Holidays Chronically Ill Style

I won't bombard you with ideas about how to manage the holidays while ill. There are plenty of useful articles about ways to cope with the season, family, expectations etc.

I find this time of year hard - I lost both my mom and my sister in December. I have two brothers with severe mental illnesses and the holidays often trigger relapses for them. Being far away from them makes it hard to be family support (especially when they won't answer the phone, receive mail etc.). I'm feeling a lot of guilt over being such a poor support. On the other hand, I'm at or over capacity trying to be a support for my dad while coping with my own poor health. It is just a struggle right now, I'm feeling inadequate.

I've been over-doing and pushing a lot lately and right now I'm not surprisingly reaping the consequences - I'm crashed. I have the leeway to take a break from work right now which is excellent. But mostly I'm just spending my time laying in bed or on the sofa a bit bored - but too sick and fluey and weak and awful to do very much. And then I watch TV and the Christmas shows and movies and even commercials all show happy families spending time together making me feel even more alone and inadequate. I realise struggling at Christmas is not exclusive to the chronically ill, but it certainly adds a whole other layer.

In a week it will be over and in a way that will be a relief.  That's not to say I won't enjoy some moments with my dad or roommate. For one, there was a full moon last night on the solstice and despite feeling awful I convinced my roommate to take a short walk with me and Teags when she got home from work. It was cold and snowy but clear.  The moon was huge and the snow sparkled like glitter. There were long moon shadows cast by trees and houses in the neighbourhood.

I also did a very very short walk with my dad at the harbour last weekend. The sun was beautiful off the harbour ice - I'm posting a photo of the dog so you can see.

If you celebrate Christmas or Boxing Day or New Years, Happy Holidays!!! I hope you find ways to enjoy the season. Be gentle and kind with yourself.

My M.E. Exercise Experiment

For 7 weeks now I've been engaging in an experiment. I've been swimming at the local pool (it's two blocks away, I drive).  Almost every week, once a week, I've gone and done some laps in the late morning (my best/highest energy) time of day.

There are many reasons why this is a bad idea.

First, while most Dr.s and the general public are ignorant about the detrimental effects of exertion and exercise on people with M.E., the research is starting to show that what patients and specialists have been claiming for years and years is true: M.E. is a disease that effects metabolism on a cellular level.  Also, there is a quantity of research now which demonstrates that activity, exertion, or "pushing" makes M.E. folks sicker (there is both an immune and inflammatory response).

Anecdotally, I know a couple folks with M.E. who had a better period, tried to engage in life/work/exercise again, and ended up permanently relapsed and worse than they were when they originally got ill.  Finally, since I crash from just standing too long (e.g. doing dishes standing), taking my dad on an outing, driving, being exposed to too much noise and/or florescent lighting, visiting on the phone too long, why would I add more exertion to my life?

All these are logical arguments against me doing this experiment.

Then why did I do it anyways?

• Since I've started a low dose Beta Blocker for POTS, I've gained some weight and often feel disgusted by my own body. I can't see eating much less, which leaves few options for losing a little.
• For someone who used to love being outdoors and athletic, and who now understands this disease is never going away, lately I've felt trapped in my own body. I just want to push and sweat. I miss being active so much I could scream.
• I've been reading about POTS and how sometimes exercise can really make a difference, it's not a cure, but it can help.
• While exertion makes M.E. symptoms worse, I know that de-conditioning over 16+ years now is also not good for me and could eventually lead to other health problems.
• I love to swim - I swam competitively as a child and teen.
• Ultimately I was curious to see what would happen. I know I don't have a mild case of M.E., but I've only been severe here and there. I'm one of those moderate cases. That said, moderate M.E. means I'm mostly home bound and have less energy and resilience than most people with a whole host of other illnesses.

So what have I discovered thus far?:

First, I've done the same amount of swimming each time.  I decided if I felt a slight improvement over time I would add a little. It sure hasn't happened yet.

Interestingly, my best swim, the one where I felt the strongest and most capable, was the first!  The next best swim was the 2nd week.

By the 3rd swim/week my arms and legs fatigued more easily, like there was a complete inability on a muscular cellular level to produce any energy/strength. Why didn't I quit there? I thought, "What if this is the point where I just need to push through?" Or, "Perhaps this is a bad one due to monthly fluctuations?"

One week I went 2x (early and late in the week) and the next week I was in bed much more and felt just terrible - then I had to skip a week.  Last week I was so weak, sore, and burning during the swim it was all I could do not to cry during.  I had to take more breaks and after the swim my body felt particularly poorly (achy, weak, shaky). I was horribly crashed for 2 days, there was one day I could barely stand at all. I decided I should quit.

I went back this week and thankfully I wasn't quite as poorly, still, I was far far worse/less capable than week one. (I also don't know how badly I will crash). Problematically, I had horrid air hunger during the swim like I wasn't getting enough air/oxygen and my chest hurt.  I'm curious how high my heart rate was and whether this breathlessness was a heart-related symptom?

Will I continue with the experiment? I haven't yet decided.  Is the M.E. overall worse? It's hard to say,  October was a bad month and November a little better overall.  Following each session, though, I'm definitely worse and this worsening lasts a day or two and clearly impacts my immune system with worsened sore throat (worse than I've had in ages) and flu-like fatigue and weakness. Overall my ability to exercise/exert is much worse.

Do I have more muscle? I must have, I won't believe I don't, even though I'm not swimming much, I've been doing this almost every week for 2 months!  Do I have better aerobic capacity?  No! I would guess that my aerobic capacity has actually diminished or gotten progressively worse.

Weather and Dogs

We had about the rainiest October I can ever remember. Usually we have at least some nice, warmer sunny days. I typically love autumn. Then November hit and it's been cold - it was -20 C last night with a - 30!! windchill, in November!

