Happy Holidays!

I just came across this today, and I teared up watching it. It's Laura Hillenbrand talking about Unbroken and a little about having M.E.

Slightly annoying though, despite the fact that she specifically says that these days the condition is called M.E. or myalgic encephalomyelitis,  in the subtitle cbs calls it "chronic fatigue syndrome".  As soon as that old name is used, many people dismiss the condition as simply 'fatigue' or not a real disease.  Someday, someday, the media will actually use a proper name for the disease!!!

Anyways, it's still a really good interview.

http://www.cbsnews.com/videos/unbroken-author-opens-up-about-her-own-personal-struggle/

Also, while I can in no way compare myself to this amazing writer, I did find some parallels of how she manages to write/work and how I've managed to do my PhD studies and research from home, despite the disease.  Phone interviews, working from bed. And I don't suffer vertigo to the extent she does. Speaking of, I should be working right now, not writing a blog he he.

Friends came up for Christmas from Minnesota which was really nice.  Not only that, I wasn't crashed and felt pretty decent the whole time which hasn't happened at Christmas in ????? many years?!! They were here the night of the 23rd until mid day on the 25th. Perhaps it was partly that I wasn't crashed from having traveled for a change.

I didn't have a bad day until the 27th. We ate good food, like really yummy food, and worked on a jigsaw puzzle and visited.  Also amused ourselves with the antics of their dog who is this enormous black lab-ish dog.

I hope all of you also had a decent Christmas?  This week we have New Years, but I doubt I'll do more than watch TV, probably alone. As far as resolutions, like it or not, I have to try to hammer out this PhD this year.  I just can't stomach continuing much longer with it, I'm just sick of it. Also, I will be out of funding come August.  So cross your fingers that this winter is exceptionally productive for me.

Here is a holiday card for you.  It's a print I worked on for a while and I like the overall effect.  It's supposed to be the perspective of looking up through the trees at the night sky (and aurora).

Holidays and M.E.

I think that the holidays are a hard time for a lot of people for a lot of reasons. While some people have a good time celebrating with friends and family, with so many expectations and societal (and sometimes family) norms around how a holiday should be, if you don't fit in the box, the holidays can enhance feelings of isolation and sadness.

Perhaps you are just alone without family or friends to celebrate with, or with family, but mourning the loss of loved ones. I remember the first couple years after my sister died, Christmas was hard because she had been such and integral and happy part of our celebrating.  We felt he loss more poignantly around Christmas.

When you are ill enough to have to curtail social stuff, travelling, and celebrating, then mix this in with the expectations of family and/or the bombardment of media portraying certain ideas about the holiday, the holidays can be a difficult time.

Toni Bernard wrote an article about coping with isolation (both physical and psychological) dung the holidays, it's quite good: http://www.psychologytoday.com/blog/turning-straw-gold/201111/how-ease-the-pain-isolation-during-the-holidays

My holidays this year are going to be super relaxing.  Presents are all bought (online) and sent, and I will spend some time AT HOME!!! Some of it alone, some with friends, eating, visiting and resting.

While exhausted, I'm not terribly fluey, which is nice. I'm still fighting the end of this nasty cold with a persistent cough. As well, I am quite dizzy/spinny from the cold I think, enough that I can't drive for the time being.

THE DOG: If you are interested in the dog, Teagan does have uveitis in both eyes, and will need to be on meds (steroid eye drops) at least for a while.  She has had iris cysts for a number of years, but recently one of them turned very red, which is what signaled the need for a vet trip.  The hope is that if I treat the uveitis we can avoid glaucoma which in the case of dogs, often results in the removal of an eye ($$$) or very expensive meds.  Cross your fingers for us.

Fighting...

Having a nasty cold with M.E., then barely sleeping for night after night, is no picnic.  I feel today (maybe?) I've turned a corner.  I slept a little at least.  And the cold seems to have eased a bit, although I now have a cough.  I woke last night at 3am and my face was sopping wet from tears, my sinuses were letting loose.

I feel like my body is fighting hard right now, and I'm pretty wiped out.  And the only time I've been out of the house in over a week is a 10 min trip to the bank a few blocks away (I drove).

I'm laying in bed, drinking tea, with the dog beside me on her back, legs splayed and comfortable.  She is great company.  Unfortunately she's been having some eye issues and we have to make another trip to the vet in the next week or so for a test…I may have to beg, borrow and steal (literally) to come up with the funds.

At one point I thought a great charity to start would be a fund for companion pets for the ill.  That way, if you made almost no money due to a disability and/or illness, you wouldn't have to fore go the company of a companion animal.

I don't know how I'd survive so much time alone and ill if it weren't for the company of my dog.  But when my last dog died, I couldn't even afford to have her cremated, and with this dog, it looks like she may have a genetic eye disease meaning more $$$ for her care, money that I don't have.

On to nicer things, I spent a month and a half on a print.  It's a triptych of chickadees in some birch trees with either a snowy hill in the background, or the shoreline of a snowy lake.  After all that work (I'm not done yet either), I got something that's just Okay. I was hoping I'd just love it, and the proofs got me hopeful.  But that's how it goes with art.  And I won't be doing any for at least a few months while I try to tackle my dissertation this winter.

Down for the count….

I know I'm always saying M.E. (for me anyways) is very viral.  Sometimes it takes me a couple days to know if it's just an immune crash or a cold virus.  Well after more than a year and 1/2, I have a full blown cold. It's the same body achy, low energy, sore throat, but the sinus stuff is different with a cold, and the throat was bad enough that it woke me at 2 am the other night and took a long while to get back to sleep (eventually I had to resort to pain killers).

This cold makes me think I have less stamina than I used to.  I used to just get on with things when I had a cold (work, activities, whatever), but I'm feeling like a complete wuss this time round.

On the other hand, were I able to choose between a cold and a crash day, hands down I'd take the cold every time.  The feeling of ick and malaise and weakness is so so so so much worse with a crash than a cold.

On the plus, it seems to be a fast and furious virus and day 3 has already moved into sinuses.  If I can avoid an ear infection and a cough, I'll be happy.  But my productivity has gone way down.

Otherwise, nothing is new.  I've been working on two prints for over a month now, but they are slow going.  I'm also working on PhD almost every day, but haven't managed to do a 10 hour week since October, pathetic.

I'm pretty homebound at present, but not feeling as much cabin fever as I usually do when I'm unable to get out for a long while.

Because I'm not travelling to see family at Christmas this year, I feel like a huge weight has been lifted from my shoulders.  The process of travelling, then dealing with all the family dynamics while ill, can be so overwhelming and depressing.

I do it almost evey Christmas because it has always been the important holiday for my family, and I know it means so much to my parents for me to come…but I can't tell you the sence of relief I have this year knowing I don't have to force this sick body through the whole ordeal, including the usual recovery which often takes more than a month!!!

