I'm exhausted

I had a fairly relaxing uneventful Christmas, which was nice.
We did a meal with my dad, and Christmas Eve I set up an online church service for him so he could "attend" his old church.

Since Christmas, I've been getting ready for the course I'm teaching online this winter, I'm feeling close to being ready, and I love having something to do that feels productive and will earn me a little money.

However, in general, I'm finding a lot of things exhausting. For one, I've had problems with my right shoulder for quite a few years. It hurts at night in bed and sometimes I wake up and the pain lingers.  A few weeks ago it also became an issue with my left shoulder, leaving me no side comfortable enough to sleep on (and subsequent insomnia).  One day the week before Christmas I woke up in so much pain I was at a loss.  A friend who is a massage therapist saved me and squeezed me in for a session which helped.  She said one muscle was in complete spasm.

Since then, while it isn't as bad as it was for a couple nights there, the pain and sleeping issues remain.
I will eventually (I guess) have to figure out what is going on, as I can't afford another massage.

So I've been sleeping fairly poorly, and also feeling a bit depressed.  It's just that often my world feels empty without my mom in it.  I don't miss her every minute but daily things make me think about her, and the holidays have left me feeling an aching longing.

Also, because I've been sick for so long, I feel as if my life has meant very little these past 14 years.  I'm tired of not being able to do most of what I want to do.  I'm tired, literally tired, of feeling so drained and weak and exhausted.  I'm tired of being so poor.  Yes, I know it could be a lot worse, but sometimes I just wish I had a little more.  As it stands, every cent goes to paying the bills and I'm left wondering how I'll manage it again next month.  And how will I when EVERYTHING goes up year after year (property taxes, hydro, water and sewer, gas, cost of food) except my disability check?

I'm also feeling exhausted by social media.  A constant barrage of people posting about political stuff and/or world crises, or on the other hand, post after post by people I barely know showing them out doing activities with friends and family, honestly I'm jealous.  Alternatively, in my M.E. group, so many people are in such rough shape and struggling right now, I'm just fatigued by it all, it's too much.  I'm considering just taking a break from social media.

So on this depressing note, a new year approaches.  I want to make the most of it, continue to work a little part time if I can swing another contract or two, create some art, and this summer may be my final one to do agility with my dog (she'll be 9!).  I have been sporadic and yet persistent in participating in this activity and it's been extremely challenging (at times ridiculous) to work within the physical limits placed on me by M.E. and POTS, but I refuse to give up something else I love...I will try to eek out ways and moments to do agility one final summer.

Back to the "feeling stuff", sometimes I think I'm too sensitive for this world.  I "feel" things so deeply.  Joy yes, excitement and happiness, yes, but also deep and overwhelming sorrow, sadness.  Empathy can take me down.  Loneliness too.  I try to be tough, but I'm just not.  I think being ill and having a lot of time on my hands where I'm just resting doesn't help.  A month or two ago I saw this YouTube with Mayim Bialik and you might appreciate it if you are one of those people who like me, feels things deeply: https://www.youtube.com/watch?v=IBv6uFB-lOI

Maybe being sensitive is a super power?!

Happy Holidays!

Happy Holidays!

While Christmas and New Years can be a great time to enjoy friends and/or family, for many, they can also be really difficult.  The issue I hear most from people who are disabled (even partly) by chronic illness is that the holidays come with so many expectations.  Expectations to buy gifts, to participate in far more social events than normal (even if it is in your own home).  I've heard more than one person with M.E. say how it seems as if family and friends expect their sick family member/friend to all of a sudden be more functional during the holidays (for no apparent reason).

And then there's the crashing.  I crash every....single....Christmas.  For many years this was due to a combination of travel and visiting family.  I push too hard every holiday, (and probably appear fairly well to others) but then later pay the price with a good 'ol M.E. crash (which is a lot like influenza with milder symptoms but more disabling weakness).

Anyways, on the positive, since my trip to Minnesota and a short crash, I've been doing fairly decently, doing things to get ready both for my course in January, and the holidays.  I also had friends over to do art.  However, two days before Christmas I am now crashed!!!! Pretty badly crashed. The timing just sucks, however, I should have known better than to go over-board the last few days.

Whatever your holiday brings and whether you are healthy or not, I hope that you avoid putting pressure on yourself due to your own or others' expectations.  I hope you can find some time for friends, family and even a few moments of peace in the coming weeks.

Here's my last print of 2016 - Juncos.

Insidious

It just never seems to end, this disease is so chronic. I over did it all week.  My dad had two Dr. appointments (Mon. and Thurs.) across town.  I find driving utterly draining (and crash inducing) but I also don't think he could ever find these places on his own...and he needs an advocate, so I went.  Wed. I had my own appointment at the University and Tues. someone interviewed me here (I'm being featured with my printmaking in a local arts and culture magazine).

Overdoing it does have it's consequences, no surprise. I am so exhausted and feeling ick (like that weak fluey sick feeling) there are no words to even describe it.  Just walking to the kitchen and back I'm out of breath and utterly exhausted.  This illness is insidious and life-stealing.  We live, but always with a layer of heaviness and weight, through a thick film of horrid.  And yet "I look great" (I heard this again just last week).  No healthy will ever "get" it.  I am so so so so tired, feeling so awful and exhausted. Oh wait, I may have already mentioned that. Sigh.  Thanks for "listening".

I want to do Christmas, shop for people (too sick, stores make me weak and dizzy), decorate my dad's suite (too weak and sick), bake some stuff (too tired), work on preparing my course (I will do it tomorrow), call my brother (tomorrow, too tired and weak to visit today).  You get the idea.

One of the tricks surviving day to day feeling like this is telling myself I don't actually want things to be different, accepting that sick is just my life...On that note, I think I'll go watch a cooking show.

Home Sweet Home - Busy

Well I made it home, and then had a 3 day decent spell.  I've been taking care of all sorts of sorting and organizational stuff at home.  Honestly, I think I mostly just moved things around, but the fact that three bags of trash went to the curb tells a different story.  My house is quite small (although plenty big enough for two people).  This means I can't collect a lot of junk or store stuff indefinitely if it's something I'll never use.  The exception is books, there are books everywhere (and I did get rid of a bag of novels).  I also brought books, some dishes and blankets, and 3 boxes of my mom's files and collectibles from my parents' house that I still have to sort through.

On top of my manic (well 2 or 3 hours a day which is  a lot for a sickie) organizing, I opened an Etsy shop which is keeping me surprisingly busy.  Then of course my dad is calling or visiting often.  To make life even more exciting, my brother C, who has a psychiatric illness and was living on the streets after my mom died first disappeared, then ended up in the hospital (in southern Ontario).  My healthy brother B. and his wife (since I'm my dad's care-giver) wanted to have my ill brother C move near them rather than have me take on another family task, however, my brother C. has been calling me multiple times a day from the hospital which is draining!!!  Also, I can't help but worry about him, he has so many issues (mental illness, drugs and alcohol, etc.).

Then, it was the anniversary of my mom dying a year ago on December 2nd.  I had wanted to take the time to do something in tribute to her, but in reality, a FaceBook post with some photos is all I did.   I do think about her all the time and was hoping someone would connect with me through that post and share memories.  Unfortunately of the people who are closest to me, most didn't really know her so couldn't say much. For those who did know her, life goes on, people have their day to day lives and I don't think they grieve the same as close family.  My remaining family don't have the desire and/or ability to talk about her and share memories.  Maybe I'll call her sister (my aunt) who is still living.

