Feeling Rough and Remembering my Sister.

You know, I've  picked up just a little in July.  Still, overall, I'm feeling sick and rough.  I saw my NP this past week and of course had to suffer a day or two crash just from the outing.  Ironic, if you ask me.  I have a medical appointment and am sicker because of it.

We did do blood work because I wanted to see if I'm anemic.  Not only am I sick and tired, but more out of breath and more lightheaded than usual.  I'm not anemic.  In fact, it turns out that the floridix and vitamin C have brought my ferritin levels into the normal range for only the 2nd time since I've been ill!!!

Lots of people don't seem to understand that low ferritin or iron deficiency does not equal anemia.  Anemia means that either your hemoglobin or red blood count is low.  The most common cause (but only one of many) is iron deficiency.  But you can be anemic for reasons besides iron deffiencny and you can have low iron or ferritin stores and not be anemic.  I have had bottomed-out iron or ferritin levels for over 10 years.  Still, I've only tested anemic once and that was last summer.

I'm pretty happy that my ferritin levels are a bit better (still on the low end of normal) but unfortunately it hasn't translated even slightly into more energy.  On the other hand, my NP did call to say my WBC (white blood count) is mildly low again at 3.8.  This is barely considered low, but it does seem to coincide with my sickest times.  Most Drs. wouldn't even bat an eye at this level, but for me, mildly low WBC and occasional neutropenia just seem to be part of the illness.

In other news, I also had my longest interview yet, which in the big scheme of things is good, on the other hand it was completely draining  due to my energy being so low.  I have now conducted 7 interviews by phone or skype for my PhD research and I have two more scheduled next week.  My hope was 12-15 interviews total, and I have 11 people committed, so that is progress.  Despite it being really hard work to do sick, I enjoy talking with people about their work as educators.  It's so nice to do something that takes me out of myself and my own little world.

A lot of the time I try NOT to think about my life with illness.  This is hard because there is little escape.  I have an hour or so in the morning where I don't feel too ill.  If I don't test myself during this time (e.g. keep my feet elevated and stay mostly resting) I can almost pretend or imagine I'm not sick.

Otherwise, it takes a lot of work to put my illness out of my mind because it is so potent and overwhelming.  I stand or sit up and am dizzy, it hurts to breath like there's an infection in my chest (how does one avoid breathing?), every night my throat is so sore, my armpits ache and throb (lymph nodes) and the fatigue and weakness and feeling of icky sicky are just impossible to ignore.

For most of us, at least eventually, life throws hardships and tragedy at us.  Some of us more than others.  I do not believe we choose a good part of our destiny.  Many things happen to us (like illness, loss, trauma) that we have no power over.  On the other hand, we can choose what to do despite all the horrible stuff.  There is a lot I can NOT do because I'm sick, but I can still choose what to spend time thinking about, how to spend my time while I'm laying down, how to treat my friends and family when I do talk with them, etc.

For some reason I've been thinking about my sister in this regard.  I am the 4th child in a family of 5. My oldest sister was born with Downs Syndrome and a weak heart. Then, when she was 2 she had a stroke.  She could walk and talk, but not well, she was partially paralyzed.  She always walked with a limp, couldn't run at all, or even walk very far, and one of her arms was not very functional.  Growing up with her (she lived with us part-time), I witnessed someone living with  a mountain of struggles and disabilities.  And yet, I think she may be one of that happiest, most joyful people I ever met.  Truly. She died at 19 during a hip operation.  Her heart failed.  I think I was 13 (8th grade) at the time.

For some reason lately, when I'm feeling sorry for myself, I think of her.  Not that I never saw her frustrated when she couldn't run or grasp something.  And it's not that I didn't see her sad when people were afraid or awkward around her because of the Downs Syndrome.  It's just that she spent so much of her time, despite all her challenges, happy.  I think about how I might be happier despite living with M.E.? How I might better find joy despite feeling horribly ill?  Ideas?

Wow, that was hard.

June was a really tough month.  While the weather has warmed up which means time sitting/resting out on the patio, I had little resilience and a lot of very sick days.

I've just been plain ill.  Same as any time I'm flared, really annoying viral/immune symptoms predominate  (e.g. my axillary lymph nodes have been sore and achy almost the whole month, my throat has been more sore than usual with more swelling and blisters) and the autonomic stuff has also been worse.  In fact, I managed almost a full faint last week (head rush/black-out enough that I fell, after bending over to pull a weed in the garden).

So I've been spending most my time in bed or on the couch.  I'm trying not to feel too down about it, but it's hard.  I just see how the years are going by while I spend them feeling sick, weak and beyond exhausted….not really living much of a life.  And because social (even telephone calls) are so draining, I'm usually alone and sometimes lonely.  This is hard especially because I used to be a pretty social person.  I was never a person who spent much time alone until I got sick.

