Quick Update: Acts of Heroism

The following blog post is just an update of my travel to see family.  I wrote it for myself (writing is cathartic) as much as anything….probably fairly boring to read.

Christmas was insane to manage while ill, especially with the expectations of my parents (sitting up for meals, on top of visiting with siblings that have major disabilities, and an aunt that's severely hearing impaired).  It is very hard to speak up for my own needs in such a desperately needy, dysfunctional family.

I was fairly ill on Christmas day after travelling the day before, and I had to excuse myself to rest before and after the meal.  This led to a 'lecture' at the meal of how we were all disabled but basically needed to get over it for the sake of others, sigh.

On the other hand, I didn't come here expecting any consideration or accommodation, as I've learnt through experience that this is just the situation.  Taking care of my health needs is completely my responsibility and often at the price of ridicule from others (to be fair, sometimes there are small acknowledgements or accommodations).

Health wise, boxing day was even worse as I 'crashed' from the travel on the 24th. On the other hand, I lay in bed most the day and there were no external expectations of me. My parents in the evening even offered me the couch to lay on as we watched movies.

I was then able to rest some for the 50th wedding anniversary open-house on the 28th.  For me on that day, I was prepared mentally to sacrifice and suffer for the sake of giving my parents the best event possible.  I wore my support hose (which I hate).  During the event, I mostly did the meet and greet at the door during, as well as the 2 hours prior doing set-up (where I tried to sit as much as possible).  I dealt with fairly severe dizziness/lightheadedness throughout.  The noise from the talking at the party was very difficult to bare on top of being so dizzy/light headed.   On the plus side, I wasn't having a day of severe weakness or major immune symptoms.  Small blessings.

I looked down at my hands a couple times during the event, and they were definitely more purple than I'd ever seen them.  No doubt I endured non-stop tachycardia for hours.  I managed to sit down briefly 3 times in the 2 1/2 hours which is more standing than I've done in years.  And thankfully, I only received two "you look fines" and one "after hearing you are so unwell, it's great to see that you're now healthy".  The comments were only mildly bruising to me.  In contrast, my roommate/best friend's family members were all very sweet, knowing through her how tough this would be for me. Three of them made some type of concerned or encouraging comment as to how I was holding up.

On the positive, my parents were so happy to see friends, neighbours and relatives that I am very glad we planned the whole thing despite the sacrifices involved for me.  As I've said many times on here, we get this one life, and for me, it's life in a sick body.  Even sick, and at a price, I still love seeing my parents happy.  I think they felt very loved and celebrated during the event and I know I will be glad we did this for them in the years to come.  I was also glad for the work and effort I put into the slide show, a highlight of the event.  I had scanned old photos and put together a slide show of 80 photos that ran on a loop on their TV.  It was a talking point and provided fodder for conversation during the party.

Then, my only chance to see my niece (9) and nephew (8) were that evening and the next day, so I traveled back (45min) with my brother's family.  I spent the next day mostly in bed at their house, watching you tubes, reading, and playing computer games with my niece and nephew.  Once again, a compromise.  I was sure to enforce a day with my feet up in bed for me, while at the same time 'toughing out' social energy for quality time with my favourite kids, knowing there will be payback.

Tomorrow I travel home, and I am by no means up to it.  I can feel the toll of the week's energy output.  The left side of my face and eye are twitching constantly (in the last couple months a marker of fatigue for me).  I'm feeling weaker and sicker.  I look very pale.

On the other hand, if I postpone travel, it will be longer before I'm at home in my own bed which I am feeling desperate for.  I keep telling myself, only one more 1/2 day where I need to solicit from my body an act of heroism (giggle if you will, but that's what it feels like) in order to get me home where I can recover.  I did put most the heavy items (gifts and some clothing) in a box that will be shipped, rather than try to deal with a heavy suitcase on my own.

Will not versus can not.

Christmas and my parent's 50th anniversary are close.  It is frustrating beyond words to be in a position of being ill, weak, fatigued and have to face the upcoming travel and social/events.  I go back and forth in my mind on whether I should go or not.

It doesn't help that I am up and down health wise lately.  Friday I wasn't too bad and even managed a haircut with someone to drive me.  Today I am by no means strong enough, or well enough for a 4 to 5 hour travel day.  Do I want to go? Well, despite my family's craziness, I really do want to go and help celebrate.  But when being ill is taken into account, I do NOT.  But it's not all about me is it?

Then, of course I have to ask myself the question "is it a matter of will not, don't want to, or can not?".  I have learned being sick for 11 1/2 years, that there are times when I feel pretty awful and can still force myself to muddle my way through things ill, dizzy, weak.  Often I reap the repercussions for days or weeks, but still, I can force myself on the day for the sake of someone I love, or something I love to do.  And that way I build nice memories even if I suffer afterwards for it.

Then there are times when I simply can not.  I'm too dizzy to stand w/o risking fainting, too fluey and hoarse and weak to manage visiting/talking, too much vertigo to be in lit room with multiple stimuli, or emotionally, just not able to tough out all my symptoms in public, on a plane, at a party, especially when the outward appearance indicates I am well and "looking great".

I have done this trip and muddled through many Christmases now. I often have some weeks to recover, but even if it takes much of January, I seem to be able to do it. On the other hand, admittedly, if I am honest, my health seems to have gone down hill very slowly over the last number of years.  Is it as a result of a more and more deconditioned body? worsening POTS?, an aging body, one less able to fight this ongoing immune disease?  I can't blame my activity because I seem to be 'doing' less and less every year.  Less social, less PhD, less travel.

Warning: gross symptom description follows:
Speaking of immune disease,  get this! My sore throat last week ended up being 3  large and one smaller open sore on my left tonsil.  It was (and still is a little) swollen, but I just couldn't figure out why it was so hard to eat, drink, swallow.  Then, after 5 days or so I pulled back the little flap of skin in front of my tonsil to reveal 3 huge open sores taking up most the surface of the tonsil (GROSS, sorry).

I get these sores fairly often, usually just one or two and my NP has seen them.  She says "they look viral" sigh.  There was no point in going in for them, but I really do wonder what causes them? Three of the four are healed now and while I am still having a little residual left ear and throat pain, it's much much improved.

So back to resting for me, in hopes of managing travel in a few days.

And on a positive 'artsy' note, here's a fun project I've undertaken in the cold.  I put some metal bowls of water outside on the porch with a weighted cup in the middle.  I let them freeze, then warmed them enough to remove the cup and bowl and voila! an ice lantern….

The only thing I didn't think about is that I can't really enjoy them as I'm laying inside in bed or on the couch.  Still, I put them on the front porch and smile when I think of people walking by thinking (what the heck are those? Lovely).

Rest Days

I'm been taking some rest days.  Still doing things around home, but no outings.