Not the type of weather where you can get out and enjoy it, especially if you can't be active.  I still did a few short rainy outings in the woods with friends and dogs. And we had one beautiful warm day near the end of October and 3 of us went to a nearby park/beach. A friend took these photos of me and Teags that day.

My health picked up in November. I've been doing some mild exercise and thankfully not feeling as poorly.

Lately, I feel like my life is slipping away; years have flown by while I've laid in bed or on the couch 'being cautious'. Crashing is so horrid and the thought of relapsing worse. Still, recently I have this sense like I'm running out of time, so I'm being a bit more cavalier with my body and health.  I over-do more often - and usually I crash and regret it but not always. And not enough to stop me over-doing again. So far, I seem to bounce back after a couple horrid days.

Speaking of horrid days, while November has been a bit better than October, this week I am not very well. My stamina is back down to poor - sore throat, air hunger, horrible POTs with multiple near faints, weakness, flu ache etc.

Now for a completely different topic, I am still in search of my next dog - I know, call me crazy - but this is something I want to figure out before I endure more loss (with both an aging parent and an aging dog).  I want him/her to be part of my little family so they are not a 'replacement' for some loss - I'm afraid that will both be too much to cope with emotionally, and I will end up resenting and comparing them.

The dog I have now is a strange, lovable, quirky, nervous, character in her own right.  She has in many ways been a therapy dog for me now for almost a decade. At times she has truly been my life line.  I would say I'm alone close to 90% of the time, and yet because of her I am not - I have this amazing, loyal friend by my side.

I think for those of us who face illness and suffering every day of our lives, having the kind of unconditional non judgmental love and companionship that a non-human being can offer is invaluable.

So, I've been on the search.  I want an athletic dog that swims and retrieves (this is how I exercise my present dog 6 mo of the year) who has a very friendly temperament (when I do go out I very often have the dog with me and it takes a lot more training and energy to deal with a reactive dog) and finally, they need to have an off-switch and be able to chill.

No, I don't want a robot (haha) and I know you can't plan for the perfect dog as dogs are all individuals (Teags is evidence of that). Right now I'm on a list for a potential second golden retriever.  I've decided they are a good fit for me.  She would likely be even smaller than the dog I have (the mom/dam is 48 lbs). I am pretty far down the list though, and trying to scrape together some funds for her (or whoever I end up with - cost of dog, extra food, vet bills etc). But I do think in 2019 my family will grow even if I have to beg borrow and steal to make it happen.

Crash Update

So that very athletic outing did indeed lead to a crash.  However, it was no worse than some crashes that occur after much smaller outings and exertions. I don't know what the lesson is here? Attempt to do more? That M.E. (PEM) is random and makes no sense at all?

Even though I didn't permanently relapse or anything, I seem to be less resilient the last couple weeks - I've been living the yoyo life.  I do a little, crash hard, force myself to do a little more, crash hard. My throat is sore more often, I am weaker, and just colossally tired beyond tired.

It was so so so difficult to wake up today and take my dad to his program. It's a short drive but still, I shouldn't have been driving this a.m. given my POTS/dizziness was quite bad first thing (before drinking water and taking drugs).

Life takes so much effort these days. And it seems so monotonous/meaningless. I lay in bed and work all morning, I do brief  dad entertainment in the afternoon, then the rest of the day is spent laying on the couch or in bed feeling horrid. Or alternatively forcing myself to do an errand or task while feeling horrid.

My world is so small. Besides short occasional interactions with my housemate, and the un-stimulating company of my dad, there isn't much to my life right now.

I want to do some art or something but I am so colossally sick and tired there is nothing at all in my battery. I took my dad on a drive Sunday which may be why I'm so crashed again yesterday and today.

Here's a few more photos from outings in Sept.-Oct. just for fun.

I took this out the window of the car!

Okay so my dad wan't smiling but the dog was lol

Fall Photos - and a Dangerous Hike

I'm sharing a few Autumn photos from various short outings and a brief story of stupidity.

Two days ago I went for a hike. Yes, an actual hike.

Task: Find the golden retriever

It was my week "off" and I had hoped (had been planning since last spring) to camp for a couple nights. However, the weather has been cold - either rain, snow or sleet and hovering near the freezing mark and I haven't been feeling great. It has not been camping weather for a sickie.  Friday looked like the only day this week where there would be a chance to enjoy an outing without rain or snow, so I planned a very short walk in the woods somewhere new.

It was quite nice (although near the railroad tracks so a bit unnerving when the train went by) but having done the short walk, I wanted to do something more - I wasn't feeling too badly.

I ended up at the Provincial Park down the road.  All I can say is I kind of got sucked into the woods. The autumn colours - yellow orange and red, the river, the lack of people anywhere (because of the temps and being mid day). At a certain point I realised I'd walked too far (I'd gone over a kilometre) and it would be tough for me to get back given my legs were weak and shaky.  Around this point I met a woman searching for a lost dog. She said I was on a loop and pretty much 1/2 way. You guessed it, I kept going.

It was cold enough that ice was forming on the foliage from the waterfall's spray

It was beautiful. Unfortunately for me, though, the woman was wrong.  I wasn't 1/2 way and by the end of the loop I was in bad shape. There was a huge hill to get up and I just didn't know how I'd do it. I was so weak and shaky. It was cold and there were flurries, the ground was wet and I hadn't seen a single person save the woman the whole time. I wondered if I quit and sat down how long it would take for someone to find me?...then I wondered how they would get me out? I wasn't near any roads.

Long story short, I did make it out by myself (very very slowly with rests and some crawling).  I got myself home and waited for the crash/relapse. The next day (yesterday) my POTS symptoms were off the charts - resting HR was very high, over 150. They are similar today (very bad OI, lightheadedness, semi blackouts and high HR). However, I have yet to fully crash.

