It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cerebral Palsy Message Board

  • 25 and dealing with EXTREME FATIGUE

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 08-08-2006, 08:45 PM   #1
    Nat4HIM
    Newbie
    (female)
     
    Nat4HIM's Avatar
     
    Join Date: Jul 2006
    Location: Columbia, South Carolina
    Posts: 6
    Nat4HIM HB User
    Lightbulb 25 and dealing with EXTREME FATIGUE

    Hello,
    I am new here and just want to share with you all what I am experiencing and see if any of you are dealing with it to. I am 25, out of college and married and have had a very high level of funtioning until this last year. For a whole year I have had extreme fatique that hinders my life in a huge way. I have done a ton of rescearch and found that this secondard condition is related to CP. After reading a few post, I realize that all of us hate to think about changes as we age because all of have been told that "CP in non progressive" but I want to share what I am experiencing and what I have learned from hours of rescearch to allert people to this issue. I spent 4 to 5 months thinking that this was just depression or possiblily chronic fatigue, but I truely believe and so does my doctor that this is CP related. It is hard to go from having huge life plans to walking up in mornings and hardly able to move due to fatigue. I am just begining to learn how to cope with managing the fatigue, if any one is dealing with this please respond.
    Thanks

     
    Sponsors Lightbulb
       
    Old 08-08-2006, 09:41 PM   #2
    Malwm01
    Senior Member
    (female)
     
    Join Date: Oct 2004
    Posts: 238
    Malwm01 HB User
    Re: 25 and dealing with EXTREME FATIGUE

    Welcome to HealthBoards, Nat4HIM. I'm sorry, I don't really understand your post. (Maybe it's just too late at night for me.) but I gather that you're looking to read about our experiences with how our cerebral palsied bodies change as we age?

    I'm 23, and have spastic and ataxic CP. It took me a long time (I was probably 10) but I walk independently (on a flat even surface) and can use the stairs if there is a railing. I have a hard time maintaining my balance, so basically, I can trip over a speck of dust, or if you brush me when you're walking by or if I've got a backpack on my back that is even a little heavy.

    I've been battling depression since I was a pre-teen and since that time have also been dealing with constant insomnia. I also deal with horrible fatigue. During HS, I was pretty much addicted to caffeine, and I drank Mt. Dew like normal humans breathe air; just so I could get through my day. I always blamed my chronic fatigue on my disability. It never even occurred to me that I was tired and run down partly because of my emotional state.

    Now, as an adult, I can separate my fatigue that is caused by depression from my fatigue that comes from having cerebral palsy. When I'm depressed, I can make myself get out of bed and will myself to be happy, eventually. Yet, if it is my CP that is making me tired I can't get out of bed and walk to the bathroom without having spasms, or falling over completely.

    Growing up, I never really understood how CP affected me, or how it would affect me in the future. When it came to my future my parents were vague and used what I consider to be a very cliché thing for parent's of kids with cerebral palsy, "You'll never be a ballerina." I knew, that. And I knew that I had trouble walking, talking, riding a bike, and whatnot. But I had no idea that there wasn't a cure for what I had and that maybe I could have when I was older because maybe we were too poor to afford it right then. Likewise, however, I didn't know if what I had wasn't going to kill me one day.

    So, when I was about 11 or 12 I started searching through the reference books and later the internet and learned was CP was and wasn't. I also learned from some older guys' personal webpage that contrary to what I'd be reading. CP affects how you age and your body will feel older then your calendar age says you are. Since having CP puts such a great strain on our muscles, bones and joints to begin with.

    Now, that I'm experiencing this fatigue as I age, I'm trying to battle it buy taking care of my depression; but also by listening to my body and not pushing myself to great physical extremes. I've moved out of my previous home (which was multi-story) to an apartment that has laundry on the same floor as I am, and a minimal amount of stairs (I think there are only six or eight.)

    I also am considering getting a handicapped parking sticker (something I've not had since I was a child) to save myself the wear and tear on my body from long walks from parking to an entrance (as it stands I've already used a friends multiple times over the summer for events like outdoor concerts, festivals, carnivals and fairs.)

    If I had insurance and an accessible vehicle and home I might consider a wheelchair for long distances but I don't foresee that happening before I am 25. For now I'm just taking it easy and going with the flow.

    I hope I've helped. What kind of CP do you have? Do you walk with assistance, independently or not at all? How has your functioning changed over the last few years?

    Take care, and again, welcome to HealthBoards!

    ~michelle

    Last edited by Malwm01; 08-08-2006 at 09:45 PM.

