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Knitting Equals Pleasure, Despite ME/CFS
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My ME/CFS Story

Discussion in 'Alternative Therapies' started by flutterbytans88, May 27, 2012.

  1. flutterbytans88

    flutterbytans88

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    Hi, I developed M.E/CFS almost three years ago and since then I've been finding and using alternative and natural ways to help my recovery and management, I would like to share my story here: http://alternativemecfsrecovery.blogspot.co.uk/
     
  2. xchocoholic

    xchocoholic Senior Member

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    I'm happy this is working for you. From the looks of your blog, you just needed to rest more, drink more water and eat some healthier foods. So, you may have been misdiagnosed with ME/CFS. It happens all the time.

    For many of PWCS, these remedies have helped us cope but haven't healed our ME/CFS. I consider myself as managing my me/cfs triggers via diet and R and R, but not necessarily healing my ME/CFS.

    FWIW ... I took a quick look at your recipes and noticed that you're using wheat. Many of us are gluten intolerant and have other significant food intolerances. Dr. Myhill, UK CFS Expert, explains this and other CFS info on her website ...

    tc ... x
     
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  3. flutterbytans88

    flutterbytans88

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    I can assure you I haven't been misdiagnosed with M.E/CFS it still effects me greatly now, I'm STILL recovering and try to manage my symptoms the best I can and wanted to share this, not once have I claimed to have 'cured' my M.E/CFS or made a full recovery and certainly not all I needed to do was rest and drink more water and eat healthy, I find these comments highly insenstive, if you did in fact read my entire blog especially my first post you would see this was the case, I did far more than just sit and rest and put more fruit into my diet! Perhaps I didn't spend enough time highlighting the bad times, the negative side, the struggles, heart ache and pain I went through to convince you I've got this invisible disease, I didn't think I needed to, especially on a site offering support and understanding but I like to keep a positive attitude, mostly
    I only started this blog a few days ago and it far from complete and doesn't yet tell a full story of my journey just an introduction, like many M.E/CFS I havent got the luxury of unlimited energy to write everything at once.
    I wanted to share this will fellow M.E/CFS sufferers in the hope it would bring something positive to such a debilitating disease not to be ridiculed and called a lair.
     
  4. Calathea

    Calathea Darkness therapy

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    I'm struggling a bit with the idea that "my recovery" does not mean "I am cured", I must admit.
     
  5. xchocoholic

    xchocoholic Senior Member

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    My apologies. I thought possibly being misdiagnosed with me/cfs was good news. Just goes to show how
    differently we look at things.

    I wasn't calling you a liar. I was just saying that the symptoms I read about
    on your blog don't have to be from me/cfs. I still think that's good .. Lol ..

    Also, if what you've done so far helped you recover then, your doctor could've diagnosed you
    incorrectly. It happens all the time .. It's not personal. I'm a celiac so I've been told that I was
    misdiagnosed too. And if going gf had cured me, they'd have been right.

    Again, sorry to offend you.

    tc .. X
     
  6. silicon

    silicon Senior Member

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    I always like hearing people being able to find relief from their suffering, and improve their health by whatever means. I think it’s awesome that you’ve improved your condition! The techniques you describe seem fairly general principles of healthy living—applicable to many health conditions, not just ME/CFS. And many with ME/CFS practice such techniques, which while they can be helpful, fall far short of attaining a recovery— and sometimes these techniques have minor, if any, noticeable impact whatsoever. (You can read all about this on the various threads of this site.)

    It’s only human to become excited when anything works for us, and to want to share it with the world. I think that most of us with ME/CFS have become excited about one technique or another, whenever there is some perceived benefit in our own particular case. However, the journey of ME/CFS varies widely from one person to the next, in terms of severity and manifestation of symptoms, and it is very difficult to extrapolate from one’s experience to that of others. And yes, mis-diagnoses of ME/CFS do occur all the time, due to the overall poor state of knowledge.

    I do think that if your condition responds so impressively to such techniques as you describe, then your illness is very, very, very different from the illness that the vast majority of those with ME/CFS are experiencing. This doesn’t make your experience any less valid, but it does limit the applicability of the techniques you describe.
     
