Still In Bed

For the past week or longer I've been battling dizzy headaches, pain in my neck, spine, lower back to my feet and I feel pain in my heart like cramping almost.  I feel sick to my stomach periodically, which is par for the course when my head and spine are lite up.  Medication is not touching it. 

I have now been in bed for two days solid and off and on for the last week and a half.  I was taken to emergency by some friends almost a couple of weeks ago.  It was devastating.  I was having seizure type episodes, not able to speak for myself or move other than my muscle spasms.  The doctors in emerg. have no clue as to what M.E. is and treat me poorly. When I'm in this state I can't speak for myself and they think I can.  I never want to go to emerg. since they don't do anything for me there, unfortunately someone else brings me and I don't have a choice in the matter.  People panic when they see me in this collapsed state.  I just need to be put into bed and made comfortable while my system settles back and stabilizes. 

One neurologist suggested, reverse paralysis locked in syndrome. (I'll explain that in another blog, not tonight)   Now, we are checking out that avenue.  There are still tests that need to be done.  Some of which I know I will fail, like the stress test and the table tilt test.  I can't stand too long or walk too much before my heart feels like it's swelling up, my blood pressure rises and I collapse.  Setting up these tests all take so much time.  I am now awaiting to hear about getting an MRA and the others I just mentioned. 

Some of the doctors I've seen are medically ignorant, uneducated jerks!  Doctors don't keep current on medical information and often couldn't care less.  They want the $$ and the easy cases.  How about a doctor who truly has a heart for the profession, willing to work with a patient and do the research.  Fortunately I do have a decent doctor, but not in this area.  I had to go to the big city of Calgary.

The last few days have been frustrating laying here helplessly... thinking, thinking, thinking.  How exciting is that?  I have no energy and if I do anything in the house it wipes me back down, putting me 10 feet back... usually into bed.  Summer is coming and I want to go out and enjoy it.  I could feel that beautiful breeze through my window today.

I am waiting to get my wheelchair.  It's now in.   I have one I'm borrowing from red cross, but it's so heavy I can't pull it out of the car.  The new one I'm getting is lighter, but I have to pay $500.00 to get it.  It's partly paid for by a program, but I have to pay the other amount, which I don't have.  Oh, this is so frustrating.

It was income tax time and I spent the last of my money on that.  My son had to pay income tax and all his money is gone as well.  My son has done so much to help me out in so many ways.  I always feel so bad for him because he's so young and trying to get his life started, but he has me in this pathetic position. 

The food situation is pathetic right now.  There are no veggies, fruit, meat or potatoes left.  All I have now is a bun, some crackers, pretzels and one box of macaroni.  Gee, when you're ill this doesn't help.  Battling with insurance companies for your money is demeaning and exhausting.  I use to have a good paying job at the hospital.  Now I've been reduced to this...

Last fall was very sad.  We made it through by people helping at the most difficult times imaginable.  My animals starved for a few days, as we did also, through the fall and December.  I was just numb about the whole thing.  What can you do?  Cry, but that doesn't help.  It is what it is.  I've never asked anybody for anything, but there was always something that came through in the most difficult times.

My son told me his faith has grown in God even more as a result, because he saw how we would get a break through just in time,... every time.  He's such a beautiful young man and I love him to bits for his loyalty. 

I find myself these days thinking that I don't want to go out into public or social incase I collapse or start to not feel well.  You know people don't want to hear or deal with your physical burden.  I dont' want to deal with it, but I'm have to.  I get tired of explaining it to new people I meet.  If I social with them they need to know incase I collapse one day.  I am really hating this.  I feel so trapped by this dam illness!  So I will blog about it and that way I can vent off what I'm feeling and dealing with.  Then no one has to read it if they don't want to.

Oh, it's so late.  I'm still in pain and the advil and bonamine is not working.  Sleeping during the day has messed up my night sleep.  I'll watch another movie and see if that'll put me to sleep.