Friday, May 29, 2009

Motivation: I'm just a Pavlov's Dog

I've been writing and thinking a bit lately about motivation (see procrastination label), and keep getting stuck about what to do. I thought I understood the problem, but if that was the case, why was the solution not also apparent? Well, I think I was missing something crucial, because I was only thinking about procrastination, and not lack of motivation.  

So I was lying in bed last night, and it came to me.  What makes people want to acheive, to succeed? It's not pressure to be perfect, pressure to impress people, not really.  It's because they get a reward for their achievements. It makes them feel good about themselves, it contributes to their positive self-image and self-esteem.  And that is the difference - for some reason, I was taught NOT to feel good about my achievements.  Whatever I did, whether it was getting straight A's, editing the yearbook, or winning swimming races, I never learned to celebrate my victories. They were expected of me, not validated. I remember being too ashamed to line up in first place to recieve my gold medal for the two races I won in the Ontario Swimming Championships.  Anything I achieved must by definition be easy, since I was no good.  I learned early that being proud of myself was very undesirable.  I discredit compliments, admiration, encouragement, awe...This isn't just perfectionism. I've gotten over a lot of that, I have had to relinquish a lot of things I used to hold true about myself. My brain doesn't work like it used to, I slip up all the time, forget many many things.  I've been okay with that, gradually. But when it comes to my productivity, I can never feel good about things I've done. Does it surprise you, then, that I lack motivation to start and especially finish things? 

If I can't feel good about myself for the things I finish and acheive, what is my motivation to get them done? I must deflect all praise for my finished projects. I must find reasons not to be proud, to find them not up to standard. Sometimes I think this is because I know I had the potential to do much better - had I not had the obstacles of illness in my way - the fatigue, the inability to concentrate, the inner critic, the pain. But I am not allowed a handicap. I'm not allowed to say it's good in spite of my difficulties and struggles. I can't glow with pride and show off what I have done, like any artist needs to. The moment I feel proudness welling up, shame steamrolls over it.  How dare I be satisfied with myself for even one fleeting moment?  My lot is to work relentlessly without reward, because that is what I OWE.  Where do these ideas come from? All I know is that I am squeamish accepting the slightest praise about my jewelry and knitting.  Even though I know my writing is excellent, and can say so, I can't let it get me anywhere in life.  Whatever my talents, I shouldn't take credit for them.  

Countless hours in the pool, countless hours reading and doing homework - these are not the reasons I did well in swimming and school.  I did not attend either my highschool or university graduation.  Not allowed to celebrate my achievements.  If I can't feel good about anything I do, why do anything?  My job now is to find a way to be proud of myself without being ashamed of it. To realize that these feelings are human, normal, and GOOD.  They are what motivate people to continue to realize their dreams, successes.  They are what allow people to feel like they deserve to be paid for their work.  To feel valuable and like they are contributing.  To feel like they belong in the world.  Killing my feelings of pride about what I do is killing me in all of these ways, and I have to reconcile.  I have to change my beliefs about feeling proud and celebrating my accomplishments.  I have to start believing these feelings are my right, they are deserved, they don't mean I'm self-centred or egotistical.  They are just necessary for a good self-image, a sense of autonomy, purpose, efficacy.  Feeling good about what I accomplish is necessary for confidence and self-esteem.  I refuse awhile ago to keep beating myself up, but I can see now that I still do it.  My inner critics still have a way to control me and keep me down - by keeping me squashed, keeping me from taking any reward whatsoever for my efforts and labour.  I've been living in a concentration camp of my own making, with a thankless task-master who allows not a moment of rest between finishing one job and starting another.  It's no wonder, now, that I refuse to come out of my bunk most of the time.  

Awareness of this, the last gigantic way I am holding myself back, is the first step.  I am going to start letting myself enjoy the things I make, I'm going to listen carefully and try to absorb any praise I get.  I'm going to let myself be proud more often, and when I feel ashamed, I'm going to tell myself I have nothing to be ashamed of.  Because I know that much is true.

Pavlov's dogs experienced "extinction" when the bell was consistently not followed by food (stimulus and reward).  I have experienced extinction too, but I can retrain myself, if I let myself enjoy the 'food' of my labours instead of continuing to believe my bowl doesn't deserve to be filled with kibble.  After all, I do press the lever once in awhile.

Thursday, May 28, 2009

Campaign Month is Over, but we are JUST GETTING STARTED

May 2009 marked the beginning of the Blue Ribbon Campaign and in a short month we've seen the BRC message spread all over the world. Thanks to modern technology like Twitter and Facebook, we've made connections and affected many lives. But we are just getting started!  

Before we can make a big impact on research and real help for those of us affected by CFS/ME, we need to register to become a non-profit - and that costs money!  We are a small group of very accountable individuals, who have already put in differing amounts of our OWN money as well as countless hours. We want as much as money as possible to go directly to fund research projects, raise awareness etc. Please donate here: - every penny of the money raised right now will go towards filing our registration papers - fees of $500 USD.  

Our vision is grand, and our hearts are grand. We've seen the real power in a few voices that grew to be a thousand as we spread the word about these disorders this month. It only motivates us to work harder, fight harder, and band more closely together as a team. Through every challenge, our vision and integrity is clear - we will not back down, we will not give up, we will not go away until we are heard and cured!!  Please join us, support us. Even $1 makes a big difference to us.  Only 500 people need to donate $1 and we get our feet on the ground. From there, skies the limit. We think BIG. :)  

Please donate:  BRC4ME!!!

Wednesday, May 20, 2009

Parental Report Card

So, I'm reading this book, "If You Had Controlling Parents", and all is well and makes sense, but perhaps all along I'm still thinking it doesn't apply to me quite as strongly as it would some other people. Then I come across this parental report card, where you grade your parents on how well they did the following: 

Granted you emotional freedom
Saw you as a unique person and encouraged your potential
Fostered open communication
Modeled healthy boundaries and provided consisten limit setting
Bestowed affection, acceptance, and physical touch
Fostered an awareness of your inner life and encouraged connections outside the family
Loved you, encouraged you to individuate, and set you free

If I did this as a true or false, all of them would be false.  I'm realizing that it's not just about not standing in the way of a child's development, it's about actively nurturing it. And that's the mistake I'm making, thinking it wasn't so bad for me. Because she didn't actually get in my way at all, so I figured I didn't have the right to complain. She didn't actually beat me up or tell me I was bad. She just let me believe it, and somehow I'm still blaming myself for that, I'm still taking responsibility for having that idea. I'm sitting here thinking, well, I shouldn't have tried to manage her emotions, that's my fault. I shouldn't have tried so hard to win her approval, that's my fault.  But now this book is saying that good parenting is more active than that, more mindful, more intentional. There was nothing intentional about how I was raised.  I was raised with absence, with avoidance. And I'm thinking that the fact that my mother refuses to remember anything from my childhood is an insult, it's telling me that there was nothing she enjoyed about raising us, that she does not have one happy memory about being a parent.  What does that say about me? Well, it confirms that she didn't love me. Big time. Her self-serving refusal to dig into her own past to help me understand mine makes me very angry. She neglected to support my development as a child, and now she's neglecting to support my healing as an adult. There's this treasure within her, memories that could help me make sense of things, help me have more compassion for my child-self, maybe, and she's sitting on the treasure box with an airy smile on her face, shrugging - "What? There's nothing in there. It would be a little inconvenient for me to get up and look in there. I don't want to bother finding the key. You aren't worth it." Each time she refuses to answer my questions about our past, she's telling me I'm not worth it. That she will not suffer anything uncomfortable to ease my pain...and that is how she treats me in everything. She buys tickets for us to go to Stitch n' Pitch and then tells me I have to pay for mine because now that she's on a budget, it's a little more difficult for her. God forbid she sacrifice anything for me. God forbid she spend $20 less dollars spoiling the shit out of her grandkids, who wouldn't even notice, so that she and I can do something fun together, so I can do something exciting once a fucking year. No, I don't want to go anymore. I wonder if she can return the tickets? She's so unwilling to see my pain, the reality of deprivation I live in, so unwilling to hear about anything I suffer more than one time, even though I suffer those things daily. How can I forgive her when she continues to treat me as less deserving than others, as less important than herself? How can I get her to even see that's what she's doing?

