She is a junior in high school so I have some time yet. the issue for me, and it is completely MY issue, is that I have been essentially flat on my back since March 3. I have not been to any of her basketball or volleyball games since then and she sleeps at the house (I am about five miles away at an apartment). Given how busy she is and factoring in that she have a social life as well, there are weeks when I will see her for an hour or two. Sure, I speak to her everyday but it is not the same as hugging my 6'3" baby. I know she misses time with me as well, but just as I cannot do anything physically to see her, she is bound by school, activities, sports, volunteering, social life, homework, projects, etc., I get it but this year has been the worst in terms of time I get to spend with her.
I will tell you that two months ago, she said the words I've been longing to hear from her, "Daddy, will you please show me each episode of 'The Walking Dead' from the beginning?" You see, she likes zombie movies - I've watched them with her but for some reason, she had no interest in watching cable's most watched show of all-time even though it's littered with zombies. I am happy to say that in a matter of four weeks, we watched all 2.5 seasons that aired so far and she LOVES this show as much as I do. That's my girl!
Hi Pet - Laurie, again! I used to love taking a bath when I have had a stressful day, with lots of bubbles everywhere! Well, as of last week - it doesn't look like I will be taking anymore baths. I usually shower most of the time, but taking a bath was so relaxing for me. Well last week when I decided to bathe, both my hips were hurting. After taking the bath - guess what???? I couldn't get out of the bath tub! I was just mortified because I kept thinking what if someone finds me here and I don't have a towel near me?? LOL After about 20 minutes (I am freezing cold!) I told myself that I was just going to have to 'bear' the pain and use my legs and arms to get up and out of the bath tub. I made it, but not without clenching my teeth and being in tears. So this will be the end of my bathing! Darn!! Laurie
For me it started years ago when I started dropping things. Just thought I was clumsy, just didn't know why. My boyfriend of 7 years kept asking me what was wrong with me. I dunno I quipped. I also find I put something down on the kitchen cupboard and boom it is on the floor. I didn't center it right on the counter or just misjudged where I had set it down and it toppled over. Issues with imbalance a lot like tripping over my own feet, my feet getting caught up in something, just can't seem to set them down right. I could go on. But anyway wanted to say that years ago I just stopped buying glass drinking glasses and pretty much all my cups and glasses are plastic, but do still use ceramic mugs. They may be gone soon too.
Laurie, I have to say the same has happened to me a few times, just my footing got all screwed up and down I went. Thankfully, I have never gotten really hurt or damaged my head. LOL. It seems like when I do fall my arms will reach out and balance me or catch me.
I've been doing research about what I have that I believe caused my fibro and found that a common symptom of Ehlers Danlos Syndrome is poor prioception. That means that we have trouble judging the "space" around us. I've always had trouble with this but it's been a lot worse since the fibro symptoms started which was not long after I had surgery. I've had five surgeries so far. I know most here probably think they couldn't have a connective tissue disorder like Ehlers Danlos Syndrome but it wouldn't hurt to look at some info about it? http://www.nlm.nih.gov/medlineplus/ency/article/001468.htm The symptoms listed there are actually just a few of the many possible ones for EDS. I have HEDS which used to be called type 3. The EDNF and the Ehlers Danlos Network also have great sites with info. I'd be happy to answer any questions too as I've already talked to a couple people here who think they may have EDS. It's hard because doctors aren't taught much about EDS in medical school at the moment. It's considered to be rare but what if it's just very underdiagnosed? Especially if someone has a milder case and doctors arent trained to look for it. EDS causes the body to make bad collagen which is everywhere in our bodies. I'm the first case for my PT and for my PCP but they're bearing with me and trying to learn. I hope this helps someone. Clumsiness and dropping things can be a symptom of EDS. Im not a doctor but please anyone experiencing things like this, please give the EDS sites a lookover.
Laurie, I am so sorry you have to give up your bath. I try to take a bath 3-4 times a week and soak in the hot water and I do feel so much better. Just 10 or 15 minutes for me in the water, then want to get out because I have things I want to try and do. I do take showers the other days and make them as hot as I can and that helps my sore aching muscles. I have a little trouble getting up from the tub, but so far still able to maneuver up and out.
Yes, if for some reason I do find myself on the floor (now why would i even do that), I have to hoist myself up and have had to do that for a long time. I thought it was my weight, but then lost 80 pounds with surgery, and still had to do it so thought it was just because I had a bad back with a herniated disc. I never knew it was a fibro thing until just reading this here now. But then again I guess the disc problem is related to fibro and the fatigue problem related to sleep apnea? which is something I have too. I just found out I have fibro last June 2012 so everything about fibro is still quite new to me, but I do have so many of the symptoms.
