Books I read in 2011

My favourite 5 books of the year are starred, however, none of them absolutely wowed me.

- Cutting for Stone was probably the best novel I read

- If you like fantasy, I really enjoyed the Game of Thrones series

- If you like youth fiction - Henery Neff's series is quite well done, especially if you get past the first book

If you just need a good laugh, Letters From a Nut by Ted Nancy had me howling.

What was your favourite book of the year?

*1. The Calligrapher's Daughter - Eugenia Kim

*2. The Story of Edgar Sawtelle - David Wroblewski

*3. Cutting for Stone - Abraham Verghese

4. Ape House - Sara Greun

5. The Raven's Gift - Don Rearden

6. A Long Way Gone: Memoirs of a boy soldier - Ishmael Baeh

7. City of Bones - Cassandra Clare

8. The Wise Man's Fear - Patrick Rothfus

9 The Little Giant of Aberdeen County - Tiffany Baker

10. The Art of Racing in the Rain - Garth Stein

11. Nostradamus - Douglas Coupland

12. Letters from a Nut - Ted Nancy

13. Half Broke Horses - Jeannette Wells

*14. The Help - Kathryn Stockett

15. The Hound of Rowan - Henery Neff

16 HP and the Order of the Phoenix

17. HP and the Half Blood Prince

18. HP and the Deathly Hallows

19. The Girl She Used to Be - David Cristofano

20. The Second Siege - Henery Neff

21. The Fiend and the Forge - Henery Neff

22. Hotel at the Corner of Bitter and Sweet - Jamie Ford

23. HP and the Chamber of secrets

24. Irma Voth - Miriam Toews

25. Pendragon - D. J. Machale

*26. Game of Thrones - George R. R. Martin

27. Thirteenth Child: Frontier Magic - Patricia Wrede

28. Clash of Kings - George R. R. Martin

29. Across the Great Divide - Patricia Wrede

30. Little Princes - Conor Grennan

31. A Storm of Swords - G. Martin

32. HP and the Prisoner of Azkaban

33. A Feast of Crows - G. Martin

34. HP and the Goblet of Fire - Rowling

35. The Elegance of the Hedgehog - Muriel Barbery

36. Magor Pettigrew's Last Stand - Helen Simonson

37. Julie and the Wolves - Jean Craighead George

Have a Happy, Peaceful Holiday!!

I just wanted to take a moment to wish all my friends and fellow bloggers who stop by here - Happy Holidays.

Whatever holidays you celebrate during this next week or two, I hope you have a happy time.

I appreciate those who stop by here to read, offer support, advice and/or friendship. So best of the season to all of you!

I am happy to say that I am nausea free after 5 days of barely eating and a case of stomach flu. My stomach is still not quite right (I will spare the details) and I'm incredibly weak and tired, but very thankful that I am not nauseous.

WHAM!!!!!

I took a risk and attended a reunion of friends three hours south of here in Minnesota over the weekend. It was so nice to see these folks again. The tough part was dealing with the M.E. fatigue/weakness/fluiness, but we had a house rented where I had a bed I could retreat to which helped.

Before I got M.E./CFS 9 years ago, me and some women friends planned a fund-raising expedition that would take us across much of sub-arctic Canada by ski and dog team. We planned the whole thing including raising many of the sled dogs from pups. Unfortunately part way through the planning years I came down with a severe mono infection and as you know, failed to recover....

However, I am still good friends with most the woman and it was so nice to see them again (as well as two children that have come along in the years since). The third and last day of the visit was a let down as 4 people came down with stomach flu. I thought I had escaped until yesterday morning. I won't go into the details.

36 hours later I'm still quite ill, although I am keeping down a little fluid now. On top of it, I believe I have my post visit crash setting in (it's really hard to tell stomach virus weakness and fatigue from the M.E. sort, however, as of this morning my breathing is painful and achy which is a classic M.E. crash).

My NP called this morning to let me know about my blood work from last week. My ANA and rheumatoid factor were normal, however, interestingly I do have a low B12 level, low Ferritin (down to 7 now but haemoglobin's OK), as well as a low WBC (I think she said 3.4) with mild neutropenia (maybe 1.2?). I have a choice of supplementing the B12 with pills or getting shots and I'm going to get the shots, despite the fact that it might mean an extra outing once a month. I've heard such good things about them.

So that's what's happening here. Despite the stomach virus and the crash, I'm still glad I saw my friends. I'm hoping that I pick up a little before Christmas, though. I'm also hoping that fighting the stomach virus doesn't send me back to pre-Dec. levels of M.E.

Appointment time

It's been three months since I've had any kind of Dr. appointment, despite the fact I've experienced my worst relapse since 2004 (which I've recently been pulling out of - yay).

I had an appointment with my NP (nurse practitioner) today. She's lovely and somewhat familiar with M.E. (she has a family member with it) although she's definitely not up on all the recent research or anything.

I vacillate between wanting to seek out medical help and new treatments and wanting to avoid doctors altogether as they've never been able to help in the past, even if they weren't dismissive. I love my specialist but have to travel far to see her and I've been too sick for travel lately.

They are trying to set up a tele health (like a televised health appointment) between my NP, my specialist, and me, but they've been trying to set it up for three months and still don't have one set, so I'm not holding my breath.

One thing I like about my NP is she treats me like an intelligent woman. Today, I actually had a hand in picking out some of my blood work. I've been curious lately about autoimmune stuff and asked to have my levels checked.

I've been dealing with a lot of OI symptoms - lots of dizzy spells and blackouts and blood pooling. We took my blood pressure sitting and then I told her we had to wait a few min. standing to see a drop. Then the machine wouldn't take a reading on standing. So we used the other machine, same deal (it was either too low to get a reading or due to my shaking hands). By the third time (she did the reading by hand - the old fashioned way), I was really quite dizzy (seeing spots). My BP only dropped about 25, however, she very obviously noticed the tremor/shakes as well as the purple hands.

After the third time I sat down and wasn't able to get up for a while because I still had spots from a partial black-out. It was embarrassing, however, in a way it was good because she finally saw the tremor I have explained and she clearly saw my purplish hands which she said is common in vascular conditions.

She's hoping to discuss these issues with my specialist or perhaps see if we can find me a specialist of some kind here in town.

She checked my throat and found swollen glands as per usual. I think they are just a permanent part of M.E. for me. Also she observed three blistery patches in my throat.

So I have some blood work to do and also an ultra sound for my thyroid. While my levels are always normal, in the past I've had cysts on my thyroid as well as goiter.

We also filled out the paperwork for my medical leave. I feel really good about it. I'm hoping to do some healing (and art) and just try to recover emotionally and physically from this relapse. I told her I would like to find some kind of treatment that will help me get well enough to go back. We're meeting again in January and can hopefully follow up with some kind of plan.

