Wednesday, October 6, 2010

Putting It All on the Line

I decided to take a risk today and put myself and this disease out there for everybody to see. For someone who has always been self conscious, especially of how they look, this is a pretty big deal. I am learning a lot through this trial in my life. I want good things to come from this. I am very limited in what I can do right now but if I didn't do anything then I think I would give up the fight.
I have shared through out my blog some of the effects that Lyme can have on you and some of the symptoms I suffer from. I decided today to video one of my "twitching" episodes and post it so people could see first hand what this disease can do to you. A lot of the pain and discomfort of Lyme is not visible. This is one of the few things that would give someone an indication that something is wrong. The episode I posted was fairly mild compared to some of the other episodes I've had. When I say twitching, I know a lot of people think it is the same as muscle spasms. It's not, but I do have those too. As of right now, the twitching doesn't really hurt. It does take a lot out of me though. It can come on any time, any where and with little or no warning. I may go a week without any twitching and then I might have episodes a couple of days in a row. I think my longest episode has lasted close to an hour. It usually seems to come on when my muscles feel weak. I normally get the feeling in my calves or my forearms. It can be a weak feeling or a creepy crawly feeling (which is the worst). Soon after I begin to feel that way the twitching usually starts. Sometimes it is brought on when I get cold. It is a nerve related thing so I have had luck stopping it by taking a hot epsom salt bath or taking extra magnesium pills.
As I said, getting cold can sometimes start me twitching. Temperature control is something I sturggle with. For a long time I had cold hands and extremely cold feet. I get cold easily. It got to the point that the only way I could warm up was to take a hot bath and I mean super hot. Sometimes it feels like I can't make the shower or bath hot enough. I have found out recently that I have a low body temperature. Almost always when my temperautre is taken it is 97.6. I found out that I can be running a low grade fever at 98.6 or 99 then. Makes sense I guess. I haven't gotten into the habit of taking my temperature twice a day, although I should. The issue with getting cold has turned painful more recently. It can be hard to stay warm in colder weather. Things like holding something cold in my hand can become very painful. The freezer or dairy section of the grocery store can be torture. My finger tips can hurt really bad and become numb.
I know I have talked about the fatigue and being tired. Before I was diagnosed and took off from work there were days when it took everything I had to not fall asleep at work. It took all my strength to just walk. I knew that just wasn't right. Now at least when I am that tired I can sleep. Lymies are supposed to a minimum of a 1 hr. nap before they get tired in the afternoon. Most days I am sleeping 2 to 3 hours and some days I am sleeping 5 or 6. I think the fatigue gets aggravating. If you are having a good day otherwise it is hard to remember how sick you are and it can be easy to over do it.
It is hard to say what I think has been the most painful part of this disease. The joint and bone pain definitely has made me think about everyone who has arthritis. Some days it is really bad. It is usually in my wrists, fingers, and toes. The bone pain can be anywhere but is usually in my forearms. It feels like someone has placed my arms in a vice and just keeps tightening it. The nerve pain can be is different and something I have had much longer than the joint pain. A few years ago I started getting a burning sensation down my one shoulder blade. Then it went to the other. Then I started getting a deep stabbing chest pain on the left side of my chest. Sometmes the pain would pierce me all the way through to my shoulder blade. It always worried me because it was on the left side of my chest and I started having heart trouble. I'm glad now that I know what it is from. The nerve pain can be like pins and needles sometimes or just this wierd feeling like my skin is crawling. When that skin crawling thing happens you can't touch me. The slighest touch becomes the most horrible thing in the world.
The muscle aches can get bad too. When the muscles ache and feel weak, whick happens mostly in my arms, I just want to cut my arms off. I remember coming home from work a few times and just crying and asking my husband to just chop my arms off at the shoulders.
I know I have covered a lot before about how this disease makes me feel. So sorry if I have bored you by repeating myself. I am no where near being done with all of the other things this disease has done to me but I think I've said enough for tonight.
So look at my video if you want. You can also type in lyme or herxing on You Tube and see all sorts of similiar videos about this disease. That is where I got the idea from. It brings a new perspective to what people are really going through. can laugh. My kids do. I am not going to say it doesn't hurt my feelings some days when my kids laugh at me but I know it is their way of dealing. A lot of times my twitching ivolves me giving an involuntary thumbs up. One time it made me repeatedly put my fist in the air. My husband just stared at me and I just said Rock On. We laughed. My husband laughs too. He is always so laid back about eveything but he finally admitted the twitching freaks him out and he wants me to go take my pills or get in the bath to make it stop. So I know his laughing is because he is nervous about it. When it is really bad it can take my breath away and I can't really talk. I struggle to get words out so I don't usually talk. Well I guess I got side tracked as usual. So good night for now and thanks for checking in on me.


  1. I watched the video and did not laugh...I cannot imagine the pain that you are going through. While watching the video all I could think about is how much your body is being taxed..almost like you ran a marathon after it is over, I know it must take so much out of you and exhaust you. You are an extremely strong woman and thank goodness you have that strength to help you get through this. I really want to share just how devistating this disease is to people and what it does to people, if there is anything I can do to better spread the information please let me know. Please continue to share your story with me/us you are very important to me..

    Prayers, love and thoughts are with you always...and also a GREAT BIG hug!

    Dawn =)

  2. Hi Jess -- you are an angel, and so brave for posting all this... I know, it is scary what we go through... It makes me crazy when people say, "oh, but you don't LOOK sick!!!".... I don't wish others to experience what my body can feel like on most days!!! I had a really good day today, though, for which I thank God with a grateful heart... I wish you the same, dear Jess... we are going to get well again... I just know it!!!! Big hugs, Stephanie

  3. Its hard to have joint pain, it change your mode of the day because of the pain,that is so frustrating.