Chronic Illness: A Lonely Path to Walk

Beautiful Lake Superior beach

Warning: complainy post

Well my dad is moving back to his suite today after 2 1/2 weeks of living/sleeping here.  He has gone back to his "very needy" phase most of the time, and I'm embarrassed with how frustrated I get with him.

I am SO SO ready to have my bed and space back, to watch what I'd like on TV (not at volume 50 which just hurts my brain).  I do love my dad (a lot), but am not a good caregiver.  I'm impatient with having him constantly on top of me.  I know I should savour every moment with my dad, but this just doesn't seem to be the reality.  Instead I am often frustrated and overwhelmed.

There is lots of work to move him back in, hopefully I can get some of it done today: piles of garbage bags full of clean laundry, vacuuming to do, reorganizing his closet and dresser (hanging and folding), moving in the new bed and box spring etc. etc.  Yes, as you can imagine, not great for someone with M.E.

But I've learned over the last year plus that really it doesn't matter much that I am sick.  My parent's needs trump mine.  And if it adds more layers of ill health and suffering to my life, that's just the way it is...it doesn't matter except to me, because I have to suffer through the subsequent crashes.

This sounds harsh, but it's a truth I've recently learnt.  In some ways having to "push through" more the last year and a half has been good.  I've found that I won't totally relapse (or haven't yet) and I now understand that the added layers of sickness and crashes really don't matter in the big scheme of things.

At some level we are all alone in the world, and I've come to see the absolute reality of this lately. Having M.E. just makes that aloneness worse, because we who suffer from it have to navigate all life's tasks with the equivalent of influenza or mono much of the time.  And yet, there is no treatment for us, no acknowledgement from the medical profession we are ill, no specialists (not a single one left in this province). We don't look sick so there is also little awareness of our constant struggle and suffering from friends and family...unless we complain (which I try to avoid except on this blog).

After some recent tasks, I've crashed so hard I can't lift the book I'm reading without my arms shaking, but that just doesn't matter.  Some days I've crashed so hard I can't walk across the back yard...and so what? Recently I spent 8 days barely out of bed at all, so ill I just wished my life would end...and does it matter? My dad still needed help with his finances, needed a bed bug cover for his bed, and there was no one else to help him get it.

Being chronically ill, living constantly in a sick body, is a very very lonely path to walk.

I do realize I have helpful people (friends) in my life that have saved my butt multiple times over the last year. I'm very very grateful.  But still, I feel as if the amount of tasks/burdens I face while disabled and sick is at times ludicrous.  Like having my arms and legs together,  a heavy brick attached around my neck, and being thrown into a pool, being told to swim. When I manage to keep  my head high enough in the water to breath (aka not drown/die) I'm told "see, you can do it, you're swimming". I don't want to be sick and drowning, I want to live.

However despite my bitc&*ing about feeling so alone with my struggles, I have fit in a little living recently too.  First, my wonderful amazing friend and housemate took me camping for a night to get a break. I was supposed to have a little break/holiday after my 4 month push to plan and teach the online course, but then, of course I had this emergency with my dad.  So we went away for a night  (deserting him here at my house) and camped at this campsite that had it's own private beach on Lake Superior.  While it wasn't the planned week away I'd been dreaming about for months, it was still incredible.  I crashed some after, but it was worth it.

Love these rugged "private" beaches

Also, my brother's family is moving back across the country (from B.C. to Ontario) so on his drive, he and his family's golden retriever stopped here and stayed for a 2 day visit.  Imagine 4 people and two golden retrievers packed into this tiny house! It was crazy.  We took my dad on an outing (since I had my brother here to drive) which was really fun, we also had a bar-b-q, and I made my brother do 3 bags of laundry/decontaminating at the laundromat.

I am honestly so glad to be done teaching my online course. It ended up being harder than I thought it would be, due to some challenging student issues.  This fall I will be back on disability (mostly) earning a little of my own way doing some editing work for a professor.  This should be more doable than an intensive course.

As for the M.E., while I have been struggling with some pretty bad crashes (from doing too much over and over), I would say when I'm not crashed, I am slightly better overall health wise.  I feel very nervous to put this into print, as I'm afraid once I say it, I'll have a terrible crash or relapse (superstitious, I know). Late summer, early fall have always been my best time of year. I'll take it right now.

I had my brain/head MRI this week, and having had MRIs on my pancreas, I thought I would be fine. Unfortunately, because they put a little camera thing around (close) to my head for this test, I actually freaked out less than a minute in, and had to ring the buzzer.  My heart was racing and I was shaky and panicked.  It was horrible.  I did manage to go back in for a few minutes, but will never agree to that test again.  I certainly hope that my scan was clear.