Lovely relaxing Christmas

This photo is one I took early morning on the solstice....we have a lot more snow now.

Wow, what a relaxing Christmas! We went to a candlelight Christmas Eve service. Beginning Christmas eve day it has snowed ALOT here over the last 2 to 3 days. It's still snowing. Even if we wanted to go to town or something today I don't think we could right now - we're pretty snowed in.

Usually, when I'm staying with family over Christmas in southern Ontario there's a lot of going here and there, seeing different people....This is always fun, but also exhausting and challenging when I'm feeling ill (which is much of the time for the last 7 years). I missed seeing family this year, but on the plus side, it was a very relaxing day. It was just Sue, Joe, Teagan (the dog) and I. I crashed mid-day and was feeling quite sick for the rest of the day (as a result of the trip to town Christmas eve plus a walk on the lake) but I didn't have to push myself to do anything. I spent part of the day in bed, and part of the day on the couch. We ate lots of yummy food, unwrapped some presents, visited, and watched the storm outside (snow, ice pellets, and a bit of freezing rain).

Today I'm feeling only a little sick (sore throat with blisters, painful lymph nodes, and a bit of the chest flu ache) but my energy isn't too bad - 5 or 6 out of 10 versus 3 or 4 yesterday. We're cranking up the sauna and otherwise I'll probably just lay around and watch the snow fall.

Quick Hello and Merry Christmas

To all of my friends out there who read this blog and celebrate Christmas - Merry Christmas!

I'm just pulling (hopefully) out of a 10 day crash.
Today I'm feeling a bit better - stronger, less fluey.

I've been trying to rest a lot.

I have a tentative OK on the house - crazy, I might be a home owner...just waiting on one more letter...the closing day is Jan. 7th.

I've been eating wheat for the last 7 weeks on an off. I tried to go back onto the wheat in order to do the test for celiac disease (the enzyme blood test). I have had many terrible episodes (from both ends if you get my drift) since being back on the wheat. Yesterday I finally did the blood test because I just couldn't take the stomach and intestinal distress anymore, especially on top of the crash. I was supposed to eat gluten for at least 2 weeks and as many as 12 weeks.

Whether or not the test turns out positive for celiac disease, I don't care. I've been told I have a wheat allergy so I'm just going to stay off it. Staying off wheat is a lot easier than attempting a gluten free diet and it's worked pretty well for me the last four or five years. If on the off chance the test is positive, I will have to cut out gluten all together.

I haven't been posting much as we've been trying to keep the phone lines open. I hope everyone is relatively well and I'll post an update again soon.

Crash and SAD?

Well I'm in a little crash. Last Wed. and Thurs I went to town (about a 45min trip one way). Sue and Joe did the shuttling (driving) but the two half days in town caused a crash. They were stressful days physically and emotionally. I might be buying a house. Houses in this city are really inexpensive so I figured I might have cheaper "rent" if I bought a house. Since my father offered to pay the down-payment, and my friends offered to help with making the house livable, I thought it was something to consider. To make a long story short, it takes a lot of energy to look at houses, make an offer, get the financing approved (still working on that one) etc. etc. and obviously it was a bit much for my body.

I got in on Thurs night and got a chill. My body was so exhausted, even with layers of clothing and layers of covers it took me at least an hour to stop shaking. My body just wouldn't warm up - I just think my metabolism was past functioning.

Friday I got up and was somewhat crashed, but it wasn't until yesterday that it really hit. Today is Sunday and I'm still feeling quite sick and weak with very painful underarm lymph nodes, sore throat and worst of all - the fluey chest ache that I get where it just hurts to breathe.

Usually I could shake a crash like this off. It's not a really bad crash (like my fellow CFSer Alyson is going through right now), but I think I have a little SAD (seasonal affective disorder) on top of the crash. For me, this is a common occurrence in December. I even struggled with a little SAD prior to getting M.E./cfs. Thankfully, by January I always seem to be able to kick it.

I just hope this crash is short. There are things I want to do this week on Wed., Thurs., and Friday!! Thursday is the local M.E./cfs support group meeting which I haven't made for months either due to being away or being too sick to go. The group hasn't been too successful partly because it's small and several of us often miss due to sickness.

Well that's about it for right now. The lake is now solid enough to walk on which has been fun. I'll post a photo I took on Friday just prior to sunset.

quick update and mourning my friend Ted.....

I've been hesitant to post lately, partly because health-wise, nothing new is going on.

I've had only one terrible afternoon lately (last Friday) where I thought, "I wish someone could put me to sleep to end this misery". If I weren't able to see the big picture, sometimes when I'm in the moment of suffering, it's possible that I might do something drastic. Thankfully, after more than 7 years of being ill, I understand that these moments come and go for me - it's just a matter of waiting them out for the better times.

