There's just NOT enought hours in every day...........

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There, Ive finally said it!
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There is not enough time in every day (these days), to do all I want to do.
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It only seems like yesterday that the days dragged, seemingly, for never ending hours. Prior to February this year, I kept counting the hours, minutes maybe even seconds that my work day in an office dragged on.<o:p></o:p>
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Maybe it wasnt so bad when I had deadlines to meet & I had to summon every ounce of energy to meet the target (at least that was a challenge, & I used to thrive on challenges).<o:p></o:p>
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Then after I walked home in mind-numbing exhaustion, the evenings stretched into eternity as I clock-watched the hours until I could go to bed.<o:p></o:p>
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(There were good times as well just not as often as I would have liked). <o:p></o:p>
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Then there were the nights. <o:p></o:p>
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Nights when I tossed & turned, woke up in pain, eventually falling back into a restless sleep punctuated by vivid dreams or nightmares. And despite the meds to help me get some restful sleep in the last 4 years, (since I was formally diagnosed with Fibromyalgia in May 2006), I felt as though I had no restful sleep at all. My GP finally conceded that I probably had CFS also.<o:p></o:p>
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Initially, I was desperate to prove or disprove this possible diagnosis of CFS.<o:p></o:p>
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Then I realized (& accepted) that proving this diagnosis was not going to change my life in any way!
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My life was Groundhog Day (that never, ever ended). There were just too many hours in each day, in the past.<o:p></o:p>
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These days, I just cant find enough hours in the day. I look forward to each new day unfolding, so that I can enjoy pleasurable activities & positive emotions.<o:p></o:p>
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It is sooooooooooooo lovely to have the energy to actually DO something. It doesnt matter if I wake up stiff & in pain. I know the stiffness & pain will go away in an hour or so - nearly every day now. <o:p></o:p>
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I still go through intermittent episodes of severe pain. Well, they seem severe at the time I am going through them, but when they ease, they become a memory.<o:p></o:p>
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Bad memories are worth keeping in the background, not in the foreground of your life.<o:p></o:p>
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I still have a constant background hum of pain & occasionally other (scary) symptoms. In the early hours of last Tuesday morning, around <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:eek:ffice:smarttags" /><st1:time Hour="1" Minute="0">1.00am</st1:time>, I woke with severe chest pain & left arm pain. I felt terrible. I couldnt find my pulse (usually easy to read with my fingers). I eventually got up. I debated whether to call an ambulance (as I have debated several times in the past). How do you make these decisions when you live on your own & have been diagnosed with FM (& probably CFS). Its hard to think rationally & sensibly at these times. I had been told off by the local Hospital emergency department once before to just call an ambulance (in these situations). It doesnt matter if its a false alarm. <o:p></o:p>
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Was I having a heart attack? I got out my BP machine & took my BP - 285/93 it read. My BP machine must be faulty. My worst BP in the past had been around Nov 2006 when I had a thallium heart test in the Cardiac Unit at the local hospital my BP then was 220/110. <o:p></o:p>
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I felt pressure on my chest. Was I now having an anxiety attack? I took some Bach Rescue Remedy. Several times. I felt slightly better. I took my BP again 185/91. That was better. I took some more Bach Rescue Remedy and did some of my relaxing deep breathing technique (which I found could lower my BP dramatically in as little as 5 minutes). My BP dropped to 165/80, & then 5 minutes later to 154/80.<o:p></o:p>
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This was good enough to restore my calm & I went back to bed eventually sleeping for a few more hours.<o:p></o:p>
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Another emergency over. The next morning my BP was 140/80. Sometimes it even gets to a healthy 120/80 reading, which is usually considered normal for most people. (Low BP is considered just as serious as high BP by the way).<o:p></o:p>
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There are still days when I am not as active as I would like to be. So I just go with the flow & take a break & rest or watch a movie.<o:p></o:p>
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You cant explore new oceans, unless you lose sight of the shore.<o:p></o:p>
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I found that it was time to leave my obsession with health & well-being behind. It was time to stop researching every symptom chronic or new found. Time to stop searching for the ultimate supplement regime. Time to face up to the fact that on my reduced income, I could no longer afford what I considered to be the perfect diet (for me at this time in my life). Time to stop experimenting with this food & that regime.<o:p></o:p>
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I found..
  1. Theres too much information coming at me, too fast. I couldnt hope to absorb it all (let alone digest what impact it might, or might not have on my life).<o:p></o:p><o:p></o:p>
  2. That my reduced memory did not allow me to store all this information. I was reluctant to admit that it really was impossible for me to store the many facts & figures (let alone the latest research). The reality is that I forget most things I read & most conversations I have, very, very quickly.<o:p></o:p><o:p></o:p>
  3. That obsessing with health matters cramps my freedom & creativity.<o:p></o:p><o:p></o:p>
  4. That theres just not enough time in the day to have a Non-life of Chronic ill-health AND a Life worth Living.<o:p></o:p><o:p></o:p>
  5. It was time to stop Rehearsing my Life and start Living my Life.<o:p></o:p>
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In retirement from full-time work, I feel so blessed to have the time & new-found energy to do this.<o:p></o:p>
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I hope that you all find a Life Worth Living in the future, & obtain the energy to explore new ways of living with an ICI (if not the cure you so desperately desire).<o:p></o:p>
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Comments

A heartfelt congratulations Victoria!

My experience is that with a whacked out stress response that anything you can do to reducing stressful inputs, from stopping worrying about symptoms (what a stressor that is by the way!), being irritated with them,to being irritated or resentful with anything actually! and just letting things be (never easy but so nice when it works) leads to feelings of well being and better health (even if I still can't walk worth a dang). FOr me ME/CFS is about a body over reacting to just about everything from foods to smells to activity to thoughts - the system is on edge and if I can take it off edge - I do better. I just seem to have a very, very low 'over-stress' point.

What an interesting experience you described; somehow your body as you slept got very upset over something; the wires got crossed, signals were sent to elevate your blood pressure and there you were, all of a sudden in the middle of the night, with extremely high blood pressure and pain. Isn't that CFS in a nutshell? All of a sudden, there you are - your body going nuts - for no discernable reason ...and yet there you were able to get it under control again, to basically arm wrestle your autonomic nervous system into submission or into stability. That must have been a wonderful feeling really.

I'm so glad you found some peace. I well remember how things came to a head at work - your system just couldn't tolerate it any more - and look at where you are now. :) :)
 
It's the second really bad experience since I stopped working, Cort.

Probably had a dozen or more of these really, really bad episodes in the last 10 years.

Scary when you're having them, but nothing wrong with me the next day.

I'm getting better & better (overall) all the time. But my wellness is dependent on pacing, getting out in the fresh air & enjoying creative activities.

It would be nice to say I am 100% well (but that would be a lie).

But I am 97% Happy (despite these intermittent bad episodes).
 
Bravo Vicki, well said! You have a writing gift, you know. I am sorry to hear of your experience but you got yourself out of it. You are a powerful woman in many ways and I look up to you.

Wendy
 
I agree Vicki - not enough time in the day when things get popping! :D Creative endeavors can be so very healing on their own, I wouldn't worry about not focusing on the other sort of mind numbing, supplement tweaking style of healing if you don't have great need. Besides, with all the walks and fresh air you are now getting, its got to be doing wonders! :)

Live that life, every minute of it! :D Big hugs, Lisa
 

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