It's been a while

 I haven't written a post in forever. While I won't remove the blog, I do think I may stop posting. Thanks to all who followed me and supported me over the years.

We are coming up to December which is a tough tough month for me. I lost my mom in Dec. 2015 and my dad just two years ago in December 2019, right before covid. Years ago my sister died in December. 

ME/CFS and POTS wise my health has improved over the last 5-10 years in tiny increments. I now work part time on and off during the year teaching online. I still have to be careful not to over-do, I still crash fairly often. Some symptoms are worse than they used to be (shortness of breath) but most have improved overtime. I also now have a diagnosis of chronic neutropenia that the specialist I saw for a while thinks has to do with when I'm flared with post-viral stuff....yes even almost 20 years later.

I feel deeply for all those going through long-Covid. I've lived the the same thing. Being so sick from a virus and going weeks, then months, then years, now decades with little help or support. Having my illness dismissed by pretty much everyone. Suffering alone. My advice if you are new to this, is find others with the same or similar illness, and create friends and community. Without my close M.E. friends who actually 'get it', I doubt I'd still be here.

Anyways, perhaps I'll write here again someday, if not, I wish you all the best.

For those who've followed this blog over the years, you know how much I love being out on the land, in wilder places. I've managed this a handful of times, yes, even with M.E. Canoe tripping means I don't have to walk much, and am not upright when I'm travelling. If I'm travelling I just stop when I feel too tired/weak/sick. I also spend most my time out, at camp, sitting or laying down. That said, I know I am super lucky to be able to manage it. 

This autumn I didn't work part time, so I was able to spend almost 4 weeks between the end of August and the end of October out on the land! Honestly, I want to be back out even though it's tough and 10x tougher when you do it while ill. Here are a couple photos.

Short Update

There really isn't much to report on the M.E. or POTS front. I do think that overall I am improved from 10 years ago. Very minor improvement, but I'll take it. 

Why am I improved? Can I pinpoint anything? I wonder if it's partly just age and time. In fact, I wonder if I will continue to improve once I hit menopause and my hormone profile changes.

While I would never recommend exercise to anyone with M.E. (it can make things work and cause permanent decline), I do think my regime of gentle walking when I can manage it has helped.

That said, I still have lots of ups and downs, many crash days lately. I'm crashed today from walking too much yesterday. 

As December looms, my mood plummets. I'm trying to get outside for lots of air and sunshine; I try to distract myself as best I can without crashing. But the waning light and the memories of a year ago seem to seep in through the cracks of my resolve. 

I am missing my Dad and thinking of just over a year ago when he ended up in the hospital for a final time. Likewise, 5 years ago (which sometimes seems like yesterday) my mom passed around this time of year (Dec. 2nd). Up until this year my recent life has revolved around their care. I've struggled to find meaning and love in my life since. I am still teaching online part time which sometimes helps. I also spend a lot of time training and hanging out with my dogs.

Here are some photos from the last couple months.

Been Away a While

 Hi Readers (if there are any of you left). 

I apologize, I basically ditched this blog. 

I was going through some grief stuff having lost my dad, then I worked more than usual in the summer. Then add Covid-19 to the mix and I just had no inspiration or energy. Any energy I have had has been spent outside whenever I can (I worked hard training my younger dog in back yard agility this spring and summer).

I'm going to make this short. 

I had a big birthday this year but due to Covid-19 both my camping trips were cancelled. I did get out one night with my roommate/friend on my actual birthday which was amazing. I also ended up doing (and surviving) two solo wilderness trips with the dogs. One was four nights, the other five nights.

Fall is now here and I've had a bad patch M.E. wise. I believe I continue to be improved overall, but it doesn't always feel that way. Today the M.E. is heavy in my chest, making it ache to breathe. And I feel heavy and exhausted, the sick kind of exhausted. 

I'm also dealing with on and off anxiety these days. Not sure what that's all about, but the only way I find to curb it is going outside. Which can work if I'm not too sick and exhausted and/or if the weather is agreeing.