As with much of North America, winter has come early here.  While southern Ontario is actually getting winter weather in December, we are getting winter weather and then some! We have been in a deep freeze for the best part of two weeks now, maybe three.  Lots of below -20 C temperatures with wind chills as low as -40 C!  Right now, it is snowing heavily out, but because it's a good -20, the snow is very light and swirly.  It's lovely.

 The good news: two weeks from tomorrow I will be back home here post-Christmas travel and post-50th wedding anniversary for my parents.  I am telling myself over and over that I'll make it through and it might even be OK.  I need to keep my expectations of myself low despite all the pressures and stress that are inevitable.  Send good thoughts my way, if you will.

My friend/roommate has been a life-saver helping me -  picking up items for the party and Christmas, mailing some cards and presents, and getting my prescriptions, so that I don't have to crash from outings.

I've also enjoyed some movies the last few days.  I saw "The Help".  I'd read the book and liked it, but had some mixed feelings about it too.  But I thought the movie was really well done.  I also saw "It's a Wonderful Life".  I know most people have seen it a hundred times, but I don't think I'd actually sat down (or lay down in this case) and seen the whole thing.  Perhaps as a young child, but I didn't remember the story.  I really enjoyed it.

On the negative, I have some kind of weird infection or flare or who knows what????  My friend/housemate has a cold and when she started her cold, I had a nasty sore throat (which I usually get with a cold - different than my M.E. sore throat).  But  the nasty sore throat hasn't gone away, it's been 5 days, and it hasn't developed into a cold??

It is pretty painful and one tonsil is swollen, but is it painful enough to be strep? It doesn't seem like it.  I have a low grade fever today too, but that is also common for me with a flare.  So to be honest, I still don't know if this is a flare or something else….every hour I change my mind: "it's just M.E.", "it's strep", "it's viral tonsillitis", "it's a very very slow moving cold".  Place your bets.

If I don't post again before my travel, have a wonderful _________ (insert seasonal holiday which you celebrate).  If you are ill, be kind to yourself and don't let others' expectations of you ruin your holidays.

Calm in the Storm

Overall, I've had a rough month.  I've been especially crashed and unable to do 'outings' without nasty consequences.  That being said, I do have moments, especially in the mornings, where I don't feel terrible.

This illness is like having a monster living inside me.  If I: a) get lucky, and b) don't move too much, sometimes the monster falls asleep briefly.  I can lay in bed or in my lazy boy and close my eyes and 'feel' or imagine that my body isn't sick.  It's like a calm in the storm.

I did manage to finally do a non medical appointment outing.  It was super cold out Saturday morning -20 C with a -30 windchill, and the sun was shining.  Partly due to my days as a winter guide, I love winter.  I could feel the lure of the sun and cold temps.  So I bundled up and drove down the hill to the waterfront.  I spent about 10 mins down there, and I took some photos.

The ice that had formed on the plants was incredible with the light reflecting off and through it.  I was in awe by this amazing picture of beauty, I've never seen anything quite like it before.

Last week, I managed to print just a black and white print I'll share here, also reminiscent of my former days out on trail in winter with sled dogs.  It's not my best print ever, but there is something about it I do like.  With most my less sick moments these days I've been doing art.  Of course lots of it doesn't 'work', but it doesn't seem to stop the images bombarding me as I lay in bed….

I have my holter monitor test this week which means two outings two days in a row, hopefully I'm having a stronger week.  I wear a HR monitor and a cuff which takes my BP every 1/2 hour for 24 hours. Wish me luck.

The Invisible Brick Wall

Imagine for a moment that you lived your life always trying to avoid colliding with an invisible brick wall.  (If you have M.E., I probably don't have to write another word - you 'get' the analogy).

For me, life with M.E. is like life with an invisible brick wall.
Since the wall is invisible, I obviously don't know where it is at any given time.  Experience has given me a good sense of where it might be lurking, but I can never be sure because it moves around.

So any time I do anything at all requiring energy, I risk a painful collision.   I hit this wall and hurt myself, and it can hurt pretty badly - the damage can take days or even weeks to recover from.  I mean it's a brick wall, not an invisible goose-down wall.

I hit the wall hard this week.

Monday, I had my cardiologist appointment where I did a test and then he spent a long time in consult with me.

Then Wednesday, bored and sick, I decided to do an errand to the gluten free bakery…which isn't far. The thing is, I knew where abouts the wall was that day, and I needn't have even left the house to ram my head up against it.  What I'm saying, is I knew there was a risk.  But I went anyways, and since then have been in pretty bad shape.

Another time, I may have done that errand without consequences, but not this time.  I'm on day 5 of the crash, and while I thought I was a bit better yesterday, today I'm much worse again.  I have weakness, shakes, weird facial/eye twitching, sore throat, painful lymph (arms), breathing ache/heaviness and dizziness….even a mild headache.

Personally, December is always a hard month for me, even M.E. aside.  I am affected by the lack of light (I use a full spectrum lamp to help with this) and I am often stressed about Christmas. How do you shop when you: a) have very little money, and b) store outings usually cause crashes (actually, I'm doing pretty well with the online shopping this year).  I also usually travel to see family and then endure a 2-4 week crash in January, not to mention time with people who like to either ignore the fact I'm sick, and/or treat me like it's an emotional/mental illness. Fun times!  This year also includes my parent's 50th wedding anniversary.  Right now I'm too sick to travel, but hopefully in a week or two I will have picked up.

All I can say, is that if I make it through December with only minor damage/consequences, I will be happy.

On a complete aside, I've been doing some reading on POTS, and it's quite an interesting condition.  For one, there is a lot of disparity in the research looking at the M.E./CFS - POTS connection.  I've read studies that say as few as 20% of M.E. patients have it, to as many as 90% have POTS or at least some form of OI (orthostatic intolerance).

The cardiologist I saw suspected in my case, the POTS/OI was triggered by the severe Mono infection I got, the one that also triggered the M.E. since the OI symptoms were there from the get go.  Reading through the symptoms of POTS, it could almost be my soul diagnosis, except it doesn't explain any of my immune issues (fevers, chronic pharyngitis, painful lymph nodes and a propensity to get certain infections easily).  Also, pure POTS patients don't get post exertional malaise (PEM) -  so far according to research, PEM is unique to M.E.

I have been having fun using my blood pressure heart rate monitor when I'm feeling especially poorly.  It doesn't seem to correlate exactly to how poor I'm feeling, however, I can sense when my heart rate is pretty high, just because my hands turn purple from blood pooling, and I get a sense of anxiousness/needing to lay down.  I really don't need to do more than stand up to for my heart rate to jump 50-70 beats higher than when my legs are elevated, and into the tachycardia zone.  Especially as I start the drug, it will be good to be tuned into my HR so I know what 'improved' feels like if the drug actually helps.

How can I be so Sick?