Little mushroom in the moss

I don't understand it. I sometimes crash from a 1/2 hour outing and this was a hike of over 4 km!!! I haven't crashed as in the awful awful M.E. flu ache/breathing ache, crushing fatigue, and weakness that is quintessential M.E. I guess I should wait til the 48hr mark to say for sure, but I'm usually a 36 hour crasher.

Which begs the question, why? I'm not complaining - really and truly - but why? I'm usually not much of a crasher from mental or emotional exertion; however, I almost ALWAYS crash from even the smallest of physical activity (and/or infections) and this was a big one??!!

Update: 48 hours and I have crashed some.

Tales of a Chronically Ill Caregiver.

Thanks everyone for the comments on my last post. It really helps to know that I'm not alone dealing with this monster on a daily basis. I feel so grateful to have this group of friends who take the time to read my posts. Oddly, blogger isn't allowing me to comment on my own blog except as anonymous!! Strange.

Lots has been going on this past month and a bit.  I'm working 1/4 to 1/3 time teaching online, doing dad care/company, and I had a friend visit. I also had my first cold virus since 2014, can you believe it!!!?? I know! I have a chronic low WBC so you'd think I'd catch everything (and yes, I am around people who are sick) but I just don't seem to get colds the last few years.

I did catch influenza last Feb. if you remember and was sick and then relapsed for a while. I even completely fainted once - and of course was alone at home. Thank goodness for my canine companion. It's strange to come to on the floor feeling disoriented.

Again, I also came very close to fainting a couple times with this cold virus as well. I'm on a low-dose beta blocker for POTS and am wondering if it lowers my BP enough to make the difference between black-out and faint?

Anyways, I've recovered from the cold and am doing better.  I have had a tough autumn, though. I'm not at my worst M.E.-wise but I'm definitely worse than I was in the summer and that's been hard. I'm also feeling quite lonely much of the time.

On that note, I struggled a lot when my dad moved up here after my mom passed.  It was a lot of extra work/energy helping him through the transition. He also refused to rely on anyone but me. He lives about 3 blocks away in a retirement home. He has an apartment/suite and they provide meals, light housekeeping, and do his laundry. They also provide some entertainment although much of it he's uninterested in.

I am his main support.  He leans on me for errands, company, worries and concerns, managing his finances and communications, and basically most his social.  On some level this is really hard. I wish he had a least one other person in his life he would lean on in any capacity rather than his sick daughter.  However, that's not the reality. He does attend a program once a week for cognitive impairment and dementia - he doesn't love it a lot of the time (most folks who go are lower functioning) but I like having that little bit of support - the recreational therapists who run it are excellent, like really really good.

All that said, given I am quite alone much of the time (I have a housemate/good friend but she's not here much and when she is, she's busy or mostly keeps to herself) my dad is, in reality, my best friend. This is a pretty strange scenario given he needs care and has pretty significant memory loss and mild cognitive impairment. I worry a lot about what happens if (likely) he goes/dies before me? I try to just live day by day and not think about that too much.

Do you, or have you had to be a caregiver (as a parent, or for a parent) while living with M.E.? How do you manage? How do you cope?

A very brief scare the other day - my dad and I were cleaning out his garden box at his place/home, and he decided to get up into the box to turn the soil!!! I said "bad idea" but he was determined so I let him - he has so many restrictions/losses to his independence, sometimes I figure it's best to let him be.  He did fine, but he stepped down, he fell and couldn't get back up.  He is very stubborn about accepting help but I finally convinced him to take my hand and use the nearby bush and I eventually got him back on his feet unharmed.

Back to the nurturing - before I got ill, I thought I'd have kids whether I found a partner or not (I always figured I could adopt or foster or find a way). Then right after I turned 32 I got very ill - Mono - which never left and/or turned into M.E. and POTS. Not being able to have a child has been a huge loss/disappointment.

Still, I've found that despite illness, I have an instinct/desire to nurture. I think this is part of why I need a dog in my life. Having a dog is a two way street, my dog gives me as much as I give her.  She takes the edge off my loneliness and I can love her without reserve and she loves me right back unconditionally.  Likewise, despite all the trials and hardships and lack of support, I am thankful to nurture/care for my dad (and my mom at least a little before she died - I have many regrets, but I tried).

I doubt I will ever have a partner - I am home bound too often.  Not to mention the fact that I'm too broken - physically and emotionally. And it looks like I will never have children.  Lately this has translated into me wanting another dog - lol....but really - I really really want a puppy. If care and love in my life means more dogs, so be it.  Yes, I am worried about the energy it will take, but we only get one life right? Given there is little human love in mine, why not fill it with the canine type?

Okay, so is this the most bizarre post ever?! - Sorry.

The good, the bad, and the ugliness of chronic illness.

While I would choose having 'moderate' M.E. over severe any day (obviously), moderate or slightly (even temporarily) improved health comes with it's own set of headaches and frustrations - mostly social.

For example, I've been doing fairly decently lately, I've also found a type of work I can do successfully on a part-time from home (bed) basis. This means I am out in the world a bit more than I have been for a decade (for an hour or two a couple times a week).  But being ill and disabled while "looking great" comes with a lot of social frustrations.

Honestly, people just don't get that I'm very very sick. I understand that initially this is not their fault given I have two 'invisible' illnesses. But if I tell them over and over (even some friends and family) it doesn't seem to make a bit of difference; not only that, I feel as if I come across as a whiner/exaggerator.  And since I don't look on death's door they assume (or their behaviour suggests they assume) I am doing fine and coping.  Either that or they don't care.

I feel so alone and misunderstood and unsupported lately.  I think being forced into isolation by illness makes my infrequent human interactions carry all the more weight when they probably shouldn't. And to be quite honest, a couple things have happened this year that have brought me to realise that I rank lower in importance in people's lives than I thought. I've accepted it is the way it is.