So I had that one bad afternoon where it just hurt to breathe and my throat was painful and my body achy (like with the flu).....but I did attend a conference that morning - that was probably part of it.

My functioning has been pretty good lately (I can do quite a bit). Still, I have to remind myself to be careful not to overdo it. I'm happy about how well I'm doing overall! I keep reminding myself that I should just enjoy this time - make the most of it!!! Fall has always been my strongest, healthiest season with this illness.....perhaps the good spell will stick around this winter - who knows?

On another very sad note: My friend Ted died a week ago Friday from prostate cancer. We met when we both worked at Outward Bound in the winter program. One winter my friend Suellen and I shared a cabin and some evenings Ted would come by. We'd move piles of clothing and outdoor gear (our cabin was messy) and find ourselves spots to sit. We would visit and sometimes indulge in a little red wine.

After Ted and I both left Outward Bound we stayed in touch. A couple times he drove up from his cabin to visit me when I was all alone and knew almost no one here in Thunder Bay. He always let me stay in his cabin if I wanted to go south but couldn't do the long drive (long is relative).

His prostate cancer returned a couple years ago and he fought it valiantly undergoing many rounds of chemo and some radiation too. We shared some of our experiences of illness (even though they were not the same) and just general friendship. He was a funny, witty, thoughtful, caring man. I feel grateful to have known him. Even near the end when he emailed he always asked how I was which is crazy when he had just been through something like spinal surgery. It's hard for me to fathom what he endured at the end.

He was a good friend
I will miss Ted.

I'm putting a photo of Ted, Suzanne (his wife), me and Suellen here. It's not a great photo of any of us but I wanted to post something.

Returned Home

I'm back home. I'm so happy that I didn't have a major crash the whole trip...I've been back a couple days and also haven't crashed from the travel. I'm tired and I had a little fever last night, but overall my body's managing fabulously. I'd like to take credit for it - but the reality is, I just never know if I'm going to be busy then crash, or be busy and function fine.

Colorado was beautiful. I enjoyed seeing my good friend Jodi - hanging out - as well as meeting some of her friends and getting to know her husband Bill.

Now I'm back to work....the course I'm taking ends this week and I still have some marking to do from the course I taught. Once my final marks are handed in next week, I will truly be done for the semester.

I started the PhD program last June figuring I would "attempt" it without a lot of high hopes or expectations. I've actually been quite surprised at how well I've managed so far. I have received some accommodations (an extension this fall and a flexible schedule during the intensive summer course) but I've already made it through 2 semesters!!!!....To be completely honest, I'm surprised.

Part of me wants to push even harder to see where my limits lie. Perhaps this is unwise, though, as a major crash or relapse is something I DON'T want to trigger.

Short Post....doing well

I've been visiting my friend Jodi and her husband Bill. I managed to write my final paper for my fall semester PhD course this week on top of traveling here and visiting. Jodi works during the day so I've used that time to write and rest.

Today is U.S Thanksgiving and I'm at an event at Jodi's mom - 14 people total - (but I'm upstairs resting for a bit, laying on the couch and perusing some blogs and writing this entry). I've been amazed at my health the last week or so. I'm holding up really well. Only minor flu and fatigue symptoms, which I can handle. Right now I'm fighting sore throat and sinus congestion....perhaps a cold coming on, otherwise a worsening of the M.E./cfs.

I'll write again when I'm home and resting....

To all my friends out there (online or otherwise) I hope things are going OK.

The long road to recovery?

When I was first diagnosed with M.E./CFS I read some information that suggested people can be sick anywhere from six months to life (sounds like a prison sentence doesn't it?) Being an overachiever type I assumed, of course, that I would be one of the people to make a speedy recovery. I was in good physical condition, young, and I believed myself to be tough.

Seven years later I view things a bit differently, to say the least. One lesson I've learned is that some things in life we can't control. I can do everything "right" and I may still remain sick. So what are my chances for recovery? I don't know....there's still so much unknown about this illness. If it really pans out to be a retro virus, while it might be treatable, my understanding is that I'll have the retrovirus for life.

But full recovery aside, I have, and may continue to improve. I have more stamina and strength now than I did the first few years. This may be because I've truly improved, or it may be because I no longer try to push myself to live a "normal" or active life. Basically, I live in a box. For the most part, I know the limits of my box. But if I try to live outside the box, I crash....and then the box shrinks (meaning I spend a lot of time in bed). I think that my box has grown over time. This is something.

But the improvement has been very slight and over such an extended period (years not months) that sometimes it's hard for me to measure....to get real perspective on.

Well I'm done teaching my class for the fall. I just have marking to do. The class I'm taking has three weeks left (including writing another 10page paper) so I won't suffer from lack of things to do.

