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Do You feel better?

Discussion in 'General Symptoms' started by roxie60, Aug 27, 2012.

  1. roxie60

    roxie60 Senior Member

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    I am trying to have realistic expectations and I dont think I do so I have some questions for those who are trying methods to improve you health/quality of life. Please answer if you feel comfortable. My answers in blue.

    1. How did you feel when you started trying to address your CFS/ME or other health issues?
    a. 0-10% bedridden most of the time
    b. 10-30% function at low level 3-4 hrs a day, showering is major accomplishment
    c. 40-50% function 6-8 hrs a day, a few tasks around home, maybe grocery trip
    d. 60-80% function 10-15 hrs, work part or full time, able to drive short distances
    e. 90-100% function almost at normal level of energy, able to sleep

    This last 'episode' that lasted 5-6 months, first month a.

    2. Using same letters above how do you feel after being on your plan/protocol?

    The last month somedays c., somedays d.

    3. How long have you been on the protocol and do you attribute your improvement to your protocol?

    3 months, not sure if just normal non-flareup time. I do believe eliminating the foods identified as allergic/sensitive to took away 80% of my joint/muscle pain.

    4. Are you fighting this battle alone or do you have support from others in your life?

    alone (so I am grateful for members here at PR)

    5. Do you feel continuous improvement or do you have some good days and bad days?

    good and bad days, but seem to feel more defeated this time, more depressed, not hopeful

    6. Did / are you symptom free? Is that a realistic expectation for me to expect to be as well as I once was (much older now, probably chronic illness for 15-20 yrs just did not acknowledge nor did I have tests to show anything other than mono)?

    I am not symptom free after 3 months or more (on Metanx and MB12 since April) but have some improvement
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Roxie,

    This will be a tough one to answer because many of us have been sick for decades and tried many, many protocols, with ups and downs that we can't always tie to treatment.

    But for me, yes, I'm feeling and doing much better.

    Best wishes,
    Sushi
  3. SOC

    SOC Moderator and Senior Member

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    It's not that simple for me. I've had a number of treatments and been at a variety of levels in the 8 years I've been ill. It has taken multiple treatments, each of which gave me some improvement, to get me to the point where I feel pretty good. I still can't do a lot physically, but I can do significantly more than I could when I was at my worst. I've gone from having no life to feeling good and contributing something to society. I anticipate that further treatments will continue to improve my functionality.
    taniaaust1 and Sushi like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    1. How did you feel when you started trying to address your CFS/ME or other health issues?
    a. 0-10% bedridden most of the time
    b. 10-30% function at low level 3-4 hrs a day, showering is major accomplishment
    c. 40-50% function 6-8 hrs a day, a few tasks around home, maybe grocery trip
    d. 60-80% function 10-15 hrs, work part or full time, able to drive short distances
    e. 90-100% function almost at normal level of energy, able to sleep

    I was both a and e at first.

    As I was studying to become an accrediated Naturopath when I got this illness, during my time at the college, I started trying to address the illness right from the VERY START (from the very first day I was sick.. I would of been dosing up on vit C and herbal meds to try to boost my immune system), even before I had enough symptoms or the required time period for diagnosable ME/CFS.

    (back then thou what I was addressing was just "bad viral symptoms" for. what doctors kept on diagnosing as "a virus", thing is this "virus" kept coming back.. bedridden for a week and then completely functional again again for a time.. this pattern repeated over and over . Doctors= "oh you must of caught another virus" (major stress at first eg college assignment or exams was the trigger for the viral symptoms.. my body was okay at first with exercise.. my post exertional symptoms to physical activity came in much much later.

    IF I had known how to address this illness properly back then eg if I knew what I know today.. I then would choosen to give up college rather then keep getting more and more bouts of being quite sick. I wish I'd realised there was triggers and known to avoid them. If I had.. I dont think I would of ended up so sick with this illness and may well of recovered. (I did recover 5-6 years later thou.. full remission for a few years...after I'd learnt to avoid my triggers etc... I went to hell and back thou before I got to that point.. eg bedridden slmost completely for 9mths straight.. couldnt even walk to the loo).


    2. Using same letters above how do you feel after being on your plan/protocol?

    b.. sometimes a (I have a gov. paid carer help me 5 hrs per week as I cant fully take care of myself without help)

    3. How long have you been on the protocol and do you attribute your improvement to your protocol?

    Yes.. I'd be stil completely bedbound all the time and needing another to care for me all the time if I hadnt learnt to listen to my body. Im currently further improving in some symptoms due to finding symptom tretatment or rather treatment for the coexisting things ME causes.