I remember when I was first ill and still doing my job, I had a similar realization. At the time I felt so important to the organization I worked for. But then when I just couldn't manage due to illness, I was quickly replaced by someone else and realized I really wasn't all that essential in the big scheme of things.

I'm aware that this is all very self-indulgent. Obviously people have their own lives, own issues, heartaches, challenges to live and work though. I don't expect the world to revolve around me.  And to be fair, how much of my limited time and energy goes to caring about the people I do have in my life (outside my dad) - putting energy into their issues and concerns? Showing I care? Very little.

It's just I'm lonely and alone much of the time. Lately I vacillate between anger towards everyone I come in contact with and everything they do, to utter loneliness, grief, and borderline despair. I think some of this is due to the fact that while I'm doing more lately, I'm doing it while a raging war is going on in my body (flue ache, tachycardia, dizziness and lightheadedness, sore throat, internal tremors, weakness and agonizing fatigue). And this war is never seen, and rarely, if ever acknowledged (or for that matter believed).

Despite the loneliness, when I'm with people lately (e.g. my dog training friends) I find them difficult to be around for a number of reasons - they seem insensitive, uncaring, uninterested, petty, and honestly annoying.

A friend in an online support group I'm part of commented this week that at this point (given the length of illness and accessibility of information) it's not our job to educate people about our illnesses and the impacts of disability.  I think this is especially true for friends and family. If they don't care enough or haven't taken the time at this point (after 16 years) to listen, research and/or read a little and educate themselves about what we suffer, that's not our job.

It's not that I mind thoughtful caring questions, I don't - it's just after 16 years I don't feel that it's fair I have to explain (over and over) or justify that I can 'look good' and still be sick, or that I can manage something one day and then crash horribly the next, or that I'm more than just really tired!

I'm crashed right now so especially prone to a pity party. I had a friend come visit over Labour day and we went camping for a night!!! It was awesome and amazing and I'm glad I went. On the other hand, one night is not really doable for me.  It means two travel days in a row (an hour and 1/2 car ride) and packing and unpacking two days in a row (even with help this is crash making for me).

That said, it was an amazing time and I'm glad we went. I loved sitting on a rock looking at a beautiful lake, laying in the grass by a fire at night and seeing the Milky Way for the first time in a year, dipping/swimming in the clear cool water as the late summer sun beat down on us, and visiting with my amazing awesome friend.

However, I'm not sure I would do a 'one' night camping again.  It would have to be a 2 nights at the least so I had a full day to just lay and rest and chill.  That said, I took some amazing sunrise photos (many from my sleeping bag out the tent door). This lake (it's now my secret local spot - I've been twice) is just magical. I think the sky and water changed about 100 times int the 24 hours we were there.

This is a great example of the juxtaposition of this condition. On the one hand I am so grateful that I can do something like this despite illness, and I did manage to go. On the other hand, doing something like this comes at such a horrible price, and yet the cost is unseen, invisible, and unacknowledged. It leaves me feeling completely alone. Do you ever feel this way?

Enjoy the shots.

So Many Questions

I have so many questions, so many things I'd like to know about this disease before my life is over.

The science is so slow, so underfunded and/or non existent that sometimes I wonder if I'll ever know what's really caused me to be so ill for so many years.

I remember the first few years when I switched from seeking answers from traditional medicine and started looking for answers from naturalpathic and wholistic practitioners. A couple years later I'd tried a plethora of supplements and vitamins and techniques and yet I remained just as sick. Not only that, but I was left feeling like I must have done something wrong given all this stuff wasn't working.

These days I try very little at all - very few treatments that is.  What I do, is attempt to eek out a life as best I can despite the illness. And I am pretty sure I'm not quite as sick as I was the first 10 years. Having been ill 16 years either that's because I just don't try some of the things I did the first few years (exercise regimes, full time or physical work) and so I'm crashed less, or perhaps there's been subtle improvement.

The thing is, I really think if there were treatments out there that had significant impacts, I'd know about them. I keep up to date with the little bits of science that are happening.  Occasionally you hear rumours of something 'working' and then it doesn't work for everyone, or the impacts are short-lived, or the treatment has side effects, or I wouldn't have access to it anyways.

So while I've given up hope that some panacea will be discovered and available in the next 10 years, what I'd really like to know is what is causing this illness? What in my body isn't working? Is it some kind of low grade insidious virus? I mean when I first got ill they said it was a virus than after a year they said it couldn't still be mono despite that fact that my symptoms hadn't changed much (fever, fatigue, PEM, lymph nodes, sore throat, dizziness, weakness, twitches and tremors) - there were more of them and I was even sicker.

I've had a decent summer overall health wise, but the last week has been pretty bad. Yesterday after a lot of rest the day before, I had a good day.  I did way way too much, trying to fit in some summer stuff that I haven't been able to do all summer because I've been working (teaching online). For one, there's a little piece of wall in my entry way that had flooring on it. It was so ugly. I pulled the flooring off about 6 mo ago and was left with painted wood, but it had glue patches all over it.  Every time I've tried to scrape the glue my arms have felt like silly putty and I've had to quit.

Yesterday, after months, I took another whack at it. I got a fair bit of glue off and pushed til my arms weren't even strong enough to hold up the scraper. And I mean literally, I couldn't even lift my arms.  Then the violent muscle twitching and internal tremor/buzzing started - this lasted hours. Today I'm sore and quite weak. I wish people who were acquainted with me could spend one day in this whacked out failed body and actually experience all these symptoms and effects of effort, even minor effort.

Obviously there's some neurological and/or metabolic failure going on. And yet despite my tiny limited suffering life "I look so good". When I'm collapsed in bed on the couch, when I can barely stand for the weakness in my legs and lightheadedness,  or when I fail to attend one of the few things I'm part of, it's no wonder people think I'm psychologically weak or an exaggerator.