(If you have M.E./CFS and read this blog, vote on the pole to the right about your work/school status and/or ability.)

Tired of being tired.....

The understatement of the century.

I'm down. I'm tired of being tired. I'm tired of doing everything while feeling sick. I can't believe it's been over 7 years of this day after day! No, I'm not at my worst. Yes, I have improved overall. Yes, I am functioning enough to actually work some.

It's not that I'm not grateful for this....I guess I'm just feeling bummed, despondent. I'm feeling wiped. I feel as if I have the flu, the never ending flu. I want to crawl into bed for a week with nothing hanging over me.

I have a lot to do this month. A paper, all the marking from my course, I need to get the dog spayed before she comes into heat again.
I'm feeling a bit overwhelmed. All I want to do is lay in bed....but that's not really an option right now.

I went for a walk yesterday thinking it might help to enjoy the place where I'm living....I felt really exhausted the whole walk from step one to the last step. Still, it was nice to appreciate the beauty and watch Teagan play.

I'm going to post a few more photos (since I'm in town today and have high-speed).

Specialist Appointment

I visited my specialist Dr. Bested in Toronto.
For the first time I did the trip as an overnight. I flew down, took public transport to the appointment, spent the night in a hotel, then flew back the next morning.

Unfortunately the plane couldn't land in Thunder Bay due to low clouds so we went on to Winnipeg where I spent about 3 hours waiting. Finally we flew back to T-bay and managed to land OK.
It was a VERY exhausting trip. I tried resting in every sitting position imaginable.

My appointment wasn't too interesting.
The blood work that was supposed to be waiting never made it.
Obviously the M.E. isn't gone, however, I'm not having a major relapse or anything and over the last year I've managed quite a bit (teaching, class etc.).
We agreed I'd continue to check-in every year.

I asked about the XMRV virus to see what she thought. She does think it will turn out to be significant at least for some patients. She doesn't want to treat anyone until she can test her patients (which makes perfect sense).

I really want to be tested and try some anti-retrovirals.
My excitement at the announcement of the virus discovery at the beginning of Oct. has waned. Now I'm just guardedly hopeful that the study will be replicated soon. In the meantime I'll just manage to do as much as I can without any major crashes.

Day Off!!!!

I've been thinking a lot lately about whether I've improved over time. I think the answer is yes. I just remember times in the past when I felt SO SO sick and was so incapacitated. It's not that I never feel really sick anymore, I just think my crashes and relapses occur less frequently and perhaps are slightly less intense.Something that's kind of funny, is that when I'm doing well, I think that I've improved over time. However, if I'm having a bad day or even a bad hour, I think that nothing has changed, I'm as sick as I've been for seven years.But when I look at how much work I've been doing the last few weeks (perhaps over 20hrs a week), I think I must have improved. Don't get me wrong, I really can't exercise much (very short walks where I don't increase my heart rate) and if I'm out of the house for more than 2 hours I feel terrible, but I DO think this is improvement.

For the first time in a long time, I have a day off. I handed in my paper, I taught yesterday (while feeling crashed!) and now I have a day where there's nothing hanging over me. I'm just going to enjoy being at the lake....

You notice energy expenditure a lot more when you have M.E./cfs

I haven't posted much lately. It's a combination of being busy and the dial-up. Everything takes longer with dial-up. As well, I spend a lot less time online as we need to leave the phone line open once in a while (hee hee).

I had a big paper for the class I'm taking due on Monday and for the first time in my whole scholastic career, I asked for an extension. I was sick quite a number of days last week and prepping for and teaching my class along with the weekly time commitment the class I'm taking involves has left me with little time and energy to put towards a paper.

In the summer when I attempted the intense July course I figured it was a matter of getting through it, not having a major relapse, and then my fall schedule would lighten up.

However, work-wise, my fall is no less intense than my summer. The good thing is that I only have to go to the University 2 days a week for a few hours. And even though Sue has been driving me in and picking me up I find the travel exhausting (It's a 1/2 drive from the cabin). And it adds to my "out of the house" time. I just notice that if I can do things at home and in bed or on the couch I can last A LOT longer than when I'm not at home. I don't know why being out of the house is so much more draining. I'm not really an introvert and I have no social anxiety issues or anything like that. I just think it must be that things just take more energy when I'm out - e.g. walking down a hallway, having a conversation, siting at a desk instead of laying on a couch to work. It's these little things that take energy, that before I was sick, I never noticed.

Last week while working on the paper, I once again contemplated my options. There's dropping out of the PhD, taking a medical leave, and dropping the course I'm taking and trying it again next year....For now, I decided to stick with it....but my decision to continue is precarious. Once again, I think if I make it through the fall, the winter will be a lot more low key as I'm taking an independent study and I won't be teaching.

