Those of You With CFS Wondering What You Are Able to Do?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jan 14, 2006.

  1. greatgran

    greatgran Member

    Sometimes I think I do to much and there are days I don't do anything..Never travel not sure if its cfs or agoraphobia..I haven't been more than 45 miles from home in over 2 years..I want to to on a vacation and so does my husband but I am afraid...Afraid I can't keep up with others, afraid I may spend my whole time in bed or lying down..

    There are places we would like to tour but it requires walking and I am so decontioned I couldn't keep up..I have tried to build myself up so that I could last for half a day then rest and go another half..I am not sure if its just being out of shape or the dd..

    I was just wondering how some of you are able to go and do..My grandson is in college about 3 hrs away and I see no reason I can't go but when the time comes I have all the "what if's" and haven't been yet..

    I went to out local rec. center and walked
    around the walking track only about 15 minutes and was in bed all week. I am not sure if its from the cfs or allergies..I feel so lazy and out of shape and if I don't start doing I am not going to be able to do but when I do I end up in bed...

    Are there any of you that can't travel or is it just me. I would just like to know about your average day and doings etc..

    Thanks.

    greatgran
  2. LdyM

    LdyM New Member

    Travel! Are you kidding? I could have written your post greatgran.

    Goin' nowhere, **LdyM
  3. pepper

    pepper New Member

    You can walk on the track for 15 minutes? I'm impressed! I couldn't do that if my life depended on it. So, greatgran, just know that you certainly are not alone.

    Pepper
  4. darude

    darude New Member

    Your not alone. Travel no way it's hard enough for me to travel to bathroom.
  5. victoria

    victoria New Member

    Except that I find that when I HAVE to go somewhere and/or do something that requires energy, whether it be a week or 2, I somehow pull thru it -- well, with the help of the extra adrenaline cuz of stress (good or bad,) caffeine & sugar, ie, coffee and cokes... otherwise couldn't at all.

    And then once I get home I collapse, sleep 12-15 hours/day and do absolutely nothing until I recover. This is the part that nobody but my close family sees.

    So mostly I dread going anywhere, haven't really been on a real vacation, it's mostly been 99% 'have-to-do' stuff or go to see one GF who understands and I can rest a lot. But even then I still crash when I get home.

    Victoria
  6. Beadlady

    Beadlady Member

    Try starting out with a walk outside for 5 minutes a day for a week. Then the next week increase that to 10 minutes. If you do that every day your body will thank you.

    I walk my dog everyday. We go even if it is raining or snowing--just don't go if there is ice though--which isn't very often. My dog has arthritis & some nights he doesn't want to go past the corner.

    He reminds me every night about 7pm that it is time. On the weekends we walk during the day & generally a mile or more. Since we are walking mostly at night, we just walk a few blocks up our street.

    Even if you walk around your yard--at least it is a start.
  7. sues1

    sues1 New Member

    Maybe you can get a loaner or rent a electric scooter that could go with you. Check with the hospital as they would know of any organizations that lends out wheel chairs/crutches and such....... Not walking too much would give you a little more energy. OR can he handle pushing you in a wheel chair? Hey, this is not a choice, but really do not waste your energy trying to walk around!

    Sit down and talk to your husband on this and tell him you need to discuss your fears, that has a understandable base to it. Explain how you want to enjoy his company and everyone else's and how you miss doing normal things. Ask how this could be accomplished. Ask if he would be upset if you only did a part of the day and he spent the rest of the time with whoever you are visiting.

    My DH and I go places the night before and stay in a motel. He lets me sleep in some in the morning so I have a little energy. If I need to go back to the motel to rest he takes me. He knows that even if I do not spend all my time visiting and such, that the part I can enjoy is so pleasant and such a thrill.

    If you stay at someone's home, ask them on phone...ahead of time.....if they would understand when you would have to go and lay down at times during the day AND if you do not go everywhere they might go. That in doing so would be a blessing as you want to do all, but can not. Just being able to visit a while is a treat.

    Does your car set go way back? OR can you line up a "zillion" pillows and a security blanket in the back seat and you lay down there while traveling? I have done that also.

    Also do not eat to heavy of foods while traveling, well at least for me....I get heavy eyes when I over eat. "me thinks" I have muscle or tendons that run from my eyes to my tummy, as the weight of food pulls my tummy down, & my eyes close. LOL.

    Talk to your DH with love and see what he says. Do not try and apologize to everyone overly so. Know that you are still special and that you are dealing with all the best you can. Get some joy and happiness where you can and how you can. You need it, you deserve it. I know it is extra work on hubby ..bless him also.....but he also gets to go and enjoy what he can.