Still, I have managed to plug away at small tasks the last couple months.  I hung my art show today.  I had a lot of help getting stuff ready, but it did mean a two hour outing so I am completely shattered again for who knows how long? Hopefully days not weeks.

I also managed to work 16 hrs on my PhD in the month of June.  Pretty pathetic, that's an average of 4 hours a week (less than what most working people do in a day).  On the other hand, it's more progress than nothing at all.  And like it or not, most the healthy people in my life seem to judge human worth based on human doing, not human being (hehe).  I felt the same way before I got ill.

Here's hoping July is a better month health-wise.  It wouldn't take much.

Looks Like a Busy Summer Ahead

First, the lilacs are out and the the air is full of their aroma.  Here's a photo from last year when the crab apple and lilacs bloomed at the same time.  This year, the lilacs came later maybe because it's been a cool June.

I have done three interviews for my research (PhD) recently.  Two on Skype, and one over the phone. For those who read this and have M.E., I'm sure you can understand how this could be exhausting. They really drain me even though I'm not doing much of the talking.

On the other hand, I think often about Laura Hillenbrand who has M.E. and is also mostly home bound.  As well, she suffers from periods of severe vertigo.  And yet she has written two best selling books - "Sea Biscuit" and "Unbroken" and researched them all from bed. While it takes her years and she sacrifices other 'living' to do it, it is pretty amazing.

I think if I were to do a PhD, I couldn't have come up with a much better project (interviews by phone). So really, I am going to (as best I can) 'suck up' the suffering they cause post-interview for the fact that come September, I will have 12-15 interviews recorded that will provide the basis for my study.

I dearly wish I still had some medical leave left, however, because I would preemptively plan to be off this fall.  On top of the research, I have my parents visiting next week, some travel planned this summer and just thinking about everything I am attempting with this sick body is exhausting me.

Speaking of exhausting, I recently had to crawl under my bed to look through some boxes I have stored there.  I realized that there are a lot of boxes in this house that could really use some purging.

Even worse, it brought home how many times a week I attempt to do something seemingly small and run head first into my limitations.  For example, I tried to pull a box out from under the bed and just being on my knees made me super dizzy with a semi black-out standing back up.  I also got the very weak arm problem trying to get out the boxes.  Then, a couple hours later, I got the internal muscle tremor/buzzing that seems to be a post-reaction to anything that requires strength.

So that's the physical post-effort effect, then the mental/emotional one comes sweeping in.  "I am so useless, why can't I manage to do anything, why am I so sick?" and feelings of being overwhelmed "I have so many boxes I should go through, there is so much should do, why can't I manage to do anything useful?".  I know some of these feelings are ones both the healthy and unhealthy get.  I seem to have a motor that's hard to shut down even when there are all kinds of signals that I should, and the repercussions are so bad that sometimes I want to die.

One thing I've been trying to do lately is be kinder to myself.  If I'm having a decent day I put 'crashing' out of my mind and tell myself "it's not so bad, why are you living off social assistance?  You need to tough it out and do more, think about working." Then a day later when I'm horribly fluey and crashed, "why did you do too much, can't you have learned by now that you are sick?" I'm trying to change those to "remember to take it easy even on these 'good days'.  It's ok to enjoy laying in the sun, it's ok to spend the day in bed, to rest and read on a 'good' day".  "You are still an OK person, even sick".  "you are still an OK person, it's not your fault you don't work".  It's really hard to change those patterns, though.

On July 3rd I hang my little art show, and to be honest, I'm feeling a lot of anxiety about that as well.  The internal voice keeps saying "my art is just not good enough to show".  I realize it is a very low-key show in a basement art-store gallery.  It's a chance for the art store's clientele to show - amateurs like me.  But I'm finding the whole thing embarrassing.  I in no way regret doing art, it's one thing that makes me happy, I can manage it in small doses and it distracts me from being ill.  On the other hand, I feel as if the longer I am sick, the more I am plagued by self-doubt.  I realize this is no way to go through life, especially when I have the extra burden of being so ill.

Speaking of art, this is my most recent print.  It involved three carvings and many drafts if you can believe it.  While it is very very simple, I do like the colours and feeling of misty twilight it portrays.  It's called "wolves at night".  Fitting eh?

I just had to do Something!

http://www.microbediscovery.org

Has anyone heard of this?

Governments and drug companies put so little money into M.E./CFS research that it's almost a joke.  Despite this, they love to spend money on coming up with new definitions for the illness every few years and sponsoring workshops without paying attention to any of the research that has been done, or turning to specialists who have the most knowledge about the condition.