Wanting More - a poem

it's a puzzle
and there is a piece
that lays missing
a quiet shard
that never allows its full healing

you can pretend
so others won't see
becuz who would ever really understand.

what it's really like
to never feel well
to have to battle
and yet accept all at the same time

to wish and wish
only to be pressed down
to not having the strength
to wish at all

it's not cancer
it's not death
it's not visible

its stealth like quietness
steals your life
inch by inch
your only 'choice'
is surrender to it
to not go crazy

people who do know
- don't really know
it's almost like they've forgotten
how much a struggle this is
who would want to think about someone they love
in this much suffering

so you numb yourself
caffeinate your exhausted body so you can function
force yourself not think about the 'symptoms'
becuz there's no real name for it...

no cure...
only shrugs, and silence
making you be the one
to have to endure

but don't complain
who wants that
don't look outside
at everyone running around
effortlessly

don't look back
at all that you've lost
sure grieve
- privately
but you'll get better in time..
right...?

think positively
push yourself
collapse in the shadows

when all you want is to feel health
to walk and not be leadened down
to think and not muddle through fog to get the thoughts out
to dance, sweat, feel your heart pound.
to work, earn a paycheck, build a life
to sleep and awaken refreshed.

to feel normal
what is that like....
after 8 yrs i no longer remember.

so what do you do now?
you still have days
where getting out of bed is like climbing a mountain
and the good day is a whisper of who you once were

accept that.
except that....
I want more......


My friend and fellow M.E. sufferer, Shannon, wrote this poem and she was willing to have me share it here. I think it is a poingnent, insightful peice about the loss and longing that is part and parcel of having M.E.

Medical Leave

It's official. I'm taking a one or two term medical leave from the PhD.

So, I'm going to be off until either May or Sept., depending on health and other things.

I may still do a little plugging away - reading some papers I have downloaded, drafting a proposal - or I may do nothing.

I want to intentionally focus more on my health....as in healing (not fixating). For example, perhaps I will try to pursue some treatment for the POTS and maybe I'll try to find myself a Dr. or specialist here in town. At least I'll make an effort to get in contact with my specialist.

With the pressure off, I'm hoping I will continue to get a little stronger. Historically, we are coming up on my worst time of year health wise (Feb - April). However, since the fall was so surprisingly bad, perhaps I'll have a good winter for a change? One can hope right?

I feel like I've made the right decision.

The hard part will be financial, but I'm sure I'll manage.

Why? Tell me why?

For three days I've been feeling decent. Just like a mild flu...not much more.
To top it off, it makes no sense?

I had an event I've been wanting to attend for a month - a friend's dissertation defence and celebration. So I planned way ahead. I spent the 3 or 4 days beforehand mostly in bed. My one roommate switched a shift so she could attend the events as well, but also drive me.

The defence was a 1-1/2 to 2 hour event in the morning. Then I rested for the rest of the day and we went for 2 hours of the evening social/dinner.

Not that I was feeling fantastic, but I wasn't completely miserable either (for a change).

The next day I wasn't too badly, however, often my real crash comes 36-40 hours later. But 48 hours went by and still no crash??? What? I haven't "gotten away" with anything in 6 months.

And now it's 5 days later and still no crash? To top it off, I've been on (albeit) very short outings the last two days!!! I went and rented some movies yesterday all on my own! I feel a little ridiculous to celebrate such a simple task, however, it's been SO SO long since I could manage an outing without either help, tears, misery, an awful crash (or a combination of all four).

The things that are going on in my head at present besides "wow, I'm loving this!":

1. Enjoy it while it's here and don't think about it.
2. Enjoy it but still be careful because this is when you always over do it and end up back in a crash.
3. What did I do right, if anything?? There is no rhyme or reason for these good days.
4. I want to figure it out so I can keep the good days coming.
5. Should I go back on my plan to take a medical leave? Maybe I can handle doing some work on the PhD from home this winter afterall?

Here are some of the reasons I may be doing well:

months and months of rest - the accumulation is now paying off

it could be nothing of my doing at all - perhaps my body is just getting on top of the ??? illness for a few days

My roommate who's been off work with a heart condition since spring is away. Despite the fact I love him, maybe the hours alone just resting with no social or household stress has helped.

Maybe (ironically) I have an infection like a cold? Interestingly, if I catch something, the M.E. often improves during the first few days of the immune assault (prior to symptom onset).

Anyways, it's fun to share some good health news for a change :)

M.E./CFS and overlapping conditions

It's really hard to tell sometimes what symptoms are caused by the M.E./CFS and what symptoms are caused by another condition.

Because they don't fully understand the pathology of M.E., it can be difficult to tell where one disease ends and another begins.

For example, fibromyalgia often overlaps with M.E. Some Dr.s believe they are the same, (some believe neither exist), but the research I've read indicates differences between them, even though there are a lot of overlapping symptoms.

M.E./CFS can also look like a lot of other conditions: viral infection, Lyme's disease, AIDS, multiple sclerosis, lupus and other autoimmune diseases, celiac disease, hypothyroidism, etc., etc.

Every time over the years I've seen a new GP they start trying to figure out what's "really" wrong with me. The usual go-tos are infection, autoimmune disease and thyroid disease.

Recent research on the success of the drug rituximab
http://www.medscape.com/viewarticle/752067

led Norwegian researchers to speculate that M.E./CFS is a type of B cell autoimmune disease.

This month I'm curious what other conditions/diseases people have been diagnosed with. I have a poll on the right. Of course I couldn't list every condition so I put some of the more common overlapping ones.

The only one I have been diagnosed with (and it's common in over 80% of M.E. patients) is Orthostatic Intolerance - in my case both POTS and NMH.

My most frustrating 6 M.E. symptoms during the last month have been:

1. fatigue and weakness
2. the shakes/tremors (I think caused by POTS)
3. feelings of having influenza such as painful breathing, and that icky, sick feeling (malaise)
4. dizzy spells when standing and red, sometimes purple hands from blood pooling
5. dry sore eyes
6. painful lymph nodes esp. axillary (armpits)

fighting feelings of guilt

After the cabin trip last week I crashed for a few days as expected.

Since then I've been just my typical low energy, fluey, sick self of the fall. Quite disabled to tell you the truth. I've been on two quick (30min) outings (with a chauffeur) in the last week and both were draining to the degree that the outings were miserable affairs.

I think I need to accept my home-boundness right now, but it's hard. I'm used to being able to go out once or twice a week without a crash if I play it right. At present, that just doesn't seem to be the case.

I'm pretty sure (80%) that I'm going to take a medical leave of absence from the PhD starting in the winter. I've got a meeting scheduled to discuss it with my supervisor in early December.

While I'm probably well enough to squeeze out a few hours of research a week, I just haven't had the motivation since the end of summer. I'm collecting grant money and doing nothing to earn it. It doesn't feel right. I can't justify taking the money.

I like that a leave is just that: a leave. I'm not quitting. I could start up again next fall if I'm doing better. It will be VERY hard to live purely off of the social services disability I receive, but I think/hope I can make it work....

You know, I've always felt guilt around not being able to work and receiving government $$$. I'm not sure if that will ever go away (unless I get better and am able to work). However, in the words of my specialist "you need to get over that".

One of my mantras living with this illness is "It's not my fault I'm sick" and "I didn't choose this". Actually, it really helps to remind myself (sometimes multiple times a day) of this.

• I don't want to be sick



• I'm not choosing to be sick



• I'm not actually lazy, or unmotivated, I'm sick



• I would love more than anything to work, earn a living, have a social life, hobbies, etc.

Chronic illness brings with it a lot of stigmatism (especially M.E.). We live in a society that valorizes strength, toughness, and overcoming challenges. People who get sick and don't get better (the chronically ill) don't really fit this ideal.

At the same time, living every day sick and enduring the pain/fatigue/weakness/suffering we do takes immense amounts of strength. But being a mostly invisible illness (one you can't see from the outside) only those of us who live this reality really understand how much strength and toughness is involved.