My childhood was one, long rape. One continuous stripping of the things that were supposed to be there for me - protection, love, encouragement. And she continues to rape me in these little ways that I can't see, these subtle ways that she's completely blind to, and I only feel mostly subconsciously. Her ungenerosity to me, and her displays of generosity to everyone else damage me, they eat away at me, they hurt me deeply in small bites. The only way to make it stop is to stop needing her, but there is no one else. I am the orphan dog who settles for unsatisfying scraps because that is all I can get. 

It boggles me now to look at that list, to realize that she failed me in every way possible. How so?

1. Emotional freedom - I was petrified to express anger outright, made to feel guilty for expressing need or want, shamed to feel exuberance, pride...some of this was laid upon me by my father, but after their divorce, I could not express any feelings for fear of exhausting my mother further, asking for too much, making any demands. When I was a teenager I was extremely depressed and labelled moody and grumpy because I felt I had to avoid the biggest sin, which was expressing my anger directly. Her perfect innocence, it always fools me into believing I have no right to be angry with her. She gets away with ripping me to shreds because she's so convincing in her belief that she's not done anything wrong. I was always on my best behaviour and poured my violent, overwhelming (to say the least) emotions in the only safe place I could find - my journal.

2. Saw you as a unique person and encouraged your potential - I wasn't seen at all. I felt it was my job to be as unseen as possible. I was as perfect and silent and needless as I could be as a child, and as a teenager I had so much angst, it was impossible to hide, so it looked like 'skulking'. Running to my room, looking down, mumbling, saying naught. Not once did I feel I could speak up about what was making me so miserable. The thought never crossed my mind that I could or should. I don't recall being encouraged, rather I was expected to excell at the things I'd always been good at, and that was that. 

3. Fostered open communication - see above. There was no speaking in our family when I was growing up. We were three people living alone in separate rooms of the same house. When I think about it now, I thought I was supposed to hate my brother. It never occurred to me to try to get along with him. I don't know where that came from, but he seemed to feel the same way about me. On the rare occasions we had fun together, it was embarrassing, and promptly forgotten. Did we do it subconsciously to say something to our mother? More or less, communication was blocked because there was nobody around to talk to. She wasn't there, so how could we communicate? When she got home, she was exhausted, or unhappy, so how could I approach? When we moved in with my stepfather, who I could not stand then or now, it was his house, his rules. She was with him, on his side, and he on hers. I was even more alone and unable to speak my truth.

4. Modelled healthy boundaries and provided consistent limit setting. There are no boundaries where there is no relationship. She set no limits - she didn't have to because I was terrified of doing anything wrong.  She was not there to guide, to correct...I don't even know what setting limits means in the context of our family. There wasn't need for them I guess, since I was on my best behaviour around all authority figures. It was only when I was a teenager and started living my own life that she tried to enforce limits. And I just laughed in her face because she'd never before given a shit what I did. I played by the rules when I was younger and it didn't get me any love or approval. Staying out late with my friends or boyfriends did.  And she modelled that to me by leaving us alone overnight all the time to stay at her boyfriend's house.  She treated me as if I had the needs of a grown person, and yet did not want to allow me an adult's freedom to take care of them myself. Of course I was angry and deprived.

5. Bestowed affection, acceptance, and physical touch. I have no memories of touching, or loving words. I have not felt accepted since I was a child of 5 or 6 years old. 

6. Fostered an awareness of your inner life and encouraged connections outside the family.  These things weren't blocked, but they certainly weren't actively 'fostered'.  I couldn't help but have an awareness of my inner life since I was forced to live inside myself all the time, forced to become self-monitoring and self-conscious at the age of 7.  Having an awareness of my inner life did not mean I was allowed to express it or validate it or value it.  All I did was discount myself, invalidate my feelings, devalue my uniqueness. 

7.  Loved you, encouraged you to invdividuate, and set you free. I was set free alright, long before you are supposed to be. Without love or encouragement to individuate. I was thrown to the wolves and left to fend for myself emotionally, with no mentor, no guidance, no one to talk to or seek advice from. 

Huge parenting FAIL. 
No parents are perfect. But what parent leaves their child with these impressions? She lives in a bubble of denial, suppression, excuses about the past. I cannot forgive her, not now, maybe not ever, for being incapable of loving her child. She had her reasons, and obviously she feels excused. Maybe subconsciously she's trying to make up for what she did to us by spoiling her grandkids. But since none of those are my kids, it just makes me more bitter and resentful. I can't stand to see them, growing up with love and comfort and parents who read and take action, and grandparents who have found in themselves the ability to give and love them, but still not me. Still, they can't love me. Because I am this festering sore, this reminder that everything is not perfect, that you can't run away from your responsibilities and past failures.  

Right now I hate her so much, I can't imagine why I bother spending any time with her. When it's all out like this instead of simmering away, eating away, broiling away in the pit of my stomach, I just want to hit her, to punch her in the face, kick her. I just want nothing to do with her.  How can she live with being such a failure as a parent? How can she be okay with herself? But of course I know that, it's because she forgets whatever is unpleasant.  Why is she like that? I know absolutely nothing about how she was raised, if anything bad happened to her as a child. I've always assumed everything was rosey because her parents are still together and she's never said anything negative about them. But maybe she's just learned this from her mother, I can see that my grandmother is quite likely to be the same way, not wanting to think about the bad shit in the world. Giving it the minimal amount of acknowledgement but not doing a thing about it. And maybe my brother chose a wife who's like that too. Because they all seem to be that way to me. They don't hear me and what I go through. They nod and change the subject without offering to help. They all think having stuff is more important than helping a cause. As if your kids are going to grow up damaged if they were in a smaller house, or had a few less clothes, toys, books.   But that is a whole other blog post, isn't it. 

Thursday, May 14, 2009

Bits & Pieces: to J.

Another XL tweet:

@CanoeU I have this overwhelming feeling of nostalgia today. The rain triggered it and I wished I was camping. Cuz even in the rain, we're outdoors and together. Playing cards under a tarp, Nalgene bottles full of rum & mix, or vodka & mix, the lantern attracting the bugs. Now I can't go camping because sleeping even on an air mattress kills me - the over-night damp turns my bones into ice cubes, brittle and aching.

Laughing at videos reminds me of friends, silly times, the best times always happen when we're doing nothing at all...Watching ridiculous movies and reciting the dialogue in real-time - "Yogurt? I HATE yogurt! Even with Strawberries!" "I'm French, why do you think I have this outrageous accent, you silly king!" , every spoof movie on earth, and you are the only one I've ever watched them with. And now I can't even plan to sit on your patio this weekend while you pull weeds and get the yard ready for spring, because I don't know if I'll be awake, or any fun. And yet that's just what I need - some fun.

I miss you more every day.

Wednesday, May 13, 2009

ME/CFS is Not a Mental Illness - By Andrea Martell, Blue Ribbon Campaign Leader

ME/CFS Awareness Day- ME/CFS is not a mental illness - originally posted at The Blue Ribbon Campaign Blog -
I felt it was important to write to you personally. It is hard for me to write well now, so I no longer do. However, this is too important to remain silent.

The Blue Ribbon Campaign and other activists in the ME/CFS community were assailed today in a blog suggesting that we are mentally ill. This Dr. supports Wessely's psychiatric approach of ME/CFS, that it is a somataform disorder (hysteria). The true purpose of his post, on this, our one day when news stations around the world, and kind people are raising awareness for us, I cannot know. But I wish all of you reading this and campaigning for us to understand what I think of this.