I hate new Dr.s

There are a lot of reasons why:

- most are skeptical or at least ignorant about M.E.
- I don't like tests
- I don't enjoy sharing my illness story, usually opening me up to skepticism and/or ridicule and/or condescension
- I usually crash from the outing
- I have rarely, since becoming ill, actually gained any positive help or treatment from a Dr.

So, because I'd asked my NP some questions about POTS and showed her some of my BP and HR readings, the GP she works with sent me to a cardiologist.

As it turns out, he was a very pleasant fellow.  It still wasn't easy as it meant two outings (one for blood work) and another for an electrocardiogram and consult.  But he was easily the nicest Dr. I've seen outside my nurse practitioner and the M.E. specialist I used to have, Dr. Bested.

He agreed that I have major OI and POTS.  Although he didn't seem to think the POTS was more than my HR trying to circulate blood due to low blood pressure.  For once, I seem to have found a Dr. who actually, after asking a question, listens to my answer/response.  He was not condescending at all.  How is this the exception to the rule?????

He was also willing to try a number of things to help me.

I am going to try a different type of support hose, and a drug.  He said he doesn't see this condition often, only a few times over the years.  He also hasn't had much success with improving the situation for patients.  That was a little disappointing to hear.

The other negative, was that he kept discussing exercise in order to build muscle strength. He explained how this in turn would help my body pump the blood back up to my heart and brain.

I understand the concept and I explained to him about the M.E. and how activity and exercise can make me worse, in fact usually does.  I said "I would love nothing more than to exercise, I really would" (which is true).

I also shared how in the beginning with the M.E., I kept trying to go out and run, and how it just made me much much sicker.

I also explained how my specialist had me chart my activity to understand how activity makes me crash.....and how important it is to maintain that ballance of activity and rest. I told him how crashing is something specific, and doesn't just mean  "getting tired", that, in fact, I get quite ill - sore throats, increased dizziness, fevers, muscle weakness.

He listened.  Did he believe me?  I can't say. Is he going to write a report to my GP indicating exercise would cure me?  I don't think so, but I can't know for sure.

He did say I have significant OI issues.  Just in the office after only 30sec standing my Heart Rate was racing at 150.

I am going to do a 24 hr. holter monitor test which I don't mind....I just didn't want to be subjected to a stress test where I would definitely crash from the activity.  He wants to make sure I don't have any arrhythmia along with the OI issues.

So now I'm terribly crashed.  I feel so horrible, I just want it all to end...this life with the never ending virus/flu.  With a little rest hopefully I cheer up, but I'm so tired of this sickness right now I want to scream.

It's ironic to me sometimes how such a small thing as a Dr. appointment can make me so ill.  And said Dr. would have me make myself even sicker by 'swimming' and 'using a treadmill'. Can you imagine the day when physicians are versed enough in M.E. to know about post exertional malaise (PEM)?

There are scientific studies that  prove when we exercise we get worse/sicker....what will it take until this is common knowledge amongst physicians? Keep dreaming I guess.

So I end with this question....How can I be so sick?
I am not just a little ill, or a little 'off'.

How is it those of us with M.E. are SO sick and it doesn't show up in those Da*&n blood tests they run?

I realise it was the same for MS patients who had "women's hysteria" before they found abnormalities on MRI, or thyroid patients before they found the thyroid test.  But I don't want to wait anymore.  I know there is something extremely wrong in my body, I want to see that blood test or scan that shows it, that's all.

I was listening to Jennifer Brea, who is producing the Canary in a Coal Mine film, talk about how she reacted when those first Drs told her she was fine and merely had 'conversion disorder'. She thought "fine, then I'll exercise", making herself much worse, throwing herself into a relapse.

I've done the same thing more than once.  The first year I was sick, I kept going back to the local clinic to get help.  Every time my blood work looked good, I would think, "it can't be that serious then, I must somehow be exaggerating" and I would throw myself into work and exercise, inducing crash after crash.  I almost had that reaction today, looking through my blood work, but PLEASE let me say I know better by now?  I'm crashing from the appointment, I don't need to make it worse by going out for a walk or outing.

I hate M.E.

Appreciating Small Moments of Beauty

Last year, winter lasted into May.  I remember posting a photo of myself and a little snowman I'd built on May 2nd or 3rd after one of the many spring snowfalls we had.  Well winter is moving in again already and it's November. We've had both rain and snow this week, and are supposed to get snow three more times before the weekend.  I hate rainy socked-in overcast days, but I don't mind snow and I love sunny days with snow on the ground and on the trees.

Ice and slush forming on a local creek

 Speaking of winter, I've been enjoying going to Churchill to watch the polar bears.  "What?", you say, "You aren't well enough for that kind of travel!"  So here's the deal, if you click on this link (during the day time which is short up there), you can watch livecams of wild polar bears.  I've seen two and a raven.  http://explore.org/#!/live-cams/player/polar-bear-cape-churchill-cam

For my friend Teagan, no water is too cold

There is something so cool about seeing them in the wild (I realise you can watch zoo cams, but for me it's not the same).

It has been a fairly relaxing low stress autumn for me, at least compared to last year.  My health hasn't been too bad (this is all relative, I'm still mostly home bound). Also no c. difficile since January!  That alone makes life easier.  

This past week I have been living here just the dog and me.  I've had to do more errands than usual. 

For one, I ran out of dog food.  I had a medical appointment and a blood draw last week.  I also had to pick up a prescription and a few groceries.  

Now to a healthy person, this might not sound like a lot, but for me, it was A LOT.  The groceries were the worst as I ended up waiting in line and it was everything I could do not to sit on the floor and/or cry from weakness and dizziness and the flu waves.  I tried not to berate myself for feeling so ill.  

Having my roommate away makes me realise all the little things that she does that make my life so much more bearable.

Having three days with outings in a row put me into a bad way both physical crash-wise, and then emotional (I felt so sick and terrible my mood plummeted).  I spent the weekend home mostly on the couch or in bed, I ordered in food so I wouldn't have to even cook, and two days solid rest seemed to bring me back to my normal.  My throat is still swollen with the yellow blistered patches I get the more 'viral' I am.  

It opened my eyes to how limited I am.  Sometimes my little world almost feels normal, but a few outings reminded me how difficult it is to function with this level of illness.  A good reality check I guess, although sad.

Having watched the polar bear cam, I started thinking about the 'nature' I see just looking out the window.  For example, this week I saw a squirrel, sparrows, a nuthatch, crows and sea gulls all from the comfort of home.  I think for myself anyways, one of the gifts of chronic illness, is that I've been forced to slow down.  I truly believe this has opened me up to appreciate some of the smaller, but beautiful, aspects of life.  For example, watching the snow swirl on the road this morning from my easy chair in the living room, watching the sun beams of light on the wall as I lay in bed, the sparrows play and fight by the feeder, the rain drip off the awning over the window by my bed.  Sometimes I am in awe of the beauty in this world.

If you are ill, what has being forced to slow down opened up for you?