The lake is beautiful everyday. We still don't have a house rental for November so we might be here another month. This doesn't bother me at all because the extra driving is made up for with the beauty of this place and how it is feeding my soul....

Stay tuned for my next blog where I'll discuss the break-in we had the other night. Hint: the thieves were black, furry and feasted on dog food (they would have also enjoyed the garbage if they'd grabbed it).

The Same but Different

In some ways, if the discovery of this retrovirus in people with M.E./CFS as announced on Oct. 8th turns out to be a cause (or even a result) of the illness, my life will change. Right now, the jury is out. The discovery is in the news. The same research facility that made the announcement has already done a subsequent as of yet unpublished study with even more striking results (95% of M.E./cfs patients tested positive for the retrovirus). Invariably, other researchers are attempting to replicate the findings. I expect it won't be long until we know for sure....I can't wait to get tested.

The reality is, however, that my illness symptoms won't change, even if the name, cause, or understanding of the illness does. What will change is how it's perceived by both me and others. For seven years I've had what feels like a never ending case of influenza - with milder symptoms than the flu except the fatigue and flu ache which are significantly more pronounced. But in all the years I've been sick, no medical professional has been able to give me more than vague speculation about what is causing the illness and no treatment to date (besides resting and pacing) has given me any relief.

Even just knowing that this awful experience has been caused or made worse by a retrovirus will be a huge improvement. I will be able to name this invisible monster.
I can understand retrovirus.
I can explain retrovirus.
They can look for a treatment for a retrovirus.
No doctor will look at me blankly when faced with my strange constellation of fatigue and immune symptoms if I'm diagnosed with a retrovirus....

bring on that test....

As to my status of late. I crashed last Thursday after a good period of feeling fairly capable and well. The crash has been dominated with my immune systems. I have the fatigue and weakness but the immune symptoms (flu ache, sore throat, painful lymph nodes, dizziness) are the most distracting symptoms the last six days.

Last night we had people over. We had a fire on the beach, played scrabble and three of us had an amazing sauna afterwards. I rallied fine for the event (after resting lots during the day), but today I've barely moved from the couch and I'm much sicker.

...rest....rest....rest....hopefully I pull out of the crash soon.

Study discovers retrovirus in many with M.E./CFS

Honestly, I'm excited about this news. Here's a link to the Scientific American article. It says that a diagnostic test for the retrovirus may be available within 6 months. I'm way too excited and hopeful about this. It's big news.

http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

After seven years of being sick there may actually be an answer that seems to fit.
Keep your fingers crossed and if you're a friend that reads my blog and this new "finding" doesn't pan out, be ready for me to get very depressed. (I usually don't let myself get my hopes up when a new "finding" appears, but this time they're up).

Making choices with an illness that fluctuates....

I find that I'm struggling with my choices lately. Since the move, I really haven't had a crash (until today). I've had some hours of feeling ill and tired, but nothing significant. And over the last eight or nine days I've pushed myself lots. First with the move (which was unavoidable), then prepping class and going out Sunday night to see a short film, then teaching Monday afternoon. Yesterday we sat around here most the day, although we did go get my canoe (which was at my dissertation advisor's house - she's lives on a lake not too far from here).

When I push myself and succeed, it makes me wonder if I'm generally too cautious. For example, how will I know if I'm getting better if I don't ever test my limits? However, crashes and relapses can be terrible. I had a two week one in the late summer/early fall that was pretty bad, for example. And I know of many people with the illness that have made almost a full recovery only to overdo it and end up bed-bound.

So how do I make good choices? How do I subvert my instinct to both get lots done and enjoy life to the fullest on my good days?

These are questions that after seven years I still cannot answer.

When I'm having a fairly good patch, I so easily forget the suffering - even if it was only yesterday.

I woke up today and quickly realized I was crashed. Yesterday my energy was still fairly decent but my throat and throat lymph nodes were sore and swollen. Since there is a nasty cold going around, all day I was wondering if I had the cold or whether it was the M.E.? Perhaps I should have taken it a little easier yesterday when I got the sore throat. Often a worsening of my sore throat is a warning sign or precursor to a crash.

Crash aside, I'm still enjoying the lake...In some ways I'd be happy to stay here long term although I know it's not practical. For example, Sue has been shuttling me to town two days a week (eventually she'll have a job and commitments). So I'm going to soak in life on the lake while I have it. The birch leaves as they go from green, to yellow, to gold; the crisp early morning frosts; the mist on the lake each morning, and the blue sky and grey clouds reflected on it's surface each the day.

Temporary Move

We didn't manage to find a house before Oct. 1st so we are temporarily renting a winterized cabin 30min north of town on a lake. For Oct., Sue's going to drive me in to the University two days a week since driving can really take it out of me.

