Retreat

Lake Superior Beach

Over the long weekend (Victoria Day), my friend J and I went for a retreat an hour and a half south of here.  It's a little motel right on Lake Superior.  It's nice for a nature loving sickie because there is very good access to the beach and a creek.  Also, the place is dog friendly and we can get a suite with a little kitchen.

This time I was too ill for a meal out or much sightseeing, however, I still had a good time.  It was just so nice to have a change of pace....my view from bed involved Lake Superior and a big sky.  I spent some time down on the beach and by the creek.  I'm posting a few photos.

Today I'm quite crashed, although I was fairly crashed most the trip too.  But I'm having trouble walking or even standing today from the weakness and lightheadedness.  For example, I tried to make a cup of tea, but had to sit while doing it.  It's been a bed-bound day for sure.

Saskatoon Berries in Bloom

My folks are coming to visit this weekend for a week and to be honest, I'm not sure if I have it in me to entertain them - even just around home.  I've been so much sicker the last two years, and even socializing can be draining and beyond my abilities at times.  My housemates will hopefully help out a little.

I'm reading "How to be Sick" by Toni Bernhard in an attempt to deal with some of the day to day thoughts and emotions of being sick.  So far I'm really enjoying it.  I think it will be helpful for me in the coping arena.

I saw my specialist via Telehealth in mid-May too.  It was a mixed appointment.  Even after years and years I get my hopes up each time, thinking she may have "something" that will help me feel better.  We discussed anti-viral and immune drugs, but really, there is nothing I haven't tried in that realm that would be covered.  I've taken Famvir (severe nausea), Acyclovir, and Valtrex.  We discussed Imunovir but I would have to pay a lot for it (and have no money) and she hasn't seen any success with it in her patients.

Nearby Creek

I have a heart test coming up, but we didn't get into the OI issues.  She was frustrated that the lab refused to do the test with me lying down, then standing up (echocardiogram).  I also have an abdominal CT scan coming up ordered by the Gastroenterologist (who I refuse to see again).  However, she said to go ahead with it as the results will be sent to my clinic and I could just review them there.

The view from bed

It was so nice to have my NP sitting in on the appointment.  The two best medical allies I have together in one space (via camera). One thing they discussed was next time I get the throat blisters, my NP will swab them and send them away for viral testing (Dr. B gave her a list of tests).  It would be nice to know why I have these 50% of the time even if they aren't treatable.  Also, I am going to be self-administering B12.  I'm going to be shown the procedure on Friday and thereafter will pumping myself full of that particular vitamin for a while to see if it helps at all with energy.

M.E. Awareness Day: May 12th

It's International M.E. (CFS) day today.  A day to raise awareness about the illness.  The day was chosen, because it is Florence Nightengale's Birthday.  She suffered much of her later life with an M.E. like illness.

But I ask, does awareness equal acceptance and respect?  That's the hope right?  I'm feeling a bit jaded and bitter today.  I am not going to wave any flags today.  It's hard enough getting through life being so sick, let alone dealing with the stigma from doctors and anyone I disclose to.  (I don't want to hear again that I must be 'down' rather than ill, need to try harder, or that everyone gets tired...)  For some reason, M.E. is treated more like a character flaw than an illness.  

However, when I think of the young people world wide that may come down now, or in the far flung future with this illness, it breaks my heart.  When will there be funding for research here in Canada?  Or even Dr.s who are willing to treat these poor sick people?

So instead of harping about what hasn't been done, what isn't being done...lets get active.

Please sign this petition to the Canadian Minister of Health (anyone from any country can) and add a message about some REAL person you know with the illness.  We deserve better.

http://www.change.org/petitions/minister-of-health-of-canada-fund-research-for-patients-with-myalgic-encephalomyelitis

Then watch this short talk by Dr. Bested (the specialist I've seen for 8 years) asking the Ontario government to do something.

http://www.youtube.com/watch?v=LHW5A7ztIGQ

And finally, thanks to everyone here who supports both me, and others with this illness. Really, it makes a huge difference.  

I'm so busy: Doing nothing

I was just thinking that when I have almost no energy, and little things (like a bath, getting dressed, making a smoothie) take so much energy, that my days sometimes feel much fuller than they are.

I spend a lot of time resting from little tasks, and I also have scheduled rests throughout the day (11:30am, 2pm, 4pm, 7pm) even though I'm laying down most the time anyways.  Sometimes I delude myself into thinking I'm quite busy!