  7. MNC

    MNC Senior Member

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    Two threads today with "my recovery" and "my cure" happened to be spam and made me very upset.

    Please, ban these spams. They are not only creating false illusions and disappointing very sick people but they do this to try to get our money or our visits to some blog with advertising or... We have seen this so many times.

    If they write "my recovery" or "my cure" in the title to get our attention, this should be real, not just spam for selling something.
     
  8. SOC

    SOC Senior Member

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    Spam is not allowed here, but the mods can't take down if we don't report it. So it's important that we all report spam as soon as we see it.

    flutterbytans88 -- We are a large community with long-term and wide-ranging discussions on many aspects of this illness. Perhaps it shouldn't be surprising if people are a little skeptical of someone who comes in and right off the bat posts claiming recovery for this serious, incurable illness and encouraging the membership to buy their book, read their blog, or whatever.

    New members are always welcome. As in real life, when joining an established group it is good to listen, get to know people, get some background before you come out with extravagant claims.

    If you do some reading through the threads you will see that the things you did to achieve your recovery have been well and thoroughly discussed here. Please contribute to those discussions if you have something to add. Introduce yourself in the Community Lounge and let us know what has worked for you -- you will find people more than willing to congratulate you on your success.
     
    silicon likes this.
  9. ukxmrv

    ukxmrv Senior Member

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    Dear Flutterby,

    I have had ME for over 25 years and can see little on your website that has helped me or would have been useful in the early stages of the disease. Spent a lot of time of diet in those first 5 years and found that much of the claims around diet and food didn't benefit me. Tried simple light exercise (yoga, tai chi) and meditation and reiki etc etc. Didn't help, the exercise made me worse and was largely a waste of time.

    On your website you claim for example

    Vegetables: All vegetable will supple your body with energy the main high energy vegetables are sprouts, broccoli, asparagus and spinach.
    Nuts: some nuts are a great energy source and well suited for a quick snack, almonds, peanuts and soy nuts are a perfect example

    This is terrible advice for me. Sulphurous veges make me much worse and nuts cause terrible digestion problems for me.

    You also say under exercise

    Tai Chi: For people with FMS and ME/CFS, Tai Chi can be a way to get your body moving, increase your energy, and promote flexibility and strength.

    Once again terrible advice for me. People with ME have exercise intolerance as part of their disease so suggesting that this would make many of us much weaker and with increased symptoms.

    I do realise we are all different. You have listed things that have maybe helped you or you have read about elsewhere. The website is set up with the best intentions but it contains things that make patients worse without any of the context of recent understanding of the disease. You don't appear to have access to proper medical treatment or else you are choosing not to use it?

    None of the leading edge doctors or any of the long term and experienced patients and those treating ME or CFS would be creating a website like yours and that is what new patients need. Proper up to the minute advise on what works and what doesn't (with the proviso that we are not all the same and need much more research).

    Maybe spent some time on the forums where there are expert patients and buld your website from that?

    Also please consider your diagnosis and the possibility that you may have been misdiagnosed. Especially when you say
    Before I had M.E/CFS I was stressed all the time, I worried about everything (even things I had no control over) I didn't take care of myself in any way, my diet was awful and my body couldn't cope with it any more

    and

    I've also tried yoga and tai chi (please check with your medical professional before doing so) Doing some gentle exercise can help with muscle pain and give a much needed energy boost

    If you have an energy boost from exercise and it helps with muscle pain then you simply cannot have ME as it has exercise intolerance as the hallmark of the disease.

    Please stick around some of the groups where treatments are discussed and see how other patients are getting with the methods you are promoting. It's complicated and we are all different.
     
    warriorseekspeace, Tito and Calathea like this.
  10. Calathea

    Calathea Darkness therapy

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    Well said, ukxmrv. I also noticed the following:

    "I am a Mother of four children and being a Mother was my only identity, it was my life, it was all I did and when I could no longer do all the mummy things I have always done and loved, it felt like a huge part of me was gone and lost, this had a tremendous effect on my mental state, which in turn had a negative impact on my symptoms."

