No Wiggle Room

I am in a 'period of worsening'. I refuse at this point to call it a relapse, however, it's been around 2 weeks of 'pretty bad' now. My sore throat has been worse (mostly constant, but still mild) and it hurts a lot to take a deep breath. I'm fatigued and weak and dizzy/light headed and shaky. I feel viral and heavy. This all affects my mood which is lower, and I'm very easily frustrated.

Try being a caregiver for someone with dementia and congestive heart failure while feeling horribly ill and weak yourself. Seriously, I hope that I am not morally weak for my constant lack of patience. The other thing I've noticed with this worsening period is I have no leeway to 'push'. I've been getting away with overdoing it for months and months. Now if I edge a bit healthwise one day then do something, the next day I am back in a deep pit of un-health.

So here I am complaining (again) that this illness sucks. Duh! Nonetheless I'm hoping to escape for a few days at the end of August if at all possible. I am still in the midst of marking, but should be able to pull it all off by next week. The summer here is quickly closing and I need a serious break/breather.

Please send many healing and strengthening vibes my way. Also send joy - not sure how to find mine these days.

July - Busy Busy Summer

The most intensive (six week online) course I teach falls in the summer. I hate being so busy during the best part of the year.  I'd rather spend my limited energy out enjoying the big lake and my pups.

However, it's a course I like teaching and it pays pretty well so I agreed again to do it.  Unfortunately, with the added strain of my dad's poor health and a young pup to care for, it's been very challenging.

My dad was back at emergency last week because his breathing was so terrible. There was a noise when he was inhaling that made both me and his nurse practitioner (NP) worried. She said she wanted X rays and if she ordered them it would take days maybe a week or more to get the results.

She asked me to take him to emergency (yuck!!! it's awful). We were there 6 or so hours and discovered after X rays and blood work that the cause is his pleural effusion (edema or fluid around his lungs) is causing the breathing issues. It's all related to his heart. The Dr. was wanting to admit him, but he also was okay with releasing him given his oxygen saturation wasn't bottomed out.

My dad had trouble even managing the hours we were there with my constant attention, I didn't force him to stay at the hospital. His confusion/cognitive/dementia issues cause him to be agitated and staying at the hospital would make these all much worse.

Not surprisingly since the incident, I've had to spend even more time over at his place helping him. I hit a wall on Friday. I couldn't bring myself to work at all I was so crashed and unwell and depressed and overwhelmed. Thankfully I bounced back and am managing to plug along. It's been poor timing coinciding with my intensive course. That said, there is never good timing for your father to be so ill and facing 'end of life' is there?

Wish me luck. If I'm not on here for a while it's because my life is a whirlwind and I'm just trying to get through each day.

June Updates

I'll try to make this short.

Life continues to be pretty challenging. My health is not good. I am exhausted, weak, viral and very dizzy. I almost got in a car accident 2X!!! yesterday I was so dizzy driving around (my dad, errands).

Then again today he had a dr. appointment as well as banking that had to be done (tax payment was late).

Last week, I did a round of labs for my new specialist. After 5! yes 5 intravenous iron infusions my ferritin is up, however, my red blood count RBC is mildly low!!! therefore I'm mildly anemic!  How can this be after all those weeks and effort going to the hospital for treatments?

My WBC was down to 3 (4.5-11 is normal) with mild neutropenia (again). No doubt as per usual there's nothing to be done. It sucks to be suffering like this daily with no recourse. And I'm just utterly exhausted doing daily tasks and taking care of my dad and puppy. My dad's having issues I won't share here but the burden of managing his care is overwhelming me at present, I'm at the end of my rope.

On the positive, one of my best friends visited last week and come hell nor high water I was determined that we would retreat to the woods by canoe for a couple days as planned. And we did!!! It was two nights but importantly one full day out on a beautiful wild northern lake where I was able to unwind, listen to the wind and the loons and the birds (instead of traffic, construction and lawnmowers) and forget all the responsibilities of daily life.

We took Teags along and I found a dog sitter for puppy.  I'll post a few photos.  Since the trip I've been even sicker. However, I still have two weeks until my next online course starts and it's mostly ready to go, so I'm determined to enjoy these weeks and rest as much as I can.

Sick Day

I've had some decent days lately where I've had the thought "my M.E. isn't too bad anymore".

I've been going for short walks, taking the dogs swimming, and taking my dad on short outings. (I've also been on vacation and avoiding working on my next online course.)

Some days, though, I feel just horrible. This is one of those days. I can point to at least three things I've done in the last couple days that might have caused this crash.