Thoughts on Life with Chronic Illness

Life is complicated - a complicated mess of relationships, interactions, emotions, thoughts, ideas, actions and reactions.  Sometimes I find I close myself off from the world because it is so overwhelming.  And I don't just mean my mostly forced home-boundness. For the most part that is not a choice. Rather, I mean pulling away from my online support group, or avoiding talking to family or friends on the phone, or not engaging with the local, national or international news, or trying not to think about social and/or political issues.

When I try to make sense of stuff, I get mentally exhausted.  And then I think to myself "what can I do about it anyways?" "Why worry about stuff I have no power over?"  I used to think I was making my small mark in the world by working with teens in the outdoors.  I felt maybe there was at least a small ripple effect of my work both environmentally and socially -helping youth see their potential, develop decision and leadership skills, and perhaps even an attachment to wilder places that could lead to future protection of natural environments.

But these days I wonder if I leave even the slightest positive impact on the world.  I collect provincial disability, drawing resources from a strapped system.  I am not a good daughter or sister or for the most part aunt, I'm often a poor friend.  I find family dynamics too dysfunctional and no longer want to play the role of 'helper' in the family.  I'm too sick, too tired.  Friends: I find the ones I still have hard to connect with.  Our lives are so different.  I feel like such a failure, what do I say when we talk?  I can listen, but I have nothing to offer.

Case in point, an old friend called the other day and we talked for 1/2 hr or so.  On the one hand, I really appreciated the gesture.  He just wanted to touch base, catch up.  But I felt like such a loser:  "What are you doing these days?" he asked......"um.... nothing", what do I say? So often when I tell people that I'm on medical leave there is this silence.  They don't say anything at all.  Obviously they don't know what to say.  Are they thinking "how could she be that sick that she can't do anything?".

And then after phone calls I often crash.  I had two phone calls in one day this week and by the end of the second, my voice was hoarse and weak and I felt so terrible.  When efforts to connect with people come at a price, I wonder, why do I bother?  And yet I don't want to be all alone either.  I don't like being alone all the time. I want connections, other people in my world.

I've been glued to this "Canary in a Coalmine" project http://www.canaryinacoalminefilm.com
Why are they getting so much publicity? Indiewire news, ABC, they have raised over $130, 000.  Jennifer Brea, the filmmaker with M.E. is not stupid.  She's done her homework from everything I've seen.  And she is hopeful, and already making an impact.

She's what you'd call a credible witness and advocate and she admits it herself.  What does she have going for her? She's incredibly articulate, educated and obviously has a support network not to mention that she's also beautiful and in the prime of her life.  She was a PhD student when she fell ill.  And it's only been 3 years.  Can you believe I'm saying "only" to 3 years ill???  I hear people complain when their cold lingers for 2 weeks.  Imagine being that sick and worse for a year, two years, five years, fifteen years!!!

I try to remember how I felt having being sick for 3 years.  Was I still hoping to find the "answer"?  I was pretty sick at 3 and 4 years, those 2 years stand out for me because of how severe I was and also how vulnerable I was (transient, no permanent place to live, no income)....but I was not up for much....could I have taken on a film project?  I do remember it was around then that I realised I probably wouldn't get better.

I will say this: I am feeling grateful to Jennifer for what she is doing, and what it is costing her health to do it.  I think that many many people both present and future may benefit.  What a gift!

Anyways, if at all possible, spread the word about this project.  I would on facebook, although I have so many 'friends' there, and I don't want them all to know I have M.E.  I have never fully "come out" on that venue.  Basically, for the same reasons she's making the film - it's an illness where sufferers are mostly dismissed outright by the general public and medical practitioners.

Back to waxing philosophical, we only get this one life right?  It turns out I get a life where I'm living in a sick body.  I don't think it behooves any of us who are chronically ill to sit around waiting for a cure or a time when we might get better.  Somehow, I have to make the most of this life in a sick body. But how do I do that when so much that might be pleasurable (social, work, hobbies) makes me so much sicker/worse?  That is the ultimate question isn't it?  It is such a fine balance, a tightrope to walk.

As for my activity of late, I've been block printing, although I have not created anything fantastic.  My tamarack bog print (below) had potential after the second layer, but all in all didn't turn out quite like I'd hoped.  Still, it looks decent enough that I may keep one for myself and frame it. It looks better than in the photo, the photo makes it a bit glarey.

It's what's called a reduction print.  I only used one block.  First I printed the yellow, then I carved away everything I wanted yellow.  Then I printed the blue and gold, then carved away everything I wanted blue and gold.  I was left with what shows as the chestnut brown in the final print.

after two layers

after the 3rd and final reduction

I have two specialist appointments in the next 2 weeks.  A new gastroenterologist.  I won't go into the details of why I'm seeing him, but hopefully he's better than the last one.  I'm in real need of a gastro right now for two reasons.

I'm also seeing a cardiologist for the POTS.....I will only stick with him if he agrees to test for the POTS rather than sending me on a bunch of tiring tests.

Hopeful Publicity

http://www.good.is/posts/raising-awareness-about-the-devastating-disease-your-doctor-has-never-heard-of

So this looks like a hopeful project.  It's a film about M.E./CFS.

I actually donated despite the fact that I am pretty broke right now.

I hope they are able to create something that will raise awareness in the general public. Obviously, those who are ill, know the M.E./CFS story all too well.

I feel drawn to one of the film's producers in that she is a PhD student who came down with M.E.  Although I started my PhD AFTER I got M.E. Still, all of us with sudden onset share the story of being stopped in our tracks.

I have had a very up and down (roller coaster) week, physically and emotionally.  The two often go hand in hand.  I've been pushing myself too hard, partly because I've been having some better days.  I've also crashed very hard a couple times - but thankfully it hasn't lasted.  So I am using focused discipline to try to curtail my activity a bit, especially when I'm not feeling so bad.  I do have two outings tomorrow, but besides that I am going to rest and try to pace myself.

I am working on a block print of a tamarack bog that has potential.  If it ends up decent, I'll post a photo of it here.

Also, I am out of books.  If you have a book you've read that you just loved, and think I might like it too, please share your recommendation.

The good and the bad

I'll start with the good:  M.E. energy and fluiness wise I'm doing very well.  Not that I don't still feel ill all the time, but significantly less so than usual.  In fact, I'm feeling better than I have in a long time.  This is good, this is really good.  I'll take it! I mean it's only been a week, if even, but it's something.

Am I resting and storing up my energy....letting it go towards healing and all that - or what my specialist called "putting money in the bank"?  Absolutely not!  I am the worst at resting when I'm doing well.  Actually, I am laying around doing nothing a lot, but I've been more active as well.  Short little walks (3/4 blocks), a few errands, I even went to market with a friend last weekend on a very short outing!

So that's the good.  And I hope I don't wake up feeling terrible tomorrow because I wrote this (I seem to be jinxed that way).