I'm blogging using dial-up!!! (There is no high-speed out here). What a blast from the past. It means my blogs this month will be short.

As for my health - it's actually shocking....but I haven't crashed yet. I've had a bit of a sore throat and some pain in my arm lymph nodes, but after teaching a full afternoon last Monday (which included quite a bit of walking), then spending two to three days packing and moving with little rest, I expected a crash.

Perhaps it's because Sue and Joe packed up most my stuff and did all the carrying and lifting as well as driving everything to storage. However, I loaded quite a few boxes and bags the last days....I mean I was WAY more active than usual doing stuff that would typically cause a crash.

I'm so so happy I haven't crashed, but at the same time it's confusing. Sometimes I do something like grocery shop, or walk an extra block and I crash. Then I have the busiest few days since July (after 2 weeks of being pretty ill) and I DON'T crash??!!?!

This illness is just too hard to understand or make sense of sometimes.

I'm just going to enjoy the good days while they're here.

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.

Chronic illness and isolation...

Well I'm still crashed. Yesterday I was feeling a bit better. Because I was feeling a bit better, I went the the market for 1/2 hour in the morning. Then in the evening, I took Teagan to the dog park. It was obviously too much as I feel really bad again today....which sucks because the sun is shining for a change and I'm feeling antsy to get out and enjoy it...But I feel so so fluey I know it's not a good idea.....I'll have to settle for some time sitting in the back yard.

It's hard being chronically ill and living alone. But there are both pros and cons.

For example, there are times, when I'm feeling really sick, that living alone is probably a good thing. Talking to people and socializing takes energy. Living alone allows me to rest, nap and sleep when I need to. It's always quiet. Also, I find when I'm feeling really ill and there are people around I have a short temper. It's hard to deal with people when I'm feeling awful.

On the other hand, for the last 4+ years of this illness I've lived alone in a city where I don't have too many friends (It's hard to make and keep friends when you really can't do too much). So when I'm house-bound sometimes I can go a week or more without talking to a single person face-to-face. It can be quite isolating.

Tomorrow, two of my good friends are moving to Thunder Bay. We're going to rent a house together. I'm looking forward to it for several reasons. For one, it will be nice simply to have friends in town that I know well. Second, when I'm quite ill it will help to have someone around who is able to grocery shop, shovel the driveway, etc. And finally, when I'm house-bound, I'm looking forward to having company - even if it's just talking to someone face-to-face once a day.

Crashed

I'm crashed. Day three. Not sure what caused it either. My parents left Sunday....I guess I did a bit too much Monday - but not enough to cause a three day crash. Perhaps it's a cumulative effect of my busy summer....I sure hope not.

Right now:

- Sore throat
- Major dizzy spells (came very close to passing out this morning as well as in the library yesterday - whoops)
- muscle twitches
- painful lymph nodes - arms
- very deep seated chest ache (hurts to breathe)
- muscle weakness - I've started using the stool in the kitchen again
- fatigue - I brought a handful of clothes downstairs yesterday and felt like I'd run a marathon or worse

I'm laying in my downstairs bed listening to the rain. I just finished a book and a bowl of popcorn. Sometimes I can't believe this is my life - being sick, laying in bed, reading, resting......

Sick Day

I've been feeling pretty decent this week. Decent is relative, of course. But I guess I've been feeling only minorly ill for a change. My energy has also been pretty decent. Yesterday I think I did too much - a coffee date, a short meeting AND going to the dog park in the p.m....around a total of three hours out of the house.

Today I'm remembering that I can't act like a "well" person. I feel sick today. I woke up with a headache and my throat is sorer than normal. Plus I feel the old chest flu-ache which I can't seem to put into words. No, it's not a muscular or joint thing....it's a sick achy feeling in my chest. Like with an infection (but w/o any coughing or flem or anything)...

I have a good book, but even though I'm sick and feel best if I'm laying down, I get tired of laying in bed all day reading or watching TV. But if I do something more active I feel sicker. Oh well. Having been as sick as I have over the last 7 years, everything is relative. What I mean is that I KNOW it (has) and could be a lot worse. So I must be zen, patient and take care of myself until I feel a bit better again. (And perhaps not walk too far with the dog today).

I thought I'd post a few photos of Teagan that my friend Nancy took.....they're pretty cute:

H2S TEST

I ordered the H2S TEST

I just ordered a home H2S test. One researcher (Dr. Kenny DeMeirleir) recently came out with the test. It's not a diagnostic test yet....at this point it's meant for research purposes. It shows the level of hydrogen sulfide in the urine. Supposedly, 80 - 90% of those with CFS/ME come out positive for increased levels. Dr. Meirleir believes it's due to increased levels of bacteria in the intestines. This causes the food in the gut to ferment, creating the high levels of hydrogen sulfide. I hope its not just someone hoping to make money off us sickies. Still, I ordered it on a whim because it would be nice to see whether I come out positive. While I highly doubt that hydrogen sulfide is the cause of my illness, maybe it is a side effect that can be measured....I'll let you know.

