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.

Crashing....

This month of doing more than I have in 5 or 6 years, is catching up to me....plus staying up too late last night.
But in a week and 1/2 it will be over (the intense course part anyways).

The crash is setting in.
For me "crash" means feeling the effects of doing too much. I can crash anywheres from an afternoon to a week.

My crashes almost always start with a sore throat (or a worsening sore throat) then the deep-seated chest ache - it hurts to breathe too deeply.
Then the fatigue and weakness set in. I have to lay down a lot. Every little activity drains me.
The only way to improve when I'm crashed is to rest....and rest and rest.
If you don't have M.E. it feels very much like the fatigue and ache that come with influenza.

I define relapse differently. I only call it a relapse if it's more than a week long and I loose the gains I've made overtime. It's like starting over. I've never had a severe relapse....mostly month-long ones. I have 2 or 3 relapses a year.

Anyways, I'm off to rest so this remains a short crash and nothing more.

Riding the waves or not?

I guess one of the hardest parts of managing this PhD course is not knowing whether or not to ride the waves?

For example, if I do too much I can crash, or worse yet, relapse. However, sometimes when I start to feel ill and I push through, I'm fine....nothing happens (except that it sucks to push through when I'm feeling ill).

I feel like I'm continually asking questions and making assessments. I'm sick of it. For example, at break today I wasn't feeling too badly so I thought I'd keep going. However, the last 45min of class I was feeling awful, and yet I chose to push through rather than deal with the awkwardness of getting up and walking out. But then I came home and surprisingly wasn't feeling too bad. Which makes me think, wow, maybe I really can do more and push through? But I just don't know because sometimes it works and sometimes it doesn't.

It's going to be a very tough week so this may be my only blog entry all week. We have a 10 page paper to complete by Friday. It just happens that my friend is coming through town with her family (all 7 of them) and staying Tues. and Wed. night.

Problem is, when I go to class, I come home and need to lay down and rest, sometimes for the remainder of the day. So when am I going to write a paper? Luckily, I did manage 4 pages over the weekend.

But this is when I start to think - "I just don't want to do this to myself". Then I start feeling apathetic - "I just don't care". I think it's a combination of feeling sick and overwhelmed.
Anyways, I'm fading.........................................

Dr. Appointment

For the first time this week I made it through the four hours of class. My reward was a sore throat, some minor dizziness, and a good amount of leg tremors (which are still with me).

Instead of going home to rest I then had a Dr. Appointment. As per usual I had to wait 1/2hr, and then my appointment lasted what seemed like an hour. (I don't blame her for the wait, it's the overloaded system - many people in this city don't even have a Dr.).

Mostly we discussed my relapse warning signs and ways for me to continue to manage the course for the next two weeks while avoiding a major relapse. She did a very minor physical then drew lots of blood (same old stuff I think). I like her so far (it's only my second appointment with her). Mostly she's impressed at how much I'm trying to do despite being ill. She also thinks that overall, I have a good handle on my body as well as managing the illness.

We discussed some of my circulation issues of late and she does think I have rayaud's syndrome. She also gave me a prescription for some medical deodorant for the ridiculous sweating issue I've been dealing with since the winter. I'm not sure if I'll fill it out....I don't like the idea of all that aluminum.

I'll let you know if anything interesting comes out of the blood work.
My guess: Low WBC (as per usual when I'm feeling ill) and low ferritin, although with my recent work in that area, I bet I've brought my levels up a little.

I'm going to take tomorrow as it comes. I would be highly surprised if I don't have some sort of crash from today either tomorrow or Saturday. Funny, usually my crash comes about 36 hours after having overdone it. But these tremors are a sign that I'm headed that way. My Dr.'s suggestion was to perhaps take a three day weekend.

Just thought I'd share one of my favourite poems

Wild Geese
by Mary Oliver

You do not have to be good.
You do not have to walk on your knees for a hundred miles
through the desert repenting.
You only have to let the soft animal of your body love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain are moving across the landscapes,
over the prairies and the deep trees, the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air, are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting — over and over
announcing your place in the family of things.

It might be alright for the "average" person....

Wow, I overdid it this morning.

At the beginning of the PhD course, I had offered my car up if anyone needed it. Friday morning one woman in my course discussed borrowing it for grocery shopping - no problem.

I can't imagine being stuck on campus, having to grocery shop by bus (which some of them have been doing). Plus, it's not like I use my car much.

In my head I figured I'd go out to breakfast with folks, then loan them my car while I went home and rested.

Unfortunately, it turns out that none of them really drive standard (clutch)...so I just went to market and the grocery store with them. On top of the outing, I ended up doing the driving - which for me, is equal to siphoning the energy out of my body at high-speed. So my little one hour outing turned into THREE!!! when I should have been home resting.

