Thursday, August 12, 2010

I Still Survive!!!

In the words of E.R. Burroughs John Carter of Mars: "I Still Survive!!"

That small act of defiance to tweak the nose of my illness is a sort of anthem of mine. I wish that I could shout it from the top of a high mountain that I have climbed on my own two feet. Instead I whisper it in the night to the monster who steals my sleep. I chant it over and over in my head while I struggle to walk across a room or across a parking lot. I say it with a sigh of satisfaction after a busy day when I push myself to my limits to enjoy every moment. "I still survive!!"

Some days it is very difficult to utter that phrase. Those days I just want to give up, days when I just want the pain to stop. Days when a fog of pain is all I know. Yet, "I still survive!!"

Having good friends helps to give me the strength and the want to hang on, to reply to the prods and jibes of the D*mn Disease with: "I still survive!!"

Life is lived one day at a time, because every day is different for me. It is a difficult life, and 2010 is a milestone year for me. I have been "officially" severely disabled and practically housebound since 1990. Twenty years waiting in the hope that a cure will come, that maybe treatments will come that will at least free others from my fate. I would be happy if I could trade mostly bedridden for the practically housebound of twenty years ago. Any day that brings a smile and a bit of pleasure counts as a good day and that makes my good days more frequent than my bad ones and hence "I still survive!!"

I have traded hope in a cure for hope in more tangible things. I'm not advising anyone else to give up hoping for medical advances, but I will let them hold that hope for me. I cannot emotionally deal with hopes trashed any longer. Instead I put my hope into smaller things, things that allow me to take my life from that distant day when there is a medical miracle and place it in my own hands. Hope for a good day to celebrate a birthday. Hope of getting strong enough to board a plane and go and visit a friend in Florida, on the opposite side of North America from my home on Vancouver Island. Hope that I will find a dress that fits and looks good on me. Hope that I can sit in my garden and enjoy a few hours of peace and beauty. Small hopes, larger hopes. Hopes that I will someday cross things off of my "Bucket List" as done. As I do these things I smile and say with pleasure and pride: "I still survive!!"

It is a simple statement, but a profound one. This is my reply to those who ask me how I am doing:

I Still Survive!!

Thursday, June 24, 2010

34 yrs married...

My hubby and I just celebrated our 34th wedding anniversary. Oh, do I feel old.

It hasn't been an easy 34 years. We married just out of high school. Don was a year ahead of me. He proposed to me on my 18th birthday. Our folks were not pleased. We married on my high school graduation day.

Chronic illness is second only to financial problems as the source of marital problems. Since my health problems contributed to the financial stress the odds of our marriage surviving for so long were low. Oh well, I've always been one to defy the odds.

When I am asked how we have managed to still be together I tell them "separate bedrooms". lol. My room is set up for my needs. If my body clock is turned so that I am awake until dawn and sleep until noon then I can watch TV or putter on my laptop without bothering my hubby's need to get his sleep and get up for work. If he tosses about all night he won't keep me up either. We like different temperatures for sleep. I enjoy having my cats sleep with me and he keeps his room cat free. My CPAP machine doesn't cause Don any problems. Don used to be a smoker and I am allergic to it. But if we want to cuddle.. then cuddle happens.

Tonight I am up late. I had a busy, active day and my body is still wound up and so is my mind. I am reclined on my bed with my laptop on a bed tray, the TV on, with cats beside me. If I tried to sleep right now I would notice all the achy places on my body that I can ignore while I am paying attention to other things. The aches and pains will be uncomfortable enough to keep me from relaxing enough to doze off.

I will not be surprised if I am up until dawn. The short night of June will make for an early dawn. One of the most annoying parts of living with M.E. is the delayed fatigue problem. I will pay for several days for the energy I used in the past 12 hrs. But I did have an enjoyable day so I have no regrets. Regrets just make for sleepless nights.

When I am tired I tend to ramble, and I am tired. I wish that tired equated to sleepy for me, but it doesn't. For many of my friends with Fibro, M.E., PPS, or MS, the problem is a shared one. We don't need caffeine or any other stimulant to keep us feeling like our eyes are crazy glued open. Then we get other times when all we can do is sleep.

Another year has come and gone.. and my hubby and I beat the odds for another year.

Thursday, June 3, 2010

Another Slow Day

Life for me is lived in the slow lane.

A body needs energy to function, and today is another low energy day for me. That makes even the simplest of things difficult. Even setting us this blog page is difficult for me.


It is not an unusual thing for me to have days like this. The unusual ones are those where I have a clear, active and cooperative mind where I have no problems with working in HTML or writing down my thoughts in a clear and entertaining manner. Today I struggle to think of things to say, struggle to then hit the correct keys upon my keyboard to put the thoughts down where I can post them.

It is a difficult way of life for me, for a person who once made a living from my skill with words.

Today is a difficult day. Neither mind nor body is being very cooperative.

Then why am I sitting here, blogging??

A dear friend asked me to. She asked me to take up blogging as a way to keep in touch, as a way to share my world with her, and for me to follow her life with her blog.

I will work on this blog page as I can. This is a start. This is enough for today.