Ever Tempted to Just Stay Home? Forever?

Discussion in 'Fibromyalgia Main Forum' started by MsE, Aug 11, 2008.

  1. MsE

    MsE New Member

    So here's the scenario, and I'll end with my question: Last Friday I felt fairly well. Not great, but as okay as I ever feel. Saturday I went to my granddaughter's baby shower in a town three hours from my home. I didn't have to drive. My daughter-in-law did the driving.

    It was a lovely party, and I enjoyed it tremendously. Yesterday, Sunday, I felt as though someone had been beating me. Achy, sore, exhausted, depressed--the whole deal. Didn't even go to church. I did nothing but lie on the sofa and watch old Doris Day movies, and periodically cry. Yesterday I hated my life. I was extremely sad.

    Today I feel better, but not good, and I'm wondering if it was worth it. It seems every time I leave town, this happens. If I stay in my own community, I manage fairly well, but on those days I travel even a little way, I have to pay for it. This has happened so often that I am wondering if I shouldn't just quit leaving town for any reason. The problem is most of my family live elsewhere.

    Now I can understand why long trips would cause problems, but a three hour car trip to a nearby town? A gathering of family and friends? It seems as though with this disease I can choose between staying here and satisfying my need to socialize by having lunch with a friend now and then or join my family occasionally for fun stuff and pay a price that is getting bigger each year.

    So the question is: Have any of you made the choice to stay put? To cancel all travel, even nearby places? And if so, has it been worth it?
  2. Malcolm82

    Malcolm82 New Member

    I know what you mean.

    I haven't been able to drive in almost a year.

    My wife is recovering from back surgery and just started to drive a little last week.

    I don't dare ride very far with anybody because it seems if I can even manage to get ready and get myself in a car, my CFIDS symptoms get so bad before I even get to the destination that I'm worth nothing when I get there and even worse for the next day or so, even if it is only 30 minutes away. I also feel bad about being an extra pain to the people I'm with.

    I'm hoping my symptoms will improve, but it seems like they have been getting steadily worse for over two years. My doctor says that one day I could wake up one morning and feel almost normal. I'm still hoping it will happen.

    The only place I go nowadays is to my doctor's appointment every month.

    I sure can identify with what you're going through. It doesn't seem like it is worth the price you pay to do what people without these DDs don't give a second thought to.

    Maybe I shouldn't have answered your post right now. I'm kind of in a low mood just now. Maybe tomorrow will be different.

    I think we both could use some cheering up. HELP!!!!![This Message was Edited on 08/11/2008]
  3. Malcolm82

    Malcolm82 New Member

    What do you do to be able to write?

    I used to write articles for a magazine, but I can't seem to be able to remember enough of my subject matter or get it organized enough to write anything coherent anymore. I've been working on the same article for a year and a half now and I'm only about halfway through it.

    I used to knock one out in a weekend, usually 1500-3000 words.
    I wish I could still do it because I really enjoyed it and I sure could use the extra money now.

    Any tips for a has-been writer?
  4. MsE

    MsE New Member

    I'm too pooped to try to go to all the work of getting something published. I settle for writing something once a week for a local writing group. We've been meeting for many years, and I enjoy it and it keeps me involved.

    I've given up the idea of publishing. Well, not completely given up the idea, but the last few months this dd has been so much worse that I don't always complete my once-a-week effort. However, I figure something is better than nothing, so I try. Writing, even half-hearted writing, helps keep me sane when life seems worthless.

  5. kitteejo

    kitteejo Member

    I have the same problem only recently discovered it though. Went to lunch with my sister yesterday, 5 minutes from my house. When I left the restaurant I decided not to stop at the drug store because I just had to get home. My heart was racing all the way until I was safe in the house.

    If I'm with family or friends away from home I get an anxiety attack and just want to get home. I take a half a Xanax and I'll calm down for awhile. Once I'm home I don't ever want to leave again.

    I think this is another sad symptom for us but we have to live so to answer your question yes it is worth it. How would we see our children, grandchildren, friends?

    Having them to my place is just as stressful for me, cleaning, cooking(or more likely carryout), all the confusion in the house. Same results, at least for me.

