Those of you with long-term/chronic illness

Discussion in 'The Watercooler' started by flutterbee, Feb 24, 2008.

  1. flutterbee

    flutterbee Guest

    I am curious as to your experiences with this particular topic:

    I am soooo tired all the time. From the second I get up, I am talking myself out of going back to bed or vegging on the couch. If I make myself do something, I can, albeit not at the pace I used to be able to, and start to feel a little more energized, but the second - and I do mean the second - I stop and sit down, I am instantly tired again. Then have to start all over forcing myself to do more when all I really want to do is go back to bed. I have this discussion with myself at least a dozen times a day.

    In the past, getting up and moving has always given me more energy that lasted all day. Now, it seems to only last while I'm actually moving.

    Just wondering if any of you experience fatigue in this way and if you've been able to find anything that can be done about it.

    I'm tired of being tired!
  2. TerryJ2

    TerryJ2 Well-Known Member

    Heather, I used to be like that.
    I am hypoglycemic, so eating every cpl hrs had made a huge difference. Exercise makes a difference too. Sometimes when I want to take a nap, I go for a walk instead. I have actually gotten tears in my eyes during my walks in the past, but now I have built up a bit of stamina, and it also helps level out the adrenaline and seratonin ups and downs. Also, I found that depression can be a part of it. It makes you feel like you cannot move.
    I can't recall your long-term chronic condition ... what is it? Do you have a diagnosis?
    Wish I could help more.
  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    I do have a chronic illness. Many who have Addison's suffer from extreme fatigue. I, fortunately, do not. I do get very tired very easily. I force myself to go to the health club which gives me a ton more energy. Still, I think I tire more easily than some. I also take lots of naps on the weekends or on days off which also help with the energy level. What does your doctor say? I know that fatigue has to be very frustrating to you. Hugs.
  4. Pam R

    Pam R New Member

    husband and I have chronic illness. He was diagnosis'd in 98, I was in 2000. He's is disabled, so we live on his single disability income.

    We more or less play tag team. I had to stop driving in 01 due to cognitive problems and exhaustion, which made them worse. So he's the chauffeur, though there's days I'm not sure I'd be better off being the one driving....

    Being chronically ill (husband was given 1 yr to live in 98) changes your perspective and priorities. Mostly we work together to try to get what needs done, done. For DS, to keep the house running, to maintain the farm, etc.

    Most days, it's all we can do to just get through the day: food, dishes, DS where he needs to go.

    So lots doesn't get done. On good days, we do what we can, but we never catch up.

    Cleaning up our food has made a huge difference. But the exhaustion still hits, the pain is still there for husband, but I live in hope that some day my body will heal enough from good care, that these things won't be so limiting.

    Mostly, I work real hard at stress reduction, as much exercise as I can do, eating as well as I can, strict sleep hygiene, and taking time to care for myself, doing something for me.

    That's how I keep on. :)

    Pam R.
  5. DammitJanet

    DammitJanet Well-Known Member

    Im constantly tired. I figure I can do one or two things a day...maybe go to the store or to the doctor and then I am done for. I have been sleeping way more than normal lately. I end up taking a nap most days.
  6. Hound dog

    Hound dog Nana's are Beautiful

    Gee, you sound like me. lol

    Mine turned out to be a folic acid and vit B 12 deficiency thanks to the kidney disease. Nephrologist gave me a script for foltex (sp) and within just days I was a new person. By a couple of weeks I was back to my old hyper self. He told me it would be like that, but still it shocked me.

    This is only one of the reasons I'm anxiously awaiting the tax return. My nephrologist retired, so I have to start with a new one. Deductables are a pain. And for some odd reason, this is one script my fam doctor won't prescribe.

    Have you had any blood work to rule out vit or mineral deficiencies?

  7. Josie

    Josie Active Member


    Doing the gluten free diet may help you with this, whether or not you actually test positive for celiac disease. I didn't have any other health issues but I was always tired and looking forward to my nap and early bed time until I started this diet. I'm not thinking celiac disease/gluten intolerance is the only thing going on with you but it could be part of it.
  8. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    I don't have any chronic illness but SO does and tires ever so easily.