I'll Be Back

Until this week I was managing pretty well.  My course ended yesterday (now lots and lots of marking to do).  Unfortunately after a pretty decent summer health-wise, I seem to be quite sick this week - probably a crash from over doing so often (and thinking I was getting away with it). I'm very weak, dizzy and viral.

Once things slow down in a week or so I hope to come on here and write a more thorough update.

For now, here's a photo from this summer of my favourite canine.  I hope my readers are all AWAP.

Working with M.E.

I have one or two (if you count POTS) disabling diseases and yet I'm trying to work.  This intense condensed course I'm teaching at present is just kicking my butt. Don't get me wrong, I am really enjoying teaching, it's just hour after hour I sit propped up in bed or in my lazy boy working and I'm still not keeping up. My health status isn't great (I'm crashed) and yet I have essentially 4 more weeks to go at this pace.  And then a course in the fall, and I've been offered a winter course! although those are over 12 weeks not 6.

How do I negotiate this working life while so ill? I just don't have an answer to that. I sit here with a low grade fever, painful lymphs, sore throat and flu/sick ache and wonder why I'm doing this to myself? Honestly, I can't see anyone who isn't ill with M.E. grasping the ludicrous nature of what I'm doing.  There is no other known illness out there where activity (whether it's one that's positive or enjoyable or not) makes you directly and literally sicker.  (And for naysayers this finding is supported by research).

And yet if you asked me to quit I'd say no. I'm willing to suffer some level of consequences in order to participate in this work.  In fact, there is almost no job in the world that I could come up with that would be more ideal.  I get to work (at least with the 12 week courses) somewhat flexibly from home in bed. That said, if I get much worse I'll have no choice, but for now, I'm sticking with this extremely limited sick working life while I hold on by a thread.

I'm a weird duck.  If a (relatively) healthy friend encouraged me to push through and continue to work I'd be hurt.  It would feel like they didn't care that I was choosing to jump off a 6 foot diving board into 6 inches of water over and over and over. Or similarly they might as well encourage me to run head first into a brick wall over and over. "But you're getting satisfaction out of it right?"  The problem with M.E. is you can't see metabolic disfunction, or immune symptoms, or icky flu breathing ache, or lightheadedness and blackouts from the outside. All of the damage and suffering from pushing is invisible (although my roommate sees it to a degree). I do know how lucky I am to even have friends left, let alone supportive ones.

Luckily, I've still had some short outings here and there over the last month.  Not too many weeks ago my dad and I took the dog to a local dock and took photos of her jumping.  I love watching her swim (I also love swimming). Then, there is a local overlook with a memorial to Terry Fox (a Canadian hero) nearby.  One afternoon my dad and I drove over just to look at the view and have an outing.

Really Tough Week

I've been doing too much, especially driving.  I did some driving last weekend in order to attend a dog event. Then my dad had two appointments this week.  Yesterday I was so sick (M.E. sick) that I was ready for it to end.  I just wanted to die.  Really, how much more suffering must I go through in this life?  It's like everything I do is punished, whether that's stuff I really want to do, or just life errands stuff.

I woke up today not quite as weak but still feeling horrible already (sometimes I get a window in the morning).  Since the beginning of M.E., when I'm sick or crashed it feels like there's an infection somewhere deep in my chest, I take a deep breath and it hurts/aches.  Every cell in my body is tapped out and poisoned. It's really similar to having influenza (the weakness and icky part) but M.E. (as I experience it) has a flavour all of it's own. I don't know how much more of this I can take?

For the next 6 months I will be teaching again and today that feels like the worst decision in the world.  On the other hand, in some ways I am very much looking forward to it (hopefully I can keep my brain healthy enough to manage it).

I work completely from bed for a few hours a day teaching online courses (this time a 6 week summer intensive and a fall 12 week).  The summer intensive is all ready to go and will be a whirlwind no doubt.  I know in the past it's occasionally meant some 6 hour days and in order to spread out my hours, usually no days off for the whole period (really 8 weeks work with the marking). The fall course is right up my alley (it's in my field of study) but I've only taught it one time and I don't see where/when I will do anything to adapt and update it given I'm working in the summer.

Right now I have a headache and am dizzy/light headed so feeling thankful I have most the week still to recover from this crash/relapse. Illness is really dragging me down lately, I feel so isolated from the rest of the world, I feel so alone trying to manage life while feeling so horrid. Yesterday I almost collapsed twice my legs were so weak. If I had, I would have been alone.

A Poem

So yesterday June 16th was my 16th sickaversary.  While I know rationally that I was once well (or lived in a relatively healthy body),  I can't really remember what it's like to feel well, not to feel sick.

Since I don't have much to say these days, here's a poem we used to use as a reading in wilderness courses. It popped into my head recently:

The Invitation

- Oriah Mountain Dreamer

It doesn't interest me what you do for a living. I want to know what you ache for and if you dare to dream of meeting your heart's longing.

It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn't interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrow, if you have been opened by life's betrayals or have become shrivelled and closed from fear of further pain.  I want to know if you can sit with pain, mine or your own, without moving to hide it, or fade it, or fix it.

I want to know if you can be with joy, mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, be realistic, remember the limitations of being human.

It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself. If you can bear the accusation of betrayal and not betray your own soul. If you can be faithless and therefore trustworthy.

I want to know if you can see Beauty even when it is not pretty every day. And if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand at the edge of the lake and shout to the silver of the full moon, 'Yes.'

It doesn't interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone and do what needs to be done to feed the children.

It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the centre of the fire with me and not shrink back.