And the bad:  I had an appointment with my NP (Nurse Practitioner) and took my blood pressure heart rate monitor with me and showed her some of the lower ones and the high standing heart rates.  I think I had a 76/44 on there and a heart rate of over 150 just from standing.  I thought maybe we could try something treatment wise.  She was quite keen on the idea (almost more than me, I'm hesitant to try anything drug-wise).

But unfortunately she consulted the GP she works with later that day and phoned to say they would not treat the POTS (which is fine by me, I've managed it for 11 years) but instead send me to a cardiologist!  Oh how exciting, another arrogant specialist who knows nothing about M.E., lucky me.

I really have a phobia of Drs., especially new ones at this point in my illness career.  Although isn't a phobia an irrational fear?  My fear is based on copious negative experiences with Drs., so what is a rational fear called?

I do not want to see a cardiologist for a number of reasons: First, I don't want to do any more testing for something I already know I have.  I have OI and POTS or Postural Orthostatic Tachycardia (which is a type of OI).  I don't want to be signed up for a bunch of tests and exams and go through a whole rigmarole just so he can figure it out.  I've also been 'treated' with medications by various Dr.s who will not acknowledge or accommodate that for some strange reason I am VERY sensitive to them.

I've calmed down a little since the phone call.  I can always play it by ear.  If I get a bad feeling from the start and he is about to send me for 10 different procedures, I will activate my rights.  I don't have to do anything I don't want to I guess.  Sometimes this is hard to remember when I am always in the vulnerable role of sick patient.

Trying to be positive, if I imagine a 'best case' scenario, he's heard of both M.E. and POTS, looks through my BPs and HRs (Heart Rates) and tries something to which I don't have major side effects and said trial treatment lowers my heart rate so I can be upright more, improving my quality of life....can you imagine??  I am laughing writing this it seems so absurd.

I'll let you know how it goes.

I'm going to share my recent print. It actually looks pretty cool from a distance, although it looks too much like a simple painting than a carved print for my liking.  Up close, I don't like it as much. This print was inspired by my time in Minnesota.  I spent a lot of hours laying in the hammock at my friends' in the sunny autumn weather looking up at the ravens flying and playing above.  During that time, the leaves were changing and the aspens were a brilliant gold.  So I combined the two and went for a view 'looking up'.

What to write? Meandering thoughts.

I've been uninspired to write because I haven't had much to say.

So instead I will post a few photos from the fall.  I've been lucky to get out a couple times.  Once to my favourite local creek with the dog.  And it has been a beautiful autumn even for the north where we get few, if any maples.

I recovered from my trip and the never ending smoldering cold virus.  Unfortunately, since the cold, I've had continued axillary lymph node pain and a throat that looks and feels worse than before the cold.  However, my throat never feels great.

I've been told that sore throat is one of the hallmarks of M.E. especially in the beginning.  But then it goes away.  Well I'm waiting for it to "go away" after 11 years.  Unlike the fluiness which peaks around 6pm, the throat pain always peaks at bedtime, then I wake up with only a mildly sore throat.

overlook near the border (Canada and Minnesota)

my favourite city park, it's such a great spot

It's snowing today so autumn feels officially over.

It's strange right now not having any occupation, not even the very part-time PhD work.  When I have a decent hour or two I feel the guilt start to set it.  My brain says "See, you aren't that bad off, there is some kind of work you can do, you are stealing from the government and hard working people".  Then today, I went to the nearby drug store to buy a few items and while standing in line dizzy and fluey I thought to myself, "OK, I guess you are disabled. What, you can't even manage a quick errand!?"

So I'm trying to do little things to keep myself busy.  Recently, I wrote an article for an outdoor educators journal, I'm also working on another blockprint.  I surf online, I read, I rest, I chat online, I do the dishes, I rest, sometimes I cook something...this is not the life of a typical 'high energy' woman in her early 40s, but it's my life.  I'm trying to make the most of it.

While I probably could do a few hours of PhD work a week right now, I'm so happy to not have that pressure.  I hope I'm not getting lazy.

What Keeps you Going?

What keeps you going? Especially when your life is restricted by illness, I think this is an important question to ask.  Someone recently asked it in my online support group, at least they asked "what feeds you"?

This question is about coping.  Despite being ill (or even if we are not ill) we need to find things in our lives that feed us.  If you have M.E., you know that whether or not it is something you LOVE to do, many activities will often have repercussions.  (In fact, I just read ANOTHER research study that shows if people with M.E. are active, 48 hours later, major dysfunctions can be found.)  This is especially frustrating.  For me, 11 1/2 years after becoming ill, I still get angry when I crash from doing some small thing I love (for example visiting on the phone with a friend, doing a little gardening, or art).

Despite the frustrations of a bodily reaction to activity, I believe it is so important to feed ourselves in some way.  So my question, what keeps you going?

Here are some things that feed me:

• Being out in nature, even urban nature.  The other day it was seeing the early morning sun through the branches of an autumn birch tree (see photo), or lying in the hammock and watching the ravens circle and play above.

• Creating art.  (If I'm having a bad day, it's more of a frustration than a feeder)

• Reading through cookbooks and looking at recipes

• Watching my garden grow, checking on my plants throughout the summer

• Chatting online with friends (much less energy than phone conversations)

• Staying in touch with friends esp. if it's low key

• Eating dark chocolate

• Soaking in the Bath

• A good Book

• My favourite shows: Like Big Bang Theory, Grey's Anatomy, Bones, Modern Family, Simpsons

• Sitting by the water, especially lake Superior

• Hanging out with my Dog

What's on your list?

As for my life right now, I am fighting a nasty cold.  It took me three days to distinguish it from M.E. because the symptoms are SO similar: Low grade fever, sore throat, body ache, virally fatigue, chest/breathing ache (all M.E. or cold) but when the congestion set in, I knew it was a cold.  On top of it all, I'm travelling home tomorrow and nervous about the repercussions.  Although, I don't want to postpone because I am ready to be home in my own bed.  I also feel a possible ear infection coming on and may need a prescription.

Fall Colours

I love fall/autumn. And why does the sky look so much bluer in the fall? There must be a reason.

I am still away visiting, although the friends I'm staying with are away. I have their dog and my dog and an empty house.  Thankfully, they have dog walkers set up for all the days I'm here.  Which is an added bonus for my dog who lately only gets one or two walks a week.

I did make it to the wedding ceremony on Saturday, but unfortunately I was very ill that day and it was a herculean effort to go, even for a short stint.  I sat in the back and really enjoyed being there.  I was right by an open window and it was raining.  The fall colours are peaking here and I was watching and listening to the rain and the breeze and  enjoying the colourful leaves through the window.  It was such a happy, positive, occasion, and I feel glad I made it even for a short bit despite feeling so ill.

