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?

Holter monitor w/ blood pressure anyone?

Has anyone done a 24 hour holter monitor test with blood pressure? Will this detect Orthostatic Intollerance(OI)? For some reason I thought it was detected through tilt table testing.

I went to the walk-in (which I absolutely hate doing) after 10 days of pretty severe dizzy spells on standing or with activity.

The Dr. saw a fluid build up in my ear which explains the dizziness on moving.

My blood pressure sitting was fine, however, he thought I could be having spells of blood pressure decrease on standing.

I'm just wondering if anyone has had this test done and for what reasons?

The reason I ask is that if this test won't detect OI, then I don't want to bother with it.

The glass box

I've been quite crashed since Saturday.

Very very fluy and weak. I've been needing at least an hour of rest after a bath. I had to sit on the floor and take breaks while folding laundry - that kind of crashed.

The OI (Orthostatic Intolerance) has been pretty bad too this week with frequent dizzy spells and multiple blackouts and near faints.

The Valtrex is causing some mild dizziness and some mild headaches.

Lots of bed time - and bed time without reading and computer....just plain rest. Probably 90% of my day horizontal presently.

I'm frustrated with being sick and just feeling so ill.

I caused this crash (I'm pretty sure). Last Saturday I went in the back yard where we (meaning my housemates) had done some major construction on the house last summer. There's all sorts of cement chunks that need to go to the dump and it's "free dump" week. On top of it all, one of my house-mates just found out he has a heart condition. So I thought I'd help by just separating a few of the smaller cement pieces from the dirt pile. Really they were small pieces, it was nothing too dramatic.

After doing a few I started getting the dizzys. I would lean down to get one and just black out so I figured I should stop.

If you have M.E you're probably thinking "Why would anyone with M.E. do such a thing?" "What was she expecting?".....sigh....I guess I just wanted to DO SOMETHING. Something to help and something even a little physical. I'm sick of living in the box.

My specialist uses the analogy of M.E. being like living in a glass box. As long as you live in the little glass box (the walls are your limits), you can do OK and avoid most crashes. However, if you try to push past your limits, breaking the walls of your box, you end up getting hurt. Well sometimes I guess I just want to smash the walls of my box all together.

Illness and self-confidence

Yesterday I found out I won an award. It's a two year PhD research fellowship from the Canadian government organization SSHRC (which stands for the Social Science and Humanities Research Council of Canada).

Of course I'm very happy. Honoured. Exited. Any way you look at it, it's a good thing.

In some ways it solves some of my issues. It's enough money to both pay tuition and live on. (Live on just, but most of us who have been scrounging and getting by on social assistance know how to live the frugal life).

I'm not sure if I will be removed from social assistance as a result, I have yet to make that call-but either way, I'm going to take the fellowship.

If I loose my social assistance and am still not well enough to make a living in 3 years, I'll just have to apply again. In the mean time, it will feel good not to be living off the government (although this is a government fellowship? hmmm).

And if I don't loose the social assistance, I'll be living above the poverty line!!!!!!

It also means I won't have to do a graduate assistantship this year. Although I've rarely had to work even near the 10 hrs a week required, the few hours I have worked will go towards PhD progress instead.

After getting the letter yesterday, phoning and emailing some people with the news, I realized I felt sick and needed to rest. Funny, getting a SSHRC didn't change the fact that I still have M.E and am sick.

In some ways I feel very undeserving of this award. Spending at least 70% of my day lying down, rarely leaving the house, feeling like I don't contribute much to society...it often makes me feel worthless.

Having spent a long winter mostly in bed, and for the most part house-bound, I find my self-confidence and self-worth is even lower than usual. Which makes it even harder to get my head around the fact that with all the amazing people I've met who are pursuing graduate studies, I'm given a fellowship???!!!! Like I said, it's hard to get my head around.

My plan: For the time being, continue with the PhD (instead of dropping out). However, I will continue to work only enough that I don't induce crashes. I will continue to work mostly at home and in bed.

I love that quotation, "the journey of a 1 000 miles begins with a single step". I will continue to take small, sometimes infinitesimal steps within the boundaries of the illness....and for now that's my plan.


HEALTH UPDATE: I'm tolerating the anti viral VALTREX well. Some minor headaches and digestive issues, but nothing unbearable. I'm up to 1 000 mg a day. I'll stay at this dose for the time being. However, I haven't seen much change in my viral symptoms. Sore throats, painful lymph glands, and low grade fevers continue, along with that feeling of illness and the chest-ache.

What I woke up to....

I woke up this morning to a snowy scene. A couple centimeters of fresh snow. It was beautiful and not unexpected for April. It's also supposed to reach 15 C and sunny this week. This is typical for spring in the near north.

I've been doing relatively well health-wise since overcoming my third cold virus of the winter. I've also been recovering from my trip south.

Overall, my energy has been OK with milder flu symptoms. I haven't been pushing it at all.

I wake up each morning and spend 1 - 2 hours working on my research proposal (in bed). It was due a week ago (thank-you doctor's note and subsequent extension).

Then I piddle around...rest in bed, eat a little, rest, watch TV, rest, play a game or two online. Not a very exciting existence, but do-able.

No side effects yet from the anti-viral - although I'm on an extremely low dose to start.

I was feeling well enough (maybe 50%) last night that I went to a one hour choral concert with my roommate. I made it through most of it, we left before the final number - I was feeling too wiped to make it all the way through.

Today I woke up feeling like I had.....well....M.E./CFS.

Similar to a very severe case of the flu along with weakness and the shakes (from weakness). Symptoms (throat, headache, painful lymph nodes, dizzy spells) are mild compared to the flu, but malaise (sick feeling) and weakness much worse. And it hurts to breathe (like I breathed in a lot of water) as per usual with a crash.

And immediately I plummet into depression. How do I endure another day of this? Really!!?? Seriously!

I talked to my specialist about being so down this winter and she thinks it's a case of what she calls reactive depression. She thinks if we can get me feeling better, the depression will also abate. It makes sense because on the days I'm not as sick, I am able to feel hopeful....its' just these awful sick days - days when I'm especially fluey.