It doesn't interest me where or what or with whom you have studied. I want to know what sustains you from the inside when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

Sick and Exhausted - Trip to ER

I'm so sick and exhausted. I don't want to be graphic but the time of the month has taken a toll since I got sick with M.E..  For some reason it exacerbates my M.E. symptoms and my POTS, not to mention I have had low ferritin levels for over a decade. Thankfully this hasn't usually translated to anemia although in January I did dip slightly into anemia.

For this reason, lately I've been buying the only form of iron my gut can tolerate which is liquid Floravit.  So, 4 months and 150 dollars later I have managed to bring my ferritin up from 6 to a whomping 12 - sigh.  How frustrating.  It's so expensive to do it this way, but I guess I must continue to fork out the cash.  I managed to raise my B 12 too (which was low normal) with the sublingual tabs. which are much less expensive.

So, while in some ways I feel like the M.E. is in a holding pattern, on the other hand I am colossally weak and exhausted.  I noticed on this recent blood work (I can see my results online) that my WBC has dropped even lower.  I'm now at 2.6 (4 is normal) with my neutrophils 1.2 - still in the mild neutropenia range, but now edging close to moderate.

And as for anyone with a chronic illness, life still happens.  Last night when I drove my dad home (a few blocks away) and he was hurrying to get in the back door of his residence, he tripped (it was pouring rain and I think his shoes may have been wet).  He landed on the sidewalk/cement on his hand and within moments his hand swelled up to the size of a baseball.  I had to take him to emergency where the line was much shorter than usual (thanks for small blessings).  Still, in total we were there for 4 hours - waiting and X-ray, stitches.

I am not unaware that this accident could have ended very badly.  I watched him fall hard, and there was an instant where I thought he hit his face.  Still, it was a LONG night for me with major POTS symptoms sitting up and the hospital and caring/advocating. Surprisingly, his hand was not broken (although the Dr. said she'd call tonight if the radiologist saw something she missed).  He did need stitches as he had a deep gash on his finger and there is obviously swelling (she said hematoma) and perhaps some spraining of at least one finger.

The thought crossed my mind that given my WBC is a bit low, the hospital was probably a dangerous place for me to be, but I tried to block that thought out as best I could, because I wasn't about to ditch my dad. I woke up today feeling like someone took a sledge hammer to my body during the night - I'm dizzy achy and icky.

I was trying the whole time to be a supportive compassionate care giver but given my energy levels tanked after less than an hour, the experience was excruciating.  Even after we made it out of the hospital I had to help him sort food, get in and out of the car, understand medications (antibiotics), etc. etc.  It was all I could do not to lay on the floor, give into the the exhaustion and sickness.

This is an incredibly isolating lonely illness.

Why is M.E. such an isolating lonely illness?

Physical:

• Most of us are incredibly deficient in energy (due to metabolic and immune dysfunction) so we must spend many many hours a day alone resting. All of us with M.E. feel exhausted and weak most the time (it's like having a battery that only ever charges to 20% and muscles that are made of silly putty). We are forced to give up hobbies, social events, much of life that would bring us in contact with people.
• At least 70% of us are unable to work full time so we are often isolated, spending our days alone at home.
• Most of us become fatigued or even crash from too much mental, physical, emotional, social stimulation/exertion so in order to reduce symptoms we must avoid triggers - this limits us to quiet lonely spaces.
• Many of us miss so many of life's milestones and those of our friends and families due to the illness. It can lead to feeling separated, different and/or abnormal.
• All of us try to avoid crashing most the time (although sometimes we purposefully over-do so we can experience little bits of life).  A crash is like the worst day of influenza with a hang-over.  It's horrible, like being poisoned in every cell of the body with immune system symptoms to boot (e.g. fever, sore throat, painful lymph nodes, shakes/tremors, dizziness). Avoiding crashing means avoiding triggers which is lonely making.
• The majority of M.E. folks (up to 80% or more) have OI which is orthostatic intolerance (in my case POTS).  It means when we stand up, especially if we stand still we feel horrible and dizzy/lightheaded thus we feel best laying down with feet elevated. This keeps many of us away from places where standing still is necessary (e.g. in line at a store). Instead you'll find us alone at home, or sitting in the car with feet up.

Other

• M.E. is isolating because Drs are either dismissive or have nothing to offer - despite having an awful life-stealing illness we're on our own medically. For example, there isn't a single full time specialist in the province where I live (only 2 in the country), there is almost no research happening in the whole country. 
• People with M.E. often feel cut off from family and friends because they see us on a good day and think we're better/improved or "it must not be that bad", suggest or assume we exaggerate (generally it's the opposite), and no matter how hard they try they will never really understand the daily drudge of living in a sick, drained body. I have friends that try to understand and it makes life far less lonely - it helps that they knew me pre-illness. Many folks aren't as lucky.
• M.E. is isolating because despite the millions of us with the illness, if we do 'come out' to someone they've never heard of it.  If we use the old "CFS" term they immediately think it's about being tired or fatigued (which is a common experience for everyone) and/or they immediately dismiss the diagnosis and ask if we've been checked for....X or tried Y.
• M.E. people feel alone because based on the amount of people sick world-wide, governments dedicate infinitesimal funding to the illness when compared to almost every single illness out there. Research shows that quality of life in M.E. is as bad or worse than end stage AIDS, M.S. or congestive heart failure yet for example in the U.S., the illness receives less funding than male pattern baldness or hay fever. Governments, Drs. researchers, all tell us through lack of consideration that "you don't matter".

M.E. is isolating because we are alone on so many levels.  

Plugging Along

It seems I rarely write here anymore.  I'm not sure why, maybe because I feel it serves little purpose, or perhaps now that I've recovered from the flu (took about 6 weeks) and am doing better I don't need the outlet?