I have three points to make 1. ME/CFS is not a mental illness 2. People with ME/CFS should not be fighting amongst each other in terms of its name and 3. Mental illness should not have a stigma either

ME/CFS is not a mental illness. The reason I can say that is because it is not in the DSM-IV. This is the bible to psychologists and psychiatrists that constantly evolves to show society's view of mental disorders. For example, homosexuality was in the DSM up until 1980. In the 1960's it was treated as a mental disorder.

Now while certain psychiatrists would love for ME/CFS to be a mental disorder, so they could make more money off of our illness by turning it into a somatoform disorder, the fact the remains that it is not classified as this kind of disorder. Any psychiatrist who wanted to diagnose you with a disorder from the DSM would have to turn to it, and give you various interviews from it. If you fit it, they could then give you a diagnosis. This is not a simple process. Any psychiatrist trying to do this would quickly find that ME/CFS is not classified in the book as a mental disorder. Instead it is classified by the WHO as a neurological disease and by the CDC as a disease of the nervous system.

I would also like to point out that it is clearly written in the Journal of Chronic Fatigue syndrome for patients not to give blood or donate organs because of the possibility of unknown infectious agents. There have been outbreaks of ME/CFS, and people have caught it from a blood transfusions. When was the last time you heard of a mental illness you could catch from a blood transfusion? The disease is not well understood by anyone, as it attacks multi-systems in the body, and by that I mean that the primary cause of ME/CFS is not known. What is known is that it causes cardiomyopothy, leads to cancer, liver problems, and organ failure. People have died directly from this disease because of the psychiatric approach. This must stop, now. This website started so that we could fight together. All of us, with what strength and talent we have, from where we are right now.

My next point is based on the fact that I am Canadian. Here in Canada ME and CFS are used interchangeably. I was diagnosed with CFS by a CFS specialist in Ottawa, Ontario 8 years ago, by the Canadian Criteria from what I can tell but my medical bracelet says (CFS/ME)/ Now, I realize in the community that there are fractions about the usage of ME/CFS, which words to use, and whether they are two separate illnesses.

One thing to remember is that what term used often depends on the Dr. or the country the patient is from. For example, when Sophia Mirza died, her body autopsied, and her spinal tissue studied, what was reported out of the UK was that she died from ME, and that is part of the website name but if you read the Dr's conclusions that she died from the disease he uses CFS, because he says it is the proper recognizable medical term. Yet, what he found to give her this cause of death were viruses in her spine and as it has been described she clearly had neurological symptoms. I am talking about Sophia to illustrate a point. Everyone of us, no matter what our diagnosis has been dismissed by Dr's and family at one point or another. Yes, one name for the disease has to be decided upon, and it must be used world wide, so that it is as recognizable as diabetes or cancer. However, whether you were diagnosed with ME or CFS you are going through the same trials and tribulations.

The difference in names was not created by us. It was created by the same establishments trying to keep biomedical research from being done, and trying to make it seem like what we have is not serious. That what we suffer is not real. Every time we are dismissive to another patient because of their diagnosis, saying "oh that's not real, but this is", you are doing the same as what the doctors and politicians have done to us. That is why I will not support any organization that supports this fracturing. Calling the disease by different names, classifying patients differently leads to re-traumatizing us, and keeps the true issue from being discussed. That issue is that we are seriously ill, our lives are being lost, and we are invisible. So please, I do not care if you say ME/CFS or CFS/ME, but include both. Both are real. Both are physiological. Both are killing people. Most differences in the name have to do with geography, not medicine.

My last point is that there is nothing wrong with being mentally ill. We all live with a stigma that what we have is some form of hysteria. We are not believed, and we get sicker because of this disbelief because our health care systems ignore us when we develop things they can test and treat. . Like all illnesses, some people with ME/CFS also have a mental illness. Mental illness is not bad. It's not wrong. It just is. Our fight against being called mentally ill is not a slight against those with a mental illness, rather it is a fight to be treated as our illness demands. People with mental illness deserve the same respect we do.

We are not our illnesses. No matter what we have, it cannot take away who we are. It can take our friends. It can take our dreams. It can take our careers. It can take our families. It can strip away everything we thinks makes us who who we are. But I tell you, you remain. The core of who you are, that is your strength, and it is still there.

That is what I fight with. I have felt called all my life to serve as I call it. When I went into remission, I studied psychology because I hoped to make a difference in the lives of others and one day fight the stigma and psychiatric approach to ME/CFS. Instead a virus left me with a relapse that has brought me the point where my health is the worst it is has ever been, and it continues to deteriorate. My relapse happened fast. I lost all the things I love about my life in just a few weeks. I still grieve for that. However, I cannot stand the idea of my life lived without purpose. So now, I devote myself to the cause of raising awareness of this disease, stopping ignorance in its tracks, and making sure that one voice at a time, we will gather, and whisper until we are heard.

I thought when Sophia died that we would be taken seriously, finally. But I find instead that governments, politicians and doctors continue to treat us in the same way that eventually killed her.

We live in an age when a 140 character sentence can be sent to 2 million people . We live in an age when if you cannot sit up that a mobile device can be used to relay information. We can be heard.

We need to gather together, hone our message, stop fighting amongst ourselves, and rise to be heard.

There are 28 million of us worldwide and it may be more. We come from all walks of life. Most of us live in fear of telling someone that we have this illness. Some of us have little support from family, friends, and social services. We live in isolation to protect ourselves from viruses, and because we aren't mobile. It is this isolation, the nature of the disease that has allowed the abuse by doctors, family, and social services to continue. It stops today.

Yes, you, are one voice. Perhaps you are not strong enough to speak. Perhaps you can only whisper. Perhaps, like me, it takes you hours to write something that makes sense, or to read something, even though you were once a wordsmith and could speed read.

Join us Today, together we can change the world. Whisper to us your story. Whisper with us. Together, it will be a shout.


Andrea Martell

P.S. What I believe in most is doing what you can, with what you have, right now. This is your strength, the base from which everything else springs.

Bits N' Pieces: An XL Tweet

Posted moments ago
I just thought of the best comeback for a conversation I had a few hours ago! @writeinmovement u may be interested in this! Follow the link for the full tweet. I've been trying to shake off my ex, we broke up near the end of March beginning of April, but we hadn't really seen each other much in the previous 3 weeks, so really it's been over 2 months. He keeps IMing me, I keep ignoring him. Finally tonight I just told him it's really over, I've really moved on, he's telling me he still loves me and why do I dislike him blah blah, and I was extremely civil, I told him I was very sorry but his feelings were not reciprocated etc. Finally he asks if I just want him to stop talking to me and I said, 'yes' (obviously he needs me to be this direct). Then gets mad, starts swearing and says "you never ever loved me" and I told him I loved who he pretended to be (long story, but he's literally ALL talk, NO action). He replied, "oh like you're so real", and I said, "I've always been an honest person". He said..."you live with excuses". At the time it was so bizarre, so the-pot-calling-the-kettle-black, and we ALL live with excuses (unless we're the Dalai Lama etc) so I just said LOL. His answer was "ya whatever" and that's the last I've heard from him. But wouldn't it have been great if it went like this?

Him: You live with excuses.

Me: I'd rather live with excuses than with you.

Cuz that's the truth, amen.

Blue Ribbon Campaign Book List (first draft)

Blue Ribbon Campaign Recommended Book List
by @perpetualspiral (a work in progress - me and the list!)

Living With Me by Charles Shepherd

Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia by Russell Howe, Alan Logan, Alison Bested

note: this is the personal recommendation of Blue Ribbon Army member @perpetualspiral for anyone suffering from fatigue.

Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife by Gregg Piburn

You Don't LOOK Sick!: Living Well With Invisible Chronic Illness by Joy H. Selak Steven S. Overman

Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome by Sue Jones

Recovery from CFS: 50 Personal Stories by Alex Barton

From Fatigued to Fantastic by Jacob Teitelbaum

Defeat Chronic Fatigue Syndrome: You Don't Have to Live with It -- An Eight Step Protocol by Martha E. Kilcoyne

The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome by Jay A. Goldstein, Byron M. Hyde , P. H. Levine (Editors) Nightingale Research Foundation (Coroporate Author)

Knowing Me: Women Speak about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome by Caeia March (Editor)

Living Well with Chronic Fatigue Syndrome and Fibromyalgia: What Your Doctor Doesn't Tell You...That You Need to Know by Mary J. Shomon

Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, Robert M. Bennett, Daniel L. Peterson

Explaining 'Unexplained Illnesses': Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, and Gulf War Syndrome by Martin L. Pall

Reviving the Broken Marionette: Treatments for Cfs/Me and Fibromyalgia by Maija Haavisto

Chronic Fatigue Syndrome: Your Natural Guide to Healing with Diet, Vitamins, Minerals, Herbs, Exercise, and Other Natural Methods by Michael T. Murray N.D.

I would also like to recommend the following book, however, with this note. The term "stress-related disorder" is a very controversial one, and one that the CFS/ME community does not like because it can seem to imply 'mental illness', and a misunderstanding of "stress" in the general population as not being a significant cause of disease. However, long-term stress is severely damaging to the body, and in my case, I believe it was a causal factor in the development (and duration) of my fibro/CFS. In addition, I that feel a thorough understanding of stress, as is given in this excellent book, is a necessary tool for anyone attempting to cope with CFS/ME, fibromyalgia, depression, anxiety and other disorders that are affected by overstimulation and stress. This is one of my favourite books in the world.

Undoing Perpetual Stress: The Missing Connection Between Depression, Anxiety and 21st Century Illness by Richard O'Connor

Sunday, May 10, 2009

Waking Up Alone, in the Dark

Worst. Feeling. Ever. Nobody knows I exist. Unloved.
Woke up back in depressed mind, thinking about Susan Boyle and how I'll never be that good at anything. Thinking about how even though B was incapable of loving me, he wanted to, and he was a warm body in the middle of the night. Thinking about how before I admitted to myself I needed people, I never had to feel this lonely.
Feeling guilty because I slept through Saturday instead of calling my mom like I told her I would, but sad that she didn't call me, that nobody called me in the last 24 hours. That my best friend has given up trying to hang out with me because I'm so sick and no fun anymore. God that hurts.
My life feels totally out of my control. I can't even decide when to be awake or asleep. Been in bed for the last 24 hours, the last 12 of which I've been sleeping with severe pain, severely tensed back muscles to protect that pain. Dreaming of crazy things, fantasy lands that are never safe and happy, people I am never sure really love me. There is no escape!
When awake I can do things and think things that make it okay, but it's not okay. It's not okay that I could be someone else, someone better, if not for what happened to me and my inability to overcome it.

1 hour later:
The truth is, I'm terrified. I've been living in denial - this is temporary. I'm not really this sick. But I'm laying there, and I can't get up to get a book that is four feet away from me, and I've just had a lot of sleep. I ache, and not only in my muscles. I ache to have the life I used to, to be able to swim and feel powerful, to be able to run and show my enthusiasm in ways other than "!!!".
To be able to throw myself at someone and have them catch me - I'm just too heavy now, metaphorically speaking. I make people uncomfortable. I'm bitter and cynical and won't let anyone in. And I'm terrified that there is now absolutely nothing I can do to get better. I've become to weak to put in the effort needed to improve. I'm afraid to the bone that I've gone past the point of no return. And with no one to take care of me I see this monster, this suicide coming up over the hill. I don't want to die, but I can't live like this. I can't bear another night, another hour of this particular anguish. I don't know how to make it go away. I want to crawl out of my skin, I'm panicking panicking panicking.

Thursday, May 07, 2009

I Want To Whine

So I'm going to whine. I'm so tired. My dishes are dirty, I have nothing easy to eat. I have a headache. The motivation I had last week to DO is dwindling. No that's not really true - the motivation is still there, but there's no energy behind it. There's no urgency, there's the 'what's the point' starting to creep in. So many things I want to do, some started, some promised..and all I want to do is curl up under a blanket with my dog and sulk. Pressure can be paralyzing when it passes a certain point. I pat myself on the back for just writing a blog entry right now, even though it's not one of the three I want to be working on. I need a break! I don't know how to take it. I feel like I've spread myself too thin, I'm so scattered and have too many projects going, too may things to get to. I know, one at a time. I'm hungry. I have to get to the library - this DVD is already two days overdue. I have to get cat litter - my cat is rejecting even a scooped litter box now. But even in order to do that, I need to shower and dress and eat something. It just seems like too much. I called my mom for help, she's not home. Help. HELP. I can't get there. I want to write about Tuesday, about the things my therapist and I talked about. I want to finish the second article I'm writing for my other blog. I want to finish the article I finished but lost on Bukisa, and find pictures for another one that is ready to publish on Associated Content. Then there is the jewelry projects owing, and the books I need to get reading...they are borrowed, from my friend and the library, and OWING causes me anxiety. There's info on the web I need to read, blogs, research. I need to finish collecting links and books for the blue ribbon site. And the apartment, laundry, dishes need to be done. dog needs to be walked. Organizing needs to be done. Help! I am tired. I need more sleep. I need quiet. I need to get regular. I need to get clean. I need to stop bleeding. I need to see my new friends. All of a sudden I feel pulled at from every direction and that makes me want to shut everyone out. And then there's the pitiful response (or lack of) from my family and friends to my campaign efforts. They really do not want to hear it from me. They can't even take ten seconds to say they care, let alone a minute to read a blog post, sign a petition, download a picture. Every moment I am ignored hurts me worse than the one before. I can't forget the frustrated words of my mother last week - "I just want you to be better!" Like it's my fault, like I'm getting sicker on purpose. She's tired of having to help me, I guess. She doesn't want a daughter anymore - did she ever? Oh I know I'm catastrophizing and mind-reading. I don't care. It hurts, I'm alone, I need help and I'm asking for it, and still...I'm alone.

Tuesday, May 05, 2009

A Letter to Andrea

I just want to share with you my gratitude for what you have given me. However long my ability to contribute to our campaign lasts (hopefully indefinitely) it is you who have provided the necessary catalyst for my finally engaging in meaningful activity. I've often wanted to be involved in some sort of activism, but lacked the belief that I could be effective. You've shown me what a person with a laptop and determination can do - in a matter of days, you've gotten your message to thousands of people, and I find that incredible and amazing. Your self-belief has allowed me first to believe in you, and then in our cause, and now in myself. You came along and provided me the forum and inspiration I needed to start doing something I have always doubted I could do. I am 34 years old, and this is the first time I've ever felt I could make a real, lasting impact on the world about something extremely important. My motivation stays strong as daily I see your efforts and the efforts of the others you have inspired to join us, and as daily I receive encouragement from those to whom our message has reached via my words and actions. I cannot express enough how much of a difference this experience is continuing to make in my life, and how the grandness of your vision expands my own. I can see lights in my future where there were none, the future that I'd stopped looking towards because of its uncertainty and emptiness. I feel like, no, I believe I can contribute, and make something of myself. You've sparked an exponential growth of possibilities in me, and that is the best gift I have ever gotten. I know it is early in our friendship and campaign, but look at the difference you have already made in the life of one sufferer. Your mission has not only succeeded in spreading awareness, gaining attention, and future research funding for CFS/ME. It has inspired this individual to fulfill her potential, and surely it has and will continue to have a similar impact on others. Thank you is not enough.


