Force of will is a force of habit

Will I ever conquer this thing?  Some days I think I might; other days, I’m not so certain. 

 

I am continually surprised by the strength of my will.  It took twenty years for this infection to fully diminish my health.  I spent most of my life up to that point thinking that I was weaker than everyone else because my body couldn’t keep up.  I felt that I had to work so much harder than everyone else to accomplish what they took to be the simplest of tasks.  It’s like trying to keep up with someone when they are walking on the pavement and you are walking on deep, dry sand.  You take three steps for their one.

 

Yet, I had what amounts to a normal life in this day and age: more or less.  I think this is because I willed it to be so.  I was determined to keep up and even though I slowly developed more and more symptoms each year that dragged me back, I managed to.  Each time I got really ill, about twice a year, I pulled myself out of bed and got going again.  I don’t know how I ever managed this, but I did it for most of my life. 

 

I think that maybe there is something of this force of will still left in me that makes me so forceful when it comes to improving my health.

 

Yet in two hours, I went from being a healthy’ish and relatively happy person to this hollowed out shell of a human.  I have improved drastically in the last 8 months, but I still feel like a useless bit of furniture; high maintenance furniture at that.  I just get in the way and make everyone else miserable.  Instead of being a productive member of the household, I’m a burden on the people I love.  I not happy about it. 

 

 

I’ve been waiting almost three years to take a course.  It’s a week of instruction followed by a year of homework.  This goes on for six years.  This year it was offered here, in my own home town.  Last year, I had signed up to travel to Gibbson’s for this, but didn’t manage it for various reasons.  There is no way that I was going to let this opportunity pass me by. 

 

I know I haven’t been doing well lately.  It’s not that I’m going down hill, it’s that I haven’t been able to manage my own medication and I haven’t had the help I need to manage it.  So weeks when I take it, I start to feel better.  When I don’t take it, I’m almost how I was 8 months ago.  You would think that my desire to get better would outweigh the part of my brain that knows I hate to take pills (trouble swallowing).  Sadly, my brain doesn’t work that way and my memory just won’t stick.  So there has been progress in some areas – my chemical sensitivities have been reduced thanks to lowering the exposure which allows my body to detoxify – but in other areas, especially digestion, I haven’t been so good.

 

But too bad, I was going to take this course if it kills me. 

 

Well, I did.  I managed all five days of instruction.  We even worked with dish soap in the same room (albeit, a large, well ventilated room with the door open and me sitting right next to said door). 

 

The first day when I came home, I lay on the floor for like an hour.  Literally.  Just a ways inside the front door, was me, on my back, on the floor, doing my Monty Python parrot impersonation.

 

There was some discussion as to whether I should continue but I said that I’m not quitting damn it! 

 

By the end of day three, I was pretty well all in.  My symptoms were quickly regressing to how I was months ago.  That mysterious pain in my side came back and everything else just hurt.  I did sneak out early on the fifth day, but instruction was finished by then so I lost nothing major by it.  Brain fog crept over me at several occasions, but each time I grabbed hold of my mind and shook it until it paid attention.  The few times I couldn’t bring my brain back to know where I was, I just kept writing notes.  A trick I learned in University – if brain not work, then take dictation and sort out notes later.

 

I don’t know what I did to manage all five days but what ever it was; it did a heck of a lot of damage to my body.  I feel it mostly in my hands and my gut.  The digestion muscles keep clenching up on me but then again, how do I notice in amongst all the pain my gut grants me each day?  I wish eating didn’t hurt, I miss gourmet banquets.  Mmmm, 6 course meals at the local European restaurant.  Now that was the life.  It’s the hands that feel it the most.  The skin feels tight and the joints of my fingers won’t straighten.  I think they are just swollen but that wouldn’t explain why I lack the strength and dexterity to hold a fork properly.  I think it’s a Herxheimer coming on.

 

Somehow, I willed myself to overcome my symptoms for those five days.  It’s a lot like how things use to be: it hurt like hell and I did it anyway just to try to keep up with my peers.

 

How come I can’t muster up this will power every day?  Well, I think because my physical health has a huge influence on my brain chemistry.  For example, if I don’t eat well, then my blood sugar spirals and I get infuriated at my self.  On days like that, I truly hate my existence.  Low blood sugar leads to depression or rage which I direct at myself for being too weak to care for my own needs which lead to this very situation.  On days like this, the world is very black and all I can see is how much I have lost in such a short time: My freedom, my independence, my health, many of my friends (those of my age group who have their own lives to lead and through no fault of their own, have no time for an invalid such as myself), my career, my future, my ability to drive, the freedom to enter a shop without the risk of collapsing, my memories, my intellect, my income, my body, the foods I enjoy most, and the list goes on.  On days like that, I see no way out.  It’s not every day; but as I wrote before, my short term memory problems multiply the unpleasantness of the experience infinitely.

 

On days when I am feeling better, most of my willpower goes into modifying my environment.  If I can achieve an environment that doesn’t put pressure on my immune system, then I can get some of my life back sooner.  On those days I want my life back more than anything and I not only have to fight against my own bad habits but, well, to put it bluntly, the bad habits of other’s around me as well.  I seek out the environmental tigers of symptoms and do my best to minimize them.  I have to be so forceful with myself (and even then I don’t listen as often as I should) to remember not to do behaviour X as it causes symptom Y that I’ve just gotten into the habit of being strict.  Another bad habit?  Perhaps.  Not perhaps, highly likely.

 

If my will power was enough for me to get better, I wouldn’t have gotten this ill in the first place.  I would still be holding my own.  I’m beginning to suspect that it’s much stronger than I thought.  But it’s not enough on its own.  Even though I’ve been working extra hard this last week or so to go beyond my symptoms, I’ve still only had half my pills because I just can’t remember on my own.  I don’t know what to do about that just yet.