Why isn't anyone doing anything about this illness? I was feeling so angry about this today that I donated to the cause above.  This very well known and respected virologist cannot get funding to study M.E./CFS because those who grant funds ignore the importance of researching M.E./CFS.  Instead, he's turned to crowd funding.  This study could be completed and perhaps published within a year if they could get the funds.  And I've been watching the amount raised over the last few months, and feeling really sad that they are not even a 10th of the way there.

I am so broke it's ridiculous, but I donated anyways. I just needed to do something other than stew.  If you are a friend or sufferer and feel you can donate even a dollar, I think it is a very worthy cause.  If every sufferer with M.E. in the U.S. donated one dollar, the study would be funded.

Tough Week

It's been a tough couple weeks.  I may have overdone it two or three weeks ago when the weather first got nice.  I actually managed to "black out" in the garden 5 times in one short session.  I didn't fully pass out, just lost 100% vision briefly with the head rushes. Definitely POTS/OI which comes and goes in severity.

On my Birthday last week, I had the sickest Birthday I can ever remember.  My main event of the day was talking with one of my best friends on the phone, we hadn't connected in a while, so it was a nice birthday treat.

The rest of the day I lay in bed or on the couch praying that the crash would end ASAP.  I did feel well enough to celebrate with a campfire in the backyard the next night - it was low key and perfect….and GF chocolate cake, I love chocolate.  Then I had another horrible horrible day where every bone, muscle, and cell in my body felt poisoned, weak and depleted (M.E. crash).  It has continued like this, a couple OK days, a couple horrible days.  I can't tie it all to overdoing it activity wise just because I've been taking it pretty slow and easy all week.

Two summers ago low ferritin and digestive issues led to mild anemia, so I'm going to get that checked.  The nearest appointment I could get with my NP is a MONTH away, jeez!!! Can you believe that? They suggested a walk-in clinic but there is no way I am going to waste 1/2 day sitting in some room with a bunch of sick people.  It's not worth the crash and exposure for the off-chance I have anemia.  I'm already treating myself for chronic iron deficiency either way.

I've been home bound now 8 days straight, but it's not near as bad as being home bound in the winter, just because I can still sit and lay outdoors and we have had some beautiful days here.  Sunny and warm with a cool breeze, my favourite.  Small, but important blessings.

Uninspired

I try to post a blog entry about once a week.
But lately, I feel at a loss for anything new to say.

M.E. is with me every day, but illness wise, nothing seems to change all that much.  I live with it as best I can, or perhaps live despite it as best I can.

I am not pursuing any avenues to improve my health at present.  This is a good and bad thing. Good, because I'm not setting myself up for any dashed hopes (again), on the other hand, I feel no hope about my health improving without some kind of treatment.  The M.E. has thrived in my system for almost 12 years, and I expect it would take something pretty big to shift things.

I decided to go off the midodrine (POTS med) as the side effects were so annoying, and I couldn't get my dose up very high. The low dose was improving things a little, but not enough to stick with the side effects (weird tingling sensations, goosebumps, shivers, headache).

I have a prescription for Hydrofloricortisone which I will try before I see my cardiologist in October but I wanted a break from drugs for a month or so.

I have been setting up interviews for my PhD research which I will do over the phone or Skype during June and July.  I'm hoping that I can schedule them so that they don't cause my health to decline….I think I can if I'm smart about it.

I did two outings over the last two days and yesterday, my throat was so painful, bloodshot and red I was sure I had a virus.  But no, it was an M.E. immune flare due to overdoing it.  I really seem to do best with only one outing of around an hour a week, or at least 3 days between outings.

On another note, I finally chose a name for my upcoming show of my linoleum block prints "under boreal skies".  While a little cliche, I think the name is fitting.  Showing my prints feels akin to being naked in public.  I am by no means a gifted artist, it is just something I love to do, and even more important, something I can manage to do during my good hours.

Here's my print of the week….although the final block sat around for at least 2 weeks before I finally printed it.  The bird is called a whiskey jack, grey jay, Canada jay.  It was inspired by my outing in the previous post where I sat in the mossy spruce grove and the whiskey jacks came by to check me out.  They are brave and curious birds and have always been a favourite of mine.

I also wanted to share an interesting study I just read (but didn't fully understand) about how those with M.E. and M.S., but not healthy controls have trouble maintaining neuronal structure: http://omicsonline.org/open-access/brain-derived-neurotrophic-factor-is-decreased-in-chronic-fatigue-syndrome-and-multiple-sclerosis-2155-9562-S12-013.pdf

Also, a fellow M.E. sufferer just recently started a blog.  I love her writing but especially her drawings…they are so telling, they hit the nail on the head: http://tangerinebeak.tumblr.com