Grammy, i have my 2 daughters who are experts with computer/technology stuff and I am always asking them to help me do something on the computer or remember something. Yes, I ask my oldest a lot ":what is my password" for this or that. I do share that information with her or who would be able to get into my computer if something were to happen to me. I have a hard time remember things that were told to me a while back and something that I don't often use, like my paypal password. I use paypal rarely. So the other day I just made up a new password, wrote it down and it is in my spiral; notebook, but heavens when I need it again will I remember what notebook and where in the notebook, probably not. LOL. I seem to remember parts of things, like the name of a movie, but not the time or channel it will be on, or the channel, but not the time or what it was about, but remember it was going to be good. But what's it about? How the heck do I know I respond.
Definitely! I know the pain is really bad when I start talking to my dog as though she is a person and not a dog; sometimes I go so far as to forget I'm talking to my doggie! Hey, whatever helps the pain right?!
Boy Karen does that ever sound like me. I had to laugh at the last part of your post about not remember what
the movie was about. I am always asking my husband who an actor is. We watch a lot of old movies and I know the actors but can't ever remember there names. I guess if you don't laugh you would cry. I have a page on my computer where I keep all my passwords. I pay bills on line so if I can remember my password to my computer I can get to the other ones I need. I just have to hide the password to my computer. We are really in trouble if I put something up for safe keeping. We may never see it again. Ha Ha. Or I find it when I am looking for something else I can't find. Not being able to remember things is very bothersome to me, and my kids. They will tell me "mom! you already told me that" and I say "well fine I just told you again" . They do know that I have fibro and they are helpful to me, I must say. We can all just go along and forget together I guess, Be blessed, Sue
I am glad to know that I am not the only one with that problem. I was going to take food out of the microwave today and instead of opening the door to the microwave, I openned the cabinet door, then I am wondering what was in there that I wanted. Figured out that there wasn't anything I needed in there and finally remembered the food in the microwave. I have put milk in the cabinet before. Or told the kids to get whatever out of the dishwasher when it was suppose to be the oven. Be blessed. Sue
Bathtubs are a no no for me to. Unless I just have to, then my husband has to help me out. I feel for those of you who don't have anyone to help you. I would like to get one of those walk in bathtubs but that is just a dream. Its hot showers for me. Sue.
HI Sue - I would LOVE one of those walk-in tubs!! I don't know if I will be able to get one - but I can dream - can't I?? I take hot showers too. I always feel better after I do,at least for a little while, then I am back to square one again! OUCH!! Love, Laurie
I have found myself doing this more frequently so when I go someplace on a regular basis, like the grocery store, I try to park in the same place, or close by, has worked wonders!
Hi Laurie, Oh yessssss, I try to have a sense of humor. If I didn't, they'd have to lock me up. When I feel I can't cope sometimes, I'll think, "What doesn't kill me makes me stronger.................boy am I getting strong!" I haven't told anyone here but actually my dream is to be a stand up comic. What a profession for a fibro-a-holic. I could even think up some jokes to use on stage if I decide to go for it. Let's see............ how's this:
THE OTHER DAY WHEN MY HUSBAND CAME HOME FROM WORK, HE FOUND ME CURLED UP ON THE FLOOR. HE ASKED, "WHAT'S THE MATTER WITH YOU?" I MUMBLED, "I'M HAVING A FLARE." HE GOT EXCITED, "DON'T MOVE, I'LL BE RIGHT BACK, I LOVE ROASTED MARSHMALLOWS." LOL. WHAT DO YOU THINK? GAIL
LOL!! Gail - that was great!! I love stand up comics and I really admire them, because I know it takes a lot of courage to get in front of a crowd and I know too, that sometimes they takes things from the own lives - maybe not so funny - and turn it into something that will get a smile or laugh out of someone! Keep it up!! Love, Laurie
LOl Laurie I have thought the same thing about myself , but in thinking that it has brought back fond memories of my grandma , she broke both of her hips and afterward she alked like a penguin as a matter fact thats what i called he " my lil penguin" . we have to have a sense of humor about all of this or we would have only grey days so laugh up i do
Yes, Pebbles, a sense of humor is really important. I have always said that during all that I go through, if I should lose my humor, then I am in trouble. I have the same thought about my home. I love to keep things neat and orderly but the day that stops - again, I am in trouble. So far, so good! LOL Laurie
Thanks, Laurie.... Yeah, it's not going to be easy! I haven't gone up on stage yet but I'm working on a routine right now that I've tried out on several people and they all say for me to go for it. They have mic nite where budding comedians can get up on stage for five minutes and try out their routine but just the thought of it scares me to death. I will have to convince myself that I'm funny and can really do it. I'm afraid my nervousness will show and that's bad, you have to convey complete confidence in yourself! But, I feel it's my destiny so in a few weeks when I really have it down, I'm going to go for it. Wish me luck! : ) In the mean time, I'll try and make up another fibro joke to post here!