The good, the bad, and the ugliness of chronic illness.

While I would choose having 'moderate' M.E. over severe any day (obviously), moderate or slightly (even temporarily) improved health comes with it's own set of headaches and frustrations - mostly social.

For example, I've been doing fairly decently lately, I've also found a type of work I can do successfully on a part-time from home (bed) basis. This means I am out in the world a bit more than I have been for a decade (for an hour or two a couple times a week).  But being ill and disabled while "looking great" comes with a lot of social frustrations.

Honestly, people just don't get that I'm very very sick. I understand that initially this is not their fault given I have two 'invisible' illnesses. But if I tell them over and over (even some friends and family) it doesn't seem to make a bit of difference; not only that, I feel as if I come across as a whiner/exaggerator.  And since I don't look on death's door they assume (or their behaviour suggests they assume) I am doing fine and coping.  Either that or they don't care.

I feel so alone and misunderstood and unsupported lately.  I think being forced into isolation by illness makes my infrequent human interactions carry all the more weight when they probably shouldn't. And to be quite honest, a couple things have happened this year that have brought me to realise that I rank lower in importance in people's lives than I thought. I've accepted it is the way it is.

I remember when I was first ill and still doing my job, I had a similar realization. At the time I felt so important to the organization I worked for. But then when I just couldn't manage due to illness, I was quickly replaced by someone else and realized I really wasn't all that essential in the big scheme of things.

I'm aware that this is all very self-indulgent. Obviously people have their own lives, own issues, heartaches, challenges to live and work though. I don't expect the world to revolve around me.  And to be fair, how much of my limited time and energy goes to caring about the people I do have in my life (outside my dad) - putting energy into their issues and concerns? Showing I care? Very little.

It's just I'm lonely and alone much of the time. Lately I vacillate between anger towards everyone I come in contact with and everything they do, to utter loneliness, grief, and borderline despair. I think some of this is due to the fact that while I'm doing more lately, I'm doing it while a raging war is going on in my body (flue ache, tachycardia, dizziness and lightheadedness, sore throat, internal tremors, weakness and agonizing fatigue). And this war is never seen, and rarely, if ever acknowledged (or for that matter believed).

Despite the loneliness, when I'm with people lately (e.g. my dog training friends) I find them difficult to be around for a number of reasons - they seem insensitive, uncaring, uninterested, petty, and honestly annoying.

A friend in an online support group I'm part of commented this week that at this point (given the length of illness and accessibility of information) it's not our job to educate people about our illnesses and the impacts of disability.  I think this is especially true for friends and family. If they don't care enough or haven't taken the time at this point (after 16 years) to listen, research and/or read a little and educate themselves about what we suffer, that's not our job.

It's not that I mind thoughtful caring questions, I don't - it's just after 16 years I don't feel that it's fair I have to explain (over and over) or justify that I can 'look good' and still be sick, or that I can manage something one day and then crash horribly the next, or that I'm more than just really tired!

I'm crashed right now so especially prone to a pity party. I had a friend come visit over Labour day and we went camping for a night!!! It was awesome and amazing and I'm glad I went. On the other hand, one night is not really doable for me.  It means two travel days in a row (an hour and 1/2 car ride) and packing and unpacking two days in a row (even with help this is crash making for me).

That said, it was an amazing time and I'm glad we went. I loved sitting on a rock looking at a beautiful lake, laying in the grass by a fire at night and seeing the Milky Way for the first time in a year, dipping/swimming in the clear cool water as the late summer sun beat down on us, and visiting with my amazing awesome friend.

However, I'm not sure I would do a 'one' night camping again.  It would have to be a 2 nights at the least so I had a full day to just lay and rest and chill.  That said, I took some amazing sunrise photos (many from my sleeping bag out the tent door). This lake (it's now my secret local spot - I've been twice) is just magical. I think the sky and water changed about 100 times int the 24 hours we were there.

This is a great example of the juxtaposition of this condition. On the one hand I am so grateful that I can do something like this despite illness, and I did manage to go. On the other hand, doing something like this comes at such a horrible price, and yet the cost is unseen, invisible, and unacknowledged. It leaves me feeling completely alone. Do you ever feel this way?

Enjoy the shots.