    What helps - first and foremost his anti depressant - I went to Costco a few months ago and bought their dietary supplement vitamin pills, basically for me and easy child as neither one of us eat well - SO started taking them and says they absolutely give him a boost of energy - I don't know what pill is doing it, but it works well. And for times they don't work, a few cans of Ensure help tremendosly to give him a kick start.

    They had a article on MSN a little while back about how chronic illness can affect the brain - I mean to bookmark it and now can't find the darn article.

    So sorry, being ill constantly is the pits..

  9. flutterbee

    flutterbee Guest

    I'm hypoglycemic, too, and I try to keep on top of that. Some days are better than others. We are still in the process of nailing down a diagnosis. The only thing we know for sure is coronary artery disease, but since I've had angioplasty those symptoms (other than angina) have dissipated. Before the angioplasty, I was barely functional. A walk around the block would have me gasping for air and unable to move - literally - for hours. All of my current symptoms (that I had before the heart attack, too...the pain, fatigue, etc) went away for 3 months after the angioplasty so I initially attributed them all to the heart disease, but they came back - except for the gasping for air thing. I can definitely tell now what was related to the heart disease and what is something else. It is nice to get on the treadmill and be able to breathe. Yeah, it hurts to walk, but at least I can breathe. :tongue:

    I do notice more energy, but it's only when I'm doing what I'm doing. And to be honest I'm not sure if it's actually more physical energy or if it's just the momentum to keep going, Know what I mean?? As soon as I stop, the fatigue is back. I am very easily fatigued, too. A trip to the grocery store will have me physically and mentally fatigued for the rest of the day.

    I have been checked for a lot of vitamin deficiencies...folic acid at least several times over the last year. They have found a very severe vitamin D deficiency which is linked to muscolskeletal (can't spell that word) pain, but I haven't seen any reference to fatigue. Something to ask my doctor about. The traditional things they check for when looking for causes of fatigue such as folic acid and the B's have all checked out ok. I do take a multi vitamin as well.

    I think the fatigue is the hardest part. I can always take something for the pain and while it's limiting I can work around it. But, the fatigue is constant. Some days are worse than others, but it's always there.

    Then, too, I'm tired of living and breathing this. I'm ready to get on with my life and either have to find a way to lessen the fatigue or s-uck it up and deal with it. At this point I think chances are really good that it's just going to be a part of my life and I can either let it keep me down or I can fight it. The thing that concerns me is that some days it's so debilitating I don't know if I could hold a full time job. Or, rather, keep it.

    To that end, my daughter attends an online public school and her teacher is wanting to create a position for a Data Analyst and also a Parent Advisory Board and wants me to head it up. I could work from home and at my own pace. Sounds perfect, so keep your fingers crossed for me. If it happens, they want me to take the ball and roll with it, so I might be hitting you guys up for ideas on the Parent Advisory Board aspect.

    It's a process. I've been working through the emotions that come with being ill and have (finally) gotten to the point where I'm not going to let it win. Period.
  10. susiestar

    susiestar Roll With It

    Tired is a constant state for me. It accompanies pain, and both are my enemies. Some days even taking a walk is too much for me. The surgery has made the other issues flare up, so lately things have really stunk.

    You are not alone in the tiredness.

  11. Hound dog

    Hound dog Nana's are Beautiful


    The job offer sounds like a good fit. I hope it pans out for you.

    Having a long term / chronic illness gets to you. Even when you're determined not to let it. There are days when it does anyway. Just gets old when all you want to do is the *normal* stuff and it's an uphill battle all the time. It's even more frustrating when you don't have a definate diagnosis or treatment plan to follow.

    I can't recall, have they run the gambit on all of the varieties of metabolic diseases? (vit D thing has me thinking this direction)

  12. flutterbee

    flutterbee Guest


    I'm not very familiar with metabolic disorders. I know I have been checked for diabetes and that they've done bloodwork to check my thryoid and parathyroid. Other than that, I'm either not aware or it hasn't been done. They did check some protein levels, but I'm not sure what that's for. Maybe you could give me some info?