Or perhaps because I'm not trying anything new and don't expect to any time soon (there really aren't any treatments for M.E and given research and testing take years, and funding remains abysmal, my guess is it will be at least another decade until treatment is available).

As for POTS drugs I've tried most of them now.  I can tolerate a very very low dose of beta blocker and it helps slightly.  It took 8-10 days of nearly unbearable symptoms to be able to tolerate this small dose (10mg) and given it (unfortunately) lowers my already low blood pressure I won't increase the dose. That said, I do find that it gives me a few hours where I'm a little less panicked standing up. So, I might be able to stand up for 6-8 minutes sometimes instead of 2-3 (or 30 sec) without terrible symptoms.  Like I say, it doesn't take it all away (not even close) but it takes the edge off - perhaps a 10% improvement for a few hours a day.

I am looking forward to spring and more time sitting outside and doing a little gardening.  Every time I try something even slightly physical I find I am surprised at how weak I am. This morning I went out and picked up some spruce cones in the garden and was dizzy and weak within seconds. It is beyond frustrating, there are really no words.  I've been living in the equivalent of an 80 yr old body since my early 30s and if I think about this too much I'm overwhelmed by the anger I feel to be so confined and limited.

I do have good things in my life nearly every day.  I am enjoying not working this semester and sometimes I even feel free of the shame and guilt of it (living off social assistance). I tell myself that it's not my fault I'm so ill and weak and it's not what I'd ever choose (so true).  I'm allowed a few moments of happiness on my good days.  Yesterday I went to a friend's for a 1/2 hour (she runs a rescue) and played with puppies. Two weeks ago I crashed myself to go to a local waterfall with my dad and see it before the ice went out (totally worth it).

I'm signed up to teach an online course in July and August so I've been working on getting that ready when I feel like it - I'm actually looking forward to it.

How are you all doing? Feel free to leave a comment. I hope you all are AWAP.

Slow Road to Recovery Post Flu

I'm finding that healing from influenza is a slow road.  It's been just about 3 weeks since I got sick, and exactly 2 weeks since the fever left, and I'm still coughing, weak, brain fogged, dizzy spells, depression, and exhausted.  My immune system seems to be taking it's time to return to 'normal' which is mildly immune compromised. I am improved, but not what I would call back to normal.

What am I doing? Mostly laying in bed or on the couch.  I'm so TV-ed out even though I generally keep it to evenings.  I am watching an extra hour or two a day which is just ick.  On the other hand I'm having problems reading as much as I usually do and I just can't sit or stand for very long so my options are limited.

I'm also back to seeing more of my dad, helping him with various tasks and of course the daily talks.  The 'outbreak' at his home is over so they have some activities again (exercise class, music groups etc.) which is really nice for him (and me).

I've been working on a print as a fundraiser for a while, and I finished it this week (see below).  It does disappoint to a degree (why do they never look how I hoped they would?).  I'm hoping to sell a few to help fund some dog events this summer (even though I'm not participating in dog stuff right now due to my health).  At the back of my mind, I guess I'm hoping spring brings improvement.

I'm also working on trying (again) to publish an academic paper about my research and I'm just not succeeding on this front either.  It was rejected by one journal last year and after some hefty edits I tried another journal. The second journal sent it back asking for major changes before I resubmit.  Being an academic in isolation, not ever attending conferences means I really have no colleagues to work with.  This is one of those times it would help to have another academic read and/or collaborate with.  That said, I haven't (quite) given up yet, I have a pile of recent papers in my field I'm working my way through in hopes that I can give it one last shot.

Travelling with M.E. and the Plague

Over family day weekend, I went to visit family (brother and his family including niece, 13yrs, and nephew, 12yrs).  It's been planned for 3 months or so.  It consisted of two shortish flights (no need to leave the plane between).  It was tough travel, but I made it okay, and the first day there mostly rested and hung out with the kids.

Day two we checked something off my bucket list and went to skate on the Rideau canal, the largest maintained natural skating rink in the world.  It was (obviously) a big day even with just the outing.  We rented a push sled so for the most part I just 'rode' in it.  However, I did rent skates and skated briefly a few times along the way (it's a 7km section of canal). It was fun to glide along although each time I got up my leg muscles became weak surprisingly fast.

One of my disabled brothers moved to the area a year ago so the next day we visited him.  I hadn't seen him since I moved my dad north in 2016 so it was great to visit him in person. I knew this was a bit crazy to "push" this hard (outings two days in a row), on the other hand I thought I'd have a few days to rest before my return flight.

That night I felt horrible and I woke the next morning with influenza (fever, severe aches and a cough).  I've been so so sick ever since.  Even with influenza I chose to fly home because I was so desperate for my own bed and a blackened room - quiet and rest.  I'm not sure what kept me upright for the travel - I was semi delirious with fever, but I made it.

The fever continued for 6 days!  By Friday morning it had finally dropped to a low grade one, but when I got out of bed Friday morning I was so lightheaded I thought I'd check my BP.  After putting the cuff on I (somewhat ironically) fainted!  I came to (uninjured) on the floor with the dog standing over me wagging her tail.

I've felt like such a wimp with this flu - I've just been so sick.  I still have a cough, am terribly weak, fatigued and brain fogged I can't imagine ever doing anything again - my suitcase and carry-on sit unpacked by the door.  My brother got the plague the day I left and said it's left him completely wiped out as well.

Part of my post-flu includes a kind of depression.  I also haven't been able to eat almost at all - complete lack of appetite.

To boot, my dad got robbed while I was away!  We were suspicious about why his cash seemed to be disappearing so quickly so we were keeping careful track.  In a one week period we know for sure someone (likely staff with access to his room) took off with $190 and I'm pretty sure it was about the same ($200) the two weeks before. It's very very frustrating that people who are supposed to be supporting seniors are instead stealing from them!!! It's the last thing I want to be dealing with, however, when and if I recover, we are going to buy a better safe (they stole from his locked cash box).  The theft has also been reported to the police, although likely they can't do much.