Seasonal Fluctuations

My parents flew home yesterday and so I have my little house to myself again. The PhD summer course is completely finished (I handed in my paper last week). I now have a week before things get busy again. (Except if I'm sticking with the PhD program, I need to confirm a research topic and write some grant applications - it's expected that we do this).

I'm looking forward to this week to rest up, read, go for little walks, play with the dog.

Health wise, I'm feeling stronger. I think I can say I've fully recovered from the July PhD course. Which doesn't mean I'm a healthy person, it just means I'm back to my normal...

Every fall (starting in late summer) I start to feel better, stronger. It's been true almost since the beginning of the illness. It sometimes even lasts into January. Typically, Sept -Nov. are my best months every year. Late winter and early spring are usually my worst months, although I can have bad months in early and mid-summer too.

Weird, I know. I've tried to figure it out. It can't be a temperature thing because it's really cold and dark here in Nov. and Dec. It's not related to flu season because that's usually over by May and I can still have bad months in May and June. For a while I was trying to find an allergy trigger but I don't think that's it either.....

Recently, it came to me that maybe it has to do with vitamin D. For example, by late winter, I probably don't have much vit. D in my system....then over the summer as I build it up again, I start to feel better. Perhaps it remains in my system until early winter??? It's a total shot in the dark, but like a lot of people with this illness I'm always trying to figure out what triggers crashes and relapses and for me, seasonal fluctuations. This theory seem to fit better than other ones I've had.

Don't get me wrong, I don't think that lack of vit. D could be a CAUSE of this illness, but perhaps an influence on my seasonal fluctuations.

Anyways, seeing as it's late summer, I'm hoping for my usual upward trend to continue. However, I've pushed myself harder this summer than any summer since 2003 (when I tried to work full time), so I hope that doesn't affect the trend.

Dr. appointments

I've tried as much as possible to avoid going to the Dr. with this illness. If it's something related to the M.E./CFS, I know they are going to say there is nothing we can do about it...so what's the point really? If it's a viral symptom or a dizziness symptom, the only thing I can do is wait it out.

However, I had an anual physical scheduled for today with my NP (Nurse Practitioner) and my new GP wanted to see me again in September. Then at the end of October, I fly south to see my ME/CFS specialist. That's ALOT of Dr. appointments for me!! I'm looking forward to seeing my specialist, but NOT to the travel. Otherwise, I usually find appointments a let down. Even if I'm feeling really sick, it often doesn't show in my blood work and I've never been given a suggestion or drug by a regular doctor that's made any difference in this illness. (My specialist, on the other hand, has helped me both deal with the social and emotional aspects of the illness as well as helped me figure out how to pace and avoid relapses).

I had a big fat swollen lymph node on my neck last week. My NP today could still feel it, but it's gone down some. She said it was probably infection/viral related as per usual. There was also a mildly swollen one in my left armpit (which has been sore today). The only other thing was that my throat is red and sore (she noticed redness on both sides with no swollen lymph nodes). My blood pressure was low 98/70 which explains my dizziness. I have OI (Orthostatic Intolerance) but it only affects me when I'm in a crash.

The best part about seeing my NP, though, is that her sister has M.E./CFS. It makes her very sympathetic and supportive towards me. Although probably inappropriately, she sometimes gives me updates on her sister and shares similarities between us.

Anyways, I've been busy finishing a paper and my folks have been visiting. While I've been feeling quite fluey the last week, my energy has returned closer to my "normal" which means I can do some visiting and even go out once a day.

lymph nodes

I don't really know how many people with CFS/ME suffer from lymph node pain and swelling? I think it was one of the original U.S. diagnostic criteria, however, I'm not really sure if it still is. I was diagnosed in the States, then moved back to Canada where I was diagnosed using the Canadian Clinical criteria put together by an international panel of ME/CFS specialists (including my specialist). I think the Canadian diagnostic criteria are much better, and it's been shown that the Canadian criteria select a narrower, sicker population than the U.S. one. With the Canadian criteria, lymph node pain or swelling just comes under the general category of immune manifestations.

Anyways, almost from the start I've had significant pain in my axillary lymph nodes - that is, the ones in my arm pits. I had no idea there were even lymph nodes there prior to getting ill. Sometimes they've been so painful I've had to prop pillows under my arms at night in order to sleep (because when my arms are down and touching, they hurt more). I've also had lots and lots of sore throats, sometime lasting years at a time. The nodes in my throat are sometimes mildly swollen, but the ones in my armpits have mostly been painful and not swollen.