The final thing on my plate is a course (online) I am teaching in January.  I should be getting it ready, but haven't done much and time is ticking.  This week my dad has two appointments but I'm hoping otherwise I can dedicate some time to polishing it up.  It's the same course I taught in the summer but over 12 weeks not 6, I think it will be about the perfect amount of work.

If I could only find words....

I know words will never be able to come close to describing how horrible this disease is to experience, especially the crashes.  Today "holocaust of the body" popped into my head.  I feel so ill and sick and fluey - every cell screams for lack of energy.  It is too much to even stand up, like torture.  I want to curl up in a ball in bed and have it done with.  But this too shall pass?? My brain knows this but it's hard to convince my body of it.

I am visiting friends in MN for the first time in more than two years.   This is due to dealing with my mom's illness and passing a year ago and the subsequent family upheaval. Also, my own health situation which makes even riding a few hours in a car daunting.  Right now I'm crashed and I wish I were home suffering in my own bed.  I hope my friends who read this are having a better day than me.  I'll post again when I'm feeling better.

A few photos

I thought I'd share a few photos of some outings from the last month.  I took my dad to a local waterfall on a really sunny Sunday and crashed horribly afterwards (from driving mostly).  I also made it to my favourite local park with a creek in October.  Also, I'm sharing my recent relief print, I'm really happy with it.  It looks better (as all the dark ones do) on a screen due to the back lighting.

Very brief update

I've had some very decent weeks and some pretty bad/sick ones.  Just yesterday and today the weather has been WAY above normal temperatures for early November, so I've over-done it both enjoying the sun, and getting winterizing tasks done.  This year, I'm not looking forward to winter.  I hate being cold (I'm always cold) and my home is draughty.  When I wasn't ill, I could get outdoors and be active in the winter enjoying the amazingness of it all.  No longer.  My joy/passion for winter has gone down hill.

As you know, one of my pet peeves about the media and their portrayal of M.E. is that they continue to reinforce the misconception that it's about being tired, therefore it can't be that bad and/or the average person can "know how it feels".  Truthfully, it's a lot more than being tired.  I think "weak" is a better descriptive...however, more importantly for me, over-doing it causes pretty significant influenza (aka SICK!!!) symptoms - sore throat, swollen glands, achy icky feeling, weakness, dizziness, chest/breathing ache.  This is something that is unique to M.E.  Healthy people don't get sick/worse from activity, and the studies that have been done show that other chronically ill people don't get worse from activity...however, people with M.E. do.

Therefore, I was very excited to see this report on Medscape no less!!! talking about four recent studies showing some of the biology of PEM (posts exertional malaise).  Even if you don't read the article, look at the title!

http://www.medscape.com/viewarticle/871482#vp_1
or try:
http://www.medscape.com/viewarticle/871482

Meanwhile, I also saw two quotes from Drs in the media this week saying "we know almost nothing about the illness" while conversely at a recent international conference on M.E. another Dr./researcher said "we now have over 9000 studies showing biological abnormalities in M.E.".....hmmm something just doesn't seem right.

So while the story in the general public seems to be that it's about being tired, and we know almost nothing, the reality is that 9000 published studies show people with M.E. suffer from  dysfunction involving the immune, and autonomic nervous systems as well as metabolism, that is made worse by activity.

On another topic completely, I've just finished my own paper and submitted it to a journal for peer review about my PhD research, so I've been plugging away at that.  Also, I have a new art piece I will share here in the next couple weeks...I'm very excited about/happy with it, which is a rarity for me.

Nothing in the Tank

It's like there's nothing in the tank.  The "car" won't start.  I get out of bed to do something and last less than a minute.  I try lifting my arms to do something like brush my teeth, it's like every cell in my body is poisoned and dead, nothing to give.

How do you participate in life when you can't find the strength and energy to stand up for more than a few seconds? When even sitting up is beyond exhausting, the only thing going through my head when I'm sitting is "I need to lay down, I need to lay down, I need to lay down".  My chest is so heavy and sore and infected it aches every time I  breathe,  swallow, talk.

This is not laziness people, this is not in the least bit about motivation, this is not being down or sad,  this is about a body that does not, cannot seem to produce energy.  There are no words to describe this. Perhaps the fatigue and exhaustion of mono, or influenza...nothing else comes close.

I'm crashed.  I did too much on the weekend.  I did an outing with my dad on Saturday, we had a Thanksgiving meal here on Sunday (and I cooked a fair bit of it).  Sometimes I can go along doing some little things, some living things, but then the repercussions come: I'm crashed, which means broken.  I live in a broken body.

I know if I came down with a terminal illness right now I'd say "I'm done".  I'd give into it.  I had 31 good years, followed by 14 sick ones.  Not that there hasn't been good things in these last 14 years, but I'm so exhausted from living in this sick body.  Sometimes it really isn't living at all.  It's watching the shadows on the wall, laying in bed or on the couch for hours and hours alone, too weak and sick and exhausted to do anything else. I'm tired of it...I don't want to do it for 14 more years.  I don't want to feel this ill for even one more year.

Given it was Thanksgiving yesterday I'll say this, I have things to be thankful for.  I am very thankful I have my roommate/friend S. in my life. I am so very thankful I have my dog Teagan who keeps me company almost all of the time, providing companionship and entertainment.  I'm thankful for all my many friends I've had throughout the years.  I'm (sometimes) thankful for having my father nearby, where I can help him out without a huge amount of strain on my health (although sometimes there is, like last week).  I'm thankful I have a home to live in, an awesome backyard to tinker in or sit out in when the weather and my health cooperate.

On a related note, if you haven't seen any reporting about this study that showed people with M.E./CFS have a metabolic signature similar to invertebrates in a hibernation, you should take a look. "What?! our metabolism is malfunctioning? Could you find anyone with M.E. who'd be surprised?": https://www.sciencedaily.com/releases/2016/08/160829163253.htm

Vacillations

There's nothing like a paddle on a peaceful morning lake.

I seem to be going through vacillations with this illness.  I'm doing more, or suffering through so I can do more "living", then I'm crashing and burning so that I have periods where I'm in really really bad shape.

Right now I am in a crash again.  This is because I pushed myself so I could go camp on a wilderness lake for a few nights (see pictures below).  I had someone drive me to said lake, but still, it was way more work than I'm used to physically.  Also, I'm getting a little tired of camping alone, despite that it was amazingly beautiful. One time, it would be nice to go out into the bush/wilds with friends for a few nights (and not just so they can do the work for me :) )

Since the camping, I feel horrid again, like a huge rock sits in my chest, it hurts to breath, my muscles ache like with influenza, I have a sore painful throat, and I am....dare I say the word "tired", but not the normal tired, the M.E. tired - completely shot, no energy in any muscle, I can barely lift my arms.

And despite the crash, guess what I had to do today? Change and launder sheets.  It was too much, I deserted my dad at the laundromat and told him he'd have to finish up. I came home and crawled back into bed.

The bug issue is mostly gone, but because no one has been on top of his sheets, I found blood AGAIN!!!! F%$#$%%^!!!  Looks like just one bite, but it means there are a few bugs still lingering in his suite despite the fact the place keeps saying "we kicked them, they are gone".  I've found evidence of bugs twice since they've said this...and I am past wanting/feeling up to dealing.