This year, very unChristmasy, I'm putting myself and my health first. How about you? How will you accomadate yourself to manage the holidays? Or will you? I know it is a very tough time for most who suffer chronic illnesses.

How I Spend My Days...

I want to write a post, but really have nothing new to tell or report.

So I'll share how I spend my days:

9-10 a.m. Wake up, make coffee and feed the dog, go back to bed with coffee, check emails…chill

10:30-12: This is my best time of day, so I work in bed on my PhD stuff.  Right now, listening to my 16 interviews and starting to draw out themes and ideas. I try to work an hour a day, sometimes 2.

12:00: Bathe or shower if I have energy, get dressed...perhaps do the dishes…eat

12:30-1 or 2: If it's a good day, some art sitting up. Very occasionally, an errand. Maybe go to the back yard and fill the bird feeder.

2- 5 p.m.: Back in bed.  My sickest time of day. Read, rest, surf online. If it's a decent day I'll get up for a few minutes here or there to do a little task.

5 p.m.: Do some dinner prep if I'm up for it.

5:30 - 10 p.m.: Move to the couch for TV watching and eating, maybe Skype chat with a friend.

10:00 - 11:00 p.m.: Back in bed, read, fall asleep.

On a bad day, I spend less than half an hour without my feet elevated.  On a good day, maybe 2 hrs, tops 3 hours not laying down or on couch with feet up.

Wow, seeing it listed like this makes me realise how little I do!

Due to side effects, I'm back to a 1/2 dose of Florinef, which does nothing for me.  I've been very tachycardic this week, with major POTS symptoms.  We'll see if my cardiologist is any help when i see him tomorrow.

Three kinds of dizziness and treating OI

Since contracting M.E., I have suffered from three, yes three, types of dizziness.  The first is vertigo, which is when things seem to be moving or spinning.  This one I don't get very often, usually after a cold virus.

The second type I might not even call 'dizziness' except I can't find another word to describe it. Basically, I feel like I am looking at the world through layers of fuzz.  My eyesight is affected, and it is worse when I move my head.  Noise, bright lights, and anything moving, basically most stimuli aggravate it.

While visiting friends over this past weekend, I had such a bad bout of this, at one point l lost 50% vision in one of my eyes…it was similar to the aura you get before a migraine, without the headache.  I am still suffering some even though I'm now home and doing very little, but with much less stimuli the feeling of 'dizziness' is muted.

The third type is lightheadedness. It is clearly (and has been diagnosed as) orthostatic intolerance. This is a feeling of lightheadedness when upright or standing.  It can lead to blackouts (full loss of vision) and then fainting (passing out).

I mostly notice it if I'm standing for more than a moment or two, or I'm bending over then standing up, or getting up from a laying down position.  I notice a swooping feeling.  I have both types of OI - postural orthostatic tachycardia (POTS) which is a heart rate that increases by more than 30 beats a minute when going from incline to standing.  I also have postural hypotension, meaning that my blood pressure drops when I stand up.

So a while ago I said I had some good news re: new treatment.  The treatment is a drug called Florinef. It is a type of synthetic glucocorticoid (a hormone secreted by the adrenal glands) that is supposed to help with the orthostatic intolerance by regulating heart rate and blood pressure.  Well after two weeks on a 1/2 dose, I noticed no change.  Then, after a week on the full dose I had a very amazing improvement of symptoms.

However, seeing as the severity of OI comes and goes, I didn't want to report improvement, in case it was just a coincidental good spell.  Now I'm wondering if it is helping, as I'm still getting symptoms.  It does not seem to help much with the POTS, or standing tachycardia.  My HR is still over 120 if I stand very long, as well, my hands continue to turn purple from blood pooling even if I'm just sitting.

I DO think it is helping with the the hypotension.  While I've had a few minor swooping blackouts the last few days, I'm crashed, so it's not a huge surprise. I am having way way less blackouts over all.  I can bend over and get a scoop of dog food for the dog, for example, or bend down to get something out of a lower cupboard, without a blackout and that is a definite improvement.

I'm not sure whether it's enough improvement that I'll stay on the drug?  But I want to stay on it for a while, while I sort out what is the normal fluctuation of symptoms, and what is actual improvement.

Thoughts on the concept of P.E.M. or crashing…

Has anyone with M.E. ever had a friend or family member "get" or understand P.E.M. (post exertional malaise) or crashing?  I figure it must have happened to someone, I'd love to hear stories.

Over and over and over again I  have the experience of non-M.E. sickies not getting the concept.  For example, if I say I'm crashed or ill, when they reply, they say "oh you're tired?"

I have had M.E. for over 12 years, and everyone close to me in my life has been told by me innumerous times that an M.E. crash is like having the weakness and symptoms of influenza or a bad cold virus.

It's like being extremely weak and ill (sore throat, swollen glands, dizziness and even fevers sometimes).  It is NOT the same as tired or worn out.  Not that tired isn't an element, but it's more akin to the weakness and exhaustion of a severe virus.  But I could be a broken record, and it seems it doesn't make a difference. Some folks will forever think I'm experiencing "tired", like a healthy gets, rather than "sick".

In a similar vein, it seems there is far more encouragement from people in my life to do more, not less.  Imagine if every time you had an outing out of the house, or tried to do a task, 36 hrs later you endured the equivalent of influenza?  I don't think if someone experienced or really listened and understood this, they would encourage me to push.

Case in point, I went through most of July, all of August all of September, and into early October, before I had a day where I didn't feel absolutely horribly ill.  In part, it was the travel I did in August and early Sept. I did it, I toughed it out, I managed.  Maybe that's all people see from the outside.

It was so bad in September, I was so tired and fed up with being ill, and disappointed in how little I could manage, that I wanted my life to end.  I didn't want to live another single day that ill.  Then around mid October, after being home over a month, I had a better day.

I mean ultimately it's up to me.  If I want to down grade the suffering, I have to avoid pushing.  Live like a monk, never do more than a few small tasks a day.  One short outing a week, otherwise homebound.  This way I can avoid the worst crashes. But it would be nice if, a little more often, I felt supported in this from the outside, felt that someone else thinks it's OK for me, or anyone who's chronically ill for that matter, to avoid crashes even if it means we're not "doing", "producing" etc.

Beleive me, it's hard enough to remind myself that I still have some worth outside of my productivity, my activity.  I'm pretty sensitive about how useless I am, (or feel I am).  And I've always been an active "busy' person, so NOT doing is already torture.

Let me throw in here,  that there are the few odd times certain people do urge me to not push.  And I find, for example, if it's my roommate/friend, that it gives me a feeling of support, as well as a reminder.

My mom, on occasion has also mentioned "Don't overdo, you know how bad it can get." At the same time, if I'm visiting them, and I spend most my time in bed, she says, "You don't like spending time with us."

Also, I have a friend reunion coming up and a couple of those friends, knowing how terrible the fall was for me, have been super understanding about me coming only if I'm well enough.

