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.