This year has been a hell of a ride

What is this native tree? (Tropical Birch is in foreground)

I know I am crashing when my eyes get sore and gritty and burny and I am forced to persevere with squinting if I am to entertain myself at all with the computer.  I get jumpy when I crash too.  Little things give me a fright. Noises can be aggravating.  

It is really hard to define how it really feels when you are ill with something no-one wants to know about.  You can be suffering so deeply that you know your body is struggling but it is hard to describe the symptoms.  They are so many and varied but we know that Myalgic Encephalomyelitis is multi-systemic in expressing its neurological breakdown.  When I am going to crash I often can't warm up even though I know I should not be cold.  I can wear a singlet because of the heat and a scarf at the same time because my neck has been sore all year in varying degrees.  It can be sore in a viral way like sore glands or it can be sore in a muscular-skeletal way especially if I lie on it the wrong way and wake up to those strange sensations I get in my head that I only know how to describe as dizziness.  All I have to do is change a facial expression to produce a sensation of disorientation.

I know I am crashing when I get cold feet and lie in bed for hours waiting for them to warm up.  My body often needs a helping hand.  I use wheat bags and such-like when I have the energy to attend to myself.  Many times I just lay there because I am desperate to be horizontal and cannot push myself to tolerate the dizziness or the heart that will race like mad once I stand up. And I am just as likely to feel faint from doing that.  As well as loud, fast beating there seems to be a vibration inside every single cell that I can feel or a rapid hyper mini contraction of all muscles at once?  I have no idea what it is but sometimes my eyelids flutter a lot when I close them and things just feel shakey all over but it is imperceptible to the eye.  "Molecules in motion" I have called it and I wish it would stop.  It will.  It always does after I rest completely which means sleep.  How much sleep and rest I need depends on the severity of the crash.  For the past two weeks I have been able to go out a couple of times a week with crash days in between.  Many experts would say I am therefore doing too much too soon.  Nevertheless I have felt obliged to keep my dental appointments especially if I am not going through another feeling of being in a panic attack physically but not mentally.  If I can mentally cope with the anxiety I always have about feeling the drill (gained from past experience) then I definately put on a brave face and go anyway but I am starting to become aware of what it is in these kind of experiences that is causing the crash I have the next day.  The bottom line is adrenaline.

It is adrenaline that makes us feel nervous about going to the dentist, I would assume, so I expect my heart to race then.  It usually settles down once I am in the chair just like it does for you.  But yesterday I wasn't particularly nervous.  Sometimes I feel unreasonably nervous and I then think something chemical (and unexplained) has kicked in to cause this.  But I was just "normal nervous" this time.  I had already had a root canal in the tooth that was getting a post put in it in preparation for a crown.  I was very relieved to find that indeed the tooth was dead to pain.  Not so the gum.  Don't like those clamps and metal wedges.

When it was over, you could not wipe the smile off my face.  I had not been too bad that morning but the day before I wondered if my body would not be better off having a bit more "no stress" before challenging it with my natural nervousness via a dental visit.  The sore blurry eyes hadn't settled from the last crash (which resulted from nothing more than shopping at Pelican Waters and meeting Karla for lunch there).  What is it that I am doing that my body sees as stressful while I am out?  I laugh a lot and talk a lot.  Yesterday after the dentist I smiled a lot and I told someone how elated I was feeling now that the dentist trip was over.  I felt lively and I had several phone calls.  Instead of sitting down I think I paced while talking on the phone for over an hour.  I am starting to become aware of my own adrenaline surges that are causing the crashes and they mostly occur when I am having fun!!!!  Call it an adrenaline high but if that is what keeps me bubbly and laughing and feeling good, no wonder I got addicted to it.  Some how regardless of my problems with my heart rate going up too much when I stand I think I also have to learn how to be happy without being "exited".  It is like asking me to undo my personality.  I am happy when I am exited and anticipating or experiencing something nice.  I can feel exited by just stepping outside of dentist not to mention how animated I become when I wake up feeling like it is going to be a good day!  It seems people with M.E. have to be wary of extremes at either end of the continuum.

Back to the present - aching all over, sore throat, sore eyes, sore glands but not too dizzy today.  Nevertheless I can feel my body crying.  It is a pain that I can ignore by keeping occupied but it is a little too much pain for me to just lie there and put up with.  My body would appreciate as little sensory input as possible but for the pain I need to keep feeding my body with sensory input to use as distraction or find a pill that works enough so that I can lay in comfort. I am not good enough at meditation to co-exist with all levels of pain or transcend it.  I can usually get myself into a state where I can go to sleep but not always.  There are many fighting for our rights to the strong pain killers that are not denied to people with cancer and AIDS and MS or some other recognizable physiological illness.  Why should we be treated any differently?

Number One Son
He has not moved house.  He phoned and he had a bad case of verbal diarrhea complaining about everything but I could not understand what he meant except generally speaking things are not the way he wants them to be.  I do not know what his complaint about his house mates are but I think he feels left out.  He asked me how I was and luckily I said I was feeling better that day because he has taken it as a sign that he does not have to move out for at least a week.  It seems he is somehow concerned with my health and having to push me around in a wheel chair yet how this connects to him moving to another share house I have no idea.  He makes connections that none of us would make.  He also asked me if we can move to Melbourne again.

Number Two Son
He has been distant the past couple of weekends not going seeking out a chat online but I caught him online this morning very early and the story I have been told has been changed from "I barely think about her" to "I miss her."  Poor man.