     
    Old 08-09-2006, 12:21 PM   #3
    Nat4HIM
    Newbie
    (female)
     
    Nat4HIM's Avatar
     
    Join Date: Jul 2006
    Location: Columbia, South Carolina
    Posts: 6
    Nat4HIM HB User
    Re: 25 and dealing with EXTREME FATIGUE

    Hey Michelle,
    Thanks for replaying to me. I have mild spactic cp that effects my whole body and my speech. I also stuggle with depression since age 15 and have always had problems with sleep - since birth. Yes, I have majorly changed in my functioning this year. Like today - I woke up and bearly was able to get out of bed due to the fatigue and the tension in my muscles. My back was as hard as a rock due to my tight muscles. It is hard to know how to take care of my self because all what to do in lay on the couch. I am also thinking about getting a handicap parking sticker. What have your doctors said to you about your fatigue and change in funtioning?
    Thanks,
    Natalie

     
    Old 10-13-2006, 01:16 AM   #4
    nikelboi
    Member
    (female)
     
    nikelboi's Avatar
     
    Join Date: Oct 2006
    Posts: 59
    nikelboi HB User
    Re: 25 and dealing with EXTREME FATIGUE

    The same happened to me around 26. i had to change jobs and now i'm trying to go back to school for work that suits me better in my current state. i'm 28 and have learned a lot about conserving energy to get through my day, knowing my limitations but still keeping motivated to walk/exercise everyday, at whatever amount is comfortable without pain/fatigue. doing things slower helps, although it's an adjustment having people stare while getting used to a different way of doing things. well, now i don't give a **** as long as i won't be denied accomodations or the right to live, LOL. listening to my body is important, because before i had these problems i was a little 'out' of my body and more in my head, if that makes sense. i went through a crash/burn cycle for a while which made things worse. now i don't pretend everything will be the same as it was 10 years ago tomorrow, and i allowed myself some time to grieve whatever changes but not wallow (that got annoying for me and those around me). spirituality helps... not hoping for a cure, but for a life that is full and meaningful.

    pain and fatigue don't go away for me at least, but a sense of humor helps and getting depressed is a normal reaction. if you already have problems like i do with depression and/or anxiety, it helps to get an outside support like a therapist or friend or support groups like this one if you don't have insurance. also, for conserving energy, try an occupational therapist if insurance will allow or research online for energy saving tips that might help.

    yah, i went thru a phase where i thought it was something dreadful going on, but then with enough research and listening to others' stories I found out it's a common thing as we get older, but not necessarily easy to deal with.

    i also have chemical sensitivity which can be part of chronic fatigue syndrome because of the blood-brain barrier being affected from the brain damage of CP. aside from stating the obvious re dealing with insomnia and relaxation techniques to help fatigue, food can be an energy booster, cheaper than natural supplements and less harmful than pharmaceuticals long term. nutrition and vitamins are esp. important as our metabolism is different than most temproarily able bodied (TAB) people.

    there is no magic bullet but a willingness to share and learn is a great start to living and loving yourself and others, whether or not your changes come and go. i went thru a difficult time because i was getting all these societal messages that i should be beginning a career, starting a family, etc when i hit a brick wall and was trying to adjust, recover, and move on at the same time. just don't beat yourself up, find a language for how you are feeling and communicate with others instead of stuffing it in, give and get plenty of hugs (especially from yourself), and being goofy can be a godsend

    the 'good' to come from all of this is that i've learned to value things i used to take for granted, and i've matured a tiny bit faster than i would have otherwise. i realize that everyone's journey and experience with CP is different but the most important thing is not to give up and to ease up on yourself. as a former TAB i've realized that i've internalized some things about what it means to be disabled and projected these things onto myself, being harsh when there wasn't any real cause, making my own timeframe to adjust and then putting a good or bad value on what my body decided to do.

    well, hope this helps and thanks for sharing!

    ryotboi

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Mystery illness, extreme thirst, off and on for a year MongoosePie Open to All Other Health Topics 1 04-04-2010 10:03 AM
    flu->walking pneumonia/resp. infection -> weeks of fatigue(extreme) kselva General Health 3 12-31-2009 04:43 AM
    Hard time dealing with emotions dmarieok Lupus 18 06-04-2007 07:58 PM
    extreme fatigue aspen05 General Health 2 06-09-2006 05:30 AM
    Hi Everyone...Having A Very Hard Time Dealing GettingWellAgain Chronic Fatigue 7 11-26-2005 02:00 AM
    hello need help with extreme fatigue tankboy Open to All Other Health Topics 2 10-18-2005 05:10 AM
    What works for extreme fatigue? armadillo pie Menopause 5 08-06-2004 05:47 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 08:29 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!