My old specialist was a huge proponent of pacing and resting.  While she didn't have M.E. she was able to see over and over what happened to those who didn't learn to pace.  She told me once if I didn't take better care, I might end up in a nursing home in my 30s…because she'd seen it happen.

Do your friends or family members ever encourage pacing and resting, avoiding P.E.M.?  It must be hard from the outside to see someone you love just laying around all the time, cautious to ever go out and "do things".  As a friend or family member, one must wonder if the person with M.E. isn't just a little lazy or overly cautious, whether it's really that bad and not in some part a "mental" issue.  I mean they even look well.

Another pet peeve I have is when friends start using the word "crash" when talking to me about how "tired" they are in their own lives, once again demonstrating that they think "crash" means really tired, rather than really ill and weak. So now I try now to use P.E.M., or "I'm having an M.E. crash."  I can still feel empathy for others who get downright exhausted living their lives.  It's just that P.E.M. or crashing is a biological immune reaction to activity and not - really tired.

According to research thus far, M.E. is the only illness that shows biological abnormalities in metabolism, heart function, and the immune, and nervous systems 24 and 48 hours after exercise.  This is not the same as being "tired".  Basically when we, people with M.E. are active, 24 hours later our bodies react, releasing immune cytokines similar to those released when someone has a virus.  So P.E.M. or crashing, really is like being sick.

So on a very positive note, I have some GREAT news about my health to report.  However, at this point I'm going to leave this as a teaser.  The treatment seems to have made a big difference (quite drastic in fact) for a week now, but I don't want to find out that the changes are some kind of fluke.  So next week, if the improvement continues, I'll report on the treatment that is responsible.

Some research news

Hi folks,

Sorry I haven't posted for a while.  I'm trying, with my limited energy, to work on my PhD.  I've also started doing a little bit of art/printmaking again, so I don't have much left for writing.

Remember how I was hopeful about the Standford research group?  Well they published a study last week, and despite it's very small size, it got a lot of press….perhaps because it's Standford?

Here's a link to an article about it. Basically, the researcher/s in the Standford group looking at the brain, found some significant abnormalities in the M.E. group vs healthy controls. Not surprising…I think when all's said and done, this illness will turn out to be similar to M.S. - a neuro immune disease.

They mention that these abnormalities, could be the result of an infection or infections…but what's even cooler, is that the level of fatigue/weakness, seemed to correlate with the abnormalities:
http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

Here's another group that is crowd funding in order to do research about M.E.  They have been unable to get money from the government, mostly because M.E. is ridiculously underfunded and still stigmatized.

If you want to give to a good cause, I think this is one.  I gave $25 a while back despite being broke.  Perhaps I should do some kind of fundraiser (with all my vast amounts of energy) haha.
http://www.microbediscovery.org

Here's a proof of the print I've been working on.  It's getting there.  I'm going to run some more, perhaps making the horizon slightly brighter so the sun shows up better.

Today is a really really sick day.  I am achey and fluey, sore throat, headache, weakness, hurts to breathe as if someone scoured my lungs.  I went to the dentist yesterday, so I'm guessing this is a crash.

I'd rather be a healthy person with two cold viruses at the same time and run a 10km than suffer a crash day with M.E.  It's worse, and the sad thing, is I'm not exaggerating. Not even close.

Crawl into your lair!

Halloween approaches.  Who better to represent this holiday than someone like me? I'm like a creature, abdormal…mostly living in my lair.
Ha ha

I've been pushing it a bit lately, and then crashing. Sometimes I'm so ill and weak and utterly fatigued that all I want to do is curl up in a ball and disappear.

On the other hand, I'm still having moments where I function (a little) briefly, so that's nice.

For a week now I've thought I had a cold or flu, then changed my mind, then changed it back.  My throat's been worse, my achiness/fluiness worse, and major sinus issues. All these, however, could just be M.E….it's crazy making.

After 6 months, I was able to find a few moments to work on a print. For fun, I'll post a series of photos showing the process.  The image was created by carving two blocks, inking them with oil ink, then pressing them - whereby the image is transfered onto paper.

Then later, I added the yellow and the canoe with watercolour paints, so this is technically a mixed media piece.  Not the best, but not the worst either. I like the feeling of movement with the piece.

first carving

carving with ink

Paper image with bottom layer of ink

key block (or top layer) inked up

paper showing two block (two colour) image

More colour added to tamaracks, aspen and canoe
with watercolour paints

On another note, I saw a long article, a follow up, from the video I posted last time. So if you want to know about the huge immune project going on at Standford, (and you're up for reading a long article) here you go.  At least it's hopeful making:
http://stanmed.stanford.edu/2014fall/immune-system-disruption.html

The good ones are rare…a hopeful video

My nurse practitioner, the last time I talked to her, made some off-hand comment about the backwards Drs in this town.  For some reason it seems like every specialist and almost every Dr. I've seen here has been disbelieving of M.E., patronizing and chauvinistic.  It's like Medicine back in the 50s or something.

And on top of that, M.E./CFS is completely off their radar, nonexistent, not really an illness.  So getting any kind of help/treatment is almost impossible.  Now that my specialist is gone, I'm on my own.  Which means, basically, that my best course of action is to stay away from Drs., and if I have to see one, to lie about my diagnosis in order to get good care???!!!

Anyways, with the CFS politics in the US right now with the P2P and AHRQ which was supposed to come up with a good overview of current research and treatment of CFS/ME, but excluded most the research that shows abnormalities (for a number of reasons, some legit), and included research that was done on patients with a very broad inclusion criteria (i.e. that included people who were merely fatigued = not all of them had the disease M.E.), and to boot, as far as I can gather, few actual M.E. experts were included in the process:

If you want to read various perspectives read: http://www.cortjohnson.org/blog/2014/10/15/ahrq-report-excluding-progress-exclusionary-factors-missing-studies/
or read this: http://phoenixrising.me/archives/25905

Mostly, I've been trying to stay away from reading about it, because I just find it scary and depressing.

I feel as if there is little hope for the millions of us locked away in our homes, in our sick bodies, some for decades. I was feeling hopeless as far as seeing any possible treatment for future sufferers.

But today, I saw this video:
 http://www.youtube.com/watch?feature=youtu.be&v=pvtbsStLQWk&app=desktop

Which reminded me even if they're rare, there are great doctors, researchers and research centres out there that are getting somewhere…and this one is located at Standford no less.  I wish I wasn't too sick and poor to go there.  Since my version of M.E. has always been viral, I bet they could help me. If I were rich and could teleport.  Imagine even getting a part of my life back???!!!!

Anyways, I thought I'd share it.