Last night I was watching TV and I reached up (to itch my neck) and found a little grape sized swollen lymph node on the side of my neck....it doesn't hurt, but I'm guessing it's related to the M.E./CFS. I'm seeing my Nurse Practitioner next week so if it's still swollen, I'll see what she thinks.

Otherwise, my energy seems to be getting back to where it was prior to the PhD course which is very encouraging!

Resting....

So I haven't yet recovered from the July PhD course, but I'm improving. I'm still crashed in the afternoons with little energy, and the chest/breathing ache. My armpit lymph nodes haven't been as sore but my throat is very sore and a bit swollen.

Still, I'm hopeful that I'll be back to my normal by September when I start teaching (2 hours a week). I'll also be taking an online course. I'm pretty sure this is doable if I'm back to my "normal". Not that I really have a normal with the cycles and ups and downs, but when I'm conscientious about resting and pacing I can usually maintain a level where I feel somewhat decent. When I'm at that level I can be out of the house 1-2 hours a day if I'm doing something low-key (e.g. sitting in a coffee shop).

Right now my parents are visiting which is nice, but does take a bit of extra energy. However, I'm resting lots....

I've tried many supplements, vitamins, diets and even a couple drugs over the seven years I've been ill and nothing has really seemed to make any difference. The exception is just plain old rest. If my throat hurts a lot, or I'm having a crash or even if I have a fever, the only way I seem to be able to feel better is by resting....and resting....and resting.

Home - crashed and mourning

OK, so I'm not trying to be all depressing but it's been a tough week. I'm still somewhat crashed from the PhD course, and from mourning Merlin's passing and then a friend drove me to Ely, MN where I used to live. That was good. It was good not to be alone all week, surrounded by Merlin memories (which are in every corner of this house) and crying myself silly. There were many folks in Ely who knew her as a pet or as a sled dog and so it was nice to share memories, but also just be distracted.

But any travel (even a 3 1/2 hour drive) can drain me. So I had some OK days health wise and some really crashed ones. Especially the last three days. I tend to have a window in the morning where I feel better, but the last three days the flu symptoms and fatigue have been setting in by 10:30am and lasting right through until evening where I again have a small reprieve.

Now I'm back home which is hard....but time helps....
I'm just hoping I can recover from this crash.

Merlin's Passing

Merlin, my constant friend, companion, and roommate for the last 11 years died on Friday. I can't imagine having gone through life (and especially this illness) without her. It's hard to think about a Merlinless future....she left a huge gaping hole.....I'll be forever grateful for the time we shared.

I thought I'd put up a few photos as a tribute to her.

social stigma

I hate the social stigma of this illness. Having been pretty house-bound for the last 5 years (I say "mostly" because I've been able to go out for short outings), I've been able to shelter myself from dealing with the social complications of having a chronic illness and having chronic fatigue syndrome (the cruelest name anyone could ever give an illness) in particular.

When I started this PhD course I tried to go to every class the first week rather than deal with the consequences of "standing out" by having to leave. Then I realized I'd have to either make some adaptations or quit the course (because I was getting sicker).

Thankfully the profs were very willing to let me attend the more important parts and leave early frequently, skipping the occasional day when needed.

So I was able to make it through (tomorrow's the last day!)

What have the costs been?

1. This whole week I've been crashed. I mean I feel SO ill and awful. Not just fatigued but also very very fluey and gross. And my sore throat and chest ache are worse, I have increased tremors and muscle twitches etc. etc. If this weren't the last week I would quit right now.

2. I've had to deal with the social awkwardness of leaving class, missing class etc. Today, for instance, when I had to leave, someone suggested it was because I was tired (most people don't know more than the fact I have "health issues"). This person does know it's CFS but obviously thinks it's about being tired.....NOT about being sick (for me the two are inextricably linked). She was also surprised when I mentioned I loose weight whenever I crash. (I've lost 7lbs over the course of this month). She thought people with CFS gain weight. I said that some do, but I also know several others who loose it. For me, it's because I feel SICK. I mean who feels like eating when they have influenza? (I use the comparison because my CFS crashes are a combination of exhaustion, malaise and sickness - similar to my past experiences having influenza - and influenza is something most people can relate to).

I just don't want to have to deal with the stigma of this illness. Almost everyone (in my experience) assumes it's less severe than it is, that it's mostly about being tired (and they think of tired in relation to the tired a healthy person feels), and that motivational/depression issues are involved....

foggy brain

I'm home "sick" today. Today speakers will be coming to the PhD class to discuss applying for research funding. Too bad I'm missing it. I think I'm still trying to recover from Monday's 5 hour class. I stuck it out on Monday knowing I might pay for it. I went to class yesterday for an hour, then left and came home.