    Try this for one of your shorter travel places you want to go to. Try it out. Sorry this is so long....Be an Elf to yourself! Many Blessings and lots of Luck.......Susan
  8. MsE

    MsE New Member

    Wednesday I took the local bus to visit my daughter. It's a two and one-half hour trip. Friday I came home. Today I've been in bed all day except for visiting the computer. Missed my grandkid's basketball game as a result. Exhausted, raging headache, the works.

    Tomorrow? Probably I'll still be in bed. Maybe I'll get to the grocery store. Whoopee!

    Let's put it this way: If someone should offer me a trip to a place I've always wanted to visit--New Zealand--all expenses paid, my reply would be, "Do I have to go?" I can manage very short trips if I don't do the driving, but that's it. It is just a fact of life for me these days.
  9. greatgran

    greatgran Member

    Thanks to all of you for your input it helps to know that it just isn't me..That this dd is real and does affect all of us in many different ways..Its so hard to deal with at times when you realize all the limitations...and depressing too..

    I know my anxiety, depression and agoraphobia plays a role in my homebound state but it all goes together and makes a miserable person..Most of the time I accept and deal with it then I get in the doubting mode and wonder if its all in my mind. Then I realize its both body and mind but they go together...

    Usually by the time I do what I have to do which are the simple everyday chores that
    takes all my physical and mental energy..So guess that only leaves my dreams of going and doing...

    Thanks so much,
    greatgran
  10. greatgran

    greatgran Member

    What and how did you treat your illness?
    Any advice for me since the doctors seem clueless..

    The anxiety, depression and the allergies
    along with the fatigue are my worst symptoms...I have found nothing that seems to help..

    Thanks,
    greatgran

  11. greatgran

    greatgran Member

    Thank you, I will be looking for them.

    This is what I am doing for now..

    centrum, 1 a day
    garlic, just started one daily 1200mg
    magnesium, 2 a day 250mg
    vit.C 1 daily, 500
    omega fish oil complex, only take 1 daily
    caltrate with vit. D, once a day
    xanax .25mg 1 to 4 a day as needed

    My abnormal labs are : High poitive ANA 1:640, c-reactive protein 22.5, slightly elevated liver enzymnes, Positive EBV..one of my many doctors I have seen thinks lupus but the others don't think so..I only see a PA or GP now just can't go out of town to see the specialist..

    Thanks for your help,
    greatgran
  12. caroleye

    caroleye New Member

    When I "first" became disabled 20+ years ago, I could do many little things. But each year, something would be taken away.

    Traveling stopped years ago except when we had to escape the San Diego fires a few years back. Then I just laid in a hotel bed with my dog.

    Still, if my husband suggests a dinner out (10-30 minutes) away, I say.......I just don't know if I can make it out.

    The "only" thing I can do is occasionally ride a horse!! But I have to have enough energy to drive 10 minutes to him.
    And have someone else groom/tack him.

    I totally understand the paranoia, and the feeling you just can't make it. Because the "truth" is for many of us, we can't. But sometimes when I take a risk (horseback riding), it's worth the pain & staying in bed for a few days just to feel somewhat "normal" if only for an hour.

    I'm fortunate to have a "helper" that watches every move I make when she's with me. And she understands my limitations. If you had someone like that with you, it could help your mindset.

    Never know!!

    LIGHT***********carole
  13. Jen102

    Jen102 New Member

    we have a grade school age child. wish our child could see more of the world. we very infrequently take day trips. a wheelchair is a must. i have both a manual one (for my husband to push--i can't operate it) and an electric one which i can operate if i'm not too fatigued. in both wheelchairs, i have a high back and neck brace so that i don't have to expend effort to hold my head up. this helps conserve my energy tremendously. yes, it is a drag being an invalid for everyone to see, but i so want to get out on occasion. blessings to you. you will find a way. jen102
  14. greatgran

    greatgran Member

    I truly think its more fear holding me back than the dd..I am so afraid to try, and start the "what if thinking"..thinking of all the things that could go wrong and for me its so much worse in a strange place..I know I sound like a fruitcake..

    So I have made up my mind to try to start with baby steps, maybe a 1 hr trip in the car with someone, then back home...I will never know until I try.

    My goal is to go see my grandson about three hrs away and see his school..He is my only grandson and is doing his education all my himself..His dad is deceased and his mom is not financially able to help nor am I but want to be there for support...His mom has never been to his school...just not able to go due financial and health reasons..

    Thanks to all of you for your support and understanding...
  15. MsE

    MsE New Member

    Taking "baby steps" in starting to get out a bit more is a good idea, Greatgran. If it doesn't work, it doesn't work--but you will have tried. I'm rooting for you!

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