    Best to you,

  6. I hate staying home all the time, BUT I DO, not much choice. I have to sycke (sp?) myself up just to go to the grocery store. It hurts to walk. I try to act normal but it kills me to do anything. If I do, I pay big time. I HATE THIS DD!
  7. Janalynn

    Janalynn New Member

    I'm definitely a homebody. I love being home.

    On my first and only visit to the pain mgmt dr. (who has fibro) one of her first statements to me was "I bet you stick close to home"

    A three hour car ride isn't really a little thing - that's 3 hrs of sitting in the same position.

    I must admit when I do go out and have fun, I say I should do this more often. It feels good to be around other people and feel normal. BUT I've learned what I can and cannot do.
    I do not ever stay out late - ever.
    I always have an exit plan. I never let anyone else pick me up.
    If I don't feel well that day already - I don't go.
    If I have anything I have to do the next day besides be able to relax, I don't go.

    I work - when I do (flex schedule) I actually really enjoy being there. It feels great to get my mind of things, to feel useful etc.

    If where I'm traveling to is going to be fun and worth it to me - yes I'll go. I've had friends (not particularly close) who have said to come for a visit - just over night. I tell them "it's not going to happen". Certain things just aren't worth it to me.

    Some are.
  8. MsE

    MsE New Member

    My thanks to all of you for answering my post. I knew that traveling was difficult for most of us, but what I didn't know was if any of us had just given up and decided to stay put in our own home towns.

    It sounds as though the answer is yes for some and no for others, that some of you guys are still going places and doing things out of town even though you have to pay the price later.

    It seems like a real issue to me because I'm 73, feel like hell, and don't think I have too many "later's" left for paying the price. (That was a convoluted sentence; hope it was understandable.) I hate to give up, but I'm tempted.

    It is an especially difficult question now because my oldest daughter and her husband have moved to Croatia and my daughter wants me to visit her after Christmas. If a road trip of three hours wipes me out, how on earth am I going to fly to Croatia?

    Why can't this dd just go away? This is not how I planned to spend my retirement. :)
    [This Message was Edited on 08/12/2008]
  9. landra

    landra New Member

    Yes, I know that. I planned to drive my camper around the country - going places I have not been or seeing people I have not seen in years. [I am 61, 62 in Sept. and have had to sign up for early retirement through SocSec. since my disability was denied.)

    I have a camper in my driveway that i cannot use. Just crashed in Sept 2007 and keep hoping I will get better enough to use it. Probably unrealistic but I loved to do "car camping."

    Re: going out of town - I don't think I could. I pay for it when I am outside under a tree for a family birthday or for a meeting! 3 hours in a car would do me in I am afraid. Since my family is in town - it is moot. Sorry yours live so far.
  10. MsE

    MsE New Member

    I wonder if "they" will ever find out what the heck is the matter with us? What causes CFIDS and FM?

    One time I asked my doctor what his theory was, and he said he didn't know, but whatever it was, it messed up neurotransmitters. He won't try a bunch of different things because he doesn't feel he can justify them. Says that when someone does figure it out, I'll probably know before he does 'cause it will make the news.

    I'm not so sure. If something environmental or additives is behind some of this, the Feds will keep it quiet. Heck. Now I sound like a conspiracy theorist.
    So many people have so many theories, that I wouldn't know where to start with the exception of some supplements which I'm using. They aren't doing any good, but I'm using them. I wonder why? :) Makes no sense, does it?
  11. Missizzy

    Missizzy New Member

    Hi All--Boy, do I know what you mean by traveling wiping us out. I'm not sure if anyone remembers but I traveled by motor home to Texas (from Oregon) in June to see my Dad. It was the heat intolerance that got me that time. Would I do that trip again? Yes, as I needed to say good-bye to a very ill Dad. But I've paid a high price. I do have a couple of suggestion and an observation, though.

    I went through several years of disappointment and dismay at the sheer impossibility of going out at all. I've been to a department store or grocery store only a handful of times each year, in my wheelchair. A book store is a bit easier as it is quiet and peaceful. When I was in Texas, I managed an entire church service, in my wheelchair, using earplugs, and on Klonopin. The current picture of me on my profile was taken at that service. So, at least we know a smile was possible. It was Father's Day after all.