I haven't worked all month, haven't lifted a finger to earn a single penny.  And twice I've postponed my meeting with the professor I'm going to do some part-time editing for.   Well to be fair, she hasn't really felt up to handing stuff over anyways, she's swamped.  I want to remain a sloth for the rest of my life.  My dad's suite is already a part-time never-ending job, at least from the perspective of disabled sickie.

The friends who dropped me off, took a turn on the beautiful cliffy lake.

I sat on a rock for at least 90 minutes watching this sunset, it was amazing.

Fall-Out

I'm not sure why I'm not pulling out of this most recent crash, it's been six days. Perhaps it's all the extra activity I've engaged in with my father's infestation.

Two nights ago, I even slept for 12 hours! On top of it all, my motivation is very very low. No motivation to do art, read, watch TV, work on my paper, etc. etc.  I feel so rotten and sick, I almost wonder if mono has reactivated.  I know there is debate in the medical community about this, but it sure feels viral on top of crashed.  No point in going to the Dr. though, I'm well aware that they are useless.  "Suffer through" is my only choice.

I'm just so sick of M.E.

My dad still has some lingering bugs in his suite and they are saying they wait 21 days after spraying to do it again, even if there are still bugs!! This is frustrating and annoying, but to be honest, I'm too wiped out to deal with it all.  We've been changing his sheets every two days, even going over there that often is perhaps adding to this crash.  I wish I had something positive to write here.  Perhaps I'll post a picture of my awesome dog.

Chronic Illness: A Lonely Path to Walk

Beautiful Lake Superior beach

Warning: complainy post

Well my dad is moving back to his suite today after 2 1/2 weeks of living/sleeping here.  He has gone back to his "very needy" phase most of the time, and I'm embarrassed with how frustrated I get with him.

I am SO SO ready to have my bed and space back, to watch what I'd like on TV (not at volume 50 which just hurts my brain).  I do love my dad (a lot), but am not a good caregiver.  I'm impatient with having him constantly on top of me.  I know I should savour every moment with my dad, but this just doesn't seem to be the reality.  Instead I am often frustrated and overwhelmed.

There is lots of work to move him back in, hopefully I can get some of it done today: piles of garbage bags full of clean laundry, vacuuming to do, reorganizing his closet and dresser (hanging and folding), moving in the new bed and box spring etc. etc.  Yes, as you can imagine, not great for someone with M.E.

But I've learned over the last year plus that really it doesn't matter much that I am sick.  My parent's needs trump mine.  And if it adds more layers of ill health and suffering to my life, that's just the way it is...it doesn't matter except to me, because I have to suffer through the subsequent crashes.

This sounds harsh, but it's a truth I've recently learnt.  In some ways having to "push through" more the last year and a half has been good.  I've found that I won't totally relapse (or haven't yet) and I now understand that the added layers of sickness and crashes really don't matter in the big scheme of things.

At some level we are all alone in the world, and I've come to see the absolute reality of this lately. Having M.E. just makes that aloneness worse, because we who suffer from it have to navigate all life's tasks with the equivalent of influenza or mono much of the time.  And yet, there is no treatment for us, no acknowledgement from the medical profession we are ill, no specialists (not a single one left in this province). We don't look sick so there is also little awareness of our constant struggle and suffering from friends and family...unless we complain (which I try to avoid except on this blog).

After some recent tasks, I've crashed so hard I can't lift the book I'm reading without my arms shaking, but that just doesn't matter.  Some days I've crashed so hard I can't walk across the back yard...and so what? Recently I spent 8 days barely out of bed at all, so ill I just wished my life would end...and does it matter? My dad still needed help with his finances, needed a bed bug cover for his bed, and there was no one else to help him get it.

Being chronically ill, living constantly in a sick body, is a very very lonely path to walk.

I do realize I have helpful people (friends) in my life that have saved my butt multiple times over the last year. I'm very very grateful.  But still, I feel as if the amount of tasks/burdens I face while disabled and sick is at times ludicrous.  Like having my arms and legs together,  a heavy brick attached around my neck, and being thrown into a pool, being told to swim. When I manage to keep  my head high enough in the water to breath (aka not drown/die) I'm told "see, you can do it, you're swimming". I don't want to be sick and drowning, I want to live.

However despite my bitc&*ing about feeling so alone with my struggles, I have fit in a little living recently too.  First, my wonderful amazing friend and housemate took me camping for a night to get a break. I was supposed to have a little break/holiday after my 4 month push to plan and teach the online course, but then, of course I had this emergency with my dad.  So we went away for a night  (deserting him here at my house) and camped at this campsite that had it's own private beach on Lake Superior.  While it wasn't the planned week away I'd been dreaming about for months, it was still incredible.  I crashed some after, but it was worth it.

Love these rugged "private" beaches

Also, my brother's family is moving back across the country (from B.C. to Ontario) so on his drive, he and his family's golden retriever stopped here and stayed for a 2 day visit.  Imagine 4 people and two golden retrievers packed into this tiny house! It was crazy.  We took my dad on an outing (since I had my brother here to drive) which was really fun, we also had a bar-b-q, and I made my brother do 3 bags of laundry/decontaminating at the laundromat.

I am honestly so glad to be done teaching my online course. It ended up being harder than I thought it would be, due to some challenging student issues.  This fall I will be back on disability (mostly) earning a little of my own way doing some editing work for a professor.  This should be more doable than an intensive course.

As for the M.E., while I have been struggling with some pretty bad crashes (from doing too much over and over), I would say when I'm not crashed, I am slightly better overall health wise.  I feel very nervous to put this into print, as I'm afraid once I say it, I'll have a terrible crash or relapse (superstitious, I know). Late summer, early fall have always been my best time of year. I'll take it right now.

I had my brain/head MRI this week, and having had MRIs on my pancreas, I thought I would be fine. Unfortunately, because they put a little camera thing around (close) to my head for this test, I actually freaked out less than a minute in, and had to ring the buzzer.  My heart was racing and I was shaky and panicked.  It was horrible.  I did manage to go back in for a few minutes, but will never agree to that test again.  I certainly hope that my scan was clear.

Another Nightmare

So last Sunday I wrote: "On the positive, I won't have to run anywhere at the drop of a hat this year, I can rest and recover at home and hopefully pull out of this extended crash/relapse."  So much for being positive/optimistic and thinking I would have some time to rest and recover.


On Monday my dad was here (he stops by most days) and said he needed to flip his sheets around because of all the little blood marks.  I reminded him AGAIN that he has two sets of sheets and could take the dirty ones off and put them in the laundry and put the clean set on.  He said, "Oh no, I will just flip the bloody section from the head to the feet."


So despite feeling so horrible I had thoughts of wanting to die running through my head, I dragged myself over to his place to change his sheets.  Then I noticed bugs on his bed and the skirt of his bed (I won't go into gory details but three phases of bugs including larvae).  It turns out there was a bed bug infestation in his bed/suite and he's been a feeding ground for them for months!!


Next, I reported said infestation to the staff and was told immediately much of the issue is the renter's responsibility.  I was too weak to even lift a bag and was told "then find some help".  Being mostly home-bound I have few friends, and my roommate/best friend was away.  My 86 year old dad had to haul garbage bags full of clothes (everything fabric in the suite except the bed and coverings which were disposed) out to the car.  He got help from an elderly man with a walker!!!  Talk about feeling pathetic on my part.