So Many Questions

I have so many questions, so many things I'd like to know about this disease before my life is over.

The science is so slow, so underfunded and/or non existent that sometimes I wonder if I'll ever know what's really caused me to be so ill for so many years.

I remember the first few years when I switched from seeking answers from traditional medicine and started looking for answers from naturalpathic and wholistic practitioners. A couple years later I'd tried a plethora of supplements and vitamins and techniques and yet I remained just as sick. Not only that, but I was left feeling like I must have done something wrong given all this stuff wasn't working.

These days I try very little at all - very few treatments that is.  What I do, is attempt to eek out a life as best I can despite the illness. And I am pretty sure I'm not quite as sick as I was the first 10 years. Having been ill 16 years either that's because I just don't try some of the things I did the first few years (exercise regimes, full time or physical work) and so I'm crashed less, or perhaps there's been subtle improvement.

The thing is, I really think if there were treatments out there that had significant impacts, I'd know about them. I keep up to date with the little bits of science that are happening.  Occasionally you hear rumours of something 'working' and then it doesn't work for everyone, or the impacts are short-lived, or the treatment has side effects, or I wouldn't have access to it anyways.

So while I've given up hope that some panacea will be discovered and available in the next 10 years, what I'd really like to know is what is causing this illness? What in my body isn't working? Is it some kind of low grade insidious virus? I mean when I first got ill they said it was a virus than after a year they said it couldn't still be mono despite that fact that my symptoms hadn't changed much (fever, fatigue, PEM, lymph nodes, sore throat, dizziness, weakness, twitches and tremors) - there were more of them and I was even sicker.

I've had a decent summer overall health wise, but the last week has been pretty bad. Yesterday after a lot of rest the day before, I had a good day.  I did way way too much, trying to fit in some summer stuff that I haven't been able to do all summer because I've been working (teaching online). For one, there's a little piece of wall in my entry way that had flooring on it. It was so ugly. I pulled the flooring off about 6 mo ago and was left with painted wood, but it had glue patches all over it.  Every time I've tried to scrape the glue my arms have felt like silly putty and I've had to quit.

Yesterday, after months, I took another whack at it. I got a fair bit of glue off and pushed til my arms weren't even strong enough to hold up the scraper. And I mean literally, I couldn't even lift my arms.  Then the violent muscle twitching and internal tremor/buzzing started - this lasted hours. Today I'm sore and quite weak. I wish people who were acquainted with me could spend one day in this whacked out failed body and actually experience all these symptoms and effects of effort, even minor effort.

Obviously there's some neurological and/or metabolic failure going on. And yet despite my tiny limited suffering life "I look so good". When I'm collapsed in bed on the couch, when I can barely stand for the weakness in my legs and lightheadedness,  or when I fail to attend one of the few things I'm part of, it's no wonder people think I'm psychologically weak or an exaggerator.

I'll Be Back

Until this week I was managing pretty well.  My course ended yesterday (now lots and lots of marking to do).  Unfortunately after a pretty decent summer health-wise, I seem to be quite sick this week - probably a crash from over doing so often (and thinking I was getting away with it). I'm very weak, dizzy and viral.

Once things slow down in a week or so I hope to come on here and write a more thorough update.

For now, here's a photo from this summer of my favourite canine.  I hope my readers are all AWAP.

Working with M.E.

I have one or two (if you count POTS) disabling diseases and yet I'm trying to work.  This intense condensed course I'm teaching at present is just kicking my butt. Don't get me wrong, I am really enjoying teaching, it's just hour after hour I sit propped up in bed or in my lazy boy working and I'm still not keeping up. My health status isn't great (I'm crashed) and yet I have essentially 4 more weeks to go at this pace.  And then a course in the fall, and I've been offered a winter course! although those are over 12 weeks not 6.

How do I negotiate this working life while so ill? I just don't have an answer to that. I sit here with a low grade fever, painful lymphs, sore throat and flu/sick ache and wonder why I'm doing this to myself? Honestly, I can't see anyone who isn't ill with M.E. grasping the ludicrous nature of what I'm doing.  There is no other known illness out there where activity (whether it's one that's positive or enjoyable or not) makes you directly and literally sicker.  (And for naysayers this finding is supported by research).