I took the dogs for a walk in the woods the other day. Here are a few photos.

The Restorative Power of Nature

As you know, I'm having a really rough time at present. My chronic illnesses have been flaring, Covid-19 restrictions have led to increased feelings of loneliness (and worthlessness), and I'm still struggling with the loss of my dad. However, any time I manage to get out for a short walk in nature it helps. Sometimes it helps a little, sometimes a lot, but with every nature outing, I notice a perceptible shift in my mood.

Today, I decided to make time to head out for an hour to one of my favourite local trails. It's pretty unknown, it's Monday (so few if any users), and a section of the trail is flooded at present so I almost never see anyone else there.

Right now the final patches of snow are melting, and the moss is a vibrant green. We (the dogs and I) don't just walk when we go—we play fetch, they swim in the river, we explore, and I often find things to examine or spend some time just sitting and soaking it all in, breathing the fresh air.

Forest Trail

A Mossy Blanket

Vestiges of Winter

No, it's not a beaver, it's a Ripple 

The Loneliness of Chronic Illness Exacerbated by Covid

It's been over a month since things have been locked down due to Covid. In some ways, my life hasn't changed much at all. I finished up my course (it was hard, like pulling teeth every day). However, since finishing a week and 1/2 a go, I've had trouble slowing down, appreciating my chance to rest and recharge. I've been plagued by bouts of anxiety.

If I try to relax, I start to worry about everything I 'should' do before my next course in July. There's also some Dad estate related tasks pending. This week I got together all the tax stuff and reorganized his file box.

The last two days have been our first warmer days. The first one I went out and spent a lot of time in the yard. I got a little sun, and the next day was crashed/flared.  This happens to me whenever I get too much sun, even if I'm mostly sitting. Of course I went down a research hole (again) and it's common in a number of autoimmune conditions to have a flare from sun exposure. And since POTS is likely autoimmune and M.E. has immune components, I guess it isn't surprising I flare after sun exposure.

My house has a lot of issues so since my Dad passed, I've been seriously thinking of moving. But all the 'to dos' involved have me stressed. Alternatively, if I stay here, I'm too sick to do any of the fixing/maintenance/upkeep.  For example, cracked leaky foundation, outdoor drainage issues, floors that need redoing, water damaged ceiling, unfinished walls and ceilings, painting, electrical, cupboards, collapsing patio, rotting molding shed, precarious falling down fence, mold in the walls, lack of insulation etc. It's all just too much.

But figuring out the whole process of moving and finding something smaller, more doable/low maintenance all on my own is also completely overwhelming. I've played with the idea of selling my house and taking that money and my small chunk of inheritance and having someone build a well-insulated small/tiny cabin on some land. But land near town isn't exactly cheap, it would have to have a well/water already. There are just a million details that would have to be figured out in order to sell one house and build another...all on my own, while ill. I'm having trouble coping with just the small tasks on my plate.

Additionally I think, what happens when I'm living out of town and sick? How do I get groceries on a bad day? How do I cope with the isolation, knowing I have no friends and/or family near by? My roommate isn't interested in moving with me if I move (I think she's ready to move on as well), and she's probably the only person I'd consider a close friend in the entire region.

I knew I'd feel a gap and loss and loneliness once my dad was gone when there was no-one left to care for. I had his company/friendship almost daily for over 4 years. While grieving this loss, Covid restrictions have now isolated me further from everyone but my roommate (who isn't here a whole lot).  It's brought to light my lack of social support/community. But where could I move that would be any better? No where. I can't think of anywhere.

While it's a dark thought, it would be a relief to have Covid (or something) take me. I really don't feel like I want to stick around anymore. I lived a decent life despite almost 20 years of chronic illness. I really don't want to face another 20 years sick, poor, and mostly isolated.

February Blues

I think I have the February blues. Except it's March. My mom (who struggled with depression) always said this was the toughest time of year for her. For me, it's always been December with the low light and short days. I've also now lost 3 family members in December.