I came home and just cried my little heart out because I was so horribly sick/crashed and overwhelmed. I messaged one of my dog training friends (more of an acquaintance) and we called in a few other people from the dog group and they came and picked up me, and 6 garbage bags full of stuff. We went to the laundromat and laundered it all in hot water and a super hot dryer and they even folded it all. Now bags of his decontaminated stuff are piled in corners of my house.

My dad also had to move into my house while they fumigate his bedroom.  They told me for a few days, then for a week, now they are saying 2 or more weeks. So I can't live in my room until they finish the fumigation process.  I live in a 720 square foot house (there is semi finished basement where my housemate lives, we share the kitchen). The bed in the tiny spare room is too high up for my dad to get into, so that is where i am camped for now, it's not a bad room really, it's just not my bedroom. He is here most the day, but still going over to the dining room at his place to eat most his meals, because cooking him 3 meals a day is beyond me (and anyways, he's still paying rent).

It is all very frustrating and disheartening. His place seemed so clean and nice and safe.  I'm frustrated no-one else caught this issue earlier.  I'm also VERY frustrated that they are insinuating he must have brought them with him in his bed.  He's had that bed for years and there was no issue until he moved into this suite at this residence.  They have admitted it's not the first case of them this year at the residence, not to mention other residences and hotels in this city have been in the news regarding bedbugs the last year or two.

My day to day life is now a lot more challenging.  I have trouble coping with him constantly as he follows me around this small space and is very needy, and it's not like I go to work and can escape. I'm home almost all the time resting and doing my own thing.  I will survive, but life just really sucks right now.  It's bringing back all the traumatic incidents of last year, when I was thrown into being the main caregiver to two parents while ill myself. I thought that was mostly in the past, and that I was down to a do-able level of care.  Wishful thinking.

Crashed

Well it finally happened, a sustained crash.  For most of the summer I've been going along with a crash day or two here or there, thinking "I really only have a mild case of M.E." (mild is often still disabled fyi). Then I did a dog event last weekend. Monday arrived and I didn't feel too horrible, but by the end of the day, the carpet slipped out from under me, I was just so so weak and fluey.  Unfortunately, I haven't had a good day since (seven days running now).

I keep waking up each day wondering if I will feel any better/stronger, so far, not so good.  I am not completely bed-bound, but can't sit up for very long (unless my feet are up) or stand for more than a minute or two.  I am just completely wiped out. I've had a lot of days where I can barely lift my arms. It hurts to breathe. I've had a headache (I am not a headache person) for two weeks running now.  Not really much else to say about being crashed, if you have M.E., you already know.

Finishing up this online course has been really challenging, especially doing it while fighting the equivalent of Mono, but I'm nearly there, which means I can hopefully just shut my brain off and rest for a couple weeks.

It's amazing to me when I'm having better days how quickly I put this horrid existence out of my mind. I tell myself "it really isn't that bad"...then I have a week like this! It really is this bad.

Last summer at this time, I got an emergency phone call and headed down south to help out my folks when my mom initially went into the hospital.  On the positive, I won't have to run anywhere at the drop of a hat this year, I can rest and recover at home and hopefully pull out of this extended crash/relapse. On the negative, my mom is no longer around to go help, which is really sad. If I had to do it again, I certainly would. What a heart-wrenching traumatic year it's been.

Here are some photos from my front garden which is full of (mostly) native plants.  It can look sparse at times and unruly, but late August is a good time of year for these gardens.

Swamped

I am hanging in there, still sick (of course) but not relapsed.  Decent okay days and horrible days, but luckily just crash days.  We celebrated my dad's birthday last week, and I still help him manage life on a daily basis.  He is hanging in there too.  I'm happy he's nearby, but sometimes being his main companion takes a lot out of me.

I came across this article not long after my mom died.  I saw it again today and started crying...it's a really good to read if you've lost your mom (or a close loved one): https://www.theguardian.com/commentisfree/2016/mar/03/we-dont-lose-our-mothers-reality-more-violent-that-that?CMP=fb_gu

My course finished yesterday and I have a week to mark all the assignments and get my grades in, it will be a challenge.  I'm so glad this is almost over, I took on way too much with a six week condensed course, even an online one.  I am not well enough to manage it.  I'm sure I don't need to justify this fact to this crowd (thankfully). Right now things are "spinny" and "off" just looking at this screen, my brain is past processing today. Not that there haven't been good parts, there have been! It's just doing something this intense is too much given my health.

The past week I've been mostly living on the couch watching a lot of Olympics.  I invented a word for the hours I'm spending in this semi-vegetative state.  I call it Olympitose, get it? :)

Life Can be Hard

There are debates about happiness.  Some scientists will tell you that a good part of it is genetic, or biological.  Are some of us just programmed to be more happy, to take a rosier view of things?  There are so many ways to look at it.  I read one study recently that looked at a connection between money and happiness.  This study found that wealthy people after a certain number (it was under $100 000) aren't any more happy than those with less money, however, there was a cut off. So those who live in poverty did have less happiness (this is no big surprise, when I was struggling this year to pay my bills, it did add a layer of stress to everything else).

So why am I writing about happiness? Because I'm wondering why I'm sad so much of the time lately.  Why does life feel so hard/difficult and empty? Why, out of all my whole family, am I the only one who seems to be mourning my mom?  Why does this loss have me crying from time to time still 6 months later, why is there a huge hole that I can't seem to fill? It's not like we had the perfect relationship or that we were together a lot (we weren't).  It was two or three visits a year and a phone call a week.

Sometimes, even on my "good days" health wise I struggle to feel happy.  Instead, I feel so alone.  Alone in an empty house I'm mostly too sick to leave, alone with my grief, unattached and unloved by any partner, alone taking care of my dad (not completely true because they help him out at his place, but family-wise very true). And despite the fact I'm working, and that is good, work-wise I feel "alone" because there is no community to bounce things off...no office with a person next door to chat with.  The only reason I'm able to do this job is because I don't have to go to an office, on the other hand, there is a feeling of isolation.

My mom's passing this year, brought into focus the temporary nature of human existence for me.  I feel like this should mean every moment I have is precious and important.  Instead, often I feel like the moments drag, I ponder whether anything matters really.

So basically, I'm having a bit of a "down".  It's not all the time, but it is nice to have a place to write about it.  Do you ever share any of these same thoughts or feelings?

Working Woman

Sorry I have been so inattentive to this blog.  While I've been working since April preparing my course (and the "work" I did on my PhD was also work), I am now officially an instructor and a part-time "working woman", and it is taking a lot out of me.

It is incredibly time consuming, sucking all my energy.  I am having symptoms of brain fog which I haven't had in almost 10 years so I know I am near/over my limit. On the other hand, it is about the most perfect job I could find given my abilities and circumstances (flexible schedule online from bed), so I hope I can manage the next 5 weeks.

It is clear to me just after almost two weeks into the course, that I will never work close to full time again in my life time.  No amount of will power can overcome all the symptoms and limitations of this GD illness.  After 14 years, it's pretty obvious that nothing's going to change much, none of these illness related problems are going to magically disappear.  And as my friend with M.E. said, the only hope for us really is "some miracle cure".  Realistically it would take a miracle. This likely means that on some level, I may have to be on "disability" indefinitely to survive.  This makes me super sad.

On another topic, due to blackouts (which I'm sure are just POTS) and some weird visual symptoms, I agreed to a brain/head MRI.  I've never had one, so I guess I might as well, however, I only agreed to it on the condition that I didn't have to see a neurologist.  The last thing I need in my life is to wait a year to see another dismissive or arrogant specialist (this is my experience with 4 of 5 I've seen).