My Story of Invisible Chronic Illness

I've suffered from Invisible Chronic Illness (ICI) most of my life. That's right, even though I've only had fibromyalgia, myofascial pain and fatigue since 2003, clinical depression is also an ICI. My depression started at the age of seven, when my parents divorced, and my brother, mom and I returned to our hometown with the stigma of divorce and lowered income status hanging over our heads. Please note: my experience of my youth reflect my perspective, and I do not speak for the rest of my family.

When you are seven years old, you do not know what is wrong, just that something has changed. Not only had I lost my father, but my mother's two-job and social life more or less left me an orphan. I was provided food and shelter, rides and clothes, but truly do not have any memories of love. My childhood memories do not include times spent with my mom, nor hugs, kisses or encouragement. I don't know if this is accurate, and my mother prefers not to remember or talk about those times, which were surely marred by depression, fatigue and loneliness for her.

A child left without emotional support is a devastatingly neglected child. Survivors of childhood physical abuse say that the lack of love was what affected them most. Emotional neglect is under-recognized as causing serious emotional damage to children, who often grow up with low self-esteem, inability to understand their own needs and desires, difficulty with intimacy, and reduced capability of authenticity. In other words, clinical depression, and depressive personality disorder. Anxiety disorders occur regularly in cohort with depression. I suffered severe social anxiety for years after I quit drinking to make my social experiences manageable. I attended A.A. but always new that my alcohol dependence was merely a symptom of my pervasive anxiety and depression. These days, I struggle with an eating disorder: I use food to compensate for the lack of skills developed in childhood to deal with overwhelming emotions. With the help of my brilliant, compassionate therapist, I have been able to identify my emotionally neglected childhood as the cause of my struggles in life, including low-self-worth and what ignorant people usually call procrastination or laziness. At best, my lack of motivation is seen as a result of my depression. At worst, it is seen as proof that I'm a spoiled brat who feels entitled to have everything handed to me on a silver-platter. Nothing could be further from the truth.

Each year that goes by, I lament and feel guilty about my potential gone to waste. As a child, I was a high achiever - honour student, yearbook editor, MVP of the swim team...This was easy for me because I knew it was what I was supposed to do, what was expected of me. I never got in trouble, was usually a teacher's pet (unintentionally) and basically did my best to be a perfect little girl. Years of self-control and perfectionism not only left me unable to relax and be myself, but caused me to hate myself because I could never be perfect enough to receive the love and approval from my mother these efforts were intended to earn. I held my true self in so tightly, eventually it crushed, folded into itself, and hid away until the day it could safely re-appear.

Life with constant self-hate, self-criticism, self-denial and self-denigration is torture. I was convinced that I was absolutely unlovable and unwanted. I believed that I was 'different', a 'bad person', and that it was all my fault. Terrified of being revealed I lived my whole adolescence as a convincing persona - a teacher called me the 'most laid-back kid in the school' and a friend wished he 'had it all together' like me. Meanwhile, inside, I was in excruciating turmoil. I spent hours and hours after school writing journal entries analyzing myself and the people and world around me, trying desperately to figure out how to fix myself, how to fit in, how to be good. At the age of 14 I had my first real suicidal ideation, and these thoughts and intentions continued for the next 15+ years. In my twenties, I was unable to sustain the only employment I was qualified for, waitressing. I could not cope with the pressures of university at the age of 19, so dropped out second semester and began an on and off career serving food to people at various restaurants and bars. This job required me to be cheerful, friendly and confident, 3 things diametrically opposed to how I really felt. It was truly exhausting, and each time I obtained employment, I eventually had to quit as I was driven into one after another major depressive episode. I spent the unemployed times on social assistance, unable to get disability or even help making a case for it. I ended up, at age 26, hospitalized in a psyche ward twice in one year for suicidal depression. I completed two intensive group therapy programs, as well as shorter-term counselling and outpatient therapy. In January 2002 I completed the Core of Recovery program at Homewood in Guelph, Ontario. That program has helped me enough to stay out of the hospital since then, but did not improve my ability to work or take care of myself.

The following year, I had made some emotional progress and had hopes of further improvement. In March I contracted the very severe Norwalk flu virus, the end result of which was my current fibromyalgia, myofascial pain, and fatigue. I recall saying to my volunteer supervisor at the Canadian Mental Health Association: just as my mental health starts to get better, my body falls apart. In fact, many, many people with a long history of depression end up with fibromyalgia. In the summer of 2003, I was completely unable to sit up, stand or walk for more than a few minutes. I went to physiotherapy and while it provided some relief during sessions, by the time I got home, my pain was just as severe. I enrolled once again in university and was lucky enough to find and get health coverage for, a chiropractor who eventually made the fibromyalgia diagnosis. His treatments significantly improved my ability to function, so I could attend classes, even though sitting through them still caused me tremendous pain. My family doctor refused to prescribe anything heavier than Tylenol 3's with codeine, and amazingly I made it through to the end of my degree on that treatment regimen. I achieved my degree with 'distinction' and thoroughly enjoyed the learning experience. However, being an older student suffering from invisible illness and low self-esteem increased my social anxiety to severe clinical levels. I spent hours horrified and humiliated at the way I'd answered or asked a question, and was terrified when asked to participate in small groups on projects and do presentations. I felt, as I always had, like a complete outcast. Not only was I ill and older, I was overweight and stood out like a sore thumb against the backdrop of thin young women. Although a couple of my teachers recognized me as an intelligent student with experiences worth discussing, most of the time I spent gritting my teeth and re-living embarrassing social incidents in my head, over and over, like someone with PTSD (post traumatic stress disorder).

After graduation, I applied for disability, again. This time however, I knew I had no option but to fight for myself. I could not work, and I could not live on social assistance. While in school, I'd been given an ODSP loan and subsidized housing that allowed me to just squeak by financially. Once I was done school and back on welfare, all that changed. I did not have enough money to feed myself and had to accept help from my mother and even use a food bank. My initial disability claim was, of course, denied, so I obtained a Community Services lawyer, and enlisted the help of my family doctor. He got me quick appointments with a rheumatologist and fibromyalgia specialist in order for their diagnoses to appear on my Social Benefits Tribunal file. He took a written statement by me listing my symptoms and disabilities and re-wrote and signed it to include in my file. With the social anxiety, depression and constant pain, we were able to convince the Tribunal that I was indeed too disabled to work - but only for five years. In 2010, I have to prove it once again. Meanwhile, disability will not pay for any treatment whatsoever, and only some pain medications.

Despite my efforts and trying every narcotic and pain medication that's covered (prescribed by my pain specialist), my condition is actually worse at present writing. Over the last several months I have experienced increasingly frequent and painful symptoms of irritable bowel syndrome, due to the narcotics I have to take just to function at my current level. I have also developed new levels of fatigue, and spent most of the past of the month housebound and often bed-ridden.

I live alone, folks. I am unable to keep my tiny bachelor apartment clean, to cook meals for myself that follow proper nutritional guidelines, and can't afford the ingredients anyway. I struggle with so little money to pay my psychotherapist each month because she has helped me beyond belief to make such great progress in healing my emotional wounds. Thanks to her and my diligent, daily efforts, I am no longer depressed and my anxiety is not as severe. The SNRI Effexor has nearly completely eliminated the social aspect of my anxiety. I still am unable to relax, the muscles in my body are in constant tension unless I am doing a focused relaxation exercise, I'm hyper-vigilent and have an extremely exaggerated startle response. My current symptoms in this regard are very similar to those with PTSD, yet I've never been in a life-threatening accident or witnessed a catastrophe in person. I maintain, and my therapist validates, that my whole life I've felt bodily threatened, because I've felt so unwanted and unlovable and easily abandoned, that any sign of imperfection threatens the fragile relationships on which my life depended as a child (i.e. my mother). This is a deep core belief and psychological wound that I am struggling very hard to heal but not making much progress. The new medications coming out that help people with fibromyalgia and similar conditions are unavailable to me under my drug plan, and utterly impossible to afford. I spend some of my meager, meager income on supplements that I can't get prescriptions for but need - Omega 3 oil, calcium and magnesium, melatonin for sleep (I've struggled with extremely poor sleep and alpha EEG anomaly all my life, as well as nightly anxiety-themed dreams that sometimes have me awakening in tears). I have few friends, and none that live close that really understand what life is like with these disorders. I live alone and deprived of human touch, which is so thoroughly healing but unrecognized as such by those who take it for granted. My only daily physical contact is with my pets - a dog and cat without whom, I fully believe, I would not be here today.

