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.