    4. Are you fighting this battle alone or do you have support from others in your life?

    I live alone.. I do have a boyfriend who comes and helps me for a few hours or so twice a week. I also have a carer/home support worker come in on another two days per week.

    5. Do you feel continuous improvement or do you have some good days and bad days?

    I dont compare things day by day as it all can very vary with what one was doing in the previous days before and as this is such a up and down illness, its not a good way to compare. I rather compare periods of the length of about 3-6 mths ...as its only by looking at things by months that one can get some good idea of comparison on how one is doing.

    6. Did / are you symptom free? Is that a realistic expectation for me to expect to be as well as I once was (much older now, probably chronic illness for 15-20 yrs just did not acknowledge nor did I have tests to show anything other than mono)?

    I do have days where I certainly feel symptom free and say Im symptom free that day.. that all depends on if I do nothing to trigger off the ME eg if Im not doing physical activity at all or doing things like standing.. I can have a completely symptom free day or week with my meds for sleep, med for POTS, drugs for the IBS-C, avoiding food which cause me symptoms etc. If everything is being managed well.. I can be symptom free. Oe a symptom free day.. I arent having any post exertional symptoms.. (due to not doing anything or enough to cause them!!) .

    It isnt unrealistic to hopefully find enough symptom management to have symptom free days or to find something which will help you.. (Unfortunately many people due to their lives are just forced into having to do too much which just then keeps them sicker) and doctors to treat symptoms well are hard to find.

    Keep your hope up.. its just a matter of finding whatever those things are which help you!! Its like finding a needle in the haystack but there does often seem to be answers which help for each of us out there. If something dont help.. try something else.. and even something helping a bit.. is still an improvement and a step into the right direction.

    I first got sick 15? years ago.. and are STILL coming across things which help some or a bit. (In this time Ive gone throu 5 or 6 different CFS specialists and taken up any ideas of theirs I could.... thou they didnt have a lot of ideas but some things along the line certaintly have been helpful.

    my latest in past few years have been discovering I had insulin resistance so on special diet for that which helped a lot.. cured some of my symptoms and improved others, , having my POTS being treated some and having hair analyses done which showed up some problem areas which treating has helped a bit.. There is so still much I know I could try and do. (I'd love to be able to try Rituximab or antivirals).
  5. roxie60

    roxie60 Senior Member

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    all of you thanks for your responses. I am starting to come to grips with adjusting my expectations, they are definintely tooooo high. I keep thinking I will wake up each and I will be well, energetic, ready to participate in life at a higher level. I was able to do this, overcome when I was younger. The last 7 years has been an eye opener. I just am not able to overcome so I need to learn to do what I can and accept when I cant.
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I am doing great. I was in bed, vertigo and relentless exhaustion before I found good help and blood testing. Sick for 20 years, got worse and worse. Finally, I am doing great! Got POTS three years ago and improving from that now. The right testing and supplements along with diet have been amazing.
  7. ukxmrv

    ukxmrv Senior Member

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    I've not found the right things to help me and it's been over 25 years now. Seen very few people recover or even get substantually better on all those years.

    Every now and then I do find something that helps (like Valtrex, Immunovir, MAF314) but a lack of money stops me from being able to take advantage of these as much as I would like. Some symptoms improve (and the things I mentioned have helped me) but it's not a cure and every 5 years or so I develop new problems. For example a bout of food poisoning set me back years. A major accident a decade. Reactions to protocols that didn't work - years.

    I'm always on a "protocol" so can't answer your questions in a meaningful way. You'll only find that new people can do this easily or those who didn't try any treatments for a long time. There doesn't appear to be linear progress unless people find a specific thing that clicks (and that is unusual).

    It can take a long time to find something that helps. If people address their symptoms early on and start finding things early on it does seem to be easier. Even for them it can be steps forward and backwards for years until they either move to another protocol, doctor or iron out the problems they face.
    taniaaust1 likes this.
  8. Dainty

    Dainty Senior Member

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    Everyone's journey with this is going to be different. If I were you'd I'd let my expectations kinda free-wander rather than trying to control where they go. Personally, whenever I've felt the expectation of being well soon, or someday, I've reveled in it and enjoyed it, regardless of whether or not it actually seemed realistic. The boost, for me, never made my downswings of expectations any worse, so I figured may as well relish the idealism of being well while I have it.