On another positive note, I've had the best 2 weeks in ages! I'm still ill and feel like crap, especially in the afternoons, but overall I'm feeling less sick.  I said to my roommate/friend the other day, "I feel like I have a personality again".  Sometimes anyways.  I know I can fake having personality sometimes in public, but the reality is that mostly I just feel like a disease…like a sick body.  I'm so overwhelmed with weakness and malaise that I'm almost not a human, or the human in me is buried.  To have a few moments where I remember there's a person in here, under all these layers of fatigue and illness is a treat.

I don't expect it to last, it never does, but I'm enjoying a few rare moments of less sick.

A Rare Visit

First of all, thanks so much to all of you who commented on my last post.  I really appreciated the kind words of encouragement and empathy.  Comments help me remember that I'm not alone, and/or not the only one trying to navigate life despite this nasty beast of an illness.  Of course the things that bring me down about my life aren't gone, but overall I'm feeling better this week (emotionally).  And also less lonely (see below).

Today, like most days, I am laying in bed feeling very fluy, weak, sick.  My legs are especially shaky and weak when I stand for more than a minute or so.  So I'm forced to rest.  I learned when I had my fall this summer, not to push through with shaky legs.

This past weekend, I had a really wonderful experience.  A friend who also has M.E. came to visit! We have known each other for about 10 years now, we met online, a couple years after each of us got ill.  She recently moved a few hours away from here, and her husband and her came up for the weekend.

It was so amazing to be around someone who I didn't have to explain anything to.  For example, both of us had to lay down at different times, or stop talking/cut a conversation off because even talking can be so draining. Conversely, with friends and family members sometimes, if I cut a phone call short, or leave a conversation, they take offence. They think it has something to do with them personally, or worse, think I'm just over-reacting, that I can't be so drained/sick that I can't talk, I'm just not very tough.

The type of bone crushing sick/fatigue, and lack of stamina that comes with this illness, is something that I don't think I could ever explain fully to someone who hasn't experienced M.E. - maybe if they've had Mono?

Since my visitor and I have been friends for almost a decade (phone calls and emails), are a similar age, have been ill for about the same amount of time, and were both very active busy people in the prime of our lives when cut down by M.E., it was super comfortable to hang out.

Not only that, but our dogs got along well together.
Here they are swimming in the lake.

So if nothing else, that made my month, to have such great, understanding company. We visited, ate good food, watched a movie and TV.

I've had enough!!!

Right now, life is really tough and I'm feeling that I've had enough.

Daily, when I try doing things, I'm faced with my weakness, the many barriers to living, courtesy of this illness.

Examples:

• I try to pull the dead tomato plants out of the planters and don't even have the strength.  So I look at those dead plants every day and it's like they're giving me the finger, that I can't even manage to clean them out (and either must ask to my roommate to do them - feels like grovelling - or sit and look at them indefinitely as they mock me).
• I try to go through some boxes full of old papers, and get shaky just lifting piles of paper!
• I do laundry and carrying the laundry up the stairs has me winded and laying in bed for an hour afterwards.
• Similarly, I change the cover on my duvet and have to stop for breaks from the weakness in my arms, and being winded.
• I manage to move our light aluminum ladder in the yard but my muscles shake and twitch for hours afterwards.
• I run a quick errand to the drug store and get the spins, lightheadedness standing in line. I feel so sick from the ordeal that I sit in the car afterwards in tears.

How do I feel? Angry, frustrated, a failure, useless, helpless, emasculated!!!

I HATE not being able to do things.  And being someone who is fiercely independent, makes it even harder.

This past week I decided to drive myself to a park which is an hour away.  I haven't driven that long since 2010.  I put my tent and sleeping bags in the car so that if I made it to the park, I had a day/night to rest there until I had to drive back.

I've been feeling so trapped and angry and alone lately, that I just wanted to escape, to be able to do something for myself. Daily, there are things I want/need, but just have to let them go, because I'm unable to do them myself.  Or similarly, I try to do them and either manage and pay, or worse, can't manage and end up feeling more useless and indescribably frustrated at how hard seemingly simple tasks are.

To boot, I'm lonely.  I have almost no friends or acquaintances in this town.  I can't remember the last time someone here actually asked me if I'd like to do something with them/spend time together? (early July?).

And have I made any friends in the last five years? No. How do I meet people when I don't work, when every time I attempt something out in the community, the real world, I fail due to my limitations.  (e.g., if I'm at a restaurant I'm lightheaded and so focused on how ill I feel, I'm not very social).  I guess I'm saying I don't blame people for not wanting a friendship (or hell, I'd take a shallow acquaintanceship) when I'm miserable to be around, and rarely make the effort the other way.

But I'm feeling done.  I'm just tired of this life.  I'm beyond frustrated with my inability to do better, and to cope with my limitations.  I'm not managing and I feel alone and useless and incredibly unloved and unlikeable.

After returning from the park, I spent the whole day in bed, weak, achy.  I felt (quite literally) like someone had clubbed me in my sleep.  I had a horrible sore throat and a fever.

You know, the worst of it was the drive, something about driving is super draining.  I did OK sitting out in the park on the most glorious day of the autumn!!!  And since there were critters running around our campsite (mostly skunks and foxes), my dog was up most the night growling and on edge (and keeping me up).

So after maybe 4 hours of sleep, I woke up just before dawn.  The sunrise was amazing and our campsite was on the water, so I took photos and enjoyed the sunrise.  Similarly, the many times I was up in the night enabled me to so see some Aurora (they weren't that great) and the splendour of a sky full of stars.  Since I live in the city, it has been two years since I've really seen a good dark star filled sky.

As well, spending the day just laying around, enjoying the peak of fall colours was a real gift.

But the drive home was awful, and I realized why I haven't attempted a drive this long since 2010.  On the other hand, I wonder how I'll mentally cope much longer knowing I can't drive very far and 'escape'.  It makes me feel even more alone and incapable of having any power over my life.

I just see no use in me being alive.  I live off the government (disability), I make no positive difference (that I can see) to anyone's life.  Obviously I'm depressed.  And while a day in the splendor of fall was a great tonic (I wasn't depressed the whole day), now I'm both sicker and more depressed realizing I have to live through (how long?) of sick hell pay-back alone, with no one who understands, no one to talk to which might 'take the edge off'.

I'm posting some of my photos from my amazing day :)
Do you have a favourite?

Note: The feature you see in some of the sunrise/sunset shots is something known as the 'Sleeping Giant" here.  If you use your imagination you can see someone laying on their back (head, adam's apple, chest and feet).

Long Shadows: Woman and her monster?

I loved the evening light on the rocks

sunset from my campsite

dawn

early morning swamp (drive home)

Things to do

I have a lot of things to do.  Mainly working on my PhD.  However, as I haven't been home for even a week, I've done almost nothing.  It was over ambitious of me to think I could do observations for my research.  I traveled twice to see programs this summer.

(My research is looking at the experiences of wolf educators in North America - surprisingly, there are a lot of programs and centers dedicated to wolf education and conservation).  The bulk of my study is interviews with educators which I conducted from home over the phone in June and July.

