Working with M.E.

I have one or two (if you count POTS) disabling diseases and yet I'm trying to work.  This intense condensed course I'm teaching at present is just kicking my butt. Don't get me wrong, I am really enjoying teaching, it's just hour after hour I sit propped up in bed or in my lazy boy working and I'm still not keeping up. My health status isn't great (I'm crashed) and yet I have essentially 4 more weeks to go at this pace.  And then a course in the fall, and I've been offered a winter course! although those are over 12 weeks not 6.

How do I negotiate this working life while so ill? I just don't have an answer to that. I sit here with a low grade fever, painful lymphs, sore throat and flu/sick ache and wonder why I'm doing this to myself? Honestly, I can't see anyone who isn't ill with M.E. grasping the ludicrous nature of what I'm doing.  There is no other known illness out there where activity (whether it's one that's positive or enjoyable or not) makes you directly and literally sicker.  (And for naysayers this finding is supported by research).

And yet if you asked me to quit I'd say no. I'm willing to suffer some level of consequences in order to participate in this work.  In fact, there is almost no job in the world that I could come up with that would be more ideal.  I get to work (at least with the 12 week courses) somewhat flexibly from home in bed. That said, if I get much worse I'll have no choice, but for now, I'm sticking with this extremely limited sick working life while I hold on by a thread.

I'm a weird duck.  If a (relatively) healthy friend encouraged me to push through and continue to work I'd be hurt.  It would feel like they didn't care that I was choosing to jump off a 6 foot diving board into 6 inches of water over and over and over. Or similarly they might as well encourage me to run head first into a brick wall over and over. "But you're getting satisfaction out of it right?"  The problem with M.E. is you can't see metabolic disfunction, or immune symptoms, or icky flu breathing ache, or lightheadedness and blackouts from the outside. All of the damage and suffering from pushing is invisible (although my roommate sees it to a degree). I do know how lucky I am to even have friends left, let alone supportive ones.

Luckily, I've still had some short outings here and there over the last month.  Not too many weeks ago my dad and I took the dog to a local dock and took photos of her jumping.  I love watching her swim (I also love swimming). Then, there is a local overlook with a memorial to Terry Fox (a Canadian hero) nearby.  One afternoon my dad and I drove over just to look at the view and have an outing.

Really Tough Week

I've been doing too much, especially driving.  I did some driving last weekend in order to attend a dog event. Then my dad had two appointments this week.  Yesterday I was so sick (M.E. sick) that I was ready for it to end.  I just wanted to die.  Really, how much more suffering must I go through in this life?  It's like everything I do is punished, whether that's stuff I really want to do, or just life errands stuff.

I woke up today not quite as weak but still feeling horrible already (sometimes I get a window in the morning).  Since the beginning of M.E., when I'm sick or crashed it feels like there's an infection somewhere deep in my chest, I take a deep breath and it hurts/aches.  Every cell in my body is tapped out and poisoned. It's really similar to having influenza (the weakness and icky part) but M.E. (as I experience it) has a flavour all of it's own. I don't know how much more of this I can take?

For the next 6 months I will be teaching again and today that feels like the worst decision in the world.  On the other hand, in some ways I am very much looking forward to it (hopefully I can keep my brain healthy enough to manage it).

I work completely from bed for a few hours a day teaching online courses (this time a 6 week summer intensive and a fall 12 week).  The summer intensive is all ready to go and will be a whirlwind no doubt.  I know in the past it's occasionally meant some 6 hour days and in order to spread out my hours, usually no days off for the whole period (really 8 weeks work with the marking). The fall course is right up my alley (it's in my field of study) but I've only taught it one time and I don't see where/when I will do anything to adapt and update it given I'm working in the summer.

Right now I have a headache and am dizzy/light headed so feeling thankful I have most the week still to recover from this crash/relapse. Illness is really dragging me down lately, I feel so isolated from the rest of the world, I feel so alone trying to manage life while feeling so horrid. Yesterday I almost collapsed twice my legs were so weak. If I had, I would have been alone.

A Poem

So yesterday June 16th was my 16th sickaversary.  While I know rationally that I was once well (or lived in a relatively healthy body),  I can't really remember what it's like to feel well, not to feel sick.

Since I don't have much to say these days, here's a poem we used to use as a reading in wilderness courses. It popped into my head recently:

The Invitation

- Oriah Mountain Dreamer

It doesn't interest me what you do for a living. I want to know what you ache for and if you dare to dream of meeting your heart's longing.

It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn't interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrow, if you have been opened by life's betrayals or have become shrivelled and closed from fear of further pain.  I want to know if you can sit with pain, mine or your own, without moving to hide it, or fade it, or fix it.

I want to know if you can be with joy, mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, be realistic, remember the limitations of being human.

It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself. If you can bear the accusation of betrayal and not betray your own soul. If you can be faithless and therefore trustworthy.

I want to know if you can see Beauty even when it is not pretty every day. And if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand at the edge of the lake and shout to the silver of the full moon, 'Yes.'

It doesn't interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone and do what needs to be done to feed the children.

It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the centre of the fire with me and not shrink back.

It doesn't interest me where or what or with whom you have studied. I want to know what sustains you from the inside when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

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.