" my disabilities, other days I wish I looked as sick as I feel so people wouldn't tell me how "great" I look when I'm feeling like death.

13. Regarding working and career: I miss working - I've been unable to work for 6 years and on disability for four years. More recently I have been able to be a student (in part, because I can do the work at home from bed if need be).

14. People would be surprised to know: Before I got sick I led wilderness expeditions year round - dog sledding, canoeing, hiking, sea-kayaking etc., and I liked to run (I ran a 1/2 marathon before becoming ill).

15. The hardest thing to accept about my new reality has been: Relying on others (including the government) for support. Also not being able to have or adopt children.

16. Something I never thought I could do with my illness that I did was: Learn a certain amount of patience.

17. The commercials about my illness: Are nonexistent

18. Something I really miss doing since I was diagnosed is: Working, running, going out with friends and not feeling like crap the whole time.

19. It was really hard to have to give up: My life. Especially being physically active.

20. A new hobby I have taken up since my diagnosis is: Art - painting and printmaking.

21. If I could have one day of feeling normal again I would: Go for a run, a canoe, a hike in the woods and end the day with friends eating a meal out w/o feeling awful.

22. My illness has taught me: patience, more compassion for others, not to judge people's abilities/motivations just by looking at them.

23. Want to know a secret? Things people say that get under my skin are: "You're sick? But you look great!"; "I get tired too!"; "Come on, you can do ____, you'll be fine."

24. But I love it when people: Make the effort to be friends with me despite the illness. For example, offering to come over to visit rather than go out when I'm crashed, finding things we can do that aren't "active", or inviting me out again and again even though 5 out of 6 times I may say no.

25. My favorite motto, scripture, quote that gets me through tough times is: I'll have to think on this one.

26. When someone is diagnosed I’d like to tell them: "You are truly physically ill despite what others may say - find a M.E./CFS specialist....trust what your body tells you....whatever you do DON'T push yourself as this will cause relapses and a worsening of the condition."

27. Something that has surprised me about living with an illness is: I'm not alone - I've made friends with others that have M.E./CFS and who understand the daily physical struggle.

28. The nicest thing someone did for me when I wasn’t feeling well was: Supported me, went out and bought groceries for me when I was too ill, visited me at home and watched movies with me, and advocated for me - told others about this real, devastating illness.

29. I’m involved with Invisible Illness Week because: I want people to know how severely devastating M.E./CFS is. I want people to know that no one would "choose" this life.... I do NOT have motivational issues - I'm sick.

30. The fact that you read this list makes me feel: Happy, that you took the time to care.

Find out more about National Invisible Chronic Illness Awareness Week at http://www.invisibleillnessweek.com/

Questioning my decisions....

Improving finally........

I've been doing a little better the last two days. The weather has been beautiful too, so I've left the house for about two hours both yesterday and the day before. Since the effects of activity usually take about 36 hours to hit me, I'm wondering if I'll be "punished"?

Why do I always do this? As soon as I feel somewhat better, why do I go out and potentially "blow it?" This crash lasted about 10 days and as soon as I got a good day, I went out and was active. (By active I mean leaving the house, not laying in bed or on the couch, I don't mean active as defined by a "well" person). It's so hard to hold back, especially when I've been so isolated, bored, and stir-crazy.

ON THE PhD.......

On another note, I'm considering dropping out of the PhD. It's not so much the work load (as I haven't been working at all the last two weeks). It's more of a motivational thing. I just can't seem to find a topic I'm interested in enough to feel inspired. My area is in humane and environmental education. I'm especially interested in human relationships with other animals and with the natural world. But I just can't hone in on a topic enough to get excited and to fill out these grant applications.

Maybe this crash helped lead to my lack of motivation. I'm sure my busy summer, most specifically the intensive July course, did contribute to the crash....

I've also been feeling guilty about being on disability while being a student. Not that I'm well enough to earn a living - I'm not there yet. However, last year when I worked small contracts I was able to contribute to my living costs and decrease my disability payments (in Ontario they minus 1/2 of what you earn from your monthly check).

But one of the pros I saw in getting a PhD was that with a PhD, even if I wasn't well, I might be able to work enough to get off the disability payments all together. I thought I might be able to find work that I could do mostly at home, but that still paid enough to make me self sufficient. That I would really LOVE.... To earn my own living!

My boring life...but it could be worse...it's all relative

Well I'm not exactly out of the crash yet. So I'm laying in bed writing this blog. I guess there are things I could be doing - filling out research funding applications, doing some reading for my upcoming online course....instead I'm doing nothing. I guess along with feeling sick, I have the blahs. My friends Sue and Joe just left this morning for S. Ontario. They were here for two days. It will be mid Sept. when they return to find a place for us all to live. They looked at a few places while they were here, but we didn't decide on anything. I hope we can find a place that will "work" for all of us.

I'm so divided right now. I want to get up, go out and DO something. But I'm not feeling well, so if I do anything slightly "active", I'll end up feeling even worse afterwards. Day 9 of the crash and I'm getting very bored and antsy.

However, Sue, Joe, Teagan (my dog) and I went to Mission Marsh yesterday for a short walk. Teagan fetched sticks. The water is so shallow out there that she did this weird loping/swimming thing that was such good entertainment. I thought I should take advantage of having Sue and Joe here to drive. It was an opportunity to go somewhere I don't typically go on my own. I CAN drive places, it's just that driving sucks the energy from me very quickly (especially when I'm crashed), leaving little energy left to enjoy places once I get there.

And it's not just an energy thing....the less energy I have and the more "crashed" I am, the more fluey or "virusy" and sick I feel.

It was such a beautiful day yesterday and the wind was blowing off the lake. I waded a bit and because it's shallow at Mission Marsh, the water was actually pretty warm for Lake Superior.
We didn't walk far (maybe a block and 1/2 worth on flat), but by the time we made it home, I was feeling pretty ill. Then I had to lay in bed feeling like "death" for a while.

Everything with this illness is relative, though. Some people with M.E./CFS are sick enough that they can't even get out of bed. For the severely disabled it takes too much energy to talk, eat solid food, read, walk or even stand.....

At my very worst I had trouble getting from the bed to the couch; I couldn't shower (because of not having the strength to stand in the shower). Still, at my worst (which was several years ago now) I wasn't as sick as some people are for years at a time. So I can count my blessings that I can walk a block, do an errand a day, read, watch TV. Even if I am mostly housebound right now (I can probably do one short errand of a/b half an hour right now without making myself sicker), I KNOW it could be a lot worse.

For me, a crash means I feel a lot sicker than my "normal" and my functioning significantly decreases. For example, when my parents were here I did some 1/2 day trips (nothing strenuous) and could come home and rest and be OK after a day or so. Right now I really can't leave the house for more than 1/2 an hour or less a day without making myself significantly worse. For a person with severe M.E./CFS, my level of functioning while "crashed" would be a dream. On the other hand, a "well" person might spend a day in my body and go insane from feeling this sick and being so restricted activity-wise.

It's all relative.