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.