    I'm going to begin by answering a question you did not ask:

    What level were you at before you started addressing your health issues and for how long?

    I varied between these two:

    c. 40-50% function 6-8 hrs a day, a few tasks around home, maybe grocery trip
    d. 60-80% function 10-15 hrs, work part or full time, able to drive short distances

    This lasted about 3 1/2 years for me. I was in a push/crash cycle, and knew only the "going to doctors" route which yielded no answers. I did not seek out treatment protocols on my own; I had no diagnosis beyond the suggestion of psychological issues and it didn't occur to me that there were treatment opossibilities out there that the doctors didn't know or didn't inform me of.

    1. How did you feel when you started trying to address your CFS/ME or other health issues?

    a. 0-10% bedridden most of the time

    2. Using same letters above how do you feel after being on your plan/protocol?

    I began with the plan/protocol of staying alive. Literally. It was intensive lifestyle/stress management (e.g. no vocal conversations), supplements, trying not to starve to death from severe food sensitivities (needed I.V. nutrition at one point, had to subsist off of feeding tube formula at another point) and trying to keep myself breathing in the face of severe MCS reacitons that shut off airways. Can't say I really call that a plan/protocol, it was just an all-out fight for survival.

    Once I moved to a better environment after about 2 1/2 years of that, I went to:

    b. 10-30% function at low level 3-4 hrs a day, showering is major accomplishment

    ...rather quickly. Stayed there for about 3 years. This was the time I stabilzed and had the freedom to actually try a lot of things. I received only marginal or temporary improvement of my actual condition from everythig I tried, but found many things that improved quality of life.

    3. How long have you been on the protocol and do you attribute your improvement to your protocol?

    I attribute my initial improvement to reducing chemical exposure. Moving to a porcelain environment literally saved my life; it felt amazing to have an entire day go by without a severe reaction. In other words, my body wasn't being beaten up by exposures anymore so it had more of a chance to stabilize.

    I have been on my current protocol, which is an actual treatment along with additional interpersonal and lifestyle management, for the past 10 months, but there's been a few months I had to stop it for a while so it's more like 7. For the past 5 months my condition has been at:

    c. 40-50% function 6-8 hrs a day, a few tasks around home, maybe grocery trip

    ...if you count someone else driving and occasionally assisting with the wheelchair. I definitely attribute this jump of improvement to my current treatment protocol, and fully expect the improvement to continue until I am completely well. Perhaps that may seem overconfident, but I've found the root of my issues and they're being permanently resolved so I'm not seeing any room for relapse.

    4. Are you fighting this battle alone or do you have support from others in your life?

    This is a tricky question to answer. Thankfully financial issues have not been a burden to me. For many years I had very little emotional support, but I did have a large group of people mentally supporting me, a dedicated caregiver who worked very hard to help me as much as possible, and I was always able to find people online willing to lend an ear and offer what they could. For the most part, I was shielded from unhelpful comments, which in and of itself is almost a form of support.

    Now, I feel like I have adequate support - barely. My caregiver receives much credit for interpersonal changes, and another major factor has been the treatment improving my brain function enough to be more social.

    5. Do you feel continuous improvement or do you have some good days and bad days?

    The past few months it has been continuous - but with qualifiers. If I overdo, if I stress myself out, if I eat the wrong thing or if certain environmental dominos all tumble at once then I will have bad days. When all my ducks are in a row then it's just upward momentum, and it feels great!!!! :)

    6. Did / are you symptom free? Is that a realistic expectation for me to expect

    My pain has reduced by about 90%, my cognitive issues by about 70%, my PEM/PENE has, for all intents and purposes, vanished, I've not needed allergy medication for months (when I previously required it several times a week) and my severe MCS symptoms have significantly abated. That is, I'm (barely) beginning to longer need to wear a gas mask when I leave my porcelain environment - before I obtained the mask there were years I was unable to see doctors because I couldn't leave my protected area.

    Before I began this treatment protocol, the best I ever expected for myself was to get well enough to somewhat function in normal life, with symptoms. Now, I expect to become completely well. Is that a realistic expectation for your case? Honestly, I don't know. But I sure hope so. :hug: Know, at least, that it's not entirely impossible.
  9. Sparrow

    Sparrow Senior Member

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    0. Originally crashed then recovered to semi-normal functioning within a year. Had a gradual slide back down over many years that ended in a quick plummet that landed me bedridden.

