CFIDS is NOT the Captain of My Ship Anymore

For twenty five years I have dealt with Chronic Fatigue Immune Dsyfunction Syndrome, and for most of that time, it has tossed me this way and that, regardless of where I wanted to go. At least, that's what I thought...I thought I had no control over this disease that had taken control of my life.

However, a lot has changed since I first became ill. Good news is that I no longer deal with issues such as a fluttering heart beat, or my heart stopping for a beat; no longer have nights sweats. My blood pressure no longer drops all a sudden, sending me into a shivering mess.

My organs no longer get so cold I could tell you where each of them was, because they felt like blocks of ice inside my body. I no longer feel as if my head is going to drop off my neck. When I tell my eyes to open they do. When I tell myself to get out of bed, I can.

Two summers ago, I had managed to swim 100 laps in the pool a day. Did I do it all at once? No. I swam first 5 laps, then increased it till I could do 20 laps. Then I did 20 laps 5 time a day.

Last summer, I managed the 6000 mile trip from Fla to Alaska, then managed to get moved into a place here in Seward. I don't know anyone in Seward, and only one friend in Anchorage.

I planned this trip 8 years ago. Took me a while, but I got here.

I had to give up a lot of things to get to the place I am at now. First, my views on spirituality. I was raised a Mormon, and have 300 relatives who are Mormons. I had many blessings from Mormons for this illness. Didn't help. In fact, for me, I had to explore alternative spiritual practices in order to not succumb to the despair and depression caused by this illness. I explored a lot of things, including crystals and stones,
and Native American spiritual practices, (which I really like).

I gave up doctors also. Ten years ago a doctor told me I would be dead within the year. Last time I went to a doctor. Now I listen to my body; when it tells me to rest, I rest. If I don't want to do something, I don't. Unless it's really important to me to do, and then I accept the consequences of pushing past my limits. I know that I will be in bed until I replace the extra energy used. I've learned not to whine about my inability to do what other people can do. I do what I can do, and that's enough for me.

Crystals and stones really worked for me somehow. I was a real hard core case against these very objects when well, but one of my friends gave me one as I lay there in my bed.
I would stare at it, and it was like it gave me energy to focus my thoughts somehow. Crystals led me into a whole new area that I never would have explored had I been well. My mind was just too closed.

And this may sound strange, but somehow I am grateful for the path that CFIDS has led me to. I used to have no patience for sick people...I do now! I found that I could make some really beautiful things using crystals and stones, and it felt good while I was doing it. I could do it in bed if I needed too. I would never have found this talent for creating jewelry, had I not gotten sick. I am an Aries, we don't like to sit still...we like to be doing anything physical. I have found that I have other talents I never would have found otherwise.

And frankly, I've met some truly wonderful people on this part of my journey that I never would have met had I not had this illness. Call me a sucker, but I am grateful for that.

I like my life. No, I don't do everything the way that I did them before. But I still get whatever job I decide to tackle...I get it done. Maybe not as fast as other people. I do get it done my way tho.

It's A Brand New Year!!

Well, we have made it to another year! I remember, 10 years ago, a doctor telling me I wouldn't last out the year....I was a walking time bomb. And yet, here I am 10 years later. I believe that we get whatever it is we believe we are going to get, and since I never had a doctor I believed, their predictions for me never came true.
When Lisa and I tell people we came to Alaska to heal, they always ask us how we are going to do that. We're going to heal because we believe we are going to heal. Already Lisa is learning the lesson I have already learned, and that is how to slow down and listen to what her body is telling her. The fresh air, while cold, is extremely healing, as is staying away from toxic situations and people.
We're both using the crystals, and cleansing our indoor environment. We take our vitamins.
The new year is always good for setting those resolutions to change, and this year we are setting our course on keeping out of toxic situations, and away from toxic people. Letting go of expectations of the way others should or should not act is a goal we will be striving toward. We can only control what we can do , and stay away from those who would be harmful to our health. While it means letting go of some friends, and sometimes family, this new year is one in which we are going to concentrate on ourselves and our health.
We'll drink herbal tea, breathe in the fresh air and beautiful scenery, and speaking frankly, just love ourselves. Happy New to Year to you all

The New Year is Almost Here!!

I for one, am looking forward to the new year. This last year has been full of exciting changes, but people here in Alaska ask us the same things that people all across the country have asked us. Why did we move to Alaska? When we tell them that we moved here to Alaska to heal, every single person has looked at us like we are crazy. And maybe we are, but if we are, we fit right in with these people.
After our mad dash across the United States, which still took us 26 days, we spent a couple of weeks in Anchorage resting up from the trip. I had wanted to make it a leisurely trip across the US and Canada, getting to know people who lived in different places, and because we my CFIDS condition, it would have been easier to me to do. However, Lisa was hell-bent on getting here, no matter what the cost, so when we finally arrived, we were both exhausted. Most people don't realize that a for a person with my condition, sitting in the passenger seat is MORE exhausting than doing the actual driving, but Lisa, like most people, thought that if she did all the driving, it would be easier on me.
And because she did all the driving, she was as exhausted as I was when we arrived. Because she was so exhausted, and less than 24 hours after we arrived, she made a mistake that is still costing us to this day.
She is still learning that mistakes made here in Alaska will have long-reaching consequences here. She will never again make the mistake of wearing tennis shoes while walking on sheer ice, as that mistake cost her a broken leg. She now understands how very tired I get just doing ordinary things, as she gets that tired just going to the bathroom. While she never understood (as most people don't)not to push me to do more than I can, or to do it for me when I don't do something as fast as she would like, she now knows how it feels to be unable to move any quicker, or how guilty one feels when unable to do something on someone else's timetable.
Our landlord came over the other day, and when I explained the reason for taking so long to answer the door was because I was sleeping, she said to me "you're always sleeping".
Yes, I am. So is Lisa. We sleep when we're tired, and get up when we are not. Sometimes we sleep all day, and stay up all night. We eat the right foods, and since Lisa cannot go anywhere, we stay mostly to ourselves. I have taken a couple of trips to Anchorage to bring down some of our stuff in storage. I still have a couple of trips left before I have emptied out that storage unit. It's taking a while because I have limited energy, and cannot pull our scottie through the mountains in the snow, and the truck is not big enough to haul all of our stuff! (I don't know how we managed to get all that stuff here!!) Would Lisa do it alone if I was unable to get out of bed and help her? Yes she would, in a heartbeat. We make a good team, my cousin and I. What one can't do, the other can. So will we reach the goals we have set for ourselves? YES WE WILL. We plan on healing, and then finding that bed and breakfast where we can offer to others a place to heal. This is our goal. So while we will miss our friends and loved ones, we hope that you understand that we have a plan. We love you, we miss you.

Happy New Year to you all
You can comment on this post by clicking on the comment section at the bottom of the post.