With the PhD I've been doing something concrete - albeit at my own pace - but it's given me some feelings of self worth. It will be interesting to navigate my better moments and hours without the work of the PhD hanging over me, but also providing productive activity for my goal-oriented self.

Do you ever feel guilt around aspects of being ill? How do you navigate those thoughts/feelings?

Get-away

GET-AWAY ACTIVITIES:

My roommates and I spent 2 nights at a cabin in a near-by park this week.
I did this get-away once before without crashing/relapsing.

The weather was cold, windy, and cloudy mostly - we even had snow the last day.

We sat out by the fire a lot, ate a lot, and I did two walks. One was a good distance (flat and equivalent of a 1/2- 1 block - 5min or less), the other was too long. I haven't had a big crash yet, but quite often it comes 36-48hrs later, we'll see. I'm feeling sick, but not terrible.

With the second walk I just couldn't hold myself back and it was down hill on the way there (to a Lake Superior lookout) so I kept going. On the way back it was gradual up hill and a real struggle. I had to stop lots and rest. Afterwards I had constant leg tremors for the rest of the day, all night, and into the next day.

Otherwise, I took it pretty easy - reading, resting, and some visiting.

WILDLIFE:

We saw lots and lots of deer - including bucks, a wolf on the side of the road that actually howled after I tried howling at it (poor photo sorry), a few ravens, some whiskey jacks/Canadian jays, a red squirrel and some snow buntings.

I'm posting a few photos....enjoy

progress in millimetres

While I've made no huge gains in my health the last week or two, the trend has (wonderfully) been towards feeling better. Better in millimetres rather than leaps and bounds, though.

My period of feeling intensely fluey and weak is mostly shorter these days - like from noon until 6pm instead of 10am (when I get up) until 7pm or even until I go to bed.

Of course I still feel ill all day every day, it's just with lesser intensity, even for a few hours a day, I feel as if I can cope.

This feeling better still seems to be predicated on me being home laying down most the day. I have managed some small (less than an hour) outings without crashing if someone else does the driving. The photo here (while not a great one) is from the evening when my friend J came to take the dog to a park nearby. I asked her to take me along too. The plan would be for me to sit by the creek while they walked.

Unfortunately the dog didn't like the plan (she sticks to me like glue) so she ran around wildly from J to me....I kept telling her "go find J" and she would cock her head listening to me, look in all four directions, and then tear off for five minutes or so running through the fields woods and creek...it was actually pretty entertaining.

I'm still considering a medical leave of absence for the PhD, though. I'll give myself the month of November to work, and if I still haven't found a way to make some progress, I'll take a two term leave. I'm not putting much pressure on myself to do things right now. I want to continue focusing on my healing and recovery from the relapse and treat myself gently....after what I've been through I feel like I deserve it.

I tried one very short shopping trip this week just to buy a card for my Aunt. I put on my compression stockings and my roommate drove me to the drug store. Within two minutes of standing in the card aisle I managed a complete black-out (I didn't fall).

The OI is obviously still pretty severe...my hands pool blood most the day (even laying in bed) and I can't stand still for long. I can, however, do very very short 1/2 to one block walks on my better days. If I'm moving I don't seem to get the dizziness. However, I still have to be very careful about "overdoing" and crashing.

Ups and Downs

For a week and a half I've felt just a little better. Such relief after months with no break from the never ending flu. So now I'm contending with a body that is easing (hopefully) out of a relapse and is seriously deconditioned.

I had to go out two days ago to pick up my medical compression stockings for POTS. it was about an hour outing. The stockings are way harder to put on than I expected. They take a fair amount of time and strength. They seem to help some with the standing/sitting dizziness which is great. On the other hand, there is increased blood pooling in my arms and hands, and after I take them off, my legs hurt for hours. To be honest, I'm not sure how much I'll use them.

Then yesterday I went on a short outing with the dog.

Today I'm absolutely crashed and ill and miserable. Right back to square one as a reslult of two days with one hour outings....sigh

I really wish there was some help for this illness. I feel so awfully sick and alone. I'm such a solution oriented person I feel like there's got to be something I could take or do that would help.

I also feel so lost with the relapse recovery. Should I just do nothing at all? Should I just lay here everyday all day? How much should I attempt? How do I know if I can do a little more if I never try? On the other hand, how do I avoid these awful crashes?

I want to have a social life, I want to work on my PhD, when I never leave the house I get depressed.

On my bad days I'm seriously considering taking a two or three term medical leave. I'm making no progress on my PhD....I can't justify collecting grant money indefinitely and doing absolutely nothing. Also, I'm no where near well enough to conduct research next summer and there is a fair amount of work I need to do before hand (i.e. now) to make it happen.

Drug that helps those with M.E.- is it really possible?

http://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug.html


I read this today and felt hopeful. When you have severe enough M.E. that you have to give up most your activities, something like this can inspire hope.

On the other hand, how many times in 10 years have I gotten my hopes up only to have the promised treatment, drug, diagnostic test, diet, supplement, protocol, etc. not work out? The answer: every single time.

The good thing I see with this study, is while it's a small one, it was a double blinded study - meaning that neither the patients or doctors knew which treatment the patients were on. In otherwords, the positive effects for 67% were no accident.

Also, the drug is already an approved drug - albeit one approved for lymphoma.

Interestingly, it took quite a while (at least 3mo or longer for most) to see any improvement.

Fingers crossed

Photos...and thoughts on POTS

Fall is one of my favourite seasons here in Northern Ontario. I love late summer and winter too, but since getting ill, I don't get outside much in the winter to enjoy it. So I think late summer and fall have moved to the top of my favourite season list.

I'm just posting some photos from the fall. Some from the cabin trip a few weeks ago and others from an outing to a nearby spot.

I had a terrible crash-day on Thanksgiving after my outing Sunday. I just seem to have no stamina for any outings (without crashing); however, on a positive note, I have found I feel less fluey and weak lately if I just lay around all day. If I do virtually nothing, I've been feeling a bit better.

I guess my concern is deconditioning. I've been doing a fair amount of reading on POTS, and one of the main treatments is exercise. Further, deconditioning can exacerbate POTS. It's a bit of a catch-22 isn't it?

On the days I'm able, I've been walking a gentle half block - even if I've spent the rest the day in bed. However, this hardly feels like exercise.

Final thought/question? I finally went and got fitted for my medical compression stockings. I'm wondering if anyone has had success with these for POTS symptoms?



They were very nice in helping me at the store, but only one of the women was familiar with OI. She said she'd fit a female teen with medical stockings for OI (orthostatic intolerance).

My Dr. had indicated 30 mmHg compression and the saleswomen put me in the 30-40 rather than 20-30 because she said for OI, more pressure was probably better.

Funny anecdote. Even after a couple minutes standing to get measured, I noticed my hands had pooled blood - they were purple. Blood pooling in the feet and legs makes sense but in the hands? Has anyone heard of such a thing?

Thankful

It's Thanksgiving today here in Canada. My housemate/friend cooked a turkey and then some of my housemate's work friends came over. I was so sick from an outing yesterday (and to be honest from the M.E. in general) I spent most of the day in bed wishing I wasn't, rather than being thankful.

So before the day ends, I'm going to try:

1. I'm thankful for my green bedroom which I love and also my very comfy bed

2. I'm thankful I didn't go south to see family because I was too sick this time round and it would have been a disappointment all round.