I've been enjoying summer a lot despite the much worsened POTS.  Sitting outside, tinkering in my gardens, being warm.

An interesting crash trigger

So on fathers day I took my dad for a one hour sailing tour of the harbour.  While we were out he was clearly nervous as it was in an actual sailing boat (a pretty large one).  I thought he'd have the time of his life as one of his main hobbies since he moved here is going to a nearby overlook and watching the ships come and go.  While nervous during the tour, in retrospect I think he did enjoy his gift.  As for me, I absolutely loved it!!!  It felt so cool and adventurous to do something like that rather than the usual laying in bed and/or housebound.  To be out on the water on a beautiful day was such a treat.  I did get a little dizzy from the motion and some mild sensory overload, but less so than in a store with fluorescent lights. We got up close to a "salty" - an ocean going freighter - and we saw pelicans and cormorants etc.

However, the next day I was not only crashed but burnt! I wore sunscreen but didn't think to do my knees and I was wearing shorts.  I had 5 horrible days in bed til I was back to my normal level of crap.

Then this week I had a friend visit, but I was very very careful activity wise not to over-do.  I did sit out on the patio quite a bit in my recliner, and one day as I was resting there I got burnt.  Then yesterday I was so crashed, I really felt as if I was dying (and I still feel horrible today).  My roommate pointed out both crashes weren't the 2 day effect of activity that I can usually count on (if I do too much I crash 36-48 hours later), but rather perhaps as a result of getting too much sun?!! Okay, how can getting too much sun cause an immune reaction?  It makes no sense...but it fit.  So I posted something on my M.E. group and sure enough, many others have had a relapse/crash from sun exposure.  An immune/disease reaction from sun? From enjoying the sun!!!

And to add to the injustice of it all, I've been resting up all week so I could attend a dog event I've been looking forward to for 6 months!!!! But I am absolutely too ill to do anything, and by no means well enough to leave the house.  The event runs three days, I'm hoping they will let me shift my registration from Friday to Saturday or Sunday on the off chance I pull out of the relapse/crash in time.

I was so sick yesterday I was just crying with the overwhelming flu and weakness stuff.  I made the mistake of wasting my energy to go see my Nurse Practitioner (I had a ride).  There is nothing she can do for the M.E which just makes me so so so mad sometimes.  Not at her, but at the fact that WTF!!! How can those of us with this disease be so ill with just no one or nothing that can help in anyway?

She did give me a prescription for a PPI again as I've been throwing up a lot, not tolerating most foods.  It's a combo of GERD and POTS and just M.E. I think.  She also thinks my stomach ulcers are likely back. I also managed to faint in the garden for the first time in 10 months bending over to pick a weed.  She said we could get me a new cardiologist (mine retired) but the one I had tried me on most the drugs for POTS and while nice and not dismissive, he really didn't help me much.

So that's my life at present...pretty horrible, and at the moment I feel as if I'm about to puke which lately has been 12 out of the 14 hours that I'm awake.  It could be worse, I'm not nauseous, just constantly feel like my food will not stay down (and it doesn't a lot of the time).

As for the issue of a better understanding of M.E. in the general public, a friend (non M.E.) posted an article today and I really like most things about it. For one, while they talk about the study's findings they don't say it's the disease cause as in the case of many of these articles, they speculate it could just as well be the result of the disease process.  They also discuss other scientific findings that may be part of the puzzle.  They also don't say in the title "M.E. no longer seen as psychological" as most media related articles seem to feel the need to do despite over 4000 studies showing abnormalities and 25 years of research.  If you need to feel hopeful about recent science, this is a good article to read: http://www.sciencealert.com/researchers-find-chronic-fatigue-syndrome-markers-in-gut-bacteria

Crash Days

Sorry I've been absent so much.  I've been having a lot of crash days.  When I do have a decent day or two, I over do it then have 3 or 4 more crash days where I want to crawl into a hole and die.

So, this leaves me with little to share.  I am looking forward to my class starting as I'm hoping it won't be too difficult to monitor and it will provide a distraction that is low-energy.  Also, I'm so sick of being desperately poor I can't even put it into words.

How are my readers doing these days? Leave a comment if you want.  I hope for those in the Northern Hemisphere you are are least enjoying some outdoor time.

Grieving and Graduating

It's six months ago today that my mom died.  In some ways it feels a life time away.  For the first few months I counted everything - "10 days since I've talked with her" "two weeks since I sat beside her bed and visited" etc.  For a while I thought I would never stop crying - bouts where I was insomnic and up late, turning to my iPad to distract myself from crying continually, thinking about her, exhausting myself.

Now it feels less potent, she feels further away.  This is a double edged sword.  I feel sad about how quickly time has passed because I am further away from her, from our time together.  On the other hand, I don't miss the constant emotional pain and crying.

This past weekend I had guests come in, my brother and niece and my good friend A. and her son A. to help me celebrate my convocation.  I have never attended a ceremony for a degree.  For my bachelor degrees, I was already across the country by the time the ceremony took place, and for my masters I already had M.E.  I knew it would be a huge effort and drain to try to attend.

For my PhD I did want to attend, partly because my mom so wanted to see me walk across the stage, and partly because I've missed out on so many milestones and rights of passage being ill, that I wanted to find a way to do this one.

Friday I was so sick, I was sure I'd have to bail, but Saturday I felt a tad better so I toughed it out.  My friends were just amazing in helping me get there and get dressed and I'd set up accommodations with the university ahead of time.  There is just no way to accommodate the M.E stuff (light and noise sensitivity, weakness, flu and body ache, dizziness) however, I did tell them I had a fainting disorder and could not stand in line or in one place for long.

As it turns out, I was slotted first to graduate. PhDs go first, I was the only PhD from education who attended, so voila.  What makes this even cooler is they offered to walk me backstage beforehand and then I could slip out to my seat when everyone was assembled, or I could walk in with the procession (hundreds of people - graduating students and faculty).  There is no way I would have chosen to do the procession (way way too much standing) except since I was first, I figured either way I had to walk down to the stage.  So, I LEAD the procession!!! (well I was behind the marshals, but still pretty cool).

Then everyone stands at their seat til all are assembled so I slipped behind the stage to sit.  Once the procession sat, there were introductions, three short speeches and then I graduated.  After I walked across the stage where they hooded me and presented me with a medal I walked around the back where an attendant met me, then instead of going back to my seat for 2 hours as 100s of others graduated, I was lead to a back room.  I could watch more ceremony on a screen with my feet up until my friends found me.  We actually all went outside, took a few photos and headed home.  Because everyone else was still stuck indoors, we had a beautiful spot to take pictures all to ourselves.

I took some time to rest then we had a meal and gf cake to celebrate.  I was so wiped out I spent a good hour that night vomiting.  This seems to happen when I overdo, as it's the second time in two weeks where effort is followed by vomiting.  It is a commonly cited symptom of POTs and I'm thinking they definitely seem to be related for me.  Too much standing or exertion = intestinal reaction.

Anyways, not surprisingly I'm in pretty bad shape now, 3 crash days, I'm too weak to do much more than lay in bed or on the couch, and home-bound.  But that is definitely to be expected.  I don't want to post photos of friends and family to protect privacy, but here's one of my dad and me....also a few of my cool robes.  The PhD hood (the behind photo) is big and billowing, the hat is ridiculous in an awesome way and dates back to the Tudor times...and the robe is more the British style, it's open at the front.

