My Myalgic Encephalomyelitis (M.E.)Journey..A Blessing or a Curse?

I have been watching the CFIDS blog, and one thing I really notice is how many people are really upset about losing the life that they knew. I understand that feeling, as I have been dealing with M.E. ( which has been miss labeled by the CDC as CFS and CFIDS by the CFIDS ASSOCIATION of AMERICA) for twenty-seven years. But I for one, can't decide whether this challenge has been a blessing or a curse.

I started out getting married to a truck driver, and spending 10 years on the road as a bedbug hauler, driving an 18 wheeler. For the first year, my husband and I would change seats after he had gotten the truck up to the 13th gear, and then we would switch. Then he would climb back in the cab and go to sleep. For that first year, all I knew how to do was to stop the truck, so I always drove in 13th gear. It makes it kinda hairy going down mountains that way. I made him teach me the rest of the gears after that first year.

I managed to have 4 children, 2 of which died a few hours after birth, before I became ill. I became ill while on a run in Nevada, Lake Tahoo, in 1984, and that was the last trip I took in that 18 wheeler. But who's to say that's a curse...I never wanted to drive a truck for the rest of my life.

After I passed that first crisis with M.E., I went back to school and became a hypnotherapist, while studying hand-writing analysis, which took me 18 months to finish.
A year after that I had another big crash, where I then had to learn to walk and talk again. This is exactly where the crystals came in. And M.E. was a curse at this time, because I really liked what I was doing. But I did misuse it as I used self-hypnosis to get rid of pain (which really worked by the way) . It worked so well that I went into the beginning stages of renal failure. But did I stop then? NO, I pushed it until I couldn't walk or talk...and I was in my early thirties. So maybe, the M.E. was a blessing even then, as I had never learned limitations in anything. I managed to climb out of that one, and taught myself how to form sentences again by typing sentences from books, so that I would know how the words formed together to make a sentence. I did everything right, no smoking, no drinking, no sugar, no anything. Nothing was getting me out of that bed.
Then came my crystal, and I have already told that story.

My husband got the DUI that sent him to prison, and left me with 2 kids, 1 beat up old truck, and $25.00. I had to do something, so I became the only person in the United States to hold 5 packing contracts with different moving companies. It was unusual because major moving companies do not hand out packing contracts to you if you work for another agency. But thankfully, being an independent contractor meant that you had to show work from different companies, according to the IRS, and I pushed it with the companies. They each thought I would fail in the first part of the season and that would end the problem. And it could have failed, as I lied when I said I had the people to do the jobs. I remember sitting in the manager's offices, and shaking like a leaf, I was so scared. My face was twitching. But I pulled it off (its amazing what desperation will do for you) Once I got the contracts, I then had to train people to pack up the belongings in people's houses without breaking anything. I would answer the phone naked because i would drag myself out of bed to take the jobs for the following day. Its a good thing all I was doing was setting up the jobs, as I feel that people would frown on anyone coming out to the job site naked!
My son and his girlfriend were a great help in this area, even though they were only 16.
You do what you have to do when you have to have a place to eat and a place to live. The only problem with that attitude is that with M.E., sooner or later you are gonna crash.
I started having symptoms, and went to a doctor who put me on interfon treatments for 9 months. Now, having M.E. means you already have a cranked up immune system, and interfon cranks up the immune system even more. So guess what happen...well, you know what happened...But this time when I crashed I had enough money saved up until my husband came back home. Took me another 2 years to climb out of that one. Did I want to have a packing company for the rest of my life? No...I would have worked myself into the grave because I still hadn't learned my lesson. So, I guess we could say blessing again.

This is only the first part of the story, but I am tired now, and I have learned my lesson. I am going to stop writing, and finish another day. I posted some pics of the Seward waterfall on my facebook page.

Also, I am going to include a link to the store

Another Peak in the journey called Myalgic Encephalomyelitis (M.E.)

Ya-Who, my cousin Lisa is starting to walk several blocks a day with her cane, and she is getting stronger every day, which is a good thing for me, because my M.E. is starting to let me know that I need to slow down. We have a 4th of July event coming up, and we need to make some more jewelry and soaps for it. We have a new mold, which we are sure the people here will like, as it is a bunny waving around a hockey stick. We are going to hand-paint the Alaska team colors ....should be really cute, and is as big as our Florida gator soaps. We also have some moose and bear molds to make up, and some firemen molds (for my son, the volunteer fireman)

I will have to rest a bit as I have been doing all the housework and heavy work for months now. The M.E. has reared up, and I am only sleeping in 2 hr intervals. I have noticed that the muscle pain just will not let up, and the head-aches have come back. I do have the strangest symptoms, as the lower half of my body gets very cold while the top half gets hot. I take about 10 baths a day for the lower half, and it is just starting to warm up here so I haven't had much of a problem with the upper half of my body. I am so thankful that I moved to Alaska, as it will not get much hotter than it is now, which for me will be good. Lisa is a Florida gal, however, and she sometimes misses the heat.

The plus side is that now I don't have to explain anything to anybody. I don't have to justify staying in bed if I need to. I don't have to apologize if I have to cancel on something I had agreed to do. This has been a great help in reducing the stress of this illness. I am hoping to build up enough energy after the craft fair to go traveling, and you know I will post pics!

I have added a following button to the site, although I am sure I am just talking to myself. Lisa gets a kick out of listening to me talking and answering myself...she just laughs and laughs.

I will post a pic of our little bunny hockey player soaps when we get them made and painted on the blog, and list them in the store.