    My husband and I have been married almost 36 years and we planned to travel extensively when we got our 13 children raised. Then, this blasted DD hit. I've been pretty much confined to bed for the past four years. I had to work so hard to get my husband to go out to dinner and on short trips without me. Yes, I always had a few tears after he left but it was worth it. He needs a life and what is the alternative? It would be neither of us having a good time. I depend on him to experience the world for me, take pictures and tell me stories.

    Right now, he's in the South of France visiting one of our sons. It was like pulling teeth to get him to go but I did it!! He's there for 2 weeks and already spent a delightful week in Toulouse. He and our son are now driving through the small villages around Auvignon on their way to Provence. He calls me at least three times every day to give me juicy updates. Is it killing me? Of course. But it's also making me so happy that my sweetie is living a dream we've had for decades. I know that I could never do this. I would be flattened just riding in my wheelchair through the airport. I've learned to be practical and gauge just what I can and cannot do and accept it. Has it been hard. Yes!! Does it suck? Yes!! Is there a darn thing I can do about it? Of course not.

    I've learned that if I stay in my "box", I can feel reasonably comfortable. I lay in bed, cuddle my dogs, parent my children with my brain and my mouth (instead of my driving skills!!), knit, email friends and family, and occasionally read. I've developed a close friendship with someone I met on the Board and we buoy each other up through the hard days. Cindy's been a real blessing in my life. We don't have to explain misery to each other. It's understood. But we also have a lot of fun just sharing.

    I've also learned that the motor home is a good option for me. We originally bought it for our trip to the Mayo Clinic. We thought that we'd use it just for that one trip and then sell it but we love it.It's great because my husband can stock it with all sorts of food goodies and he's furnished it with lots of pretty pillows and linens. I can just lay on the large bed in the back propped up with pillows, dogs by my side, and see the world go by. We stop and have picnics and if something really fabulous comes our way, I'll use my wheelchair to explore. I actually feel as if I have more freedom in it as it is relatively compact (28 feet) and I can hold onto the walls easily to walk. It makes me feel very proud to be able to stand in one spot in the kitchen and reach the sink, microwave, and fridge all at one time as I can make sandwiches or prepare a simple plate of food. The only problem with the Texas trip was the incredible heat. We won't do that again. But I look forward to our next little trip.

    My suggestions are to be practical, humble, and willing to accept what life has dished out while never giving up the hope and dream that things can change. Each individual must determine on their own, just what is worth the energy expended. We learn day by day what works for us and we need to be clear with our loved ones what we are capable of. There is no glory in pushing if you will be in bed for three months afterwards. I also feel that we have to move beyond self-pity and other's pity of us to live in a state of gracious acceptance of what we still have. One never knows what tomorrow will bring.

    Hugs to all of you,

  12. MsE

    MsE New Member

    I know you are right, and on some days I can manage "gracious acceptance" but other days it eludes me. This is one of those other days. This too shall pass.
  13. Missizzy

    Missizzy New Member

    Whining is allowed!! Ranting, pouting, and wailing too. Believe me, MsE, I'm with you 100%. Tomorrow will be better.

    My daughter just visited (playing mother hen) and I shared what I had just written. She's a very wise 25 year old who brings pleasure to me every day. She had a great example.

    Tess is extremely allergic to pollen and to some fruits--especially cantaloupe. However, she loves those melons. For some reason, she was able to eat melon when she was pregnant but that was the only time. Any other time, and she will get asthmatic, her lips will swell up, and she'll develop hives.

    Her point was that our isolation due to illness is similar to an allergy like hers. You can want to do it, you can imagine doing it, it will taste sooooo good, maybe just maybe this once won't hurt. Then you do it (go out for dinner, go for a walk, get on an airplane, go downstairs.....or.....eat a slice of melon) and boy are you ever sorry. You should have known better. What were you thinking? Never again (until next season lol).

    Out of the mouths of babes.

  14. padavis48

    padavis48 New Member

    I recently traveled to Lake Erie, about 4 hrs each way, for my nephew's wedding. My husband did all the driving, we left early enough to stop often for breaks, so going up wasn't too terrible.