3. I'm thankful I don't have to grocery shop (really, I think about this all the time!!! When I lived alone and was relapsed or crashed I so often had to cut it short or I would come out of the store, sit down in my car and cry from the effort, dizziness and sickness). And this makes me thankful for my housemates. Thanks S&J!

4. I'm thankful I still have two books in the pile :). Reading fiction gives me an escape and keeps me sane...or at least close to sane :) (insert maniacal laugh here)

5. I'm thankful for my yellow dog. I mean I can't imagine living this bed-life without her comfort and company and quirkyness. Love you Teagan.

Taking it easy

I've been trying to take it really easy for the last two weeks.

As you know if you read this blog, overall I've had a pretty bad year and September was my worst September I can remember, and my worst month since 2005.

The accumulation of bed time is probably wrecking it's own havoc as my muscles are weak from both the disease and inactivity. Still, small attempts at activity lead to fairly severe crashing so I'm learning to ride this relapse and when I have a decent day, I'm trying (really really hard) not to over do it. On the positive, I've had some hours of feeling less fluy here and there.

My friends J & J had a cabin rented at a nearby park last weekend and I was able to go along. It was such a nice change of face and place. While I mostly rested there as I would here, I just really needed a change. I didn't even crash from it.

I had only one event planned this week - a lunch with a fellow PhD student (which I'd already rescheduled). That was today. Then a friend called this morning and we talked and by the time I got off the phone I was in tears. I felt way too sick for a lunch outing. Still, I rallied and enjoyed it some, but came home and fell apart. Way too much yet for this sickie. It made me so sad.

It's just going to take some time to pull out of this relapse, I think. For now, no more "planned" events of any kind - at least for a while.

I finally got a call about scheduling my next specialist appointment. It's going to be done by telehealth (like teleconferencing) and my NP (Nurse Practitioner) is going to sit in. I think that will be good.

I'm going to continue to fight for some treatment for the POTS. I have been drinking lots and lots, eating salt and salty foods, and not noticing much difference. I still haven't filled out my prescription for the hose though, mostly because I've only had a couple outings in weeks and weeks and those were for pleasure. The other night I was having a fairly significant dizzy spell and took my own pulse - 160 just standing doing dishes (I usually sit).

Interestingly, I was looking at a list of POTS symptoms and noticed that tremors are on there. It actually explains quite a few symptoms we've been wondering about.
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
Infact, outside my immune/viral problems (which are significant), this list would explain pretty much the rest of the illness.

I'll post few photos from the weekend when I get them loaded, for now, I'll post some good photos from a near-by overlook at sunset.

p.s. I just wanted to add how much I appreciate all the support I get on this blog. I can't imagine going through this illness, let alone a relapse, without having people in my life who know how draining and difficult living with this disease is.

Work and Play

I was reading a book a while back about living with chronic illness by Patricia Fennel. The author was encouraging people with chronic illness and limited energy to make sure to divide their usable time between work, social, and personal enrichment activities. Even if there's only a few minutes a day here and there, to make sure these areas are all being fulfilled.

While a good idea, I don't necessarily think that all healthy people even do this. I know plenty of workaholics. And especially when I was first ill, I felt immensely guilty doing anything "fun" when I wasn't able to even carry out a portion of my work responsibilities.

Lately, I've been so ill I haven't managed social, personal, or work. I have a paper I need to edit that is hanging over me. During this relapse, I've opened the document to work on it six days in a row without accomplishing anything. Similarly, my roommates' parents were visiting so I took the small office and gave them my room (bigger, nicer with a queen bed). I pretty much lay on my futon on the floor of the office the whole time, only getting up for dinner and a shower or bath every few days. It was so embarrassing. But I was way too sick for anything social.

Personal fulfillment wise, I was able to read some fiction while laying around the past two weeks. Until last night, I hadn't been on a single out-of-the house outing in 11 days (except to sit in the back yard twice or walk to the alley and back).

My point being, that when you're really sick, it's hard to attend to any of these categories.

Finally, yesterday morning I had a little two hour window where I didn't feel like death and was surprised to find myself working on that paper. It made me realize how restricted I've been by this relapse.

If I continue to improve, the hard part will be holding myself back. I have errands I need to do and am just crazy of being cooped up in my room.

Challenging week.

Just another quick update.

I am still paying (I think) for going out twice last week despite being really sick. Perhaps I'm still paying for the picnic the week before, too.

I just spent 5 days almost completely in bed. I got up for little things and a couple meals, but simple tasks have me easily fatigued so then it's right back to bed to recover. I was able to cook a meal last night sitting on my stool, but took frequent breaks to lay down during the process. And of course it's not just extreme fatigue and weakness...there's also the flu like viral aspect.


I've been feeling so terrible, I even considered going to the hospital this week - can you believe it? However, there was nothing "acute" enough to put myself through the outing and waiting etc...

Finally today after 5 crashed days, I had a tad more energy and felt less fluey when I woke.
I decided to shower as I haven't felt up to it the last few days. But that was it - the shower flattened me....it's just amazing to me that something as simple as a shower can have me so exhausted.

However, that hour of reprieve pre-shower gave me hope that a few more days in bed might improve me.

I really wanted to try for a short walk today. I just can't help but think that despite being so sick, that I should still try to "move" a few times a day.

On top of it all, can you believe we have guests? My roommate's folks are here. It's probably about the worst week for having guests given how sick and non-functional I am. Five people in this tiny house. At least they're not my folks so I don't feel obligated to entertain....OK back to bed for me.

Sorry if I'm not caught up on blogs....once I'm rested or improved I will.

Mindless surfing, a little reading (fiction) and resting seem to be my main activities for now.

I also have my little yellow roommate (dog) checking in on me often. For part of the day she snuggles in with me while I read or rest.

Bed Day

I'm having a complete bed day... I had an OK hour this morning and then WHAM...terrible flu and weakness.

I did too much early in the week - two out-of-the-house outings. One was a two hour session at the U I promised I'd help with months ago. I was feeling terrible that morning but forced myself to go anyways.

Then I had an NP appointment yesterday and I knew (ironically) I was too sick to go....still I went (my roommate drove me). It was just a check-in because I've been doing so poorly, but really she doesn't have much to offer me. She did a strep test on my viral looking throat - no strep.

So I'm super crashed again today (I thought yesterday was bad).

Despite another bad week I've been coping a bit better...mental stamina was holding up until today. I really really hope tomorrow's better. It's days like these I need hope.

I'll post a couple photos from that paddle last week then back to resting for me.

Being tough and working through....

Another hard week under my belt. I had some definite ups and downs...the ups were two trips to beautiful outdoor places. One evening my roommate and I took the dog for a swim in Lake Superior. It was around sunset and gorgeous. I went in the water - it was FREEZING! but refreshing.

Yesterday we went for an evening picnic and short paddle. Arms were weak, but I managed to lily dip and steer and we were paddling down a beautiful little channel at twilight where the trees and sky were perfectly reflected in the water like a mirror (pictures to follow someday).

Seems like a lot right? It really is a lot and more than I should be attempting. Otherwise I was in bed almost all day everyday, getting up for lunch and dinner and maybe a little time on the couch in the p.m. I've been running an afternoon and evening fever now for two weeks.

I was talking to my Mom this week (who's been suffering terrible chronic pain due to osteoporosis and a degenerated disc). Her situation is very different and yet similar in that it's chronic. Chronic pain...I can't imagine. My problem feels like chronic flu or chronic viral immune activation....I said to her "I just don't know how to take this anymore day after day, year after year. How many more years am I going to have to live like this? How can I possibly manage?"