And yet if you asked me to quit I'd say no. I'm willing to suffer some level of consequences in order to participate in this work.  In fact, there is almost no job in the world that I could come up with that would be more ideal.  I get to work (at least with the 12 week courses) somewhat flexibly from home in bed. That said, if I get much worse I'll have no choice, but for now, I'm sticking with this extremely limited sick working life while I hold on by a thread.

I'm a weird duck.  If a (relatively) healthy friend encouraged me to push through and continue to work I'd be hurt.  It would feel like they didn't care that I was choosing to jump off a 6 foot diving board into 6 inches of water over and over and over. Or similarly they might as well encourage me to run head first into a brick wall over and over. "But you're getting satisfaction out of it right?"  The problem with M.E. is you can't see metabolic disfunction, or immune symptoms, or icky flu breathing ache, or lightheadedness and blackouts from the outside. All of the damage and suffering from pushing is invisible (although my roommate sees it to a degree). I do know how lucky I am to even have friends left, let alone supportive ones.

Luckily, I've still had some short outings here and there over the last month.  Not too many weeks ago my dad and I took the dog to a local dock and took photos of her jumping.  I love watching her swim (I also love swimming). Then, there is a local overlook with a memorial to Terry Fox (a Canadian hero) nearby.  One afternoon my dad and I drove over just to look at the view and have an outing.

Really Tough Week

I've been doing too much, especially driving.  I did some driving last weekend in order to attend a dog event. Then my dad had two appointments this week.  Yesterday I was so sick (M.E. sick) that I was ready for it to end.  I just wanted to die.  Really, how much more suffering must I go through in this life?  It's like everything I do is punished, whether that's stuff I really want to do, or just life errands stuff.

I woke up today not quite as weak but still feeling horrible already (sometimes I get a window in the morning).  Since the beginning of M.E., when I'm sick or crashed it feels like there's an infection somewhere deep in my chest, I take a deep breath and it hurts/aches.  Every cell in my body is tapped out and poisoned. It's really similar to having influenza (the weakness and icky part) but M.E. (as I experience it) has a flavour all of it's own. I don't know how much more of this I can take?

For the next 6 months I will be teaching again and today that feels like the worst decision in the world.  On the other hand, in some ways I am very much looking forward to it (hopefully I can keep my brain healthy enough to manage it).

I work completely from bed for a few hours a day teaching online courses (this time a 6 week summer intensive and a fall 12 week).  The summer intensive is all ready to go and will be a whirlwind no doubt.  I know in the past it's occasionally meant some 6 hour days and in order to spread out my hours, usually no days off for the whole period (really 8 weeks work with the marking). The fall course is right up my alley (it's in my field of study) but I've only taught it one time and I don't see where/when I will do anything to adapt and update it given I'm working in the summer.

Right now I have a headache and am dizzy/light headed so feeling thankful I have most the week still to recover from this crash/relapse. Illness is really dragging me down lately, I feel so isolated from the rest of the world, I feel so alone trying to manage life while feeling so horrid. Yesterday I almost collapsed twice my legs were so weak. If I had, I would have been alone.

A Poem

So yesterday June 16th was my 16th sickaversary.  While I know rationally that I was once well (or lived in a relatively healthy body),  I can't really remember what it's like to feel well, not to feel sick.

Since I don't have much to say these days, here's a poem we used to use as a reading in wilderness courses. It popped into my head recently:

The Invitation

- Oriah Mountain Dreamer

It doesn't interest me what you do for a living. I want to know what you ache for and if you dare to dream of meeting your heart's longing.

It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn't interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrow, if you have been opened by life's betrayals or have become shrivelled and closed from fear of further pain.  I want to know if you can sit with pain, mine or your own, without moving to hide it, or fade it, or fix it.

I want to know if you can be with joy, mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, be realistic, remember the limitations of being human.

It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself. If you can bear the accusation of betrayal and not betray your own soul. If you can be faithless and therefore trustworthy.

I want to know if you can see Beauty even when it is not pretty every day. And if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand at the edge of the lake and shout to the silver of the full moon, 'Yes.'

It doesn't interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone and do what needs to be done to feed the children.

It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the centre of the fire with me and not shrink back.

It doesn't interest me where or what or with whom you have studied. I want to know what sustains you from the inside when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.