    If you were raising four children, stressed beyond belief, in a constant state of anxiety, suffering a substantial identity problem, not taking care of yourself in any way, and eating a diet which was "awful", it sounds like that may well have been the entire problem. I'm not dismissing it, anxiety is a very real illness, and stress and exhaustion at that level are terrible. But that does not make it the same as ME. One of the most basic tests to distinguish between ME and depression is to find out how the patient feels after exercise. If the exercise makes the patient feel better, then it is not ME and is quite likely depression. If the person has ME alone, they will feel substantially worse after exercise. The test falls down a bit when it comes to people who have both (they'll feel worse after exercise, but it's more than it doesn't automatically exclude depression), but since in your case you felt better rather than worse after exercise, it suggests a misdiagnosis of ME.

    It is very believable that the techniques you learnt were excellent for your particular problem. However, they are of limited use in people who have ME. People who have had ME for three years are aware of how difficult it is to treat, how much it varies between patients, and why it is not helpful to claim that something this basic is the cure for ME.
     
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  11. Tito

    Tito Senior Member

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    I think there is no doubt left. Under the ME umbrella, there are at least 20 different illnesses. That means many many different ways to 'manage' the symptoms (and it does not help mixing up the concepts of management and recovery). I am tired too to read that with a portion of lettuce and 3 minutes of laughter I will be ready for the Olympic Games. Even though I am genuinly glad for people that they feel better in their life, it just depresses me more to read that sort of stories. There is also another dimension to these stories. It is the fact that despite talking about their 'recovery', you also realise that they keep struggling, which in my view means that they are in denial and secretly hoping that by pretending to be fit, they magically will become fit. Finally these stories pollute the Net making the layman believe that a good diet is just what it takes, whilst people are losing their future, their family, their friends, their house, their life...
    In other words, I DON'T NEED BROCCOLI I NEED BIOMEDICAL RESEARCH
    Sorry Flutterbytans88 to sound so harsh but this is how I feel.
     
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  12. flutterbytans88

    flutterbytans88

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    I'm really sorry I didn't mean to upset anyone or give misinfornation I just want to share a part of my story thou it was imcomplete this was the wrong thing to do, I really did have the best of intentions, I didn't share the blog to sell anything, I thought I was sharing something positive. I've never really used forums before so my first post was very niave.
    Also I'm aware that I've used the word recovery in the wrong context, though I never stated that I found a cure or that just doing these things would help a full recovery. I only postedd a few simple things to begin with on the blog that along with others (that I didn't get round to writing) that helped improve my life better and gave me some independence but again I didn't state this very well, and I'm sorry for that again I though I was doing a good thing in sharing something positive. A year ago, I coulnt get out of bed and was totally dependent on my husband, needing help with dressing, washing, being helped to the toilet which was extremely painful for me to walk not being able to spend proper time with my children, now I spend less time in bed, thou if I get ill, catch a cold or a bug from others I'm back in bed for days sometime weeks, I get to spend more time with my kids and can do a few simple things, fold some colothes, make lunch for my kids, wash my daughter even make myself a cuppa which I could do a year ago but a full recovery not not yet, I can't walk my kids to school, I can't help my husband with the housework, do the shopping or go out on social occasions, last time I did it sent me to my bed for 2 weeks, perhaps I should have wrote all this in the blog but I wanted to start with what I thought was a positve view coz we live with negative everyday and perhaps I should of stated that it took a lot more than just more water, rest and healthly eating and some gentle exercise to get where I am now from where I was, and I did intent to do so, but maybe my wanting to give some positive to others was misguided and set out wrong. My unhealthy lifestyle before M.E/CFS didn't cause it (I don't know what did) but it did highlight how unhealthly I was and if I had any chance in getting better then I would have to start with some changes first, that's where I'm at, at the start, that what I inteneded to share the start fo my journey, not the end where I'm all recovered by just doing the things , I'm well aware it gonna take a lot more that that, coz I'm not there yet, I'm only just starting improve having spent 2 yrs in bed and even this has taking a year. I've treid to put in the blog that these thinsg worked for me so far and in no way am I suggesting they will work for you or others but maybe I hoped I could of helped someone ny sharing my own experiences but it all got lost in translation. I will say this thou, the next person that comes along and try to do what they think is something good and shares it with you even if it is misguided please tell them in a much gentler way.
     