So after my last iron infusion in January, as you may know from reading my last blog post, I ended up going to emergency with severe nausea and stomach upset. It took almost 4 weeks to recover. I lost 10lbs. I'm convinced it was a reaction to the iron infusion (and some of my tests did indicate I got too much iron).

Right now I'm in an unrelated flare/relapse, the M.E. kind. I suspect it's due to my body fighting something. Often when there's a cold or flu going round instead of catching it, I get an M.E./POTS flare instead. Which honestly is worse. I'd rather have a cold.

I am so unmotivated today. I just want to lay in bed again all day. Since getting my puppy just over a year ago, on the whole I've maintained a higher level of activity then before puppy (both with my dad's care, part-time work, and a puppy). While it's been super hard, one of the good things is I've managed to walk or take the dogs swimming fairly often. The time spent in nature, outdoors has been so good for me mentally and spiritually even if not physically (although I'd argue that it's helped physically too in some ways).

Right now I'm too crashed to walk, and Ripple has a torn dew claw. Thankfully this is nothing serious, but she keeps re-injuring it. Given her energy level, she can be a bit much when she doesn't get her daily exercise. We are both missing it (and likely my senior dog is too). I am hoping and praying this relapse/crash is short lived. How is it possible to be this weak and sick with no recourse??! It's mind boggling. And in case you're wondering - "I look great". Sigh.

Trip to Emergency - history repeating itself

I have now gone to emergency twice in my adult life. Both times since M.E., and both times for gastrointestinal distress.

Long story short, after my last iron infusion, I developed what felt like a stomach flu. Seven days later while some of the symptoms were improving (diarrhea) the grumbling intestinal distress, burning like pain, and severe nausea were if anything, worse. I had an appointment in a week, but didn't think I could take another full week of nausea.

For a Monday, when I got there, emergency didn't seem too busy but it quickly filled up. (One nurse told me that ours is the busiest emergency department in Canada. My suspicion is this is partly due to lack of family Drs. Even if you have one, sometimes appointments are scheduled weeks out). I was in the waiting room 3 hours sitting up with waves of severe nausea. Just when I was about to call it quits and go home, they called me in. I saw a Dr. for seconds, she ordered tests, a few pills, and IV fluids.

Four hours later (7 total) I was released with no clear idea of what was wrong. They suspected my ulcers were returning and gave me a prescription for a PPI. They told me that they don't do iron studies at the emergency lab so they had no idea if this was infusion or iron related.

The last drug they tried with me before I left was plain old gravol, an anti-nausea pill. While it didn't help much with the nausea, on the positive, it's sedative properties meant when I got home, I dozed off on the couch. Once I dragged myself into bed I passed out completely.

Then I had a night full of drugged dreams, some of which included driving around with my dad.  These dreams, and the whole experience made me miss him even more. Partly because we spent too many hours at that emergency together over the last year (I don't miss those times). Partly, because the lack of his presence wasn't lost on me as I sat there alone. Most people had kids, parents, partners, friends with them. I woke up this morning feeling desperately lonely for my dad. Also aware of my aloneness in the world.

That said, as I write this I'm surrounded by the warmth and love of golden retrievers, and that is something.

Grief and Loss

I've lost people I've loved before. My sister died when I was a teen. When I was in University I lost an aunt I was close to. More recently, I lost my mom and my aunt Laura. Death is part of being mortal, thus loss is something we'll all face and have to move through.

In some ways loosing my dad feels like the hardest hit yet.

Why has this been so tough for me? He was 89 and quite sick the last few months.

I think there are quite a few reasons. For one, I saw him almost every day the last four years. I miss his presence acutely in a way I didn't with some of the other losses I've faced. There is also the fact that we were close. I also think the fact that I was his care-giver has a role to play. This results in me sometimes feeling relief, but also a desperate kind of emptiness. To nurture someone for years and then have them gone leaves a gaping hole.