    1. I was at an "a" (bedbound) when I started treating this. Wasn't diagnosed until then.

    2. Am still at an "a" (bedbound) on your chart, but the difference in how I feel and what I'm now capable of is staggering.

    3. Have been treating for only a year and a half so far, and so far with mostly minor interventions (i.e. TONS of supplements, but no drugs), rest, and pacing until we get my insurance situation sorted out. I credit the extensive supplements, diet changes, etc. with a tiny portion of my recovery. The bulk of it I credit to stopping pushing myself too hard so often and consequently allowing my body the chance to avoid further damage and begin to heal.

    4. Have a supportive husband, and a worker who comes in to bathe me twice a week. Other family/friends are not unhelpful, but not really helpful either.

    5. Overall progression has been consistently positive. Still have backslides if I try to overdo it. Overdoing it is a pretty definite ticket to some bad days, but on the plus side if I can keep from overdoing it, that seems to eliminate the roller coaster entirely. Prior to being diagnosed and starting treatment, I was on a consistent downward slope.

    6. I am not symptom free. But I notice them much less. If I just lay here and did nothing all day every day, I would probably be able to say that I felt symptom free (with the exception of some memory issues that I don't notice as much anymore because I've kind of adjusted to them). But if I do anything at all, it has consequences. So I'm not actually free of symptoms at all, it's just that my symptoms are triggered by too much activity so I now know how to avoid noticing them.

    Originally I expected that I would bounce back as quickly as I crashed (Ha!). I now know that this won't be the case for me, and have started to try to revise my dreams accordingly. I have tried to let go of things like returning to work or having children, or other consistent activity. If I get there, great, but I want to be able to find ways to be happy even if I don't. My current hope is that I will eventually (after years of recovery) be able to do things relatively freely one day a week if I rested the rest of the week and didn't go back to work. I feel like that is the most that I can reasonably hope for, and the least that I can handle right now when I consider what the rest of my life will be like. It frightens me greatly to think that there is a chance that I will never get there, and I'm not ready to face that. I can live without having the life I thought I would, or even a normal life, if I can manage to regain some pieces of it.

    I don't honestly think that any of us are ever going to be entirely symptom free unless an actual cure is found. I think getting partly normal functioning is probably a pretty great victory. ...Although it seems like people who first crashed young and then took good care of themselves after can get pretty close to well. I wish that I had known then what I know now...
    taniaaust1 likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    roxie.. while you are coming to terms with the illness. Never forget that things are far better now then in the past as scientific advancement and technology does grow year by year.. and thou ME/CFS research is moving real slow.. with each year there can only be progression and getting closer to knowing more about the illness.

    Also one thing which is great about having ME in these times rather then 10-15 years ago.. is you can be trialing things far quicker as back in the past be it an anti viral which may prove to be the answer to major improvement for you or whatever ..
    In past none of that info was available to us or doctors and hence its only been the last 10 years or less in which we all have been able to communicate and be really seeking hard for the things which could help us. Those nowdays have a heap more hope of a cure being found in their lifetimes as scientists start to work more together and have so much more info at their fingertips.

    So I suggest to dont dwell on anyone who's had this illness very long term and believe that is where you probably will end up being as there is a good chance it just wont be like that. Come to terms with where you are right now... but do hold hope for your future.
  11. Nielk

    Nielk

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    I think that "expecting a cure" as much as that sounds comforting, it is not something that I believe is very practical.

    There are so many chronic illnesses out there that are well known, well funded with specific bio-markers yet the best one can expect is some relief or keeping it under control.

    Most of these are known auto-immune in nature but, others are not.

    I am thinking of Diabetes, Lupus, MS. Parkinson's disease. Crohn's disease, Ulcerative Colitis, Rheumatoid arthritis, Asthma or AIDS.
  12. lnester7

    lnester7 Seven

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  13. Nielk

    Nielk

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    Right - Inester 7.

    I don't know why I posted what I did at post #11, except that this was going on in my brain this morning.

    Actually, there is such a thing as remission. I have been in a remission from Crohn's the past 25 years. Please ignore my post #11. should I just delete it?
  14. Dainty

    Dainty Senior Member

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    I would agree that expecting a cure to come to us, in our lifetime, is not practical...