As soon as it was over, my friend drove me back here. I was dizzy, lightheaded, and hot (maybe a fever?).  I spent the evening laying on the couch and tried not to think about the dinner or reception I was missing.  At least I got to go for 45 min right?  Unfortunately I barely talked to anyone as I was dizzy and anxious to leave, so I only got the one "You look great, you must be feeling well!"

I am quite ill and weak still, and until this morning, that was the only out-of-the-house outing I've managed since I got here almost a week ago.

This morning I got up and felt relatively OK, so I took the dogs to the lake down the hill and threw sticks and balls in the water and took some photos of the fall colours.  (Also, I'm including some from the drive here a week ago).  I wish I were well enough to visit old friends and enjoy this amazing beautiful time of year and weather, but I am so heavy and weak and sick.

On the positive side, I have laid in the hammock out back a lot and tried to enjoy the weather that way, which is better than nothing.  It's much quieter here than at home where my house is on a fairly busy street.

I'm sharing some photos, I hope to get more if I'm able to get out again.

The two things NOT to say to someone with chronic illness.

What does it mean to soldier on?  Soldier on despite daily incapacitating fatigue, weakness, and fluiness/malaise.  Soldier on despite a constant battle (it seems) with some kind of infection.  I am doing my best.  My best isn't always that great.

First, it took 9 days of being crashed from my travel to see family to get a day that wasn't complete S*&^%^T.  I had two OK days, and then I was right back to feeling terrible.  Also, I have been fighting an infection that I decided to call yeast because I was too sick to get myself to a clinic to have someone look at it.  It would have taken a week to get a scheduled appointment, and walk-in clinics typically mean 2 hrs or more sitting up waiting (not to mention getting myself there).  Ironically, I was too sick to get help.  I had a prescription yeast drug on file and thankfully, at least, the drugstore delivers for free!  My infection seems to have cleared some, but is not completely gone.

I had planned to travel again this month to go to a wedding and visit friends.  The travel is less strenuous (no plane travel involved).  Still, I had all but decided to cancel until I had my two OK days.  Now I am feeling it might not be the best idea, but I still might go through with it.  Hopefully I manage OK.  It won't be easy, but I feel as if I've been living mostly in a lonely cave, and it will be nice to connect with old friends and change my space.  It also means seeing the Lake! I can't wait.

If you continue to read this post you will read a rant.....it's what I want to say to all the well meaning people who tell me these two things OFTEN....yes, I have heard them both this week more than once.

THE TWO THINGS I MOST HATE TO HEAR WHEN I RALLY AND MAKE IT OUT IN THE WORLD:

I am also rallying myself for the things I will hear if I make it to this wedding.  My absolute least favourite: "You look great" or  "You look great, you must be doing well (or better)".

First of all, looks can be deceiving people!!! I read a statistic recently that 95% of chronic illnesses are invisible.  This means you cannot tell by looking at someone how they are doing.  If you know they are ill and are interested in how they are doing, ask, but don't tell them "you look great". What the person hears (and this is not just me, I've heard this from many many others with chronic illness) is: "you look great, it can't really be that bad" or "you look great, you must be exaggerating at some level".....so just don't say it!!! Please!!!!  If you are not interested in hearing how they are doing or about their experience with illness, fine, then don't ask.  But when you tell someone who is ill and disabled and may have used every bit of their will power and strength to get out at all, and may be recovering for days or even weeks as punishment for getting out that "you look great" what are they supposed to say?  I find it difficult because if I were to respond to "you look great" with "I've actually just had a horrible 6 month relapse" or "I'm finding it hard to just stand here looking at you my legs are so weak and I am so dizzy" I feel as if I am contradicting the person's outward assessment of me.  Also, to share that I'm not feeling great makes me into a 'complainer', to contradict them when I obviously look so well.....So I've learnt to cringe and say "thank you"....what else can I say?  They obviously aren't really interested in how I am or they'd ask how I am rather than making a statement about my outward appearance. Am I supposed to be happy that despite being ill and disabled, I look fine?

Second worst thing to hear: "Oh I get that too".   If I do open up and share a symptom that I am finding hard to deal with, like lets say dizziness, I very often, 7 times out of 10 get the response "Oh, I get that too".  What do I hear when someone says "I get that too"?  I hear: "I get sore throats all the time too, but I soldier on and work anyways" or "I get dizzy when I stand too, but look at how much I still manage to do, I'm not laying around all day moping".

If I am talking to another person who is generally well and coping with life (lets say they work, socialize, manage a household, have hobbies) I know for a fact "THEY DO NOT GET THAT TOO!!!".  Seriously, do you think you are commiserating with me?  I realize other people who are mostly well also get sick and deal with symptoms....I really do understand this.  And despite the fact I'm always sick, I feel empathy and I know it sucks to be ill  esp. if you have a busy fulfilling life.  But if you had what I had, or were experiencing what I were, you would be disabled.  You are not walking around managing because you are tougher or better than me OK!!!???

Chronic illness is not discriminating.  You can become disabled whether you are a teacher, a surgeon, a store clerk, a mother or father, a man or a woman, a child or an adult, a couch potato or the greatest athlete on earth.  People of weak character and strong character get chronic disabling illnesses!  And while I suspect (actually know) that I am not as mentally tough as some of the people who say these things to me, I know, had they been hit with this disease, they too would be disabled.  They too would be disabled because it's DISABLING....I am not disabled  because I'm weak or can't deal with symptoms (symptoms that evidently you get too).....but because I have an illness with symptoms that are disabling!!!

I don't even mind hearing about a 'well' friends symptoms or recent bought of flu, but not as a response to my sharing.  If I share that something is especially hard or disabling for me and you are obviously not struggling or disabled I highly doubt "you get that too" at least not to the same degree.  "Oh I get that too" is just a dismissal, any way you look at it.


OK, so my rant is over for now.  If you don't have M.E. or another disabling illness, maybe you feel enlightened.  And I don't hate the people who tell me these things either, just to make that clear.  Often, they are some of my favourite people, my family and best friends (which makes them harder to hear).  I know chronic illness is awkward and embarrassing and you don't want to say the wrong thing.  I feel the same, for example, when I hear about a cancer diagnosis.  What do you say that is helpful? Encouraging?  but not degrading.

My one piece of advice if I could throw it out into the world and have everyone hear is, first, if you are truly interested, ask how someone is, don't tell them how they look.  And if you don't want to know, or are uncomfortable, don't ask.  It's not always fun to talk about anyways.  For me at least, when I get out, it's nice to not have to think about myself or my body or my illness.  I like talking about life outside illness and other people and common interests.  I so rarely get out that when I do, I often want an escape from the daily dredge, not to talk about it.