Taking care of my dad shaped my recent life and gave it purpose. When you have a child you nurture and care for someone, you put all kinds of energy into their well being, and you hold in your heart hope for their future, that all your time and love will hold them up in some way. But when you nurture someone who's near the end of life, what do you hope for? I spent hours upon hours, days upon days, months upon months with him, and now it's over. And to what end?

Those of us with disabling chronic illness know all about loss. We face monumental loss when we get sick, one that a mostly healthy person could never understand. If the chronic illness is disabling, we lose our jobs, perhaps relationships, and often our sense of identity - we can no longer do the things we once did.  I went through this huge loss in my early 30s. While I've been able to build a semblance of a life, I still feel the loss of a healthy body in small or large ways almost every day. (Too sick to go to a movie, a restaurant, a party, not being able to go for a run, or a hike, not being able to travel,  forced poverty or near poverty because I work minimally.) Basically, being disabled means having to deny ourselves almost everything that once brought us joy/pleasure - which is a constant process of loss.

Where am I going with this? Honestly, I guess I'm just kind of rambling.

Am I doing okay? Not really. I feel desperately alone in the world. I'm working part-time online again this semester and trying to motivate myself to so much as look at the screen, it's like torture. It all seems so pointless.

I had an iron infusion on Friday and it crashed me so hard that Saturday I barely moved (and when I did every cell ached). Thankfully I only have one infusion left in this round.

December Updates - Sad News

November and December were terribly difficult months.  My dad's health declined significantly over the last couple months to the point where he ended up in the hospital on December 6th. He was eventually moved to a hospice floor in a different hospital on the 12th where he died two days later on December 14th. I sat by his bed for much of it. He was conscious on and off especially the first 5 or 6 days but stopped eating (couldn't swallow) and stopped talking.

Since then I've done a lot of paperwork and caregiver/executor type tasks. Right after he died I was so exhausted I barely moved from the sofa for a couple days. I was so dizzy, lightheaded and exhausted, utterly exhausted.  We've already had the funeral at his church in Kitchener, the city where he spent most his life so I've also had to travel.

How am I? Incredibly sad and now depressed. For 4 years this man has been with me for part of almost every day.  While it was a struggle sometimes, especially recently when he required more care and was visibly suffering, mostly it's been good. I feel so blessed and grateful to have accumulated years of memories and times together with him.  Not only that, but my dad loved me to the moon and back. Everything I did seemed to make him proud.  To be loved and appreciated like that is pretty rare and I doubt I will ever experience it again. Importantly, having experienced my mom's passing 4 years ago I very often tried, and remembered, to consciously savour my time with my dad. I told him often that I loved him and hugged him lots.

Everywhere I go, everywhere I look lately I have memories of him. I miss him terribly. And to be completely honest, I feel done. I just don't feel there's anything left to live for. I don't want to keep going without him, all alone. For the last couple weeks I've been living in a daze, getting stuff done, but besides the waves grief and loss, feeling nothing for anyone or anything else - no interest, no enjoyment, no affection....just nothing.  I just don't want to move forward. I feel devestatingly lonely without him in my life. I don't know how I'll move on.

Updates

First, I want to thank people who have been commenting. I still can't figure out how to post a response even as anonymous (very strange), but please know that I read and appreciate them.

I am not so well today (crashed). I have been doing a lot. I think that while I am no means better from the M.E., I am overall improved. I seem to be able to push harder and longer than I have the whole time I've been ill. That said, I have had two infections already this fall (which ironically sometimes gives me an energy boost). The most recent one was either a severe cold or influenza (came with a fever) and lasted over two weeks.

It's been a tough month emotionally. I was headed to a wedding for one of my best friends and got only 90 min south. The residence where my dad lives called to tell me he was rushed to hospital as his vitals were all crashing. Needless to say, I returned home and despite exhaustion continued to visit him and negotiate the various elements of him being in hospital then returning home over the next week.

He is back home but his dementia has now gotten significantly worse to the point it's very very difficult for me to be around him.  It's like I've lost the person that was mostly there just a few weeks ago. I also deal with some kind of issue everyday I visit (mostly hygiene related).