A view of the stage

Is it real gold?

Not much going on...

Really I have very little to report or discuss.  My life is pretty same-old and monotonous.

I see my dad everyday (sometimes too much).  He isn't able to figure out much to do on his own.  He listens to music or drives around (and to be honest, he probably shouldn't even be driving).  I spent a lot of time entertaining him last week and I am ready for a break, but he shows up or calls multiple times a day with "problems" which are really just an excuse for my company...but at least he's not living with me day in and day out.

This weekend is convocation.  I didn't think it was worth it to go to my Masters one 7 or 8 years ago because I knew it would be very challenging while ill, but in retrospect I wish I had so my mom could have been there.  I decided to go to my PhD one because I've actually never been to a graduation ceremony since high school and my mom kept discussing coming to it the last few years.  I'm so sad she can't be here.

I contacted the university about accommodations so I will not have to stand in line or stand at all if I'm not up for it (except to walk across the stage).  I have 7 people (friends and family) coming to watch!!  On the one hand, it will likely be pretty dull, on the other hand, I am pretty excited.  My brother and niece decided last minute to fly out and my good friend A. and her son are coming up from Minnesota so I am trying to rest up.

Otherwise my days are spent doing little garden tasks, resting, and working on prepping my summer course.  I'm considering saying goodbye to this blog as I'm not sure how much more I can "offer" the world through my writing, although when I'm sicker, I really love having the outlet.  This week I am doing quite well health-wise so I feel less need for it.

Anyways, hoping all my readers are AWAP (as well as possible)

Great comic on the experience of PEM (post exertional malaise)

Hi friends,

I will do a proper update soon, but for now I wanted to share this.  It is very timely given my previous post as well:
https://laurachamberlain.co.uk/2016/05/12/the-m-e-adventures-comic-energy-and-exertion-meawareness/comment-page-1/#comment-245

I showed it to my roommate and she also appreciated it given she watches me suffer PEM often.

Over-doing it M.E. style.

For many reasons I've been overdoing it lately with yucky consequences.  First, my dad calls and comes by often.  I do more than I should physically to keep him company, entertain him, help him with managing his mail and finances etc.  While I am glad that I can be here for him, sometimes I wish there was at least one other person in his life who could help with some of this.

Second, I've been doing a dog sport with my dog since she was two (on and off for 6 years).  It's at a very slow pace (we've learned things over 5 years that took people in our class 6 mo or less).  We learn slower because I miss 1/3 to 1/2 the classes, and when I attend class--due to dizziness and weakness I sit out on much of it.  Still, we are at the point now where we can compete this summer in the disabled class if I'm up to attending, and if we can practise some more skills that enable me to walk less during the events (each event is less than a min but still difficult for me).  I have been practicing despite dizzy spells and sometimes crashes.  I really want to do this but it's coming at a cost.

Third, I'm planning a course that I'm teaching online this summer and this involves working a couple hours every morning.  I am making progress but still, I will need every hour I can manage to have the course ready by July, I want it to be a stellar course.

So I've been feeling crashed and quite ill often lately, some of it from doing too much.  For those who've experienced PEM (post exertional malaise), you can completely understand.  For those who are healthy or suffer other illnesses, I very much doubt you can fathom PEM by no fault of your own, you have to experience it to get it.  (On that note, if one more person tells me "they get tired too, so I know how you feel" I will slug them, seriously!!!).

PEM is not fatigue and it is super hard to describe.  It is a biological reaction to activity...In fact, there are multiple studies that show when people with M.E. are active, 24-48 hours there are measurable metabolic, cardiovascular, and immune effects.  Personally, for me, it's like having run a 10K during the absolute worst day of a bad cold or influenza (without the fever or congestion - although I do get slight fever sometimes).  If I do an outing with my dad one day, for example, the next day I'm achy, weak (so weak that it's difficult to lift my arms or even type and if I do my muscles shake, it's difficult to stand for even a minute), sore throat, my armpit lymph nodes ache, I'm dizzy and lightheaded, and I feel as if every cell in my body is poisoned - I feel horribly icky and sick.

For the first 5 years of feeling this ill I just wanted to scream because how could I be this sick (without dying) yet look "great" and there was no Dr. or drug that could help?  Since then I just want to scream because it goes on and on and on and this is my life.  I hate being punished for every little thing I try.  When PEM hits, often, I just want to sink into my bed and have it over.

And yet, many of us just go on, right? We spend most our days laying in bed or on the couch.  We are probably alone for much of our existence (because social is so draining and we're too sick to go to work or school where we might interact with other humans).  We try to eek out our little moments of happiness and fulfillment.  We try to change our thinking to make it seem less bad (for example, I tell myself people my age have died of cancer, are in comas, are starving or abused etc. etc.). We try meditation, relaxation etc. to take our minds off how horrible we feel, because we can't distract ourselves with work or exercise because we are too sick and these things would make us much sicker aka PEM. It's a viscous cycle.

May 12th is M.E. awareness day and I've been seeing lots of talk of the Millions Missing campaign.
http://millionsmissing.meaction.net  Check it out.

I think the campaign is brilliant and very appropriate.  I wish I'd sent a pair of shoes in time to participate.  I will never feel "lucky" to have a disease like M.E., where most the population is disabled while simultaneously misunderstood and trivialized by most of the medical profession and the general public.  Virtually nothing is spent on research, there is yet to be a single approved treatment.  Still, I think of my fellow M.E.ers with severe M.E. all the time and can barely fathom how tough these people are just to get through each day.  And as awful as it sounds while I hate having moderate M.E., I am very grateful that that is not me.

Finally, yesterday was mothers day so I tried to avoid Facebook.  It was just too hard to see all the posts about everyone's mother and children when I wasn't able to have children and lost my mother so recently.  Not that I'm not happy for others, it's just personally too raw right now.  I have been missing my mom a lot and still have bouts where I cry inconsolably until I am beyond exhausted.  She wasn't the perfect mother, but neither was I the perfect daughter.  Our relationship was complicated, but the last 10-15 years we've been good friends.  I miss her friendship most of all.

Here's a fun photo I found recently from 8-10 years ago. Also one taken of our family when I was still a little baby (my youngest brother wasn't born yet).

Decline

While I hope it's just temporary, I've entered a period of decline health-wise.  Why now? Honestly I have no idea.  I would have thought after helping care for my dad and mom last fall and winter, clearing out and selling a house, and moving my dad I would have had a  relapse….except I didn't.  So if I got through all that with only enduring nasty crash days here and there, why would my health decline months later?

The mysteries of M.E.

On the other hand, late winter early spring have almost always been my worst time of year.

I am still doing little things on my "good" days but I have no resilience or strength, and the fluey days are worse and more often. I also can't get away with anything.  A short outing with my dad and I will absolutely be very sick the next day.  Some days I wake up achy, it hurts to breathe.  I step out of bed and have a swooping black out.  I let the dog out and feed her (another swooping blackout), I get coffee and go back to bed for hours, well to be honest, basically the rest of the day is spent in bed or on the couch.  I feel so ill, I just want to sink into my bed or the sofa and die, I want it to finally be over.

And sometimes I feel angry, so angry that almost 14 years since getting sick, I'm still this ill.  I have no power over it, and there is not a single Dr. that's been able to take even the edge off through treatment. Most Dr.s are ignorant and dismissive of M.E. and yet I'm this sick, disabled by sickness, weakness and dizziness.  Similarly, most of my non-sick friends and family, years down the road still seem to think I'm mostly just tired or "it can't be that bad, because I look great".  It is a feeling of profound isolation.  As if being chronically ill, spending most my days alone feeling awful, weren't isolating enough.