After 2 of the best days in what seems like a year, I'm back to feeling pretty crap constantly.  Monday night I did go out to a little dog class with my friend J., but by the time I got home, I couldn't swallow my throat was so sore.  I thought I was getting strept.  But after a good night sleep the pain was back down....just M.E.  So I've just been resting up from that....for two days (but it was very fun).

And what the heck, anyways?  How can being tired cause a sore throat and my glands to swell up?  Seriously!  I know that this is a very common symptom, but how, physiologically, can my immune system react so severely to minor activity that my glands swell?  It makes about as much sense as the rest of this illness.

Do you ever wish you could quit?  Like quitting a job (which I only did once), or an activity.  Sometimes I think, "I quit", "I"m done being sick!"....my body seems to have other ideas.

Spring and moments of happiness

My favourite city park...the creek is high today

I have had my best couple days in maybe six months.  After a depressing and infuriating appointment with a Gastroenterologist, I didn't think things could get much worse.  But for the most part, I put it out of my head and moved on.  I will never see him again. Decision made.

Signs of recent rain

It's been a spring-like week in Northern Ontario.  I live on the very edge of the boreal forest - the most extensive forest zone in Canada.  Spring here often seems very short.  It can be snowy and cold, and seemingly the next day, we have moved onto summer.  But the last few days the tulips have bloomed in the front of the house, and some of the bushes are covered in little leaves, just on the verge of bursting open.

Marsh Marigolds almost in bloom

Yesterday, my housemates were working on smashing an old concrete pad in the backyard (next week is free dump week).  I spent up to 2 hours outside, getting my pea patch ready.  Peas are one of my favourite veggies but the birds wreck havoc with my garden, so I built a little plot with bird netting covering it and planted my peas.

For a lot of the time I just sat in the dirt while the dog chewed a stick near by.  But it was so temperate out and pleasant.  And best of all, the fluiness of M.E. has eased up the last few days giving my body (and brain - just coping) a break.  It's been so amazing to feel less sick for a couple days in a row.  I've found myself feeling happy and content!  I'd forgotten.

So today I went to the nearby creek with my camera (and the dog) to enjoy some signs of spring.  I'm posting some photos of the outing.  The dog was exuding joy - swimming, running, and smelling the smells.  I spent quite a lot of time just sitting by the creek which was moving fast after recent rains.  I noticed little signs of spring everywhere.

spontaneous joy

I am so amazed how happy I can feel when I'm not having to deal with constant feelings of fluiness, heaviness, weakness, and fatigue.  So there are good days!!!  Hopefully more to come this summer.

More frustrating news.....

Well for those of you who've been following my gut woes, you know I've been waiting to figure it all out for a while now.  Last week I heard back about my biopsies and today I saw the gastroenterologist.

The worst part was when he started saying stupid things about M.E. or "post viral fatigue" is what he called it.  That got my back up.  I won't go into the details but according to him it's a problem with hormones and chemicals in the brain.  He asked, "Are you depressed?"  Sigh.

The only thing the biopsies picked was very mild chronic gastritis (stomach inflammation), and some esphopogitis (inflammation of the esophagus).  This along with 3 very tiny ulcers, (and GERD class B) does not account for any of the pain I get in my stomach after eating according to this guy?

My problem, I was told, is post-infectious irritable bowel syndrome and a lot of mumbo jumbo about "chemicals in the brain" once again.

I had some small cysts of various sorts and was told I should get another colonoscopy in 18 mo (however, that polyp was not cancerous) - not going to happen.

Despite the fact I told him numerous times I HAVE an M.E. specialist, he said I should see a local infectious disease specialist for the post-viral fatigue.  Even my friend (roommate, cousin) who went with me got frustrated with him.  She said, "Look, she's really sick".  I'd given up by then.  I didn't need to hear any more.

He turned around a bit when he realized I was angry and had "checked out".  He thought I should do an abdominal cat scan just so "we've covered every base".....

My conclusion: I'm never seeing that Dr. again.

And of course I'm still left with fairly constant aching stomach pain for two months without let-up, vomiting (including the last two nights after eating) and some diarrhea (although that seems to be improving).  Everything I eat hurts...it doesn't matter what I eat.

Honestly, I don't want to see another Dr. as long as I live.  They are all so useless in my experience.

I see Dr. B. (my M.E. specialist) again in a couple weeks.  Or maybe not, maybe I'll just sign off all Dr.s for good.  Am I any better/healthier since seeing any of them?

I'm so disappointed it's hard to put into words.  I thought for once I had something "treatable".  That someone could help and I'd feel better....that I'd be able to eat again without pain.