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  13. Tito

    Tito Senior Member

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    Your post is an unfortunate case of good intentions (putting a brave face on a bleak situation) turning sour before an audience of people fatigued of being fobbed off with simplistic tips. I undestand your wish to emphasise the positive aspects of what you have tried and your laudable wish to share it with other people in the same situation. I also understand people (like me) who over decades have tried so many things and are still so ill. For years, i put a brave face and it has backfired because people cannot grasp the severity of that illness, that includes those who decide how much money to invest. Hiv sufferers have convinced political leaders to invest in research by showing emaciated bodies of 25 years old dying in their diarrhoea. Unfortunately for ME, it is the opposite we see (i'm not talking about you) with people healed by positive thinking, God, emotional management, etc. No wonder nobody takes our illness seriously.
     
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  14. flutterbytans88

    flutterbytans88

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    I would like to add that I know 'proper exercise' can do more bad than good and is no no I wasn't suggesting that, but research does show that for some doing gentle exercise like yoga or tai chi that uses gentle movement and streches can make an improve, so I did put this in in good faith, but can see how this may have been misunderstand.
     
  15. flutterbytans88

    flutterbytans88

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    Yea I can uderstand that now, and my first reply was a bit rash and harsh, I was having day and took the first comment has not being belived that I do have M.E/CFS and reacted badly, I apoligise for that. Some of the replies have been very helpful and made me relise that what I was doing could infact do more harm and that is not what I want, I will delete many of the posts about therapies etc but I will keep my story perhaps adding more explainions that it si infact MY story and should not be seen as a cure or that I'm suggesting in anyway others try what I'm doing in thinking that its a way for them to recover. I'm still learning and I make mistakes like everyone else and again I'm sorry for any upset I've given.
     
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  16. Tito

    Tito Senior Member

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    You don't need to apologise. You clarified your situation and made the effort to understand other people's point of view. And you remained polite and courteous at all times.
    The whole thread just shows how difficult it is to be seen from the outside as a 'group' when we ended up on the same boat by chance but we have all different backgrounds, circumstances, personal beliefs, etc.
     
  17. flutterbytans88

    flutterbytans88

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    Thank you Tito :)
    I have amended my blog, deleted all other post except the one with my story, thou I did add a quick paragraph at the top explaining that I'm not suggesting I've cured myself etc..
    You did make a very good point though about most people seeing only good, the so-called healed and not enough of how this illness can really effect us. My decision to only present a positive view is not going to highlight a much needed awareness, so in due course, when I'm ready I will add my full experience and what I've been through bad and good.
     
  18. flutterbytans88

    flutterbytans88

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    Recovery does not mean cure. Recovery is an attitude, a stance a way to face daily challenges.
     
  19. Sparrow

    Sparrow Senior Member

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    For what it's worth, I didn't mind you reaching out here. I think you were sincerely just trying to share with us, and I hope you won't leave feeling bad about it. We all get enough adversity from outside without turning on each other too. And while I think some of their comments about slanting your story are valid (and you seem to have taken in that information quite gracefully under the circumstances), it bothers me to see people making summary judgments about this your illness based on some vague comments admitting to normal life stress or other emotional factors. That sounds too much to me like what certain psychiatrists have been trying to do to the rest of us. We all have stress, and emotional upheavals, and other similar factors in our lives. None of us probably took care of ourselves as well as we could have before getting ill. And all of that may have even played a legitimate role in running us down and making us more susceptible. That does not make it the cause of our illness.

    I hope that we can stick together and have each others backs here. We get so used to dealing with the enemy, I hope that we can recognize potential friendlies before we shoot. :) That said, I understand why people here are sensitive to that type of claim too.