Perhaps as the spring continues I will bounce back. Fingers crossed, I usually do.

As for my work, I'm procrastinating.  I need to start planning my course but I avoid it to do other things (like write a blog post).

On the plus, the other day while laying on the couch I was thinking about how great it is to be home.  How I spent almost half a year at my childhood home and while I'm very glad I did, after my mom had passed, it seemed like there were just too many obstacles to ever come home again, and I was too sick to overcome them.  Thankfully, with a lot of help, I was eventually able to get through that time.  I still have pangs of guilt or panic about getting rid of some of the stuff that I did.  So much went to charity as my dad couldn't remember what anything was or meant, and I didn't have the energy to research every bowl, book or nick knack.

Don't hold the chronically ill to a higher standard.

I am a Dr. yes, it's true.  It still seems a little surreal.  And I managed to do almost the entire degree from bed working 2 hours or less a day.  Sometimes I worked 7 days a week, sometimes I went months without doing a thing.  This week, ironically, I ran across this article and could completely relate!!! I'm not the only disabled, chronically ill academic out there.

http://www.theguardian.com/higher-education-network/2016/apr/08/im-not-employed-but-please-recognise-that-i-am-an-academic

Having been ill and on disability for so long and having been exposed to a lot of unfair and ridiculous social perceptions, despite the fact that I recently managed to complete this big thing, I am wary about other people (or myself) making too big a deal about it.  Here are a few of the reasons:

First, there is a perception out there that people who are on welfare or social assistance are lazy, unmotivated, or are in some way "fakers".  This perception has been around a long time and sometimes when I bring it up, I'm told "people don't think that way anymore".  Not true - this week alone I saw an add that alluded to it and have heard two comments about it.  I've also been told by more than one friend that I obviously deserve disability but that I'm the exception to the rule (the majority who get it are lazy and/or fakers, people out to scam the system).  First, every single person in the program that I'm on needs extensive medical documentation from Drs and specialists.  You have to go through an excruciating and to be honest, humiliating process of being deemed "disabled" or unable to work.  It would be nearly impossible to fake your way onto this program.

Unfortunately, for some, the fact that I managed to do my degree is "proof" that I'm not really disabled.  Reason one not to make too much of a big deal about it.

The second big peeve I have when it comes to disability is this idea of the "heroic disabled".  Sometimes people who are disabled or dying are held to a higher standard, or put on a pedestal, we are meant to be especially tough or noble or inspiring.  This is really unfair.  The sick and disabled are just people who happen to be sick and disabled.

Similarly, when someone who is chronically ill or disabled  has somehow managed to succeed, they are held up as examples and a "reason" why others with similar circumstances should be able to pull up their boot straps and rise above their circumstances.  Well if "Jane Doe" or "Joe Blow" managed to do it, why couldn't someone else with the same illness?  For example, Laura Hillenbrand has severe vertigo and M.E. and yet has written two best selling books, both which have been made into movies.  However, while her example is very inspiring (and only those of us who are sick daily can understand what it means to accomplish something like that while ill) that doesn't mean that everyone with M.E. has the health or resources or abilities to do the same.

On the same note, I don't want to be held up as an example of why people with M.E. could manage graduate school.  I was able to do my degree even with a moderate case of M.E. for a lot of reasons:

- I found a program I could do mostly from home
- unlike the majority with the disease, I don't suffer major cognitive dysfunction (mine mostly cleared up after the first 4 years if I don't overdo it or drive).
- I was able to procure funding, I could have never paid tuition on social assistance.
- I was lucky to have a supervisor who helped me get accommodations and extra medical leaves, the university made an exception in my case.
- I don't have a partner or kids who need me therefore my little bits of extra energy could go towards my degree.
- I've always been a good student - for example, for the most part, writing, researching and reading come fairly easily to me.

If any one of these things hadn't been in place, I wouldn't have finished. I would guess most with moderate M.E. could not even think of managing graduate school.

So I've been trolling for a job now that I'm done, and it looks like I found one.  I'm teaching an online course this summer.  The scariest part is it might mean I loose disability.  I am very frightened that if I do, once the course is over I won't be able to get back on if I need to.  Despite the fact that I'm pretty sure I can manage to teach this course, I remain just as ill.  I am fit for almost no form employment.  Seriously - try to find me a job I can do part time, from home, on a flexible schedule that I can do with my feet up or in bed, no more than 10 or 12 hours a week.  On the other hand, if I can get two courses like this a year, I will earn more than I do a whole year on disability.  Despite the risk, I'm going to earn my own money for a change, even if I could end up sick and homeless (again) later.  I suspect that won't happen, but it has before and could again.

On the positive, I am so excited to teach this class.  I have two months to prep and am looking forward to it.  As well, it's a subject I don't feel completely inadequate to teach.  Not having worked for such a long time, feeling so useless spending most of everyday in bed or on the couch, I have very little self confidence or self esteem.  I feel inadequate or unqualified on almost every subject or level.  But it just so happens this course is about research, not only that, the type of research I just finished doing…so I think I can offer a legitimately good course.

Thoughts on loss

It has been almost four months since my mom passed away.  Sometimes I'm hit with grief, like being punched in the gut, it's sudden and out of the blue, I lose my breath with the pain of it.  Other times it feels like a dull constant ache.  Outside the fact that I miss her, it has made me ponder a lot of things.  For one, very little feels meaningful or important anymore.  Yes, after years and years I finally finished my PhD, but in the big scheme of things (life and death) it seems to matter very little.

Watching my mom die made me realise how limited my own remaining time on earth is, and that I (and everyone) are headed towards the same inevitable end.  What lies beyond death is a good question, and one that I can't begin to make conclusions about. I truly hope death isn't final, but nonetheless, it is clearly some kind of end whether or not something lies beyond.

I am not trying to be morbid, but I think when you lose someone close, you can't help but think about these things.  My world is much emptier without my mom in it.  On the other hand, she turns up multiple times a day in other ways -- when I put on her clothes, for example, or see or do something that makes me think of her, or when my dad calls me by her name "Joey" which he does all the time.  While it's not the same as talking with her (which I do, no I'm not crazy), these constant everyday reminders of her, in a way, keep her alive.

So much has happened in 8 months that I have yet to get my head (or heart) around much of it.  Hopefully time will heal some parts of me that feel very broken.  Everyday I try to go through the motions of doing little things.  It serves to distract me.  But I feel sucked dry emotionally, dead inside.

And as for the M.E. part, I cannot understand how I haven't relapsed form this whole experience.  I've had some pretty horrible crash days, but still, I seem to bounce back to my low level of function.  On that note, I found some short term, flexible, part-time, (from home) editing work for later in the spring which makes me really happy.  For one, I really want to work a little, and second, I'm in pretty desperate straights financially and this little bit of income will be huge.

My dad is settling in still, and seems OK considering.  As he says "I'm 85 years old, I'm an old man".  His house sale closes tomorrow and I've started to get my head around managing some of his financial stuff so the stress has definitely diffused in that area.  Small blessings.

I really miss having the emotional stress relief that came with having counselling sessions through hospice.  I hit on a really great counselor with whom I connected.  And because I was a caregiver it was free!  Since moving here 11 years ago I've tried three people and none of them have been a good fit (not to mention the outing, having to drive across town, the inevitable crash etc. etc.).

