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.