Of course, chicken shit me didn't have the nerve to say something about my limitations. But at the grocery store and the market I found a place to sit down for the whole time, plus I did mention to one woman I have limited energy due to "health issues".

Oh well, at least it's Saturday and not Sunday. I have the rest of today and tomorrow to rest up.

I know that every person is different and we all have our challenges, but a three hour outing for me is a HUGE challenge and reminds me that I'm just no longer an "average" person (whatever that means).

On the positive side, I did make it through week one of the PhD, missing only 2 hours total. The outing today also gave me the opportunity to get to know a few classmates better.

Emotional

In some ways I'm not really a very emotional person. I try to keep a calm and steady demeanor. I'm very intellectual about most stuff. (Not that I think being emotional or expressing emotion is necessarily a bad thing - it's just as a rule I'm generally not too emotional). This week, though, I've felt very emotional. The two longest days of class (Tues. and today - Thurs.) I came home afterwards and cried.

Its just I'm finding the PhD course very difficult. Around 11am I start to get tremors and some mild waves of the flueyness (my made up word). Then there's still 2 hours to go.

Also, just having the stamina to go for 4 hours is SO difficult having not had to keep a schedule like that for years now....pretty much since 2003.

Maybe disability does make people lazy (more fairly, maybe it's made me lazy). Not HAVING to force myself to push. I was of two minds in June. Either to try to "up" my schedule a bit to prepare, or to rest up and conserve energy for the July push. Although I did all my readings in June, I did tend more towards the "resting up" approach.

I think part of the emotional strain is just the "culture shock" of trying to go from a life of low pressure and lots of isolation to - people, schedule, pressure.

Don't get me wrong....the course, the people and the discussions so far are incredibly interesting, stimulating. My intellectual and social self are enjoying it immensely.

Maybe I'll skip tomorrow.

I thought maybe I could leave early today, but there just didn't seem to be any opening to do so.
During break I REALLY wanted to lay down and looked around. There wasn't anywhere inconspicuous. I thought about going to my car to rest but it was too far to walk there, rest, and walk back.

Oh well, I'll let you know what happens. This is the second day out of four I've come home and wanted to quit.

Looking ahead.....

It's probably not the best idea to try to look too far ahead at this point. Still, after day two of the PhD course I can't help but wonder at the future. In four weeks I'll either have managed it, or not. I'm trying to be positive - using imagery to picture myself having succeeded in completing the four week course.

But after today, I wonder...

It just hit me sitting in class today that this process would be difficult for anyone, let alone someone who's sick and easily fatigued...

I had a kind of epiphany that the amount of time and work involved during this month is a lot and must seem overwhelming, even to a healthy person.

The last hour of class today the waves of illness were washing over me - my chest hurt, lymph nodes in my arms ached, I felt fluey....it was all I could do to not pack up my books and come home....but I stuck it out.

Then I came home.
and collapsed
and thought
What
am
I
doing?
I mean part of me wonders if my lack of stamina is the result of having lived such a low-key life style for the last 5 years - pandering to my illness.

But this is hard
- and despite the fact that I've done almost all the readings,
I still have work to do tonight
but my brain is tired.

River Walk - my need for earth connection

I've always felt a strong connection to the places where I have lived. Sometimes this seems like a good thing, sometimes not. There's something about sitting on a rock, watching a river, listening to the rushing water, the birds, the breeze. I feel part of something bigger. I've always wanted to live in places of natural beauty. When I'm in urban and suburban space for too long, I start to feel claustrophobic. I live in a city now, however there are places of beauty throughout the city as well as surrounding it - rivers, Lake Superior, woods and wildlife.

Today I drove about 5min from my house and took Teagan on a walk along the Current River.
It was beautiful. I should probably spend the whole day resting, preparing for tomorrow but I just felt the need to be in the woods today. I didn't walk far. We went about 5 min. upstream, then forded the river and walked back on the other side. I tried to take photos - including macro images of some of the flowers (the wild roses and bunchberry are in bloom). I felt happy to be out on such a gorgeous day, happy to be alive.

Preparing the Bunker

On Monday I start the PhD course. I feel like I'm preparing a bunker.... I've done most the reading for the course, stocked my fridge and cupboards (in case I'm too tired to get groceries this month - a distinct possibility), paid bills, and done some cleaning and errands. Hopefully, most my focus can go towards the course. It would almost be nice to have someone around to help out with stuff this month; on the other hand, having quiet when I'm home will be an asset.

People take energy - talking, even being on the phone can be draining when I'm having a sick/crash day.

A recent study I read found that for people with M.E./CFS, any activity could cause a crash... it didn't matter if it was perceived as a positive (fun, social, celebration) or a negative one. However, even though some activities drain me physically, sometimes I need to feed my soul - go for a walk in the woods, socialize with friends, whatever. It may cause a crash, but at the same time, enjoyable activities make me happy and help sustain me which I can't help but think is healthy (crash or no crash).