For fun, here's a photo of my dad checking out the port …that grain elevator is huge!  He's been enamoured by the prospect of the ice breakers coming in to break up the harbour and then this week, the first ocean going ship arriving in port.

It's Over

Well one big thing in my life is now over.  My seven year very part-time journey to complete a PhD.  I defended my dissertation on Monday and passed…so outside of a little paper work (and a tuition payment) I am done with being an academic student forever.

Does it feel good? Well obviously it's a huge relief to be done.  It's still a little surreal.
Mostly I'm just feeling crashed (sick) and exhausted.  But definitly relieved.  No more tuition or medical leaves or accomodations to figure out, no more need to read more articles, no dissertation to write or edit.

I'm hoping in the next few months to find a little very part-time employment (from home?) to replace the time and energy (about an hour to an hour and a half a day) that went into my studies.

Back to a New Routine

The title of this post is a bit of an oxymoron.  I am officially living back home after a 6 month stint of mostly living at my folks, but things have changed with my mom gone, and my dad living down the street. I would say I've changed a whole lot too… both emotionally and in the way I see the world/my life.

The past six months were insane/huge, here's the summary:

My mom got very sick in August, I flew down to help care for her, I realized my dad wasn't up to much any more let alone helping my mom therefore to a degree, all of a sudden I was helping/caring for him as well.  When I came home for a two week break in October, my mom moved to a palliative ward.

When I returned from my break, I travelled there to see her every day, often twice a day, despite awful horrible symptoms/sickness because I wanted to spend time with her, comfort her.  On December 2nd, she died.  My dad wasn't up to being alone so I had to help him figure out where he might want to live, organize the sale of his house, deal with the executor tasks on my mom's will, empty a house of stuff, find my dad a place to live near me, pack everything he needed, take over most his bills and finances, move him….oh right, and during this time, my dissertation was going through review and I was grieving horribly (not to mention ill).

I've had a few near-nervous breakdowns after returning home.  For the first 10 days my dad stayed here with me and he needs an awful lot of attention and constant companionship.  I was impatient with him some of the time.  Now he is living down the street and so far it's working out OK.  I see him everyday, but I don't have to help him fix meals, decide what to read or watch on TV, remind him to bathe…I am still dealing with all his financial stuff, and keeping him company some, but he has his own space, and 3 meals a day, and lots and lots of people to talk to.  Surprisingly, he seems relatively happy.

Next Monday I defend my dissertation.  It includes a 20 min presentation and then people ask me questions for an hour?  It will be gruelling.  When I did my mid-way oral defence I almost put my head down on the table at the end because my brain was shutting down and I was so far passed exhausted. However, I know I can get through it…I just will.  Hopefully I don't get too dizzy.  I will sit for the presentation and will even sneak my feet up under the table for the questioning part which will help with the POTS symptoms…

I hope this PhD translates into some type of part-time flexible work mostly from home in the future, but if nothing else, after next Monday I will be done…finished.  I wonder if I'm the first to complete a PhD almost completely from bed? Seriously! I only attended (less than 50% with accommodations) two in-person classes.  The rest (online classes, papers, library, interview research, analysis, writing) all took place from bed.  I also managed to swing a record 5 medical leaves out of the university.  So wish me luck on Monday.

After a whirl wind, I'm home.

Things were absolutely crazy the last week at my Dad's.  I had two friends planning to come out to help finish clearing the house and pack my dad, however, one had a work emergency and came two days late.  However, they were both fantastic and did a ton.  One of them even drove my dad's car north (a 16hr drive). There is no way I could have managed it all without them. I have the best friends in the world, no doubt.  My dad's house doesn't close until March 31st and there's still a few details to sort, but for now I'm home.

My dad is driving me insane asking 100 questions a day and sticking to me like glue (nothing new).  It has been almost 1/2 a year I've been his care giver as I initially flew down mid-August when my mom went in the hospital.  It is tough, because in some ways he is still functioning OK, but in other ways he is like a toddler.  I am quite ill now that I'm home.  The first day back was Okay, the second day I felt pretty ill and crashed, the third day back I felt even worse.

I have no patience for my dad, then feel horrible about the way I treat him.  This morning he got up early and banged around making noise and woke me up.  Then told me he had a big emergency and it was just that he was three days out from being out of glucosimine.  Then he fed the dog but didn't tell me so she had two breakfasts. Then he went out in -20 windchill to clean his car without mitts or a hat.

He wants permission to do anything.  When my roommate offered to go buy groceries for the week (I asked her if she would take him along) he instantly said no, he couldn't go (he doesn't want to do anything without me).  I made him go and he enjoyed himself.

How can I stick my father in a "home"? On the positive, it is four blocks away and he is social and needs constant attention and validation so maybe he will be happy after a transition period?  I've never been a parent so am not used to the huge burden of deciding things for other people.  For my mom, I was her POA and decision maker.  I had to give the hospital permission not to treat her final infection.  With my dad, I'm doing all his financial and personal decision making and it's a huge huge weight.  And I am so so so so exhausted.

Getting there….

Well I've been crashed/relapsed for over a week now.  Flu symptoms and some serious weakness issues.  For example,  I tried to put a box together (not pack it mind you) and just with that small effort my arms were burning with the M.E. weakness, and I was out of breath…and I did it while sitting on the floor!  Sometimes it surprises me that this illness isn't just chronic mononucleosis, it feels so much like when I first got mono that I don't understand how they really know it's gone.

My father drives me crazy a lot of the time.  He really needs so much attention and help and I am just not well enough to meet his needs while also dealing with all his stuff, selling his house, figuring out the details for his new place etc. etc.  It's just way too much for a sick person.  In fact, in retrospect it almost would have been better to move him somewheres first rather than try to have him here while packing and selling his house.  It's just too much for me and he is not really any help given where he is at (85 with mild dementia/cognitive dysfunction).  More than once I've considered just leaving him here and going home.  I can't believe how alone I feel sometimes trying to cope.

However, a couple huge loads have been lifted off me this week.  First, a good friend is actually flying out here, is going to help me pack and empty the rest of the house, and then will drive my dad's car north (a 16, 17 hour drive).  This is such a huge gift it boggles my mind at how generous it is.  I almost can't get my head around it.  She barely knows my dad, but wants to help take some of the pressure off me…honestly, I just can't get my head around that someone would do this!  And given how ill I've been the last week, and unable to do much, I feel like I'm drowning.  Her offer is like seeing that there is a life raft on it's way.

Also, my parents had wanted to sell their house in their church community, but given there is not really any interest right now, we were going to open the house up to the market.  However, someone knocked on the door a couple weeks ago and had heard through the grapevine my dad was selling.  He ended up making a private no conditions offer than is in range, so we are likely just going to accept it.  Another huge relief.

The last relief has to do with my dissertation which is now edited (again, albeit poorly) based on my committee's concerns.  So next it goes to an internal examiner, but except a few small formatting pieces, I'm done with it again for a while.  I also decided to pull out of talk I was going to give at the end of February as I realized it was just too much to ask of myself right now.  If I were home and it was the only thing on my plate, fine, but given what I've been dealing with, and the crash/relapse it just wasn't going to happen.

Finally, it's my mom's birthday today.  She would have been 79.  I'm thinking about her and missing her lots, I want to do something today to honour her.  I loved her a lot, and miss our friendship daily.  She gave me so much.