It's no wonder I've crashed what with still working part time, dealing with highly highly energetic puppy, and my dad and his care.

This week, I got out for a couple hours with a friend to paddle on a local river. Most the leaves have left the trees so winter is just around the corner. I'm also including a couple dog photos taken after our first snowfall last week. Another friend and I did a short walk to a local waterfall with our dogs.

Ripple looking all grown up

My sweet old gal

Drudgery

The drudgery of chronic illness, is that it just never goes away. Ever. After years and years of feeling horrible but "looking great" it gets old. For some reason lately it's hitting me how much of my adult life I've spent sick. And how being sick has stollen so much of my (potential) life/living - missed events, missed work/employment, miss recreation, missed relationships, missed travel, missed friendships and time spent with friends. Years and years have passed.

I'm getting to an age where more peers are encountering health problems. I feel empathy. Although selfishly this also makes me sad because I know my window to improve or get better before my body ages is closing fast (aka unlikely).

I've had a tough week healthwise so I'm feeling blue, whiney, and sorry for myself.

Some good things have happened lately. After a hospital visit a couple weeks ago, my dad has stabilized due to some medication adjustments. He is by no means better, but he's holding for now.  I also got a week or so off around labour day and spent four days in the woods on a lake. For two of them a friend joined me. It was so mentally and emotionally healing.

As for this most recent crash/relapse, it's likely because I'm doing too much. Day after day after day. Last Sunday I drove out to watch a dog thing and I shouldn't have. Monday I woke up crashed (expected) but a week later, I'm still waking up every day crashed. It really hurts/aches to take a deep breath, like there's a deep seated infection in there. My gut is off, I'm lightheaded most the time, and I feel fluy, achy, sore throat, completely wiped out and just overall awful. And yet no one can tell from the outside, and I feel there is no one TO tell.

Seriously no-one seems to give a rat's ass. Why would they? It's gone on so long. No one ever asks how I'm doing anymore.  Maybe I've scared them off because years ago when people asked I always felt awkward and embarrassed that I was still so sick (but looked fine). I would deflect.

And what do you say to "How are you?" when the truth sucks so much? "I still feel like bunk every single friggn day, some days and hours are worse than others but there are no words to describe how sick I am all the time."

I feel so alone and unsupported. Being this sick constantly with two invisible illnesses makes life incredibly isolating. Add to that - when I do interact, all anyone seems to point out regarding health is either what I've managed (to force myself to do) or that I look great/okay. It is so lonely making I can barely stand it, particularly on my crash days. It's like I'm physically fighting this horrible monster that's trying to ravage my body - no one can see - it thus it's typically downplayed or completely unacknowledged.

I really feel that outside my dad and the dogs, there is no-one who'd more than bat an eye if I dropped off the face of the earth.

On that cheery note, here are some photos of my camping for the stalwart folks who still read my depressing rants and vents (thank you by the way). I'd love to hear how you are doing (honestly) in the comments - whether you have a chronic illness or not.

Please can we come in the tent?

There were cool mushrooms everywhere

Up in time to watch the sunrise with a cup of coffee

A rare snuggle from Rip

When you lay on the ground a lot you notice the trees and sky

Sunrise paddle on glass

Selfie with my old gal

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.

New Specialist

I have a new specialist, however, she is not an M.E. specialist. She is an internal medicine Dr. who specializes in haematology.

My white blood count, as those of you who follow this blog already know, tends to run low. Specifically, I get a low grade neutropenia fairly frequently. This is common in a number of autoimmune illnesses and with chronic viral infections. The new specialist also explained that this can happen after a severe viral infection (like hepatitis or mono).  I asked whether "even after 17 years" and she said yes.

She tested me for a bunch of the ones I've been tested for before (various anemias and autoimmune illnesses mostly). And while many doctors don't buy into the idea of a chronic Epstein Barr or mono infection she does think this is possibility in my case (that my body never fully fought it off). Either way, we both agreed that antivirals weren't a good option (partly because I've tried so many already with no real improvement and the side effects are pretty awful).