Second, don't judge.  It could have been you who got sick.  That person with chronic illness isn't sick because they ate the wrong things or didn't exercise or were stressed out too much....illness is NOT a character flaw.  Maybe you are not ill, but it's not because you are a better person, it's mostly because you got lucky:  lucky genetics, lucky environment, maybe you dodged an infectious insult, but it's not because you threw salt over your left shoulder everyday or went for a run three times a week or meditated or ate more vegetables.  This is really scary isn't it?  I think this is why so many people subliminally or outwardly blame the sick person for being sick.  If sickie is sick because they did XYZ wrong, then I'm well because I did XYZ right.  It makes me feel in control of uncontrollable events and circumstances.

Oh and just for fun, if I do make it to the wedding I'm going to keep a tally and I'll report here how many times I hear "you look great" or "you look great you must be doing better" at the event.  Sound fun?  And it will make me giggle instead of cringe when I say "oh I do?, thanks".

And despite the fact that I will hear these things if I make it, I'm sure it won't ruin my experience. It will be so great to see old friends and watch two wonderful people tie the knot.

If you are ill, what are your top 2 least favourite things to hear?

Here's a great article about this topic: http://www.diversityinc.com/diversity-and-inclusion/but-you-look-so-good-and-7-other-things-not-to-say-to-a-person-with-a-non-visible-disability/

Fighting the Fight

I'm home from my trip and still 'crashed'.  I'm not at my lowest, but mostly home bound and just feeling terribly sick especially between noon and 6 pm each day.  Then I fall into bed at night ill "viral" and exhausted and sleep hard (or at least it feels like a hard sleep).

On the positive, I feel so happy to not have to visit with anyone, or travel to see anyone, or deal with the eccentricities of family, or have to explain and defend my need for rest and/or accommodation.  I can just be kind to my body, lay in my own bed, eat when I'm hungry etc.

Being crashed is mentally and emotionally tough.  Feeling ill all day, then getting up and doing it all over again is wearing, but for now, I'm "fighting the fight".  Although, to be honest, it doesn't feel like fighting as much as enduring a lot of the time.  I read a great post recently that someone in my online M.E. support group posted and it was very insightful about what it means to accept and live with illness and limitations.

Here is a link if you are interested.
blog.tarabrach.com/2013/02/meeting-our-edge-and-softening.html

And on a sad note, hearing that a fellow patient this week killed himself (the third I've heard of this year) was heartbreaking.  He had been mostly bed bound, and sick for over 25yrs!, but despite this he was a huge advocate for the illness and the founder of May 12 as a day of advocacy and remembrance for M.E. as well as a few other conditions.  I feel no judgement about the suicide; this is a hard life we live.  It makes me want to reach out to others with this illness even more, to help them know that they are not alone.

It also makes me terribly angry that so many people are so very ill and little is done to research the illness.  More money goes to researching hay fever a year than to an illness where 50% of people are too sick to work even part-time, and many are confined to home and even bed.

I've been thankful this week for the support I do receive from friends and cyber friends.  I don't think I would manage without this support.

For example, the Canada postman showed up today with a box of dark chocolate for me!!!! It was such a surprise and made me smile.

On another completely different note.....

A couple years ago an article came out in Science about a study that had found a retro virus (XMRV) in patients with M.E.  After numerous debacles, it was concluded that the science was faulty and the results a mistake.  It was heartbreaking for many that have been sick a long time.  Finally, someone could explain the cause of M.E. which of course meant that treatment possibilities would emerge fairly quickly!

I have avoided getting excited about any kind of research since.

One good thing that came out of the rigmarole is that a very well known "virus hunter" was intrigued when the false XMRV virus results were uncovered and since has been doing research trying find any kind of pathogen or immune dysfunction in M.E. patients.  Here is an article that came out this week about his research, although no results have been officially published yet.  So far, he still believes there might be a pathogen involved due to the immune dysfunctions they have uncovered in people with M.E.:

http://phoenixrising.me/archives/19083?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+aboutmecfs+%28Bringing+the+Heat%3A+An+ME%2FCFS+%28Chronic+Fatigue+Syndrome%29+Blog+From+Phoenix+Rising%29

I spoke too soon

Well it turns out I spoke too soon about the improvement and resilience.  It happens every time.  It doesn't take away from the fact that I had some good days.  But after my travel, while I did alright for 2 days, on the 3rd day I collapsed.  I am feeling so ill and fluey and even headachey that I can barely stand it.  And it's even harder to feel this way while being on a visit because I can't escape indefinitely into bed (although that's what I'm dong for the most part).

As you know, when you have M.E. and are crashed, it's even hard to  talk as talking takes so much energy and makes you feel worse.  I think I am going to need a year to recover.

This morning I got a ride to the senior home where my Aunt is living.  There was a big scare recently when she went into heart failure.  Everyone thought it was the end.  Then she bounced back like a cat with nine lives!  Needless to say, I really really wanted to see her while I was here, so I went and enjoyed an hour visit.  But I felt so ill by the end I wanted to just die.  And that has been the story of my last 4 days.  Feeling awful and very "viral" and weak and exhausted.   On top of it all, frustrated with my body for rebelling so fiercely to the most simple things.

Even small things I want to do (short visits or hellos, sitting up at the the dinner table with my parents) seem like monumental tasks and I am at the edge of tears constantly.  (Probably somewhat just from fatigue).  Cross your fingers this is short lived.

A visit, some art, and decent days!

I have been so much more resilient lately.   Some bad days for sure, but overall better than usual.  Most of the late summers and early falls since I've been ill have been my best, healthiest time of year.

Why?  Well I've pondered and pondered this to ad nauseum.  Now, I just accept and enjoy it.  On the other hand, unlike my first 5 years ill, I don't think it means I'm getting better.  For more than a few years, every autumn I'd think, wow, I'm getting better, this is it!  I would get my hopes up about getting my life back, only to have them dashed to bits when I'd relapse or slide into worsening health again.

I had planned to visit family this summer.  My parents are aging and their health is not great.  On the other hand, I am at the borderline of being able to travel anywhere very far without major repercussions.  But I have done it and managed before.  I try to get down here once a year if I can.   Travelling to my parents involves a 1 1/2 hr. flight followed by an hour drive.  Door to door the trip took 5 hours this time which is a lot for me.  I always get a window seat so I can at least rest against the wall of the plane.  This time, I also 'preboarded' to avoid any extra standing in line.  Honestly, I'm NEVER going back.  Why put myself through standing and being dizzy when I don't have too?

So anyways, I am now down visiting (which at the moment means laying in bed here instead of at home).  So far I'm exhausted and a little fluey, but not much worse than usual which is great.

The week or two before I left I worked on implementing my leave from the PhD for the fall and also plugging away at a piece of moon art.  It took 3 drafts of this art to get something I liked.  It has definite good and bad points to it, but overall I like it.  (Especially the water with the moon's reflection). While I really enjoy having the art to think about and work on when I'm up to it, I'm by no means a gifted artist.

I was born into a family of 5 (I'm number 4), and two of my brothers are extremely gifted artistically.  Partly because of this, I was always intimidated by art growing up.  It's a long story, but in high school I took an art class and had an amazing teacher who helped me appreciate that I could enjoy and feel successful creating art.  I toyed a bit here and there over the years with it, but only really took it up again when I got ill.

