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.........................................