Anyways, my observations were a bust for a lot of reasons I won't go into (some of the reasons relate to the fact that I'm quite ill).  I pretty much told my supervisor there is no way I could attempt any more observations. Instead, I'm going to try to get another one or two interviews.  While it all sounds very engrossing (I'm sure), in reality, what I'm doing these days is mostly laying in bed feeling horrible.  Like really ill.

Which makes me wonder if I'm feeling especially bad as a consequence of the travel and/or being away from home?  Then I argue with myself that  I was feeling poorly almost my whole time away as well, I don't think I'm much worse.

Next I start wondering how much to push myself to do stuff (not big stuff, just little around-the-house tasks)?  While miserable and ill, I still managed quite a bit over the last month.  Should I continue to do stuff despite being home and feeling so ill?

I find all I really want to do is lay around…lay in bed or on the couch.  Sure, I have the excuse that I'm sick and weak enough that I have to rest after making my bed or rest my arms after brushing my hair or teeth, but should I allow myself to revert back to complete sloth? The problem with that is how lonely and unfulfilled I feel. Doing little things keeps my mind busy.  It is a constant battle to find a balance - to do as much as I can without making myself sicker/worse.

I made the mistake after an August of feeling horrible, to waste my energy with a medical appointment this week. I saw my Nurse Practitioner (who is very supportive).  But the reality is there is nothing she can do for me except confirm I still have some swollen nodes and lend an ear while I complain about how sick I am.

For some reason I get annoyed by those people who whine and moan in the waiting rooms at the Dr's office (children excluded).  I think to myself, come on, toughen up a little (I know this is pretty unfair considering).  However, I was so exhausted and sick after the drive to my appointment (15 min) that while waiting for my appointment, I was leaning against the wall with my eyes closed, I even rested my head on the magazine shelf! I  considered either leaving or laying on the floor I felt so awful.

In reality, I wouldn't actually lay on the floor of a waiting room, but do you ever (when you are super unwell) inadvertently look for the nearest place to lay down?  Early on, I even lay in a dog bed at a party once.

My NP was very sweet, asking if I'd heard of any new treatments for M.E.  I enquired of her if she could think of any reason why I am so so much sicker in the afternoons, but she didn't have much (we are testing my cortisol levels).  I know I've posted this poll before (on the right), but I thought I would again just to see what people's (with M.E.) sickest time of day is.

And the medication my cardiologist gave me to try for the OI (Orthostatic Intolerance) clearly states NOT to use if you have gastritis or ulcers and I wanted her advice (since my ulcers and/or gastritis is flaring).  I'm going to postpone my upcoming cardiologist appointment until I can heal the ulcers and actually try the med.

I've been watching Master Chef this season and when the one contestant was eliminated this week, as he left he said: "you learn from the past, you live for today, and you dream about the future".  I really liked it for some reason so I thought I'd share.  I try to remind myself all the time, that today is the only day I'll ever get.  While I can learn from the past, it's best not to dwell on, or live in the past.  Similarly, the future can be something to dream about, but since it never arrives, it's best to spend most my time living today (sick or not).

I think it's a quote often credited to Einstein with 'hope for the future' (although Einstein has been credited with a lot of things he never actually said).

A good article

Here's a good article from the New Yorker about one woman's experience with autoimmune illness.  But it completely relates to us M.E. sickies as well.  Just the whole idea that many immune type illnesses don't fit clearly into a category.

http://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me

Chronically Ill

I'm so sick. M.E.'s an unpredictable, unrelenting, life sucking, rat bastard!!!!!

The Contrast

I'm not sure if any of you sickies find the contrast between your life and your (relatively) healthy friends and acquaintances lives, one of the harder things to deal with?

I travelled (again) to do research for my PhD in the town where I used to live and work.  This is a much shorter travel day, involving no planes or unnecessary standing.  Still, even just sitting up that long in a car is hard.  I was holding back tears at the end.  I had a nasty gut infection (AGAIN!!!) the two days before I travelled and was still recovering from it the day I came south.

Anyways, the outdoor school where I used to work, was having their 50 year staff reunion over Labour day.  Unfortunately, I've been horribly crashed almost since I got here.  Still, there were friends (really good friends) attending that I hadn't seen in more than 5 years. So I tried to go to the reunion for a few hours to visit.  Well it was wonderful on the one hand, but after only an hour of sitting up, I felt so horrible I had no choice but leave and lay down.  It was like trying to syphon gas from an empty tank…impossible.

It was so frustrating I can not put it into words.  I tried to not feel overwhelmed by feelings of guilt (why am I so weak? why can't I push through just to sit here and visit?) and embarrassment (I must look like a complete wuss, over-reactor) but mostly deep sadness (I'm not well enough even to sit and visit with some of my best ever friends).  I realize that if I'd come here and completely rested for a full week, I may have been able to attend a little more, and my body may have 'stood up' better.  I spent a lot of the weekend laying in bed wishing that I could be part of things.  Also wondering why I'm still alive?  I feel so ill that I am sometimes surprised it hasn't killed me, this disease.  And if I can't participate in the world, why exist at all?

Now to address the title of this post: the contrast.  Sometimes when I live in my own little bubble, my protected world, I  almost feel that I am a functioning human being.  But when I try to 'do' something out in the world e.g. grocery shop, travel, attend an event, even sit up to visit with friends, I am faced with the stark contrast between my life and the lives of similarly aged acquaintances and friends.  And when I am faced with that contrast, I realize how limited and hollow my life is.

Watching friends and acquaintances, especially those with kids, I realized I probably do perhaps 1% of the activities in a day that these people do.  And the scary thing is I'm not exaggerating.  Don't get me wrong, I'm by no means saying their lives are easy.  It seems from the outside looking in (and from listening) that they are almost like chickens with their heads cut off, racing around after kids, working, doing all sorts.

But at the same time, my life seems so empty in comparison.  I have no children to chase, no job to go to, almost no errands/tasks.  I live such an muted life. And the worst part, is my lack of choice in it all.  I can't do much because my body's ill, not because I don't want to.  I can't overcome this illness by wishful thinking, ignoring it, pushing through (I've tried all three).  I wanted to spend the weekend at the reunion, but I could barely manage an hour or so (and spent the whole next day in bed, wishing it was my last).

And why are these blog posts always so sad? Believe it or not, I'm not always sad/depressed.  But I use this blog as an outlet to vent my feelings of sadness and frustration, usually when I am at my sickest.

Busy Busy August.

Just a short post to update you on my Aug. which has been crazy busy.  Can you believe I still have moderate M.E.? Really you say?  You mean after more than 12 years you haven't suddenly overcome this illness through magic, herbal cleanses, or positive thinking? You mean you still have M.E. everyday?  That can't be right?

Well my friends, it's true.  And despite M.E. I chose to travel this summer to both try to do some research, and to visit my parents.