I know that influenza is one common pathway to M.E. (post-viral).  Right now I feel like I'm right back at day one post mono (or honestly, I couldn't tell you when mono became M.E.).  I hope the damage isn't irreparable and that I'm back to square one....I certainly hope not.  I had influenza in 2004 two years into M.E. and I know I managed recovery from that bout. Send healing/recovery thoughts my way if you can.

Beauty in Small Things

As most of you are aware, I am a nature lover. Years ago, before I got sick, for almost a decade, I was a year-round wilderness guide/outdoor educator spending much of my year outdoors exploring and travelling wilderness areas. Then one summer I got mononucleosis and never recovered.  While I was diagnosed with M.E./CFS just 7 months later, I also likely had POTS from the get-go, a form of orthostatic intolerance. I was only recently diagnosed officially with POTS.

My point? Like many of us with M.E., the disease is severe enough we lose much of our lives and are more often than not, no longer able to work.  I lost my home, job, almost all my hobbies, and because I had to move, my social life and even some of my friends.

This was 15 years ago now.  However, despite years of usually being home-bound and often bed or couch-bound, I'm still a nature/outdoors lover.  I explore the outdoors in my memory, imagination, through my art, and through the window. On occasion I'm lucky enough to get out to local 'wild' areas.  I  live in a pretty amazing spot nature-wise - the nearest large city over 300 KM away - here we are surrounded by lakes, forest, rock etc.

We also have cold long winters. When I was a winter guide/instructor I loved winter.  Compared to summer, the wilderness areas were almost empty of humans.  There is a beauty in the boreal winter that is hard to describe - the sound of the snow beneath your boots or skis, the stories left by wildlife through fresh animal tracks, the purple-blue skies and sunsets.  (Not to mention we got to travel with sled dogs).

Unfortunately, I don't enjoy or appreciate winter like I once did.  My house is poorly insulated and draughty.  People with M.E and POTS have trouble with temperature control (due to dysautonomia or autonomic dysfunction) and so in winter I'm almost never warm despite always wearing long underwear, multiple layers, and a hat or hoody even indoors.

Despite living fairly north for much of my life (north is relative), the other morning I woke up to a surprise. The trees, fences and plants were covered in hoar frost.  It's frost that forms right from water vapour (gas to solid) when it's quite cold but also misty or foggy.  I walked all around the yard taking photos and I even drove to a nearby park to take a few shots.  I was awestruck. This was a magical experience, the frost was just beautiful.

This is beautiful on several levels.

I just thought for those who hadn't seen this you might appreciate it.  It's beautifully written and resonated with me big time:

https://mobile.nytimes.com/2018/01/10/opinion/in-my-chronic-illness-i-found-a-deeper-meaning.html?referer=android-app%3A%2F%2Fcom.google.android.googlequicksearchbox

Update

I don't feel as if I have much to say, but nonetheless, it's time for an update.  Christmas passed quite uneventfully.  We had a dinner here on Boxing Day that was celebratory but fairly low-key (we had my dad over).  Then of course I was crashed the next day.

New Years eve was awesome.  A friend came up from Minnesota and while we didn't do anything too crazy that night (watched a movie, drank some port, ate a light dinner and yummy snacks) it was such a pleasant night. Believe it or not, I was AWAKE at midnight! I can't remember this happening on a New Years since I got ill! Part of the reason why is that I wasn't crashed that day so I didn't feel the constant desperate need to retreat to my bed.

So while I don't think it behooves those who are ill to be too goal oriented (leads to disappointment after disappointment), I will list things I am happy I did in 2017:

• Believe it or not, I worked part-time (10-25 hrs a week) from home 10 months of 2017 (actually probably closer to 8, but I was officially employed during 10 months).
• I went to the Slate Is. and camped with friends for 4 nights. 
• I spent two more nights in October solo (with the dog) in the woods on a beautiful lake.
• I managed my dad's care, finances, health, and issues including loss of his licence.
• With lots of help, we repaired a section of the house's foundation during the summer - it was mostly quite fun.
• I spent a week with friends in Duluth. 
• After 15 years I officially got a diagnosis of POTS including travelling for the tilt table testing.
• I didn't have any significant relapses (although I did have a 6 week bad patch last winter).

So, really that is an amazing amount of stuff done despite the fact that I remain in bed or laying on the couch all but about 3 hours of most days.  (I work from bed online).

On the negative:

• At times, the trying to work while ill (enduring lots of sickness stuff) was beyond anxiety making, I experienced high levels of anxiety and stress in 2017.
• I endured patches of brain fog similar to when I first got ill.
• I mostly had to give up my one 'out of the house' activity because working sucked me dry energy and health-wise.
• Similarly I wasn't able to do much printmaking as work, my dad, and recovery from these two was all I could manage.
• I lost my closest aunt.

So we are two weeks into January and I am laying in bed doing pretty much nothing useful.  I feel divided about not working (probably til July).  Part of me feels a wave of relief every day I wake up (and given I'm pretty flared this week this relief is doubled). 

Unfortunately, this feeling is then often  followed by guilt - that I should be "doing something useful" with my limited energy.  Oh course I try to tell myself that rest and recovery is useful.

It's funny because when I'm in a crash or relapse I think/feel, "How can I possibly endure another day of this?!! How could I have been so stupid to --- e.g. do that errand, visit my dad, walk a block, etc.?".  But even a day after pulling out of a crash I flip and tell myself, "You really can manage more, don't be so lazy, so negative, it really isn't that bad, you only have a mild case of M.E. etc.".

Just for fun, here's a photo of my dad (and me) beside an old icebreaker (it was hard to get the whole boat into the photo) - he loves to ship watch.