She is actually familiar with POTS!! which has never happened for me before outside the autonomic testing lab I went to Hamilton (and my M.E. specialist way back). Most doctors in this country (in my experience) seem pretty unfamiliar with it. Thankfully, she was not dismissive of the M.E. either.

She is testing me for a few more things (autoimmune, inflammation markers, and hepatitis) but given past experiences I don't see any of it coming back positive.

She also convinced me to try a treatment for my very low iron/ferritin stores.  I've had these for over a decade because I can't tolerate ANY version of oral iron without severe gastrointestinal distress, and I really mean severe. I am receiving iron infusions at the hospital once a week for the next 6 weeks.

I had my first one this week and while I didn't have too many side effects (thankfully) I am horribly horribly crashed. This, I think is from everything I've been doing as a result of my father's heart condition and fall, puppy, and to wrap up my course/teaching for the semester. I am feeling so ill today there are no words.

I think you need a photo of puppy.

Ripple with a raven feather

Back to Emerge.

Last spring my dad tripped and fell. We ended up at emergency however, thankfully, he did not break his hand.

This time he fell in his room (a fall rather than a trip) and scraped his face. There was some debate, but I decided to take him in just in case. It turns out he may have been dizzy due to A. Fib. When we got to the hospital his heart was all over the place. The emergency got busy throughout the day Sunday so it was hard to get anyone to tell us much at all. They just kept monitoring him.

For someone with a chronic illness and a father who couldn't manage alone (he freaked out when I left for 15 min), it was a trying couple days. They ended up moving him to a cardiac floor so I got home at midnight (then back the next morning).

He is now back home with some nursing coming in and the resident staff (PSW) checking on him. While not the main issue his face is now horribly bruised and swollen. We are now loaded with appointments in the next two weeks.

I don't seem to be able to catch a break lately. I have puppy who still needs a fair bit of focus (although it's getting easier and I love her a ton already), a pile of marking I need to do, and - oh right, my own appointments.

I'm seeing a specialist about my frequent low WBC (white blood count). Unfortunately if history serves I will be told I am a completely healthy woman as my bloods are otherwise normal (not sure why I'm going).

Wish me luck over the next couple weeks. I have a feeling my dad might become harder to care for but I'm trying to just get through each day with these emergencies that come up.

Extra Challenges

I consciously and deliberately brought a new challenge into my life despite all the other challenges I face on a daily basis. For instance, working part-time while ill, caring for my dad while ill, and just being chronically ill!

The good news is while it's still really really tough, puppy has gotten easier.

She now sleeps through the night most nights (in her crate). She can also behave enough to hang out with me and Teags in the living room where I spend much of my awake time lying on the sofa. I'm still expending more than my limit of energy, but I'm getting closer to what I can manage without being constantly crashed. This week has actually been pretty bad health wise, but not all of it is due to puppy.

Also, I am forming a bond now with puppy.  Her personality is emerging and this has made a big difference. While I would probably love any dog I met on some level, the human-canine bond (in my experience) is not instant. I think the fact that I dealt with the young puppy stuff while feeling almost constantly horrid doesn't help. That said, I remember it took some time to really bond with Teags.

As someone who trains dogs (and did before I got ill), I think that training piece helps. When you train with a dog (with positive techniques), part of what you're doing is attempting to communicate. To communicate well, you need to really get to know the other individual, what they like and don't like, what motivates them. Through our time learning together, we are getting to know each other and this helps (I believe) with the bond. Ripple has learnt some basics like sit, down, target, wait, how to crate, and now we are working on a solid retrieve (this is essential as it will be a big part of how I exercise her given my inability to really exercise).

I'm now at the point that I really love the little gold nugget. She is becoming family.

I have had so much help with her it's ridiculous. For instance, the last two Fridays someone has taken her overnight. She goes to a puppy school sometimes two mornings a week (also funded by friends).

So that's my update.