    ...but.

    Expecting a cure to be out there, in existence, somewhere, is practical.

    The odds of you finding it? Only you can give an answer to that.
  15. roxie60

    roxie60 Senior Member

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    I've known for years my body just doesn't work but I always had hope to find the reason(s) and get help to resolve. But now I just feel like a failure, unrecognized by those around me how hard I have tried over the years to be productive, taken unkind and abusive behavior because I have not had the extra energy to deal with people who behave badly. I feel I just have no ability to rally myself, I've lost desire on so many levels. I feel defeated and I feel sad that I allow that. There are so many examples of people that overcome so many personal challenges in their lives it makes me ashamed that I sit here feeling my only motivation is to give up and it makes me so sad. I've always been one to encourage others but dont feel I get encouragement, I get told what I should be doing, all the bad that is going to happen if I dont get my act together, how much more I will lose but no acknowledgement I have hit a wall. So close, so scared of being alone and facing no income and no health benefits if I dont rise above this funk once again. Sorry for being a downer. I really do appreciate the kindness and understanding of strangers on this forum. I am better than I was in April but dont know if that is just a peak (if it can be called that) before the next storm. Having anxiety at work wondering when the next illness hits me. I felt well enough to clean my bathroom and some of my kitchen this past Sunday and then even though tired took a bike ride with a friend, nice to be outside. Missed work today, so fatigued, tired (still not sleepng well even with CPAP), just feel defeated, worried my mind will let me down at work, unable to focus. I am so inconsistent.
  16. roxie60

    roxie60 Senior Member

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    BTW, thanks to everyone who has shared their experience, much appreciated.
  17. taniaaust1

    taniaaust1 Senior Member

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    sending you some **hugz** (if you are accepting of them).

    Try to remember that the illness isnt you, its not who you are. I know its hard when others around onself arent seeing what is really going on, thou you are struggling so hard. It is the illness itself which may be making you loose motivation, so not something to feel ashamed about.

    There's been many a time when Im mentally beating myself up for "lack of motivation". Its only when I get more energy or feel healthier that I suddenly realis that. the lack of motivation wasnt really coming from me myself but just cause i was unweller then I was realising at the time.

    Its sad that you are having to fight/battle this illness so much right now to try to keep what you currently have in your life. Im so grateful that I arent nowdays trying to hold a job while being quite sick- to sick to be, things dont get much worst then that. Thou Im less able to do what you are currently doing, I see myself in a better postion then you currently are as Im now getting disability and home support. I recognise just how hard things must be for you and how hard you must be having to try. I just want you to know that someone is seeing that even if its coming someone from online.

    Yes but those people arent dealing with illness which so so overall affecting, memory, concentration.. and energy levels to a level which just isnt in other illnesses (except ones close to death).

    eg you may admire someone like one of those artists who have overcome disability and earn a living by painting with their mouths as they have no arms and legs.. thing is the person is still feeling energy, the person still has a bright mind able to focus easily, that person probably is feeling well.

    ME/CFS in the depth of the illness.. shouldnt really be being compared with other illnesses as its soo different and probably far more challeging then nearly all others.. Stay aware of your achievements even small ones and with the realisation that you achieved them even thou they were hard and an effort to do. Its esp important to like be giving yourself a pat on the back one could say if others arent if no one else is.

    Not being able to defeat the illness, it also dont mean you are weak.. we wouldnt view a cancer patient who cancer gets the better of them as being weak.. you cant control illness. If you are doing so, stop judging yourself by the inability to defeat the illness and recognise you are doing the best you can.

    Here's a quote I like "Respect yourself for what you have achieved rather then what you have not done". I suggest to put this on your fridge if it resonates at all to you.

    Its a lack of feeling "self worth" which makes it so the praise of others feels very important to be getting. Ive been working on my self worth of late (this illness and others responses to it, causes ones self esteem to take a bashing), trying to make it so that I arent hurt by others not always recognising my struggles. Ive started to keep a list of all the ways Im valuable. eg I am valuable because Im kind, Im valuable cause I like to help people etc etc.

    We cant expect people to understand this illness and how we feel as its really unimaginable to the average person. A normal healthy person just cant imagine what it is like to be pushing to ones limits day after day and while being sick too.

    (I do thou understand just how hard it is too to get the motivation and energy up to work on onself so others arent affecting one so much).

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