Despite my suffering and so many years (15+) of extreme suicidality, I have survived and will continue to. I maintain the tiniest sliver of hope even in times of utter desolation, and have a curious and truly joyful spirit which will not allow me to give in or give up. I see my sicknesses and healing journey as my life path, and it has taught me so much that others could not possibly know, that I couldn't possibly regret it, for all my suffering. It has led me towards spirituality and wisdom, and now towards a greater purpose - helping create awareness and hope not just for myself, but for every single person on the planet who suffers, or loves someone who suffers, or who will, in the future, suffer from any Invisible Chronic Illness.

I would like to think that reading my story will create feelings of inspiration and courage rather than pity. Pity cannot help me, only positive action can. Despite everything I've been through, I am actually happier than most people on the planet. I know who I am, what I stand for, and what my priorities are. I am not yet able to live in the way that is most congruent with my values, but my journey is a process, a path, and the journey, not the destination, is and must be the point. I urge everybody to do whatever they can, whatever is within their means, truly, to help me and others like me along our healing paths.

Monday, May 04, 2009

Endometriosis - Another Painful, Hidden Illness - You Can Help

Endometriosis is a serious, incurable, painful disorder that affects approximately 5.5 million women and girls in North America alone; an estimated 89 million women world-wide. It's another example of an invisible illness, and suffers even more stigma for being a 'women's reproductive issue'. But women are the backbone of our society, the world's greatest untapped resource, and make up over 50% of the population. They are the shoppers, the people that make the economy go 'round. They are the mothers, the ones that raise our children in hopes of creating a better world. It is a difficult job in the best of circumstances, let alone with chronic pain and other symptoms. Please sign the petition for Endometriosis Awareness and help our mothers, daughters, sisters and friends around the world have their voices heard, have their welfare cared for, have their research done, and cure found.

There are medical interventions that may help the symptoms of endometriosis, but there is no cure. In many cases, dangerous and risky surgery is the only option for treatment, and it is never
guaranteed to work. Endometriosis not only affects the women who suffer the pain, but also their families. It makes sex painful, a symptom that is often experienced as shameful, an is a major thorn in important relationships with significant others: it can block communication with fathers, brothers, sons and friends, let alone spouses and boyfriends. Endometriosis can stand very much in the way of intimacy. Due to infertility, having children can be challenging, risky and expensive, if not impossible. The pain can be disabling and wreak havoc on women's home lives, careers and volunteer work. Endometriosis can take away women's lives and dreams.

You can help! It takes only a minute to sign the Endometriosis Awareness Petition, and you can sign anonymously if you wish. This petition is exceedingly important, not only for those who suffer from Endometriosis, but for their families, friends and loved ones, for those who do not yet suffer but will in the future, and for all of us with invisible chronic illnesses. The more
ICI's that are truly recognized and made priorities, the better it is for everyone, for our society, for humankind. It takes only 60 seconds to help. What better way to spend a minute than to help 5.5 million women in North America, their loved ones, and millions more across the planet.

Endometriosis is not even recognized as a word by popular spell-checkers. I find that pitiful, don't you? Help us change it.

The Endometriosis Awareness Petition

For More Information:
(also see links within article text - each
Endometriosis link leads to a different site)
Jeanne's Endo Blog - campaigner for Endo Awareness, founder of petition
Endometriosis UK

Endometriosis Blogs:
these blogs are fantastic sources of information as well as personal stories of courage and inspiration
Facing the Battle Head-On
The Silent Life Sentence
Living With Endometriosis
Yaya Stuff
Jeanne's Endo Blog

An Addition to the Procrastination Equation

Okay it's been twelve hours since I got up intending to write this post, so I don't know if I'll remember much of what I wanted to say, but I remember the essential bit. And that is, there's another element that was missing from my equation to explain my procrastination/paralyzation. And that's this:

c. 'what's the point?'

And this may be just or more as important than either a) guilt or b) rebellion.
I thought I'd gotten past the point of what's the point in my life, seeing as how I don't think I'm depressed anymore. But what's the point (WTP - not to be confused with WPT - the World Poker Tour) is an existential question that can exist and thrive without having a depression to feed it.

I was waking up this morning, and probably thinking of something I should/want to do (the distinction doesn't matter here) and I must've thought, "what's the point?" and then, being mindful even in drowsiness (which is awesome, and shows that intention works), I noticed the thought. What's the point of doing anything is a question I've asked myself a lot in my life. Nowadays, usually the point is helping people or for my health. Which brings us back to what else is there that makes life meaningful, and why I can't find anything meaningful in my life if I'm not helping people. Helping people can mean a lot of things to me - from just putting something out there that I think might wake someone up a bit, to sharing my experiences in hopes somebody else won't feel alone, to babysitting my friends kids or carrying somebody's bag. What's the point of doing something just for me, that isn't going to make me healthier? I mean the question of why do anything at all is still there, but I've answered that well enough for myself at this time.

Answering a why with a why not works sometimes, but not in this case. I only have so much time and energy and spending it on doing something that isn't going to make me healthier or help somebody else seems like a waste. Why, though? What is it that allows other people to see nothing wrong in indulging in 'selfish' pursuits? Yes, it increases happiness, but so can doing other things that may have some other benefit. Writing, for instance, is just as expressive, fulfilling and creative as making jewelry, but it also serves a bigger purpose. What purpose does it serve to make jewelry? What can my jewelry do for mankind? I feel my writing is much more valuable.

So what's the point? I don't know. I'm going to have to sit with this one and come back to it.

Sunday, May 03, 2009

Reasons I will and won't follow you back on Twitter

First of all, let me explain why I don't subscribe to the "it's only fair/polite to follow someone back if they are following you" rule. I feel like everyone has a right to decide what they wish to see in their twitter stream. I do try to read every tweet on the page, and I hate scrolling through tens of tweets to get to something interesting to me. I also don't think it's fair of me to force my tweets on you if you don't want them. Simple as that.

I will probably follow you back if any of these words appear in your bio

  • CFS/ME/Fibro/chronically ill
  • crafter/beader/make jewelry/knit/crochet
  • writer - possibly. Depends on what you write.
  • Artist - see writer

or if there's something really unique, funny, or that strikes a real chord with me in your bio.

I will probably also follow you if 2 or all of the following things occur your page of posts:

  • You post something funny or really interesting that came from your own head.
  • You have a few good quality replies to people - more than just: @soandso thanks! or @whoever ;D
  • You've posted a link that find interesting enough to click on.

Reasons I will definitely not follow you

All you post is links and promos to your business. This includes artists, writers and crafters as well as internet marketers and typical business people. I do like to look through etsy shops, but I can do that on my own, without subscribing to your advert tweets. I follow a lot of etsy/artfire etc. artists, but the difference is, they talk to me. And tweet their thoughts. And sound like real people instead of commercials.

You don't interact. I look through your profile page, and all I see is links and tweets. I don't care how good your quotes are, I'm here to interact. I can find good quotes on the internet.

You are an internet marketer/SEO/work-from-home promoter/public speaker on these things. Ugh. I have issues with money, and I don't want to hear about how much you made this week doing nothing but sitting on your ass. Your page is full of links to your shady internet MLM businesses and retweets from Tony Robbins. I don't know exactly why, but I don't trust you a whit and the picture of you with microphone in hand makes me feel nauseous.