Her reply was "you just need to be tough". While this may sound a little insensitive, I know that's not what she meant and it made me think. She's right.

It's the mental and emotional part that lately has been hard. Just waking up each day and having to do it all over again. Somehow make it through feeling so terribly sick and weak and beyond tired....and having no way around it. But my mom is right....after nine years we can be pretty sure that it's not going away (it might, but there sure aren't any signs of it).

So I really have two choices. I either get through each day of suffering moaning and groaning (internally) or I try my best to hang tough. I really am on my own with this (meaning there doesn't seem to be anyone out there that can make it go away). I need to be tough.

Which made me think I need to start thinking more about "getting through" and "working through" each day rather than trying to find ways to escape and work around it. Basically, I'm trying to change my mind set.

I've been a little kamikaze lately - pushing really hard sometimes in order to do something fun. Then afterwards I pay the consequences in that I'm so terribly crashed and viral for days afterwards. Being even sicker afterwards means I get even more frustrated and depressed. It's a vicious cycle.

I need to find a way to balance it out a bit. Part of it is I'm sick of relying on others for everything....driving me places, getting stuff for me, taking me on outings. I want to take care of myself so then I go do things and end up crashed worse. Does anyone have any ideas?

Wanting to run away

Since that short camping trip in August I've been hoping to get away again. My plan is to have my canoe pack ready so I can just up and go if I have a few days and a window of energy. I'll rent the lightest boat I can, and head off into the woods/bush.

Is this beyond my abilities?

Yes and no.

I think I could manage it if I could just get out of bed (hahaha). I certainly have the knowledge to be out and safe on my own with 8 years as a year-round guide under my belt...although that was a long while ago now.

I've been crashed all week. I've had some OK hours here and there, but mostly I've just been laying in bed. If I have a decent moment, I do something small like: doing the dishes sitting on my stool, have a shower, check the gardens...

It really is a miserable existence not only because the fatigue is all-encompassing and overwhelming but I feel so terribly ill and fluey on top of it. The malaise, chest ache, and sore throat are at times unbearable. I'm always worse from about 1pm through 6pm where I lay in bed thinking - I really can't stand living like this for another single day.

I'm also struggling socially. I don't feel up to being around people (physically or mentally) and yet I'm never alone at home anymore - one of my housemates has been off work for four months now. For some reason on top of feeling physically bad, all of my interactions at home recently, end with me feeling really bad about myself as a person as well. I'm not blaming anyone here. I take complete responsibility for my emotions and behaviours, but I'm desperate for a long retreat AWAY.

I feel so trapped. Trapped in this sick body, trapped in this house, in this room, in this bed.

When it comes down to it, I'm in an awful funk. I think getting out in the woods would help and yet I can't "take a vacation" because I'm just too ill.

I went out (of the house) last Tues to help a classmate with some work and was so crashed that from Wed. - Friday I quite literally felt like I was dying.



I also went out Friday night to a wolf talk at a local park. Some friends drove. It was so nice to escape these four walls. The programme was at night and it ended with a wolf howl (to get the nearby pack to howl back). While the only howls returned were those of local campers, the stars were amazing. I hadn't seen stars like that for almost two years and sitting on the beach looking up was wonderful.

So now I have to pay for that 4 to 5 hour outing for how many days???? Sigh.

I wish I were more of a homebody, content to sit back and enjoy some simple low energy activities. I do love to read, and that really is a saving grace at times.

I believe I'm making myself sicker by pushing myself out of the house every time I can manage it. On the other hand, when I'm not pushing myself to get out, here at home I'm getting cabin fever and increased depression like you wouldn't believe.

So I'm going to continue to pack for my canoe trip and hope that either (a) it comes to fruition even if I pay the price for a year, or (b) keeps me distracted and dreaming in the mean time. For example, once again last night I was in bed looking at maps and canoe routes (smile).

Thoughts on not being a Hero

I've noticed that my blog posts are far from upbeat lately. Many of those who read this blog know what it's like to be sick day after day. I don't necessarily need to report it. Of course we read blogs for many reasons: to understand someone else's perspective, to get a snapshot of someone's life experience, to find new ways to cope and deal with our struggles, and if we're ill, to learn about new research or treatment possibilities.

Obviously, I don't want this blog to be just an outlet for my suffering and frustration. Despite this, I find that having a creative outlet does help me "let go" and get things off my mind. It's cathartic, but not my sole purpose in blogging. In the beginning I thought my blog could be a chronicle of my journey towards health. This hasn't panned out yet.

Sometimes I feel like there is pressure to be inspiring by either getting better (healing or at least improving) or rising above this terrible illness in some way. In a sense, sometimes I feel pressure (mostly internal) that if I'm going to be sick and disabled I need to also be a hero. I feel I want to contradict this lately. I want to be able to say "this is really hard" and "I don't always cope well". I was lamenting to a friend recently about how everyone else seems to be able to "deal" better than I do, and she said something like - "comparing yourself to others based on things you don't know about their lives"....so true.

It took 12 or 13 days of crashed to recover from camping....I'm still very ill for this time of year (it's supposed to be my good time of year). With my first good day yesterday of course I took the dog swimming. I had to be near the water, look out at the lake, listen to the waves. So I'm in bed again today.

I've had the house to myself for the last six days which meant I had a very quiet, low-stress space. I really enjoyed it. I worked on a paper for publication that I've been avoiding for months. I would wake up and work two hours each morning, lying on the couch...then I'd putz...read, rest, surf online, rest, eat, TV.

I'm trying to come to terms with my overall decline in health this year. I think part of it is beyond my control. However, I wonder how much the long term deconditioning is playing a role? I try to walk even a quarter block on the days I'm able, but it's hard when I'm feeling fluey all the time.

I'm also thinking lots about what it means to be hopeful and how to balance that with my daily reality.

Renee recently wrote a blog post on a similar theme.
http://lymeliving.blogspot.com/2011/08/where-do-we-begin.html

Also, I was extremely moved and inspired by Sue's story on becoming visible for ME http://becomingvisible4me.org/2011/08/12/august-2011-me-story-sue/

a site that Dominque http://www.4wallsandaview.com/ started to give people a chance to share their stories about living with ME.

Endure.....

While "this sickie can camp" - see previous blog post - this sickie can also get really sick from doing too much: e.g. CAMPING (see previous post ha ha).

I really am amazingly ill. Is anyone else sometimes "amazed" at how ill they are?
I feel like the worst day of the flu X 5 with regards to malaise and fatigue. Sore throat, blisters, chest ache and breathing pain, dizziness etc.

I also have a fever 99.5 F. Yes, I know it's only a low grade fever, but still, I feel like I have a fever. When I don't feel feverish and I check, it's 98.0 or there abouts. When I'm feeling esp. badly it seems to sit in the 99.5 - 100 range.

While I should regret the camping, instead I've been laying in bed looking at maps and dreaming of the next trip. I'm trying to distract myself.

Sometimes this illness is really about "enduing" isn't it?

This sickie can camp!

Well I just did something outrageous!....at least for someone who's mostly homebound and often in bed lying down (partly due to the ME, partly due to the OI).


I went wilderness camping.

As most of you know, my pre-M.E. career was outdoor educator/wilderness instructor working mostly with teens. I did this work for 9 years year-round. For 6 of those years between guiding trips and personal days I was probably out in the backcountry about 200 days a year.