So first, while I did great on my interviews for my research, my observations were a complete bust:

Travelled too far, program was cancelled, friend's van broke down (which was supposed to allow me to travel with feet up at the least).  Her friends rescued us which meant I had to sit up for a 4 hours drive.  That next day I came down with a serious intestinal infection that had me living in the bathroom.  After 48 hours where I almost had to go to the hospital for dehydration (AGAIN??!!!) I recovered and then traveled again (2 hour car ride) to my parents.  While i did OK here the first few days, I now have either an M.E. crash and/or infection: significant fever, fatigue, very painful breathing, swollen glands, M.E. weakness, and lymphs etc etc.  AND I have to travel again tomorrow (thank goodness to home).

I can't wait to see my puppy, it's the longest I've ever been without her.  Hoping the fever isn't too bad for travel tomorrow as it makes me weaker.

Gardening, a dangerous activity?

In the spring and summer, one of the activities I can still manage to take part in is gardening.  I say "manage", but even so, I have to be careful.  One of the worst triggers for me fainting from OI is (interestingly) squatting then standing.  I once had a 1/2 faint in a book store for example, from squatting to look at the books at the lower shelf.  My most recent faint was pulling a few weeds in the garden.

Anyways, about a week ago, my friend/roommate and I drove to the local gardening centre and I bought some perennials that were on sale for my front gardens.  It's a native plants garden that is migrating into becoming a perennial garden.  I have one garden (the left) that I am trying to maintain as a mostly native plants garden….native to Ontario and Manitoba at least (rather than Europe).

The theory is, native plants are good for the birds and pollinators, as well as being easy as they are conditioned to flourish in the local environmental conditions.  But as they haven't flourished in the right garden, I've decided to throw in some other perennials as well.

The left native plants garden

Later in the day, after the outing, I was so excited to get my new plants planted that I did the classic 'over-do'.  I cleaned out a small section of garden (while sitting), then made a few holes for the new plants (which involved some standing).  Anyways, my legs started to get very weak and shaky, but I decided to ignore it because I hadn't been outside long, and I was frustrated by my lack of strength doing what seemed like a simple task.

Next thing I knew, my leg muscles quite literally gave out, collapsed, and I found myself sitting on the driveway without the strength to stand up???? I was so weak, that every time I attempted to get up my legs just didn't have the strength (would give out).  I sat there for a while then managed to get into the house and my bed.  I realised it was a combo of weakness along with some OI (one of the symptoms of OI can be shakiness/weakness) and perhaps I had not had enough water as it was a hot day.

When I tried to get up and go to the kitchen to get some water, I was still too weak to make it.  Embarrassingly, I had to call my friend/roommate who was at work, and she came home and got some food and water to my bedside.  She also watered my newly planted perennials which I didn't want to loose after they cost me so much to plant (physically, not financially).  After 2 hours rest, I had the strength to get to the couch to watch TV, use the bathroom...48 hrs later, I was back to my 'normal' strength and could walk the equivalent of a 1/4 block.

Lesson learned: when my muscles shake from weakness, they really are weak and I should stop what I'm doing.

Left garden, prairie sunflowers and pearly everlasting

What a strange illness this is.  Some days I can be quite disabled physically, while other days I can maintain a low level of function.  As I sat in bed that day, unable to walk, it scared me to think how quickly I'd become unable to function, even for a short couple hours. What if this were the norm? In that state, I could no longer live relatively self sufficiently.   How would I get food (and I don't mean shopping which most days I can't manage, I mean walking to the fridge or kitchen to actually get some food!) How would I get to the bathroom?  I wouldn't be able to let the dog out!!! What would happen to my closest companion?

Really, I just need to be a little more careful and listen to those signals from my body.

My front gardens are about to come into their peak summer/fall bloom.  I have flowers that bloom in the spring (lupines, flox, Canada anemones, pinks), then there are a bunch of flowers that bloom in the mid summer lasting well into the fall.  I think it will be a year or two more before I get the right garden looking good, but the left one I'm fairly happy with (because I like a wild, untamed look).  I will try to remember to post photos when it is in full bloom.

Right garden with new perennials in foreground

My busiest month of the year is now upon me and I am forcing myself to rest and conserve as much energy as possible in preparation. (Does that really work?  Well at least I won't start crashed/relapsed).

There is travel coming up, as well as a conference here in town where I am presenting (it's short) but really hoping to manage to take in a few sessions as well. I have been looking forward to this for over 9 months.  As I'm mostly too ill to travel, I don't get to attend conferences very often.  The last two I was scheduled to attend, I had to cancel due to health issues.

Super Moon

I love the moon.  It shows up often in my block prints - you've probably noticed.

When it was full on the 12th of July, it was a beautiful night here.  I drove down the road to a near-by park overlook at sat with the dog, hoping to see it rise over the lake.  When it did, I took some photos with my cheap little nikon coolpix camera.  I put it on a night setting and then used the timer as the shutter stayed open too long to hold it still.  It was  a magical night.  I sat there for maybe 45 min just taking it all in.

The photos in NO WAY do the moon that night justice.  It looked so huge.

What have I been doing lately? Suffering crappy sick days and doing interviews.  I am now out of educators to interview.  I've called and emailed every wolf education center I could drum up online and through asking participants if they knew of places.  There are three or four more possible participants that may come through.  I'm on the border of having enough to actually do this study, it's close. But to be honest, the PhD is a month by month thing anyways.

I am out of medical leave and I have one year of funding yet (if it's approved by my disability program).  It would be funny to be a semester away from finishing and have to bail, on the other hand, at some level, we all live day to day.  The best philosophy I've found is just to live each day and not spend too much time worrying about the future….because it never comes.

And for me, it causes anxiety that I don't need. Sometimes (well a good portion of the time) it's everything I can manage just to get through each day.  Most times I can't wait for evening both because the weakness, dizziness and flu symptoms (except throat) ease up, and because I can go to sleep and not feel ill.  To be honest, I've thought of throwing in the towel from time to time due to sickness and loneliness, but that alone would take too much effort.

But then there are moments like watching the moon rise that I try to savour.

What other things do I love or find inspiring?

Here are 10 things I love:

1. Reading a good book, the kind I wish would never end, escaping into some other world.
2. Snuggling with my dog
3. Hanging out with friend/s (if I'm not too ill and it's low key)
4. Swimming in a fresh water lake (hope to do it this summer)
5. Watching the moon rise
6. Being out in nature (rare lately)
7. Growing veggies and flowers
8. A glass of nice red wine
9. Lake Superior
10. Lots of foods: chocolate, avocado, cherries, strawberries, decent fresh corn on the cob etc.

Feeling Rough and Remembering my Sister.

You know, I've  picked up just a little in July.  Still, overall, I'm feeling sick and rough.  I saw my NP this past week and of course had to suffer a day or two crash just from the outing.  Ironic, if you ask me.  I have a medical appointment and am sicker because of it.

