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.