to Wakemeup and all: share experiences of first weeks in illness

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Jun 1, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Wakemeup, I found your reply in an old thread while scanning the archives. It was good to hear from you. Thank you.

    What did you do before you turned 45 and got sick with the DD? I am envious of older people in a way, because they've had more time to work with. It continues to amaze me that we little humans can get anything done at all, in our short life spans.

    Was there a sense of stepping out of the normal world of things when you got sick? Did you feel pretty safe before? Were you surprised?

    (I like your shower chair idea, by the way. It's more the scrubbing and rinsing and the weight of holding the towel up and keeping in motion for so long... etc. that gets me.)

    When I first got really sick, when I became steadilly bedridden on the second Monday in June, 2002, I wasn't surprised at all. It was almost with a sense of relief that it finally came. I'd been struggling to keep up with life since elementary school. Now, I could finally lie down. I was so used up physically, and at last I didn't have anything to give anymore.

    The first two months I was cheerful despite being disabled. Then came the insomnia, pain, depression, and the sadness I always feel around October. I believed I was dying because the doctor couldn't give me an understandable answer to it all and a relative suggested a deadly diagnosis to me. I believed the worst for several months.

    How are you feeling these days? Do you feel boxed in every day, or are some days easier for you? What are your symptoms like?

    Sorry I asked a lot of questions. Just pick out the ones you like best. :)
    ((hugs)) Shannon
    [This Message was Edited on 06/02/2006]
  2. alaska3355

    alaska3355 New Member

    for our son. When you said you were sad in October, I remember Alaska was pretty dark by that time, pretty much winter. I am going to try to get a light box ordered for him....for resetting his circadian rhythms. It sounds like something you might be interested in...have you read any posts about light therapy? Jeanne-in-Canada is a big believer in them.

    Sorry, this was a little off of your topic, but I hope it helps. Terri
  3. bossco

    bossco New Member

    I was elated after diagnosis of cfs. It was a year and a half of getting it, with a steady decline in my health all the while. Then the crash, realizing with each passing day, and then year, I was getting no better, only sicker. Had to quit teaching after 15 years of service, am on disability for 10 years now, am housebound, with no life. I feel often like I am dying, feel boxed in, caged up. Friends and family are not all supportive, doubters are forever around. So many mental issues to contend with, besides those brought on by the illness. Its a constant battle. I do have a supportive husband, and great doctor,.those are the silver linings I hang on to.
  4. alaska3355

    alaska3355 New Member

    Wrigley's Extra gum had xylitol...you say it had aspartame???
  5. rachel432

    rachel432 New Member

    hi everybody!
    i always feel kind of guilty when i read posts like the ones from you all. i'm still able to work four days a week but after those days all i do is sleep. i feel pissed off and frustrated at the way my life has gone over the last few years with the constant headaches and then this dd. yet i'm not housbound, i am still able to get out when i need to. i feel like a wimp when i get whiney and start feeling sorry for myself. the fact the you all have such a great attitude and the strength to share that positve attitude really gives me hope for the future and helps to give me stength to try harder. i wish you all the best and i pray for recovery for you all!
    rachel
  6. kalina

    kalina New Member

    Up until the day I got sick, I had been dealing with a couple of health problems: endometriosis and chronic daily headache/migraine. But what hit me in January '98 came out of the blue for me. I was terrified, not relieved. I had just started 2 new meds my neurologist gave me to try for my headache when it began.

    It started feeling hot and cold at the same time. By the end of that day, it was much worse (intense sweating and shivering with chills), with a very hard-to-describe feeling of extreme discomfort and restlessness in my arms and legs (almost like waves of electricity). The severe insomnia, anxiety and pain all started that night.

    The next day I frantically called my doctor, thinking that this HAD to be some sort of bad drug reaction. This was much different than a case of the flu. Stopping the meds didn't help -- everything just kept getting worse, with new symptoms almost every day.

    I was completely unable to function during the first few weeks. I got through each day by watching the minute hand on the clock and trying to convince myself that if I can make it through the next hour, and then the next, I would eventually get through this. But I had no idea what "this" was! It was an absolute nightmare and the most miserable experience I have ever been through in my life.

    The doctors I saw over the next few years told me I was only depressed, which scared me even more because I knew I wasn't. I knew something was very wrong with me, but they had NO CLUE.

    Kalina
  7. Shannonsparkles

    Shannonsparkles New Member

    Alaska3355, I'm thinking about getting a light box too. I'm sad in October because that's the month my mother died, but I do think that more sunlight would help. I think I feel worse in the winter. I know I feel better in the summer. ;) I'm awake during the night these days, even though it's June now, and it's tough. Are light boxes expensive? Where can you buy them?

    Kalina, I can relate to your feelings about the doctors. I remember one time, early on, when the sleep problems started. I doc prescribed an antidepressant (actually, he just gave me a free sample box), and I had an off-the-map terrible experience with it after taking it only one day. I was so depressed, zombified and angry that I thought I should take the whole package at once just so I could go back to sleep. Luckilly, I was still rational enough to clue in that that might be dangerous, so I didn't do it. I spent the rest of that week in h*** just trying to get that small dose out of my system. And the kicker is, I didn't wasn't even depressed before I took it! It was just as a sleep aid.

    Anyway, the doc read what happened with the drug (I always typed out what I wanted to say to him, because I wasn't well enough to talk) and he said, with almost a chuckle, "Well, we won't be trying THAT again." (Never mind that I could have DIED if I had been a bit less lucid! I'm still bitter with him for that reaction.) Then he said, "Drugs won't work for you." It was like some hollow gong had been banged in my stomach. My thought was, 'But drugs are all you have!' So what do you do when the person who is supposed to be taking care of you doesn't know what to do?

    Even now I have the feeling like what you said. I KNOW something is wrong, but nobody will believe me. Or if they do believe me, there's nothing they can do about it.

    I can't let feelings of helplessness take over, weak and confined as I am. To do that, I don't look at doctors as having the answer, and me waiting for them to figure it out. It's more like dealing with children: They don't have much knowledge about this, they have to be told what to do, and even when you tell them what to do, sometimes they can't or won't do it. I am the adult, and I am the one who is in charge. And it's darned scary. I'm still trying to find a really good doc who will have more to offer.

    I remember in the early months I read The Mysterious Island, by Jules Vern. In the story, some very intelligent castaways build a smartly-working civalization on a deserted island. That idea helped me to get through. I thought, trapped in my room in bed all day, that my life is something like this book. I'm all alone, and all I've got is me and a few resources. But I can do something even with that.

    Hope more of us will come and share our feelings and experiences from our first weeks of being ill. :)
    (( )) Shannon
    P.S. I don't mean to offend anyone with my feeings about doctors. I've been to so many of them, and I've been treated badly or just not helped nearly every time. I still believe that there are a lot of competant ones out there. I just haven't found one yet. :(
    [This Message was Edited on 06/03/2006]
  8. alaska3355

    alaska3355 New Member

    either on this site or google for light boxes or light therapy..you'll find some options. I'm going to look at Costco- hopefully save some $$. Take care!