We did do blood work because I wanted to see if I'm anemic.  Not only am I sick and tired, but more out of breath and more lightheaded than usual.  I'm not anemic.  In fact, it turns out that the floridix and vitamin C have brought my ferritin levels into the normal range for only the 2nd time since I've been ill!!!

Lots of people don't seem to understand that low ferritin or iron deficiency does not equal anemia.  Anemia means that either your hemoglobin or red blood count is low.  The most common cause (but only one of many) is iron deficiency.  But you can be anemic for reasons besides iron deffiencny and you can have low iron or ferritin stores and not be anemic.  I have had bottomed-out iron or ferritin levels for over 10 years.  Still, I've only tested anemic once and that was last summer.

I'm pretty happy that my ferritin levels are a bit better (still on the low end of normal) but unfortunately it hasn't translated even slightly into more energy.  On the other hand, my NP did call to say my WBC (white blood count) is mildly low again at 3.8.  This is barely considered low, but it does seem to coincide with my sickest times.  Most Drs. wouldn't even bat an eye at this level, but for me, mildly low WBC and occasional neutropenia just seem to be part of the illness.

In other news, I also had my longest interview yet, which in the big scheme of things is good, on the other hand it was completely draining  due to my energy being so low.  I have now conducted 7 interviews by phone or skype for my PhD research and I have two more scheduled next week.  My hope was 12-15 interviews total, and I have 11 people committed, so that is progress.  Despite it being really hard work to do sick, I enjoy talking with people about their work as educators.  It's so nice to do something that takes me out of myself and my own little world.

A lot of the time I try NOT to think about my life with illness.  This is hard because there is little escape.  I have an hour or so in the morning where I don't feel too ill.  If I don't test myself during this time (e.g. keep my feet elevated and stay mostly resting) I can almost pretend or imagine I'm not sick.

Otherwise, it takes a lot of work to put my illness out of my mind because it is so potent and overwhelming.  I stand or sit up and am dizzy, it hurts to breath like there's an infection in my chest (how does one avoid breathing?), every night my throat is so sore, my armpits ache and throb (lymph nodes) and the fatigue and weakness and feeling of icky sicky are just impossible to ignore.

For most of us, at least eventually, life throws hardships and tragedy at us.  Some of us more than others.  I do not believe we choose a good part of our destiny.  Many things happen to us (like illness, loss, trauma) that we have no power over.  On the other hand, we can choose what to do despite all the horrible stuff.  There is a lot I can NOT do because I'm sick, but I can still choose what to spend time thinking about, how to spend my time while I'm laying down, how to treat my friends and family when I do talk with them, etc.

For some reason I've been thinking about my sister in this regard.  I am the 4th child in a family of 5. My oldest sister was born with Downs Syndrome and a weak heart. Then, when she was 2 she had a stroke.  She could walk and talk, but not well, she was partially paralyzed.  She always walked with a limp, couldn't run at all, or even walk very far, and one of her arms was not very functional.  Growing up with her (she lived with us part-time), I witnessed someone living with  a mountain of struggles and disabilities.  And yet, I think she may be one of that happiest, most joyful people I ever met.  Truly. She died at 19 during a hip operation.  Her heart failed.  I think I was 13 (8th grade) at the time.

For some reason lately, when I'm feeling sorry for myself, I think of her.  Not that I never saw her frustrated when she couldn't run or grasp something.  And it's not that I didn't see her sad when people were afraid or awkward around her because of the Downs Syndrome.  It's just that she spent so much of her time, despite all her challenges, happy.  I think about how I might be happier despite living with M.E.? How I might better find joy despite feeling horribly ill?  Ideas?

Wow, that was hard.

June was a really tough month.  While the weather has warmed up which means time sitting/resting out on the patio, I had little resilience and a lot of very sick days.

I've just been plain ill.  Same as any time I'm flared, really annoying viral/immune symptoms predominate  (e.g. my axillary lymph nodes have been sore and achy almost the whole month, my throat has been more sore than usual with more swelling and blisters) and the autonomic stuff has also been worse.  In fact, I managed almost a full faint last week (head rush/black-out enough that I fell, after bending over to pull a weed in the garden).

So I've been spending most my time in bed or on the couch.  I'm trying not to feel too down about it, but it's hard.  I just see how the years are going by while I spend them feeling sick, weak and beyond exhausted….not really living much of a life.  And because social (even telephone calls) are so draining, I'm usually alone and sometimes lonely.  This is hard especially because I used to be a pretty social person.  I was never a person who spent much time alone until I got sick.

Still, I have managed to plug away at small tasks the last couple months.  I hung my art show today.  I had a lot of help getting stuff ready, but it did mean a two hour outing so I am completely shattered again for who knows how long? Hopefully days not weeks.

I also managed to work 16 hrs on my PhD in the month of June.  Pretty pathetic, that's an average of 4 hours a week (less than what most working people do in a day).  On the other hand, it's more progress than nothing at all.  And like it or not, most the healthy people in my life seem to judge human worth based on human doing, not human being (hehe).  I felt the same way before I got ill.

Here's hoping July is a better month health-wise.  It wouldn't take much.

Looks Like a Busy Summer Ahead

First, the lilacs are out and the the air is full of their aroma.  Here's a photo from last year when the crab apple and lilacs bloomed at the same time.  This year, the lilacs came later maybe because it's been a cool June.

I have done three interviews for my research (PhD) recently.  Two on Skype, and one over the phone. For those who read this and have M.E., I'm sure you can understand how this could be exhausting. They really drain me even though I'm not doing much of the talking.

On the other hand, I think often about Laura Hillenbrand who has M.E. and is also mostly home bound.  As well, she suffers from periods of severe vertigo.  And yet she has written two best selling books - "Sea Biscuit" and "Unbroken" and researched them all from bed. While it takes her years and she sacrifices other 'living' to do it, it is pretty amazing.

I think if I were to do a PhD, I couldn't have come up with a much better project (interviews by phone). So really, I am going to (as best I can) 'suck up' the suffering they cause post-interview for the fact that come September, I will have 12-15 interviews recorded that will provide the basis for my study.

I dearly wish I still had some medical leave left, however, because I would preemptively plan to be off this fall.  On top of the research, I have my parents visiting next week, some travel planned this summer and just thinking about everything I am attempting with this sick body is exhausting me.

Speaking of exhausting, I recently had to crawl under my bed to look through some boxes I have stored there.  I realized that there are a lot of boxes in this house that could really use some purging.

Even worse, it brought home how many times a week I attempt to do something seemingly small and run head first into my limitations.  For example, I tried to pull a box out from under the bed and just being on my knees made me super dizzy with a semi black-out standing back up.  I also got the very weak arm problem trying to get out the boxes.  Then, a couple hours later, I got the internal muscle tremor/buzzing that seems to be a post-reaction to anything that requires strength.