I got sick in 2002 and in the fall of 2003 I bought a "learn watercolour painting" book and went through the lessons as I could.  I set up a little table by my bed and any time I felt up to sitting up, I would work though a lesson.

A few years later in 2006, some friends and I got a local artist to give us a clinic on printmaking and that's when I started playing with it as a medium.  It was hard to do in long spurts, I remember both times getting together with friends to print and being brought to tears because I couldn't manage to sit up long enough or do as much as I'd hoped.  I remember carving and my arms feeling super weak and shaky, or standing at the press and feeling dizzy.

These days I'm set up at home so I can work in spurts.  I have a little home press and I do all my design and sketching in bed.

Art has been one of the few gifts of my life with chronic illness.  It's a way for me to create something and feel productive.  It's a distraction from a life that feels 'failed', and a body that's always sick and complaining.  It also allows me to express my love and passion for the wild places where I've traveled....but can rarely visit any longer.

Medical Leave Again

I've decided, if I can, I am taking another medical leave from the PhD....I just need to go through the steps to get it sorted (Dr. signature/letter, advisor and department approval, postpone my grant funding again).  It would probably be easier to just stay officially enrolled, but my conscience isn't dealing with that very well right now. (For one, I've done nothing at all on my PhD stuff for a month).

I am going to take the fall off and just rest, hangout, do art and try to make some progress mentally with this illness.  I don't think 'doing nothing' is a good idea as this always seems to spiral me into depression.  To be honest, I can still work on finalizing my research proposal, just without any pressure of being enrolled and receiving grant funds.

I may be pulling out of my post-trip crash just a little, but it's been tough mentally and emotionally this past week or so trying to cope with feeling so ill and exhausted/weak most the time.

So over the next week or so my 'job' is to try to get this leave of absence sorted/figured out.  Also, maybe to enjoy a little sunshine in the backyard.

I did a small 4x6 print over the last week or so and I wasn't happy so much with the colours.  However, I'm sharing it anyways as I like the composition and feeling of movement portrayed.

Thanks to all who read this blog and support me from afar.  And I hope my fellow "M.E.ers" are doing alright wherever you are on this journey of chronic illness.

A Moment of Being Fed-up

So I pulled off the wonderful camping holiday.  And I did more than I should have, and managed it all OK...and even told myself it meant I could do more in my regular life.  Then I came home and a couple days later crashed (not completely unexpected) and I'm still crashed (knew it was a possibility).

I even have an old symptom back, one that makes me sound crazy (although with googling it, it seems to be something common to lots of illnesses like Parkinson's, MS, Fibro, Lyme Disease) and it's the internal buzzing/tremor.  I had it when I first got mono and it was pretty persistent for years. Then I had periods where it eased off and a for a few years now I only get it occasionally.  Anyways, I've had it the last two days and it drives me nuts!

I've also been feeling terribly fluey and awful and sick.  My armpit lymph nodes are sore and my throat starts hurting earlier in the day.  So of course I'm doing lots of resting and feeling frustrated and fed up with my body.  I tell myself it could be worse (it could) and I will probably get back to normal with rest (which is still sucky, but less so).

And my only thought in all this is how darn tough everyone who suffers this illness is!  I mean really, if you are reading this and have M.E., give yourself a pat on the back just for getting through the day and not blowing your lid from frustration/hopelessness.  We endure so much while "looking great".  We have almost no help from the medical establishment and little real understanding of what's causing all this suffering.  We are often isolated and have to give up so many things other people take for granted.

I managed vacation....a few photos.

Well I 'survived' vacation.  It was wonderful.  And I did WAY WAY more than I usually do.  I had some 'deconditioning' issues, I pulled muscles both in my lower back and both quads (thighs)....but it could have been worse....they are healing up already.  And what did I expect going from mostly home bound/laying down most the day for a year to being active (in sickie terms) for 7 days!

Not that there wasn't an awful lot of laying around, there sure was.  I did my (hopefully annual) laying on various surfaces such as cobble beaches and sand beaches and big granite slabs of rocks.  I saw loons and eagles and sand pipers and heard and saw lots of birds I couldn't identify.

I journaled and read (2 1/2 books) and drew and took photos and lay in the tent an awful lot listening to the waves lap on the beach and rocks and the wind in the trees and a few times the rain patter on the tent (but mostly it was sunny or just cloudy).  I also spent an entire day laying on the beach feeding a small fire and looking out over the expanse of Lake Superior.

And I canoed some which is very ambitious given how ill I am/have been.  And I felt less ill camping this time than I did when I went last year, despite the fact that prior to camping this year I was sicker/iller than last year?  Which is so hard to figure out.  How am I supposed to make sense of this body when the rules are always changing?  Often, going on a 1/2 hour errand can crash me sometimes for two or three days, then how did I manage a week of camping including some canoeing without a major crash (yet)?

Does this mean I should push myself more at home? Try part-time work even? Or does it just mean I had a decent week and got lucky?  Pushing myself in most cases has led to crashes and relapses....although, I'm thinking I need to wait a few more days before believing I really got away with this.  It's not that I don't feel sick and tired, just no worse than before I went.

The OI was pretty bad and I almost passed out more than a few times...which would have been a bit scary all alone.  Although, all the times I have passed out/fainted in the past I have been alone at home anyways.

So I guess 'pulling off' this vacation means I really am (at least for now) back into the mild moderate M.E./CFS zone or even the severe end of mild? having been more severe moderate on the scale for the last couple years....which is great.

Explanation: I consider severe M.E. to be completely bed-bound and often in a darkened room, sometimes in a care facility (when I saw an M.E. specialist for years, this was the situation for her severely affected patients).  I see moderate as disabled, unable to work and anywhere from often bed-bound, to being able to do some short outings now and again.  Mildly affected are those who are still clearly sick, but can work or attend school full or part-time and are able to do most ADL (activities of daily living) which include self care such as bathing, shopping, laundry etc.

As for the vacation, I have a tan and 'look' healthy, and I met some new very nice people and reacquainted with a family I used to know which is huge given how isolated and alone I am much of the time due to being homebound and too sick to socialize.

canoeing down the river

sunset over the lake

a day on the beach by the fire

enjoying a fire

I layed on this rock for a day and 1/2 (beside the cabin)

friend's cabin 

I spent some of the time 'camped' at one of these family's cabins....which was remote and absolutely gorgeous.  I also had rides/drives both ways and I didn't actually have to carry any gear to or from a vehicle.  I did have to set up my tent of course and cook my meals (or eat snacks) and that type of thing.  Also, the few nights I spent 'out' I had to pack and unpack my bags which is why I say I was so much more active than I normally am in a day.

So far my conclusion is that it was a great and nourishing vacation.