    I had a positive ANA which indicates autoimmune disease. According to my GP, anything over 1:40 is suspect and mine was 1:160. I also had an elevated sed rate which indicates inflammation. My rheumy looked at those along with my symptoms and decided the only thing wrong with me is the vitamin d deficiency. My GP said she's tempted to go ahead and treat me for lupus based on the bloodwork and my symptoms. I told her I wanted to wait and see how I respond with the vitamin D supplements as I want to do one thing at a time so I know how I'm responding to what. Just like we say about our kids and adding medications. I think it's autoimmune, too, and have suspected lupus in the past but also wonder about rheumatoid arthritis. Too many links between both the lupus and RA with my type of heart disease, you know? Too many overlapping symptoms. Sigh... I don't know. Sometimes I wonder if it's all in my head then remind myself I thought that before I had the heart attack and I was right then, too....something *was* really wrong with me.

    I did have the celiac panel which I just learned came back negative. And we're still doing the neuro testing.
  13. flutterbee

    flutterbee Guest

  14. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    Thanks Heather - thats the one - and I have bookmarked it for SO to read.

    I know you seem to have gone thru every test known to man but have you been checked for sleep apnea maybe - not for a major symptom but a contributory factor to being sapped of strength.

    SO has a problem with low oxygen levels and having the mask has really helped him with giving him a little more energy. I have one as well, but haven't been wearing it and have noticed over the past week or so I am having to take "catnaps" at work - like someone has sucked the energy right out of me. I don't know, just a grasp at straws on your behalf LOL

  15. ShakespeareMamaX

    ShakespeareMamaX New Member

    My goodness, I can't stress how much I feel your pain. I'm being checked out for a few neuro problems (not that that's what i think your problem is, neccessarily), but I have to deal with this awfulness, in the meantime. I don't have a solution for you. :( I can drink a million shots of espresso a day and nod off multiple times, still.

    Baths seem to work for very short periods of time, but once I come out, I'm worse than when I started. If you figure out a solution, please, pass it on.

    My best, best wishes to you. <3 <3 <3
  16. Marguerite

    Marguerite Active Member

    I've had decades of this and learned a few tricks over the years.

    You need to work a lot out for yourself, but here are some guidelines:

    1) If you find you get a little more energy as you start doing things, then try to measure how much you can do in one go, before you're too tired to continue. Then while you are physically resting, plan your next activity session.

    2) Avoid sitting down AT ALL during your activity session. Keep busy, even if it's only a series of very small tasks. For example, while the kettle is boiling, instead of sitting, you put the coffee in the cup, then take a cloth and wipe down the stove. Stop as soon as the kettle boils and make the coffee.

    3) Do not try to do too much. If you recognise the fatigue signs and know the consequences if you push yourself too hard, do make sure you take your next rest break when you know you need to.

    4) Ease back on your expectations for yourself.

    5) Give yourself more time to get to where you have to go, because getting anxious about running late or not getting all your tasks done, actually increases the fatigue.

    6) Plan more complex activities well ahead, with rest breaks planned in as well. For example, meal preparation - work ahead, as best as you can. Cook twice as much at a time, and freeze half, in small containers. Do not leave things until the last minute.

    7) VERY IMPORTANT - find other, more efficient ways of doing certain jobs. For example, I have changed how I do the washing. I get very tired from holding my arms up to the clothes line, so I do get help where I can. But I can ease the load by using coat-hangers for shirts, trousers (folded along the crease lines, waist button undone but zip d one up), dresses. I peg t-shirts at the armpit, folded over the line. All garments are smoothed carefully, spread out flat so there are no creases or wrinkles. They should dry with no need for ironing. BUT - you MUST put them away immediately, neatly folded.
    So when I get clothes off the line, I take them in carefully. As I need to pace myself to avoid my arms getting tired, I take off one person's clothes at a time, folding as I go. I then put that person's clothes either away, or in their room for them to put away. By the time I get back to the clothes line, I can raise my arms again, so I do the next person's. All clothes on hangers can go immediately into the wardrobe.
    People who grab clothes off the line and toss it all into the clothes basket - asking for trouble. It will ALL need ironing, assuming you can get to it before the cat uses it to sleep in, or the kids dump their dirty football clothes into it by mistake.