So that's the physical post-effort effect, then the mental/emotional one comes sweeping in.  "I am so useless, why can't I manage to do anything, why am I so sick?" and feelings of being overwhelmed "I have so many boxes I should go through, there is so much should do, why can't I manage to do anything useful?".  I know some of these feelings are ones both the healthy and unhealthy get.  I seem to have a motor that's hard to shut down even when there are all kinds of signals that I should, and the repercussions are so bad that sometimes I want to die.

One thing I've been trying to do lately is be kinder to myself.  If I'm having a decent day I put 'crashing' out of my mind and tell myself "it's not so bad, why are you living off social assistance?  You need to tough it out and do more, think about working." Then a day later when I'm horribly fluey and crashed, "why did you do too much, can't you have learned by now that you are sick?" I'm trying to change those to "remember to take it easy even on these 'good days'.  It's ok to enjoy laying in the sun, it's ok to spend the day in bed, to rest and read on a 'good' day".  "You are still an OK person, even sick".  "you are still an OK person, it's not your fault you don't work".  It's really hard to change those patterns, though.

On July 3rd I hang my little art show, and to be honest, I'm feeling a lot of anxiety about that as well.  The internal voice keeps saying "my art is just not good enough to show".  I realize it is a very low-key show in a basement art-store gallery.  It's a chance for the art store's clientele to show - amateurs like me.  But I'm finding the whole thing embarrassing.  I in no way regret doing art, it's one thing that makes me happy, I can manage it in small doses and it distracts me from being ill.  On the other hand, I feel as if the longer I am sick, the more I am plagued by self-doubt.  I realize this is no way to go through life, especially when I have the extra burden of being so ill.

Speaking of art, this is my most recent print.  It involved three carvings and many drafts if you can believe it.  While it is very very simple, I do like the colours and feeling of misty twilight it portrays.  It's called "wolves at night".  Fitting eh?

I just had to do Something!

http://www.microbediscovery.org

Has anyone heard of this?

Governments and drug companies put so little money into M.E./CFS research that it's almost a joke.  Despite this, they love to spend money on coming up with new definitions for the illness every few years and sponsoring workshops without paying attention to any of the research that has been done, or turning to specialists who have the most knowledge about the condition.

Why isn't anyone doing anything about this illness? I was feeling so angry about this today that I donated to the cause above.  This very well known and respected virologist cannot get funding to study M.E./CFS because those who grant funds ignore the importance of researching M.E./CFS.  Instead, he's turned to crowd funding.  This study could be completed and perhaps published within a year if they could get the funds.  And I've been watching the amount raised over the last few months, and feeling really sad that they are not even a 10th of the way there.

I am so broke it's ridiculous, but I donated anyways. I just needed to do something other than stew.  If you are a friend or sufferer and feel you can donate even a dollar, I think it is a very worthy cause.  If every sufferer with M.E. in the U.S. donated one dollar, the study would be funded.

Tough Week

It's been a tough couple weeks.  I may have overdone it two or three weeks ago when the weather first got nice.  I actually managed to "black out" in the garden 5 times in one short session.  I didn't fully pass out, just lost 100% vision briefly with the head rushes. Definitely POTS/OI which comes and goes in severity.

On my Birthday last week, I had the sickest Birthday I can ever remember.  My main event of the day was talking with one of my best friends on the phone, we hadn't connected in a while, so it was a nice birthday treat.

The rest of the day I lay in bed or on the couch praying that the crash would end ASAP.  I did feel well enough to celebrate with a campfire in the backyard the next night - it was low key and perfect….and GF chocolate cake, I love chocolate.  Then I had another horrible horrible day where every bone, muscle, and cell in my body felt poisoned, weak and depleted (M.E. crash).  It has continued like this, a couple OK days, a couple horrible days.  I can't tie it all to overdoing it activity wise just because I've been taking it pretty slow and easy all week.

Two summers ago low ferritin and digestive issues led to mild anemia, so I'm going to get that checked.  The nearest appointment I could get with my NP is a MONTH away, jeez!!! Can you believe that? They suggested a walk-in clinic but there is no way I am going to waste 1/2 day sitting in some room with a bunch of sick people.  It's not worth the crash and exposure for the off-chance I have anemia.  I'm already treating myself for chronic iron deficiency either way.

I've been home bound now 8 days straight, but it's not near as bad as being home bound in the winter, just because I can still sit and lay outdoors and we have had some beautiful days here.  Sunny and warm with a cool breeze, my favourite.  Small, but important blessings.

Uninspired

I try to post a blog entry about once a week.
But lately, I feel at a loss for anything new to say.

M.E. is with me every day, but illness wise, nothing seems to change all that much.  I live with it as best I can, or perhaps live despite it as best I can.

I am not pursuing any avenues to improve my health at present.  This is a good and bad thing. Good, because I'm not setting myself up for any dashed hopes (again), on the other hand, I feel no hope about my health improving without some kind of treatment.  The M.E. has thrived in my system for almost 12 years, and I expect it would take something pretty big to shift things.

I decided to go off the midodrine (POTS med) as the side effects were so annoying, and I couldn't get my dose up very high. The low dose was improving things a little, but not enough to stick with the side effects (weird tingling sensations, goosebumps, shivers, headache).

I have a prescription for Hydrofloricortisone which I will try before I see my cardiologist in October but I wanted a break from drugs for a month or so.

I have been setting up interviews for my PhD research which I will do over the phone or Skype during June and July.  I'm hoping that I can schedule them so that they don't cause my health to decline….I think I can if I'm smart about it.

I did two outings over the last two days and yesterday, my throat was so painful, bloodshot and red I was sure I had a virus.  But no, it was an M.E. immune flare due to overdoing it.  I really seem to do best with only one outing of around an hour a week, or at least 3 days between outings.

On another note, I finally chose a name for my upcoming show of my linoleum block prints "under boreal skies".  While a little cliche, I think the name is fitting.  Showing my prints feels akin to being naked in public.  I am by no means a gifted artist, it is just something I love to do, and even more important, something I can manage to do during my good hours.

Here's my print of the week….although the final block sat around for at least 2 weeks before I finally printed it.  The bird is called a whiskey jack, grey jay, Canada jay.  It was inspired by my outing in the previous post where I sat in the mossy spruce grove and the whiskey jacks came by to check me out.  They are brave and curious birds and have always been a favourite of mine.

I also wanted to share an interesting study I just read (but didn't fully understand) about how those with M.E. and M.S., but not healthy controls have trouble maintaining neuronal structure: http://omicsonline.org/open-access/brain-derived-neurotrophic-factor-is-decreased-in-chronic-fatigue-syndrome-and-multiple-sclerosis-2155-9562-S12-013.pdf

Also, a fellow M.E. sufferer just recently started a blog.  I love her writing but especially her drawings…they are so telling, they hit the nail on the head: http://tangerinebeak.tumblr.com