    I think some people's bodies will be able to recover better than others if they're given the chance. Some people do recover, at least partially, as a result of all kinds of different treatments, and I don't think that means they didn't all have ME to begin with. It just means that every body responds differently to the effects of this illness, and some of them are better able to bounce back than others, or need different kinds of help to do so. I even think it's possible that 1% of ME patients do feel a little better after very light exercise (through whatever mechanism). That doesn't mean that it's not awful for the other 99%, but it doesn't mean those 1% are lying or don't necessarily have the same illness either, or that they wouldn't get worse just like the others from exercise that was more intense.

    At the same time, I agree with what others have said in that comments like that tend to get distorted often. People who don't understand the illness are all too ready to hold up those 1% and decide that the rest of us are unmotivated or lazy, or to ignore that even those 1% weren't actually "cured" even if they improved slightly. There is already a hugely common misconception out there that simple lifestyle changes can cure everyone with this illness, and therefore that it's our own fault if we're still ill. Despite the fact that many of us have already tried all of that and are still very, very sick. So I would say, if you're willing, just try to make sure you're making honest and complete statements. Celebrate the improvements you've gained (because we all know every one of those is worth celebrating! :)), but be honest about the limitations of them too, and about the remaining realities of living with this illness. I don't think people here would be struck badly by that.

    And while I still have very severe ME, I don't discount at all the importance of rest and all the water I drink. :) Just because it won't cure me, doesn't mean that things aren't worse if I don't do it. ;)
     
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  20. Calathea

    Calathea Darkness therapy

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    Well, that's not really true, according to how it's generally understood. Recovery means that you get over the illness and are healthy again, so it's closer to "cure" than anything else (the main difference being that "recovery" can be spontaneous, whereas "cure" implies treatment). If a recovery isn't complete, it's known as a partial recovery or remission. You can have the best, most productive attitude/stance in the world and still experience deterioration in your illness. The thing is, a lot of people decide that they are going to improve their attitude and do the best they can, and some of them think of it as, "This is the start of my recovery." For the ones who actually recover, I can see how they would end up associating the two very strongly. It doesn't work that way for all the people who find that they're still ill, they just have a more positive attitude. Indeed, insisting that someone is recovering when they are visibly deteriorating is highly unhealthy psychologically. We also tend to be very jumpy about this because we have all been told by well-meaning people that if we just think positively and eat more fresh vegetables, we will recover. ME is a serious neuro-immune condition which is not curable by positive thinking. The people who give us this advice generally go on to blame us if we don't accept it as a heaven-sent cure for our illness, and accuse us of wanting to be ill and even of making ourselves ill. Does that explain why people have been getting so upset?

    I get that you found that you needed to make a profound attitude shift, and that focusing on the negative is something that really doesn't work for you. However, if you want to be active on a forum about illness, there's quite a lot of negative stuff that comes with the territory. You may find it easiest to restrict your activities here to the more social parts of the forum, if the heavier stuff bothers you. Plenty of us do, as there's only so much illness talk you can immerse yourself in and still keep your head clear.

    Meanwhile, I'd suggest you clarify matters on your blog a little, if you want people in the ME community to read it. (And you may decide that you'd rather keep it as a private thing for the time being.) Explain how ill you are and were, what the illness was like, more about exactly how the treatments worked.

    You may find it useful to learn more about what severe ME is like. I'm afraid it's not true that anyone with ME can benefit from tai chi or yoga. Anyone who is severely affected (and this forum has a lot of those, perhaps the majority) is unable to do anything like that level of exercise, and struggles with the amount of exertion needed for basic washing. Moderately affected - not quite sure how it works for them, but I do remember going to a very gentle yoga class when I was moderately affected, and being wiped out for the next three weeks, so it's likely that even the moderately-affected folks can't manage it either. Exercise intolerance is the hallmark of ME, remember.

    In fact, I'm trying to think of anything you can say will be good for everyone with ME. Apart from an improvement in symptoms, e.g. we could all do with better sleep (but the path to better sleep will be individual), I really can't think of anything. Lack of stress, perhaps. That's not really a treatment, is it. There are certain areas most of us find it useful to work on, such as sleep, nutrition and so on, but even so, nothing is universal. I think you have a lot of lovely ideas, you just need to contextualise them better, and to understand how they read from the perspective of people in this forum.
     
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