    8) Find ways to do tasks which do not require you to raise arms above shoulder height, or reach arms away from waist. To do so is VERY tiring, will exhaust you fast.

    9) Do try to go for a short walk each day, maybe at the end of the day, with a rest before and after.

    10) Manage your symptoms. Take what medications you need (and ones that work) and be kind to yourself.

    Do what you can with what you've got. You can't do any better than this. Do not feel guilty -just BE.

  17. flutterbee

    flutterbee Guest

    Marcie - my GP mentioned a sleep study, but said she doesn't want to send me to yet another specialist for yet another test only to find out I have Restless Leg. However, it's something she's keeping in the back of her mind.

    SMX - I hope you get answers soon. At least I don't just nod off. I may want to, but I don't. That would be very disconcerting. (((hugs)))

    Marguerite - Thanks for the tips. I do a lot of those things now. I try not to stop or sit once I've started something. I used to fold the clothes as I pulled them out of the dryer, but now I put them in the basket and have easy child take them to my room (carrying anything has me in agony over my hip before I get down the hall) and I fold them on my bed. My bed is tall and I don't have to keep bending over. I don't expect as much from myself. I used to clean the entire house and would have it worked out in my head how long each task would take. I no longer hold myself to the time standard and stop when my body needs to. Unfortunately, I don't have a self-cleaning house so the mess will still be there for me to tackle tomorrow. :tongue:

    I woke this morning and felt more rested than I had in a couple of weeks. It felt pretty good. Then, I had a 3 hour neuropsychologist appointment today and I was absolutely, wiped-out, exhausted after. I came home, made a sandwich and laid down for a nap. That was around 1pm. It felt like I had just closed my eyes and someone was ringing the doorbell and the dog was barking. I was so annoyed wondering who in the heck was disturbing my nap. It was my son home from school. It was 3:15. I felt like I had just closed my eyes. I let him in, laid back down and slept until 5:30. I'm ready to go back to bed now.
  18. timer lady

    timer lady Queen of Hearts


    I'm slowly learning to pace myself; to manage the pain & most of all to "forgive" myself my limitations. While my standards worked for me a couple of years ago - those same standards no longer do.

    Am I frustrated - darned right I am. However, I cannot change what is - I have to change my attitude & reaction to it. Many days I have a difficult time of it. My learning pace on this situation is a slow one.

    I try to remember that I'm no different than the tweedles in many ways. I have a challenge to overcome. Or rather learn new coping skills to function.

    I know the exhaustion - know it well. Marg has shared many of her "tricks of the trade" with me earlier. I'm now using my walker 100&#37; all of the time to maintain my strength - to build on that strength.

    Let yourself nap if you body is telling you to do so. Don't overdo the naps. It becomes addictive (at least for me, it does).

    When in the kitchen I do as Marg does - keep my hands busy. The PTs ordered & I should be receiving a rolling stool for use in the kitchen tomorrow. I'm so excited as I haven't had the energy to bake a batch of cookies in a while. This stool can be adjusted for my height & I can roll it with my feet. It almost looks like a bike with a bike type seat. I'll be able to move comfortably from my island to my stove & back with-o the drain on my body.

    The PTs are also going to begin installing various safety bars in my bedroom & in the bathroom (more permanent ones) to help with my strength. While the bars are there I can work on my PT exercises.

    Most of all, I'm asking for & demanding help. It's amazing how spoiled our families become; how much we truly believe we are the only ones who can bake that cake or clean the bathroom sink to a state of shininess. Now I just want the germs wiped out each day.

    I hope you find answers soon - I hope you can rebuild your strength.
  19. Nomad

    Nomad Guest

    I will re-read this later...I read it too fast. I know that I have really had to learn how to watch my body for signs of fatigue and to nurture myself. Getting enough rest, eating right, moderate exercise when I'm able, trying to stay positive, distraction, vitamin therapy...I use whatever I can to get some help. Each little thing makes some inroads and altogether it usually spells improvement for me. There are times though that excessive stress can spell big time trouble and little will truly repair that. However, all we can do is really step up the self care and ask for help when and where we need it. It also helps me to remember that the ultimate choice I have in these very difficult situations is how I am going to react to it. This is easier said than done, but it is empowering.