Of course I miss it and there have been plans for me to go out almost every year since I got sick.

But either I was too sick to make it happen, or feeling like if I made it happen, I wouldn't even enjoy it due to feeling so ill.

While I was attending that course this summer I couldn't even sustain the 2 hours a day for four weeks. There were days as I lay in bed frustrated, sick, humiliated, that I thought, "Why am I putting myself through this?" "What am I gaining here?"

I had a kind of epiphany....I mean I can push myself hard with consequences, but why not do this for something I'll enjoy?

So I figured I'd try to "go out". My lovely housemate and friend realized I was planning to do this alone and decided to take her days off to go with me. She helped me make it happen.

So the three of us (dog included) went. In retrospect it worked much better having help. She drove us there as driving causes me to crash. I live in an area that is surrounded by lakes and wilderness/backcountry on all sides which makes for easy access. We picked a lake, launched the canoe and canoed until we found a campsite that would work. She paddled, I mostly steered.

We spent two nights camping which involved sitting on an island, resting in the tent....eating....sitting by the fire...sitting by the lake. Not too different from home in bed except I could hear the waves on the shore, the wind through the aspens, and the loons on the lake.

The only epic was the paddle back to the car as the waves picked up and I was forced to actually paddle with my weak shaky M.E. arms....I managed to rally and now can't use my arms (arms are crashed); however, that will pass.

I think this will have to be a yearly endeavour. While I'm crashed, I was before going too. I've been so depressed about my life that this little outing will give me something to smile about for a while. I think it worked partly because I prepared myself mentally that I would be sick out there.

Sometimes when I imagine myself in a different space, subliminally I don't imagine the illness coming with me. But preparing myself beforehand to expect this experience to be different from my "well" past helped. Still, there were a few surprises like a couple near faints from OI and legs that didn't work (were weak and shaky and unstable). Overall, though, a success....in fact, more successful than some trips to see friends and family where the travel and social is so draining.

blood pooling (read and look at your own risk)!!

Guess which foot (or feet) belong to the roommate with OI ? And this is only a moderate day....you should see them when they're purple.
I hope this doesn't gross anyone out too much (sorry).


I'm going to attach a lovely local scene of my favourite swimming spot so you can get that one out of your head.




Feeling terrible and very fluey today...hurts with every breath. Hopefully tomorrow's better, right?

Phone appontment with specialist

I don't like phone appointments. I've done three, and they are just not the same.
Although there is one nice part - I get to lay down during the appointment!

I had three things on my list: Anti virals, tremor, and OI (Orthostatic Intollerance).

She confirmed that my fainting episode, lightheadedness, and the rise in heart rate is OI. Of course, I have ME right? I think that the Dr. I saw in May was just uneducated. He didn't notice a change in BP but she said he may have not waited long enough. She's sending me a prescription for compression stockings...blah. Not excited about that especially in this heat. I'll also continue to load up on the salt and water. Has anyone else tried these stockings?

The shaking/tremor could be related to the OI, it could be neurological M.E. stuff, or it could be something else. Since she couldn't observe it, she wants me to have my NP look at it. So before that appointment (later in August) I'll do some things I know will trigger it....all I can say is it's frustrating to have another ridiculous symptom that may or may not be treatable.

As for the anti viral, I'm going to up my dose a bit and keep a symptom log for my throat. I wasn't very helpful in knowing whether there's been any change on the viral symptoms. I still get low grade fevers...my throat still has blisters (although I don't think it's been as sore) and my lymph nodes (arms) are painful on and off about the same as usual. It makes sense to track these symptoms to see if the anti viral makes a difference.

She's excited to have telehealth in her office now. She said that hopefully we could do my next appointment with telehealth. I'm hoping my NP is willing to help make this happen, because it sounds like it might take some negotiating on this end.

New"er" symptom

I'm home safe and sound. Not completely crashed (yet). Travel was very very difficult but worth it because it ended, with me being home.

To get "credit" for the course I just took, I have one assignment I still need to do worth 25%. I'm not even sure if I will. I'm feeling disillusioned by the whole experience.

Had I known how difficult and awkward it would be to do that course, I wouldn't have tried. But hindsight is 20/20 right? I feel like I've been through some kind of trauma. I pushed myself so hard to move through the feelings of illness and fatigue that each day by the time I came home I was crying or close to crying (not in public mind you).

It was awkward dealing with the social aspects...people asking why I left class, people asking me to do projects or social things that I couldn't do but didn't want to have to explain. When I missed three days in a row, people asking what was wrong, how I was.

It's a weird dance this "trying to participate" isn't it? On the one hand I wanted to be another student...defined by my personhood and studentness, not by the fact that I'm ill. I think some people were purely curious and perhaps others sympathetic; however, I didn't want to have to share my story with everyone. Ultimately I didn't want to be different.

It's funny too, I did not come out of the closest with my diagnosis either. I just told the three or four people I had to, that I have an "immune disease". Very much the truth; however, I guess not the whole truth.

One last thing and it's a question for my fellow M.E.ers.

I'm not someone with M.E. who struggles with neurological symptoms to the degree that most do. In fact, looking at the new international criterea, I'm short in the neurological category (by one or two) and might not even get a diagnosis. However, since the spring I have a newish and definitely increasingly problematic symptom: tremor.

Now I've had tremor (more like an internal buzzing) since onset on and off, but this is a much more "motor" tremor. It's very visible and much worse if I'm trying to do any fine motor task. I've broken numerous dishes, dropped things, had trouble with my fork, a pen, and even typing. This morning it took two hands to lift my mug I was so shaky. It's worse if I'm tired or hot (like after a bath). And my roommate this summer noticed it (awkward). It's starting to get bad enough that it's limiting my function to some degree.

Sound familiar? Thoughts? I'm going to ask my specialist about it when we have a phone consult next week.

Bad crash: Options

Well I'm in a bad crash. Not unexpected.

I've attended one hour of class this week.

Very weak (trouble lifting arms) and exhausted.
Mild sore throat, hoarse voice, tremors and shakes. Major OI. And the worsened breathing/chest ache of course.

So my plan was to head home. However, the course is more than half over and I didn't want to lose it, so I contacted the profs about finishing the assignments from home.

Unfortunately they aren't willing to go this route.

They would rather me stay, and attend portions of class when I can, in order for me to get credit.

This makes for a difficult decision. I fear if I head home and lose the credit that's it for the PhD. This would have been my last course; however, I NEVER want to put myself through something like this again. But without finishing this course I can't move forward.

On the other hand, I talked to my housemate Joe and he said it's really really hot at home with no air conditioning and maybe I'm better off here. At least here I'm laying sick in an air conditioned room.

Getting a physician's advice popped into my head but my experience with GPs is that they are mostly ignorant and useless when it comes to this illness. Although I wonder if my WBC has plummeted? Even so, all they ever say is when it does, is "don't get sick". Aren't I already?

To top it all off my suitemate's a bit freaked out unfortunately. Perhaps because I lay in bed most the day sick looking pale? She thinks I should go home and "get well".....wouldn't that be nice. She even approached one of my profs about it today.

I'll let you know what I decide, but for today I'm just resting.

Frustrated

I'm frustrated with myself.

On the one hand I realize it's not my fault - this illness, how it affects my body.

On the other hand, I WANT to function enough to get through two more weeks.