You are 100% geek boy and talk about nothing but tech, apps, platforms, etc. I use the tech I need to, learn about it when I need to, but don't like it for it's own sake. I'm also not into gaming, though it looks fun, and the last code I wrote was in DOS on my grandma's Commodore 64 in 1986. I do like gadgets, but I hear about those from everybody else too. After all, we're all on the internet, using tech. But I like nature too, and making stuff with my hands, and going out for coffee without cellphones. Truth be told, I don't understand 90% of what's written in your bio or your tweets.

Your picture looks like a phone-sex ad. I'm not into phone sex, and only 25% bisexual. Why on earth did you follow me in the first place? I'm not a girly girl and I don't want to discuss your iphone, shopping or getting your nails done.

You think you are a guru. All your tweets are about light and being one and destiny and great rainbows of virtuous mother milky life lessons. Usually, your page is full of quotes and the occasional cryptic response to an honest question. You may have let your hair and beard grow to disgusting lengths, but that does not make you wiser than me. I'm on my own path, I've never had a teacher other than Life, and I don't think I want to.

You are nobody, yet. You have less than a pageful of tweets, and no bio. I don't know anything about you. Come back when you have a visible personality.

You are a hard-core 'must save everybody' Christian. I've heard the good news already, thanks. I'm a Buddhist, I've come to Buddhism through years of contemplation, study and struggle. Nothing you say is going to change my mind, and your bubbly "i love Jesus"-ness just annoys me.

All you do is Retweet everyone else. That makes me want to follow the people you retweet, possibly, but not you.

All you do is post links. If some of your links are interesting, this makes it hard to not follow you, but I like to follow real people who use their own words. If none of your links are interesting to me (see 100% geekboy), then you are uninteresting to me.

Words in your bio that turn me off and make me not want to follow you:

Internet Marketer
"I love to partay!"

you get the picture

Reasons why I might not follow you. If I'm on the fence, this tips me towards "no".

You are under 25. Traditonally the Twitter demographic has been primarily older than this, and I like it that way. Older people have experiences and wisdom to share, are friendlier, less needy, and generally realize that they aren't the center of the universe and don't know everything. Not every young person is so undeveloped or self-absorbed, of course, so youth can be mediated by mature-sounding tweets, creativity and/or a wizened perspective. No offense, I've just got nothing in common with you if you are in highschool and worrying if your size 6 butt looks fat, and want to talk about how that guy from Twilight is sooooooooooo hot (he's totally not). Or you are in university and you just want to "partay!"

You're a dating coach. I do follow one, but his mission is to get guys to see how women think and what they want, in a really honest, genuine way. I like to cheerlead him when he gets it right. I defintely won't follow you if your business to is to teach guys how to be a "player". Game never worked on me, not ONCE, and I think it's a ridiculous way to approach relationships, even one-night relationships.

You're a bot. Like I said, I'm here to interact. I don't follow bots unless they regularly inform me of things that I'm really really interested in. I certainly won't follow bots if they spew something every minute, no matter how good the cause.

You use a bot. There's some apps out there now that allow you, a normal tweeter, to send messages while you are away. If you do this properly I probably won't notice. If you don't, I get a spew of your messages all at once, which fills up my page and is really annoying. Again, I don't care how good your quotes are. I dont' get any benefit if I read ten poignant sayings in a row. I need them spread out so when they occur, they make me stop and think. And if I want to reply, I have to wait until you come online again in 12 hours for you to answer me.

This is just my personal opinion and you are free to agree or disagree. I came up with these as a result of actual twitter use and real decisions about whether or not to follow people. I'm sure there's some I forgot, but this is the basics.

I Made A New Blog

My new blog is called Perpetual Spiral's Invisible Chronic Illness blog. I've reposted the 'official' Blue Ribbon Campaign for ME post there, so folks won't be distracted and disturbed by my warnings, disclaimers and the crazy contents of this blog. I've also written the first of a series of articles on things that help make life easier for those of us with chronic fatigue and pain. I tried to submit it as an article to Associated Content, but there were obvious copyright problems with the pictures. Even though they are linked directly to the originating website and would be nothing but free advertising for the products, it ain't right, so I have to find some way to get free pictures of everything. And getting a free, decent picture of a mobility scooter isn't that easy, so I've found. So, I saved my article at the Associated Content website and will get back to it later. I'm just dead on my feet right now, with writing and editing all day. I just wanted to promote my new blog here and write a post about what I've been up to today. I did consider: catching up on my RSS feeds, and making crafts, but writing won the day. Tomorrow, I hope to do crafts as well as dishes. Cross your fingers.

Saturday, May 02, 2009

Things That Can Make Life Easier for those with ICI

Those of us who suffer from chronic pain and fatigue have difficult lives. We find ourselves dependent on others for help, unable to do a lot or most of what we would like and/or used to do, and can find the sometimes mundane tasks of everyday living exhausting. Our quality of life suffers immensely, our self-esteem and feelings of autonomy and independence dwindle and dissolve. But there are a lot of things available today that can significantly improve our ability to lead productive, independent and fulfilling lives.
In a series of posts, I will be exploring various products that I've acquired over the years (or still wish to acquire) that have significantly made a difference in the quality of my life with chronic fatigue and pain. Some of these are quite simple and inexpensive, some are very expensive, but could possibly be obtained with the help of medical insurance in some countries. If you live with chronic illness, you've probably discovered many of these and others on your own. I welcome suggestions for items to feature in upcoming articles in this series!

A lot of chronic illness sufferers are on disability plans and have extremely limited finances. Being a poor, but crafty person myself, I will often make suggestions on how to make your own ease-of-life item. However, we need to balance our thrift with our activity levels. Taking on too many DIY projects can often add stress to our lives and drain our energy, and that is what these articles are meant to reduce. Prioritizing our purchases and activities is another constant challenge in the lives of those with chronic pain and fatigue.

Dog Harness

Not all of us have pets, but many of us with chronic illness often find ourselves spending a lot of time alone and housebound. Pets can be wonderful companions, and constant comfort in our time of need. I have both a cat and a dog, and they are my best friends! The most recent addition to my quality-of-life collection was this simple dog harness. My dog is not well trained for walking - she's an explorer and pulls constantly. She's a fairly small dog, but not a fragile thing at all. She's dense, and powerful. Her constant pulling really exacerbates my upper back pain. The first time we tried it, she immediately stopped pulling! It's amazing, and I have no idea why it works, but I'm sold. The basic harness, pictured above, costs less than $10. There are fancier ones, with shoulder padding for comfort, and I've also seen ones made of chain. However, any harness with this configuration will work!

Personally speaking, I am not entirely happy with the red harness I have. I've got a pet peeve about people calling my dog a 'he'. For the winter, I knit her a lovely pink dog sweater (which doesn't always prevent the gender assumption). Eventually I hope to either embellish the red harness, or make an entirely new, pink one. I think it could be easily accomplished - with a few metres of nylon woven strap material, some sturdy clasps and a couple of round metal links. Alternatively, I may use some interesting braiding techniques to attach to the links and clasps. Just make sure everything is attached securely. Even though pulling is greatly reduced, I don't put it past my dog to go running to the end of the leash after another dog!

Personal Shopping Cart

Unless you are lucky enough to have a car, mobility service, or can afford taxis, these shopping carts are a necessity. Mine even has a fold-down seat, so I can sit down while waiting for the bus if there are no benches available. It also has rotating wheels that assist in going up stairs and curbs. These are available in so many different configurations, sizes, materials and patterned fabrics, cart 'window' shopping has become a favourite activity of mine! When I first got my cart, it drew a lot of attention, some good - compliments, questions about where I got such a wonderful contraption - some not so good - stares, possible annoyance when it was in the way - but nowadays more and more people (and not just those of us with chronic illness) are discovering how convenient they are. I ordered mine directly from a warehouse in British Columbia after Mary Maxim stopped selling it (saving over half the price, even including shipping to Ontario!). Now they are everywhere, I get much less unwanted attention, and don't feel so odd.