It's clear to me I will never learn. I will over-do and over-do til the end. If you don't have M.E., one thing that's really tough for some of us with either mild or moderate severity is that sometimes when we're doing an activity (shopping, taking on the phone, cooking etc.), we don't feel too badly, so it's hard not to keep going.  In other words, to avoid crashes I can't always listen to my body in the moment (e.g. this activity is making me feel awful) because crashes are very often delayed.

For instance, the friend I walked with two days ago probably thinks I'm fine because she doesn't see that it's 36 hours later where I'm curled into a ball on the sofa crying due to the flu symptoms, ache, weakness and utter fatigue.

On the other hand, I certainly know at this point around where that threshold is. So ideally, I should be more careful to avoid the over-do, given how horrible crashing is.

I crashed yesterday but still did too much. Today I can barely walk, my legs are so weak and shaky. My body aches, my joints included. I feel viral and icky. To be quite honest, I wish my life were done. I know this feeling won't last once I bounce back, but right now I don't want to even take another breath (which makes the ache worse). Being in this sick, weak, viral body for almost 17 years is just too much, I don't want to do it another minute.

So I'm here to vent. This is when some better emotional coping tools would help. I have a few, but am often left feeling alone, desperate, and depressed when I'm crashed or relapsed. One technique I use is to remind myself that the worst of this doesn't last - I always bounce back. And while not necessarily a coping tool, I also try to use something like reading or a movie to distract myself. These are also the days where I regret puppy. She needs exercise and I just can't.

Speaking of puppy, a few weeks ago she learned to swim. So here is a video of one of her first ever swims.

M.E. Awareness Day

Yes, it's come around one more time - May 12th, M.E. awareness day. This June will mark my 17th year ill - not sure if I should celebrate (I'm still here) or cry and scream?!

To all my fellow sufferers out there, kudos to you for enduring this horrible often invisible and dismissed illness.  We are all clearly made of steal - by necessity.

Appropriately, I'm in a crash today. Hot and cold, dizzy, sore throat and lymph nodes and chest/breathing ache. Oh right - muscle weakness and fatigue. Also that indefinable icky achey fluey malaise.  I wish there was some type of alarm that went off when I was over-doing to remind me not to.  It seems that even if I was crashed only a day or two ago, as soon as I'm feeling a bit better/stronger, I  completely overdo.

The last couple weeks have been tough.  I came down with influenza!! of all things at the end of April, beginning of May.  At first I just thought it was a terrible cold and I was being whiney, but then the fever hit. I'm doing better now (just a little coughing).  Then on top of it all my dad has not been doing well, along with heart/breathing issues his memory problems and confusion have increased a lot. I'm over there multiple times a day dealing with something. I won't bore you with details.

Anyways, thanks for all who read my laments.  Everything is not bad all the time. I have some nice things in my life, and puppy has gotten a lot easier lately.  We have a new routine in the morning where I get to lay in bed much longer which has made a big difference.

Here is a good article in CNN! about Ron Davis and M.E. research: http://www.cnn.com/2019/05/12/health/stanford-geneticist-chronic-fatigue-syndrome-trnd/index.html?fbclid=IwAR2iG1tO1tACS_i5y0z0kDeTl6_OGTWb8PhfWRi-aste90--wII9lXArzE0

Life is Challenging

First, I want to say I don't think the 'comments' are working which is quite frustrating. I can't reply to comments you post even as anonymous. I've monkeyed with the settings and everything seems to be fine so I am not sure how to fix this issue. If you don't mind, try leaving a comment and we'll see if it will post. I might switch my blog to another venue if this keeps up.

My dad's health situation has gotten a whole lot worse. He is in congestive heart failure. It's still almost two weeks until his appointment at the cardiac centre so last week we ended up back in emergency for an entire day just to get help with a medication change. It's so hard to watch him suffer like this. I'm over there more than I have been since he moved (thank goodness it's only a few blocks away).

My own health (surprise surprise) isn't great. Although to be fair I'm writing this while crashed having gone to my friend's/roommate's concert last night. I was having an energy moment and just thought - I'm doing it. Since finishing my contract last week I've barely done a single fun time-off type of thing between my dad's medical and mine.

I had another iron infusion last week (my 3rd of 6) and for some reason the IV caused me a lot of pain this time. I even had to have them end the session early. I didn't want to get a reputation as pain sensitive or a complainer but it was so painful! I managed to hold my tears back until I left the ward - burning pain all the way up my arm. My arm still hurts two days later (Dr. google has informed me it's peripheral phlebitis) but it's almost better thank goodness.

I am so sick of being sick. And I am not being careful. As soon as I get a good moment I go out and spend my spoons. I also push through ALL THE TIME to do things with my dad including helping him with daily care. What I'd really like is a vacation.