Unfortunately the weekend wasn't enough time for me to recover....from the cumulative energy output of these past two weeks.

I should have skipped today. However, I woke up this morning and thought "I should go, even for an hour", "show a presense".

I knew walking the two blocks that I was wiped: winded, weak, fluy, sick.

So I sat for the first hour just waiting for a good pause in the discussion so I could tactfully slip out.

The hard part is how much I want to be here doing this. Intellectually I'm present and engaged. But the physical seems to overrule that mental/intellectual...it's very powerful and persistent.

Breaking all the rules

I've heard many "rules" or guidelines when it comes to pacing and M.E/cfs.

My M.E./CFS specialist is a HUGE proponent of pacing so I feel like these rules (and versions of these) have been drilled into my mind.

1. The 10% rule: Only increase activity by 10%. For example if you can walk slowly for 10 minutes and you want to bump it up, increase your walk by 1 minute.

2. The 50% rule. Assess your energy at the beginning of the day and do only 50% of what you think you have the energy for. That way you keep a "balance" in the energy bank.

3. Make sure you can manage something consistently without crashing for 3 months before you increase your activity level.

4. Small increments. Break up tasks and activities into small increments and take rests in between.

5. Learn your warning signals: If there are symptoms that appear when you're on the verge of "too much" (e.g. tremors, sore throat etc.), learn to heed them rather than pushing through and incurring a crash.

6. Rest on the "good" days. When you're having a good day, don't try to get everything done. Instead, rest the same as you would on a bad day.


During the last two weeks I've broken every rule listed above.

In a scientific way, I'm conducting an experiment on myself. I could never endure this schedule long-term. It's a short-term experiment. And it's not like I'm trying to work an 8 hour day. I'm just trying to manage 2-3 hours of class 4 days a week. But for someone with moderate M.E. this is A LOT!!!!

Feeling as viral and fluy as I do, emotionally and mentally I couldn't keep this up for long.

But can I manage two more weeks of it (both physically and emotionally) without instigating a major relapse (vs crash)? That is the question.

Yesterday I was quite crashed and thought seriously (again) of heading home.

Today I pushed too hard AGAIN and left class when I was shaking and dizzy rather than leaving BEFORE it became unbearable.

I'm very clearly breaking all the above rules.

Now the weekend is here and I will try to follow ALL the rules at least for two days.

Week Two

I'm not feeling too well. On the other hand, I'm feeling less sick than I expected given what I've been doing activity-wise so far this week.

Today another student and I presented the morning class. It took a fair amount of prep and it meant that I had to stay for the full four hours. At the end I was high on adrenaline and coffee so I didn't feel too badly.

I walked home and lay down immediately. As the afternoon wore on I felt worse and worse.

Tomorrow is a rest day. I'm not going in to class....it's a session I've done before and therefore a good one to miss.

I find myself contemplating this process of straddling the line between catering to my sick body and participating in this course. It's very challenging. Partly because I don't know from day to day which "push" will cause a crash. Also, I'm wrestling with my desire to participate, learn, and socialize with my need to rest and placate this monster of an illness.

That's it for my update. More later once I've rested up.

On the positive side, it's looking like I just might pull this off!

Ready to go home....

I'm not saying I'm heading home....just that I'm ready to.

The travel Sunday was so exhausting.

It was a flight of 2 hours, 3 hours at the airport and then a flight of 1 hour. Then meeting my suite mate who is a very nice, intelligent, and interesting woman but also chatty.

By Monday I was exhausted already but I forced myself through a welcome breakfast and then two hours of class. I came back to my room and collapsed. I was so exhausted and felt so sick. I was ready to quit right then.

I rested in bed from noon until night and felt a bit better.

Tues I did two of the four hours. I escaped at break - awkward, but a good choice.

Today (Wed.) I forced myself to do three hours of the four but came home and fell apart emotionally and physically.

I just don't seem to have the stamina for this.

But after all the money and effort and prep work spent getting here I really don't want to leave.

And having spent most the last 6 months lying down (couch and bed) even sitting up for two or three hours is difficult let alone the interacting and walking to and from the building.

I woke up today with a sore throat and flu ache and I should have stayed home.

I have a sore throat every night when I'm tired but if it starts in the morning it's a true warning sign for me.

Pack and Prepare

I can't believe I'm posting.
I've been so busy (for me)

I'm actually waiting for the "other shoe to fall" so to speak due to how much running around I've been doing the last two days to prepare for the PhD course coming up in a week.

It's strange - I'm leaving for a whole month so I'm trying to anticipate what I might need during that time. I'm trying to take a minimalist approach. On the other hand I want things to be easy for me while I'm there.

I'll be living in a dorm room that also has a full fridge and sink (no stove). I'm trying to prepare so that I'm pretty much self sufficient - so that I don't need to leave my room much if I don't have to (except for class of course).

However, I was out of the house for 3 hours yesterday and 2 today which is A LOT for me.

Tomorrow I'm not running any "out of the home" errands unless I absolutely have to. I have a friend who's willing to do stuff for me if I need (my roommates are away for two weeks).

Am I excited? Yes.

Over the last 3 weeks I read the text for the course to lessen my workload during July. This has helped pull me a little out of the depressive pit I've been in.

And for some reason I'm not too worried about managing. I'm either going to manage or I'm not. I'm not going to push hard if I'm feeling unwell. But I have very little anxiety over it. I figure if I have to call 'er quits and come home, I will.

Accommodations are set up. Now it's just a matter of giving it a go.

I'm running a fever this week (over 100 two days ago, 99.5 when I checked today), but the flueyness isn't too bad. Right now I'm just exhausted, wiped, tired....

I think I really need to take it easy these last few days.

I'll try to post little updates in July if I can.

I hope all of you are well. I've been having trouble with comments on blogger so I've been posting comments that won't go through. I'm sorry....but I'm still reading some blogs when I can.

Wish me luck!

9 long years - a reflection

9 years ago today, I was headed out to pick up students arriving for a wilderness course. I remember standing on the deck of the main building before I drove to the airport and telling one of my then best friends and also my boss that something was wrong. I wasn't feeling well. Of course I hopped in the van and drove off anyways.

In the airport, greeting and organizing students I felt shaky - a kind of internal tremor pulsing through my body. The airport at times was spinning and off-kilter. I was sweating.

Five days later I had a diagnosis of Mono. My life has never been the same. Since that day I've never managed to work more than a few hours a week. I've usually been home-bound and sometimes bed bound. I've felt SICK at some level every single day. Enough time has passed that I have trouble remembering what a "well" body feels like.

In reflection of this anniversary, I thought I'd post my five biggest losses, five gifts of the illness, and five hopes.


LOSSES:

1. My career or the ability to have a job and support myself.

2. My social life. Most of my friends have moved on and/or live all across the continent. It's hard to make new friends when I'm home bound most the time. I'm rarely well enough to go out. I'd love to date but can't get passed the chatting online because I'm usually too sick for outings. Because I have no workplace (virtual), I don't have the daily social acquaintances of a work place. ON top of it all, I'm often feeling too sick to want to socialize anyways.

3. My hobbies. I used to climb, paddle, travel, run, dogsled etc. I lost most my hobbies.

4. My body. I miss being able to exercise. It was my main method of relieving stress. I'd love to spend a day not feeling sick like I have the flu or suffering extreme weakness after attempting a small task. I miss my "well" body.