One of my favourite cart-type items is the President's Choice Green Shopping Bag on Wheels.

It doesn't hold a whole lot, it doesn't stand up by itself and it has no seat, but it does have a lot of other great features. The fabric is made from recycled plastic bottles, it is light-weight and can be folded up into and easily carried by a shoulder strap when it is empty, and it is widely available at all Loblaw's Company stores - Zehr's and The Real Canadian Superstore in the city where I live. Any store that carries President's Choice products is likely to have it. They also have a selection of smaller eco-shopping bags made from the same eco-friendly material. Best yet, it's only $15. Small carts like this are great for shopping at markets or quick, small grocery "runs". Metaphorically speaking of course - I don't recommend running when trying to conserve energy.

Mobility Scooter

I don't have one of these, but I'd give my left...well. I would love to have one, and I think it would make a big difference in my life. I was recently talking to a woman with ICI in the U.K. who rents one of these whenever she needs one. In the States it is sometimes possible to get one fully paid for by insurance, Medicare etc. In Canada, Active Lite rents their very portable scooters in the GTA (Greater Toronto area), and leasing is available at Canada Scooters. It's likely that some disability insurance in Canada can help pay or even totally cover the cost of a scooter for certain chronic illnesses and/or chronically ill persons.

Personally speaking, I've always wanted a moped, so my ideal scooter would be this one:

The XB-420M Electric Mobility Scooter. It's more expensive than a regular mobility scooter, but goes faster, and thus can be used as a normal moped would - to do errands further away etc. I'll probably never own a car, so this would be my main vehicle. I love public transportation, but during busy times, even with my cane, people are not likely to offer me a seat. Further, public transit systems, such as the TTC (subway, streetcar and bus system in Toronto) still require a lot of walking, and a scooter/moped allows a person to drive right up to where they need to be.

If you are living with chronic fatigue and pain that limits your mobility and chances are things are not going to let up anytime soon, or ever, you really owe it to yourself to try to get one of these anyway you can. It can allow you to be more active, social and less dependent on family and friends for rides, shopping errands, going for coffee, and other daily activities. I know how much my life would improve right now if I had one. Anyone got an extra 1-2 grand laying around?

Walking Cane

Canes are not just for people with injuries, chronic leg/knee problems, or cranky, vicodin-addicted doctors on TV. Originally I did get mine because I had a nagging, re-curring strained muscle in my calf. But now I use it all the time when I have a lot of walking to do - shopping, sight-seeing, casual strolls, dog walks. It reduces the amount of fatigue accumulated from these activities.

In addition, it makes your chronic illness visible, making it a lot easier to ask for seats on public transportation and full waiting rooms. I've found it creates sympathy from people who would otherwise treat you like a fully able-bodied person, even though you are not. That is not a bad thing, and nothing to be ashamed of. Those of us with invisible chronic illness need all the compassion and help we can get, and using a cane is a small way to get it without having to explain how sick you are.

My walking cane is aluminum, like the one pictured here, but unfortunately a plain brown. Like the shopping carts, there is a wide variety of fancy-looking canes out there! I highly recommend getting a fold-able, adjustable one. You can shove it in your bag or suitcase, fold it up on long bus or car trips so it's not in the way. Aluminum is strong, light, and long-lasting. However, wood canes are traditional and can be very beautiful, so it all depends on what you like.

Note: the cranky, vicodin-addicted doctor on television uses his cane improperly. It should be placed and used on the side opposite the injured leg. In cases of fatigue or pain spread equally over both sides, a cane can be used on either or both sides.


Pillows are one of my favourite things in the universe, and I don't have nearly enough. The best pillows are those that don't get permanently flattened with use. I have a couple that I use to help position myself for sleeping, they are covered in bright, super-soft fleece and have micro-bead filling. It's good to have a variety of different sizes and shapes of pillows, to help in various situations, with different needs and body positions.

I can't sit in straight high-backed chairs at all. I have an expensive back rest, but nothing compares to a custom arrangement of pillows on a bed or lounge. (I have an Ikea chair that folds out into a small bed, and it is usually kept in bed position for napping and reclining.) You can shift and change pillows as needed to support you in whatever position you want or need to be in. For sleep, pillows are essential, for head support and whole body comfort. Long body pillows are wonderful, but I prefer smaller pillows that are easier to maneuver when I shift positions in mid-sleep - I have pain when I sleep on my side, but I literally can't fall asleep on my back, so I put a pillow between my knees and hug one to my chest. This keeps my spine in better alignment, and holds my back up so I'm not slouching, straining my back muscles and crushing my chest. When I am on my back, I put a pillow or two under my knees to relieve lower back pain. Smaller pillows can be placed under the arms in this position for even more comfort. Pillows can also be used on your lap, to prop up books and other items so you don't fatigue your arms holding them up.

In addition to body support, soft, cozy pillows are a great emotional comfort. They are wonderful to hug, and give me the feeling of luxury or emotional support. We all need comfort, and those of us with chronic illness are often deprived and in need of a lot. Pillows are one of the best ways to comfort ourselves emotionally and physically. I can squeeze a pillow as hard as I want in a hug - the same can't be said of my wonderful cuddly but breakable dog!


The ultimate companion to pillows, blankets are fantastic for chronic illness sufferers. My body temperature fluctuates wildly - I'm hot, then I'm cold, then I'm hot again. Having a blanket handy is an absolute necessity. In my opinion, the softer, plusher the material, and the larger the blanket, the better! My favourite blanket is made of the softest fleece, which is very warm. Good quality fleece feels wonderful against the skin. That's important to me because I often have sensitive, achy skin, a symptom akin to that experienced in normally healthy people when they have the flu. Blankets also provide emotional comfort the same way pillows do. I know a few people who's ultimate favourite possession is their electric blanket. It's best to have a number of blankets in different thicknesses. The warmest wool or electric blanket is not always appropriate for a slight chill. Slankets and Snuggies, blankets with sleeves, are a great invention. They free your arms while keeping you warm and covered, helpful for reading, knitting and other sedentary activities. Snuggies are much cheaper than Slankets, but if you are at all crafty, it shouldn't be hard to make one yourself with some nice fleece purchased at a fabric store, like Lens Mill or Fabricland.


I have yet to find anything more useful in dealing with body temperature fluctuations than pashmina scarves and similar large pieces of fabric. Even better than a blanket or sweater, these are portable, fashionable, and easy to put on. Like a lot of chronic disease sufferers, I wear a lot of layers, so I can take on and put off clothes as needed. But when pain and fatigue levels are high, struggling with buttons, zippers and sleeves, or pulling shirts on and off over the head can be troublesome and irritating. Having a pashmina or two on hand instead makes life a lot easier. At home, I wear a t-shirt or tank top, and just throw it over my shoulders. If I become hot, I just shrug it off. Simple as that. I take a couple pashminas wherever I go, and they can also be used as scarves and hoods in colder-than-expected weather. Heck, you could even use one as a bag if you needed to carry a few extra things. Pashminas come in an amazing variety of colours and patterns, and can be purchased for less than $10, especially in large cities like Toronto (they are everywhere downtown, and can be found for as little as $3). True pashminas are made with silk, which is wonderful for sensitive bare skin, but similar large scarves can be made with other materials, even wool for a thicker, warmer feel. Making your own is probably the easiest project you could ever try - find a big enough piece of suitable material, sew seams along each edge. Adding fringe is optional, and fringes can be purchased ready-made at craft and fabric stores.

Coming up:
Pill boxes
Step stools
Pre-cooked, pre-cut, frozen chicken strips
and much more!


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.