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