5. Self-worth, self-esteem. I have a terrible time feeling like I have any worth. I was raised in a Christan household with the constant message that our role in life was to be "useful". That old Calvinian work ethic. And in part, I still believe it. Feeling like I have nothing to offer the world/others is tough...something I struggle with constantly.

GIFTS:

While I would have never chosen this illness and want it to go away today, there are things I have learned from it.

1. Empathy. I used to look at others who were struggling and sometimes assume they weren't tough, were just pessimistic, or not really trying. I was supportive outwardly, but my internal dialogue was often different. When I first got sick I thought I could will myself out of my situation and if nothing else "tough" my way through it. But time after time after time it didn't work. This has given me empathy for others. I'm less likely "blame the person" for things often beyond our control e.g. illness, poverty, etc. I no longer believe in "pulling up the boot straps". I know better.

2. Aloneness. I used to hate being alone. Mostly I was busy and active every minute. Now I can sit with long periods of silence and aloneness without being lonely.

3. New hobbies. Due to slowing down I found some other hobbies/interests including art and reading for pleasure.

4. The small things. I think I appreciate small things more. Things most people with busy lives don't have time to appreciate or notice. A flower/plant growing. People walking by the window. A rain storm. Watching a bird for 20 minutes.


HOPES

1. I hope I get well. If not, I hope I improve. If not, I hope I don't live a good long life because I can't do another 2 or 3 decades of this.

2. I hope they find the cause and some useful treatments soon so no one else has to suffer this illness.

3. I truly hope that most the medical community, a good portion of the media, and the general public stop treating this illness like a joke. It's a terrible, disabling, often life-long condition that gets little respect and almost no research funding. It's disgusting that this illness has been around as long as it has and this goes on. I want it to change.

4. I hope they change the name of this illness - and soon.

5. I hope that year 10 is better than this last one. I hope I find a way to both minimize my symptoms some this year and also improve my outlook/attitude because I'm feeling the strain of nine years sick.

upcoming aniversary

I am pondering my 9 year M.E. anniversary this week which has inspired me to post.

I've been away from blogging as I'm sure you've noticed. I think that the break has been good. In some ways there's just nothing new to say. I'm sick, it sucks, but there's nothing new.

There's lots going on in my life right now including my decision to attend a 4 week PhD course this summer (July) in Windsor, ON. It's not that I'm necessarily well enough. It's just that if I don't go this summer, I will need to do it next summer......and so on. I missed it last summer due to being relapsed. So I figure that the worst case scenario is that I end up laying in bed in a dorm room unable to attend. At least I will have tried.

I'm glad I'm going. I hope I'm able to pull it off. It's my final course of the PhD. If I manage it, then all I have left is my research (which is a lot, but easier to pace).

I have accommodations set up (basically the profs know I have an illness and that I may miss some classes or portions of classes). The next few weeks will involve doing as much prep for the course as I can.

I've been suffering some pretty ill, fluey days but also some better days. I have swollen glands (neck and armpits) again and some throat blisters. The days with the chest ache are worst. If I wake in the morning and it hurts to breath, I know it's going to be a rough day. I'm starting to wonder if the chest ache is actually swollen and/or painful lymphs in my chest? Just a thought.

The POTs (postural orthosatic tachycardia) comes and goes. I check it on and off (every few days I take my pulse resting then standing). I'm still dealing with plenty of dizziness mostly on standing - three blackouts today alone...but no complete faints. The blackouts are always if I'm trying to be a bit more active - like out in the garden pulling weeds.

Today my heart rates were 72 resting then after two minutes standing 116.
Later in the day 84 after 2 min standing 128. If nothing else, as the GP said, my heart is working hard just with the effort to stand - it's basically exerercise for me just to stand, crazy isn't it?

I'll post again on the 16th which is my M.E. anniversary.

What came first?

I'm not functioning too well at present.
I'm still feeling really fluy and "sick" and very fatigued.

On top of it, I'm having major issues with OI (Orthostatic Intolerance).
I'm wondering if the OI is causing me to feel worse or if the OI is worse because I'm so sick as of late.

What came first, the chicken or the egg - right?

I'm trying to figure out how mainstream an understanding of OI is with clinicians.

There seem to be many conditions where people experience a drop in blood pressure after standing (pregnancy, certain drugs, long periods of bed rest) so it's not unknown.

I saw a GP at my local clinic about black outs and a fainting episode yesterday.

I told him my specialist had told me it was OI at one point. She had done a supine and standing BP quite a few years ago and had seen at least a 30pt drop in systolic BP.

He checked my heart.

Then he had me laying down and took my heart rate (HR) and blood pressure (BP).

He had me stand up (I was leaning on the table a bit but he didn't say anything) and after 2 min of standing he took my BP and HR again. I was already dizzy but he said my blood pressure hadn't dropped at all. However, my heart rate had gone from 70 to over 120 in just two minutes with the effort of standing.

He speculated it's just my body working hard due to M.E./CFS.

Sue from:
http://livewithcfs.blogspot.com/
sent me some literature from Dr. Rowe at John Hopkins on OI and having read it I realize that this is something called POTS, which is a form of OI. And while the GP said that the over 50pt raise in HR probably wouldn't cause light headedness, the literature said otherwise.

Now I've got to decide what to do.

Canada's medical system is different than some countries. We all have equal access to care, but to see a specialist or to receive testing that is non-emergency you wait - often months.

At the end of the appointment I asked the GP if he'd heard of tilt testing and he looked it up. He said he wouldn't consider it (there is none in this city) unless I went through a bunch of other tests first. I'm often hesitant to do a bunch of testing that takes time and energy only to tell me nothing has been found. Also, from the pamphlet Sue sent me, it seems that a tilt test isn't really needed to diagnose OI anyways.

So, it seems that I could go through a bunch of cardiac testing that will take months, or wait for my specialist appointment in August. She is familiar with OI and could treat me with no tests at all. It just means I have to deal with fairly severe symptoms for 2 1/2 months with self treatment until then. (Although hopefully they improve on their own).

I'm guessing either route will take about the same amount of time, but one route will involve a huge energy output on my part at a time when I'm quite ill and limited.

So this is where I am at present.

I'm going to think about it for a few days.

As for blogging, I may take a break for a while. I will still check in on the blogs I follow from time to time and I expect I will eventually return to blogging. I hope everyone is doing OK these days and thanks for your support over the couple years I've been part of this blogging community.

update - more OI

So after a 12 day MAJOR crash I'm feeling a tad better the last two days. Since I've had such a terrible Winter and Spring, it's almost like it wasn't a crash, more of a long, seemingly endless flu.

I think partly my system is just so run down from the disease right now, that I'm crashing much more easily. Yesterday and today I was able to sit outside a bit and pull a few weeds in the gardens. Yay!

This is the time of year where I tend to pick up. I'm hoping this is it, and that I climb back up to where I was last fall - which is mild moderate M.E. (a couple hours work at home most days with a few outings a week under 2 hours) instead of mild severe (housebound and laying down most the day).

I saw my NP today and we discussed the dizziness and possible OI (Orthostatic Intollerance). She checked me in the office (sitting and standing) and there was only a 2 or 3 point drop.

However, I'm still pretty sure the black-outs are OI as I've had OI symptoms since the first year of M.E. They get worse when I'm crashed which I have been.

Now I have to see a Dr. this week (at my clinic) which I'm not looking forward to. Anyone have any good literature on OI and M.E. from a reputable source?