    It was very hot and humid that day and the entire wedding and reception was outside (the idea of a 21 yr old) and the only shade was a beautiful tent set up for the dinner.
    Inside the tent there was no air moving, with the exception of the sun not directly hitting me, just as hot.

    We left as soon as the first group of the "mature people" started to leave, but were there about 4 1/2 hrs. The ride home was miserable! I was exhausted from the heat even though I drank a lot of water and little else. Was in terrible pain the whole long ride back and just wanted to get home, take a shower and to bed. I barely got out of bed for the next 2 days.

    Was it worth it, yes and no! I would have hated to miss my nephew's wedding as I am very close to him, but I sure did pay for it. It was unfortunate that his bride did not think the arrangements through more maturely. She had grand parents and great-grand parents there as well and they all looked pretty miserable in that heat too. But live and learn!

    Just wanted to add my 2 cents!
  15. MsE

    MsE New Member

    Here is something I've noticed: If I've left my own home town, I am very sick for several days. However, if I stay home and get on a regular schedule, a very slow and quiet schedule, I begin to improve. As long as I stay on that schedule, I manage fairly well. But, if I change my routine, all the CFIDS nastiness comes back full force. A quiet routine eases exacerbations; a change in routine aggravates CFIDS.

    I have been so miserable over the last few months that I'm about to give up on going to events--even family events. This thought makes me sad, but I am longing to feel halfway well again.

    And finally, is there a moral issue involved? Do we have an obligation to keep ours bodies in reasonably good health? If so, and if we know that even short trips cause trouble, well....??????? I'll stop writing. I don't think I like where my mind is going. :)
  16. ShawandaR

    ShawandaR New Member

    I can relate to what your saying, however, think about all the good times you'll be missing out with your family. I have suffered for many years and was finally diagnosed with fibro last month. There have been times when I have done things knowing I shouldnt because I would suffer for it later. But to think back on the smiles and laughter my family and I had I say it was worth it all, for there are alot of days when I dont have to do anything to endure that much pain. When its all said and done atleast I can say I didnt let this ailment control my life. And nothing can compare to the joy than being around your love ones. Hopefully you can find your median. have you tried taking ur medicine as ur trip start? Best of luck to you.
  17. MsE

    MsE New Member

    You're right. Giving up family events isn't worth it. I need my family. Need them. I can let go of a lot of stuff, but not them. The way you worded your post helped. Thank you.
  18. jewels920

    jewels920 New Member

    My ass doesn't leave Kansas City except in rare circumstances.

    Unfortunately, my ass doesn't leave my house too much anymore, either. Kinda sucks because I'd love to have friends. Most of the people I meet want to meet at a bar or nightclub--and I can't sit on a bar stool or hard chair for more than a few minutes. That's if I can make it out of the house that day--my job really taxes my DD.

    I try not to worry too much about all of it. I wake up, sit up, get up, suit up, and show up for what I can every day. I do my best. And I guess that will just have to be good enough. :)

    Love and hugs.


  19. MsE

    MsE New Member

    So I guess the temptation to just quit and live my life in my own town isn't that unusual, huh? The trouble is the point Shawandar made about the need to see family members. I need to do that.

    You know, I've been thinking a lot since starting this post. Perhaps one of the problems I'm having is that I just haven't allowed enough time between jaunts. These last few months there seems to have been one thing right after another with only a month, at the most, in between. That just isn't enough time to work my way out of an exacerbation even when it is a minor one.

    This past year I've had to deal with the death of my daughter, the death of my beloved ex-husband, the deaths of dear friends, eye surgery, and out-of-town company of two sick relatives and their dog for half a month.

    Now that I've ranted a bit, I've come to realize I've been expecting too much of myself.It wasn't just this last little jaunt to my granddaughter's shower that did me in--it was the culmination of months and months of waaaaaaay too much.

    This Board really does keep me sane! Thank you, all of you. MsE
  20. jewels920

    jewels920 New Member

    And I think many of us expect too much of ourselves. The rest of the world does the best they can, or less than their best, and often call that good enough?

    Why do we have to "do" so much more to feel only half as "good"?

    I'm in the same boat. I certainly have days when I feel like a big blob because I have these DDs. But most of the time, I remind myself that all I can do is my best.

    Love and hugs.