I haven't been feeling up to doing much work, and yet I'm supposed to be helping my group prepare for a presentation tomorrow. So I better get back to that even though I'm feeling pretty ill.

The reason this entry is entitled foggy brain is that it's a very common symptom for those with M.E./cfs. I've been very lucky with that symptom. It's terrible to experience. For me, it feels like someone has seran wrapped my brain. My thinking feels "fuzzy" and slow....I don't know how to describe it better. Anyways, It was one of the first symptoms to ease-up for me. For the most part I no longer suffer from brain fog....

But I have it today, along with a sore throat and increased fatigue and flu-ache so the last thing I want to be doing is researching for our presentation tomorrow.

p.s. comments are now open to the public....not just people with google accounts. Just so long as comments remain tasteful, I figured I'd open it up.

Laryngeal Paralysis

For my 14yr old husky, laryngeal paralysis is dictating the quality of her life. It's a condition where a dog's larynx becomes misshapen. Then sometimes, the larynx can completely collapse and close the airway. For the last 4 days it's happening to her many times throughout the day.

She's had the condition for several years, but this past April was the first time her larynx completely collapsed. It was terrible. It's triggered by heat, exercise and stress. But since April, she's rallied and has been doing pretty well, with only the occasional partial closure after exercise.

But she's not doing well at all right now. During the last few days even getting up to walk around the house is triggering her larynx to collapse, blocking her airway. The weather's been wet and humid and I'm wondering if this is having an effect on her condition. But she can't really walk at all. I've been taking her across the yard and into the alley and that has been triggering attacks (but unfortunately she needs to move to poop). Eating and even getting excited about treats has been causing partial or full collapses and airway closures.

It's hard to think of the power I have over her life. I mean I could just take her to the vet and have her put down. Lots of people have suggested this is the best thing. On the other hand, after her bad spell in April, she rallied and has had a pretty happy geriatric life for four months. On the other hand, right now her life is really awful. The attacks are very stressful for her as she strains to get air....I can see the panic in her eyes...

I'm just going to wait a few more days, though. In many ways she's my best friend and I want to do what's best for her. I know if this keeps up she doesn't want to live like this, but I think it's worth waiting in case this is just a bad patch.

Crashing and the "Poop" event

Thankfully the Wed. crash was just an afternoon thing.

Friday (yesterday) I even made it through all four hours of class.
Now it's Sat. and I'm having another crash day, although it's worse than the Wed. one.

I spent the morning working on my research journal for the PhD course.
Then I thought I'd take the dogs to the dog park. I loaded them up.
We drove a couple blocks when I realized Merlin (my husky) needed to poop...so I pulled over into the parking lot of a pawn shop, but it was too late. She'd pooped in the car. So she jumped out of the car onto the sidewalk and I walked around the parking lot of the pawnshop and found a plastic bag to pick up the poop.

Which made me realize I was REALLY weak. A wave of illness crashed over me. Then to make matters worse, Merlin had a breathing attack right there on the side of the road (her larynx muscles collapsed). It lasted what seemed forever-although it was probably less than 2 min. I realized between Merlin and me, the dog park (as well as my other errands - returning a movie, getting gas) were out of the question so I came home to bed.

Poor Tegan (my one year old Golden Retriever) who has to live with us sickies. But I still think Tegan is pretty happy over all. I don't think she got ANY walks in her old home. And I'm home most of the time which she loves.

On self-pity

I really don't want to feel sorry for myself. Sometimes this is hard because I spend so much time alone and I usually feel sick. I have to endure the daily grind of being chronically ill. I've also had to give up so much of the life I loved.

At the same time, I do see that my life could be a lot worse. Many people who are sick are much more destitute than I am. I was VERY lucky to get on disability so that I don't have to live in absolute poverty.

And I've built a bit of a life despite the illness. I've found things I love. Like doing art, writing, blogging, spending time with my dogs, gardening and cooking - some of these things I would never have considered in my old busy go go life. Also I've built closer relationships with some family members and some friends. Plus, I've learned a lot about empathy. I have a lot more empathy for people who are vulnerable and suffering.

You know it's a pity that I couldn't have developed this empathy without going through some terrible things myself, but for me, that's what it took. It makes me hope that others in this world are of a little higher moral fibre than me. I hope I've learned to be less judgemental and critical when I'm faced with someone or something that I don't understand.

Anyways, my thoughts on self-pity are that for the most part, it's a waste of time.....and yet I sometimes get caught up in it and wish I wouldn't. I mean I think it's OK to say "Yes, this sucks...it sucks to be sick and it's sad what I've lost", but if I let myself dwell on that too much I'm not able to make the most of the life I DO have and CAN have.