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Author Topic: Why I suggest dumping your label  (Read 2807 times)
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roger
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After 12 years of trying, I'm now A OK


« on: August 01, 2017, 08:35:54 AM »

Please note - before reading this thread and any that might follow, it's important to read the introduction thread because this will give you an indication as to whether or not this board might be of value to you.


If youíre a member of or visitor to this forum, the odds are that youíve been given a Ďdiagnosisí or a combination diagnosis of Chronic Fatigue Syndrome, Fibromyalgia or Myalgic Encephalomyelitis Ė usually reduced to ME because nobody can spell it. What does this diagnosis tell you and how does it help you?

Chronic Fatigue Syndrome Ė this tells you that you have chronic fatigue, which you already know because itís why you booked an appointment with your GP in the first place. How does it help you? It doesnít because the medical machine have nothing constructive to offer you.

Fibromyalgia Ė this tells you that you have muscle pain. Again, you already know that. How does it help you? Well your GP will possibly prescribe paracetamol or ibuprofen. Your muscle pain is chronic, so the painkillers will be taken long term, which is a sure way to damage your liver amongst other things that you can research for yourself. So long term, it really doesnít help you.

ME Ė I have no idea what this means or what its implications are, and neither does your doctor. So it tells you nothing and doesnít help you.

But what DOES a diagnosis like this do for you? Either consciously or subconsciously, it tells you that you have a debilitating disease thatís chronic and probably incurable. What do you think that does to your mind-set, your emotions, your digestion and your immune system? The worry and anxiety such information induces damages one or some or all of these things leading to a cascade of other health problems. Not a good start to a recovery plan! And the funny thing is that itís a lie Ė a diagnosis of any of the above is meaningless and can only lead to a big dose of stress, which is probably the biggest cause of death in the developed world.

So whatís the truth? The truth is that where you are now began with just one imbalance created by toxicity or deficiency or both, and that imbalance is either physical, emotional, mental or spiritual or a combination of two or more of these. If you can eliminate the toxicity or deficiency, thus correcting the imbalance, nature will step in, and over time, youíd recover, at least in part and very possibly in full.

The problem is that there are hundreds of potential imbalances along with thousands of potential toxins and deficiencies, and other than by pure luck Ė though pure luck does happen occasionally - itís like looking for one particular fish, letís call him George, in a very large ocean.

And the solution is? First, dump your label, then fully accept that you have an imbalance somewhere, and that imbalances can be corrected by dealing with toxins and deficiencies and that, therefore, over time, you can bring yourself back to homeostasis. To do this, the requirement is to work with your spirit, your body, your emotions and your mind to gradually give them what they need. Importantly, embrace the existence of Ďyour imbalanceí and the message that itís giving you because doing so is the first step towards wellness.

So are you ready to dump your label? If not, can you please post and say why? I think your responses will help other members and visitors Ė and me Ė regardless of what you say, positive or negative. And please donít worry, Iím very difficult to offend!


« Last Edit: August 03, 2017, 12:51:21 PM by roger » Logged

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TJ
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« Reply #1 on: August 02, 2017, 04:44:05 PM »

Hi Roger,

I dropped the labels at the beginning of the year as far as my recovery goes.  The labels are needed if you need to claim ESA and/or PIP as is the evidence to support these labels.

I can relate to the anxiety dragging you down.  I will lose my right to be on the professional nursing register in March 2018 as I have not accrued any practice or educational hours.  The closer is was getting toward the March date the more anxiety I felt.  My CSF specialist spend close to an hour talking to me about this issue last year.  Firstly, it was not a realistic plan to expect to be recovered enough to go back into such an acute environment.  We went through the positive elements.

Obviously there is a massive shortage of nurses, particularly in intensive care where I worked.  The government are making return to practice programmes more widely available.  These programmes are only 6 months long allowing youto go back on the register and practice professionally.  I am also getting old and crusty so a 6 month update would be beneficial anyway.

Just by changing my mindset I have dropped my anxiety level dramatically which has freed up energy for other things.

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roger
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« Reply #2 on: August 02, 2017, 05:21:31 PM »

Hi Talen,

Yes, absolutely keep the label for those who require it for entitlements etc, itís at a personal level that youíre better off without it.

And yes, anxiety is a biggie. Iíd criticise nobody for being anxious when facing chronic illness, but I do think itís a thing that all sufferers should try and work on to the best of their current ability Ė it achieves nothing and can be highly toxic. If anyone reading this post who hasnít managed to control their anxiety yet, please donít worry about the Ďtoxicí reference. Youíll manage the anxiety at some point, and when you do, your mind and body will deal with the toxicity.

Very best wishes for getting back into the job that you clearly love with the minimum of fuss, Talen.  fingerscrossed

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neptuno
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« Reply #3 on: August 03, 2017, 02:45:22 PM »

It's difficult to offload the labels when loved ones cling to them because it's what they understand and allows them to pin their support for your recovery. My experience is....no label = no understanding. How can we overcome this ?
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roger
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« Reply #4 on: August 03, 2017, 02:51:46 PM »

Yes, I get that, nep, but I think it's the same as when dealing with entitlements etc. If loved ones and family members feel more comfortable with the label, let them have it. But that doesn't mean you have to. We often don't express what we truly feel, and you can believe that the label's a bad idea but not express that belief - Just nod and smile, that gets me out of all sorts of difficulties  wink
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« Reply #5 on: August 04, 2017, 09:36:32 PM »

Hi, interestingly, the consultant who diagnosed me asked before the final round of tests why I would want the label, and if I thought it would be helpful to have it or not. My answer to him was that although it wouldn't change anything for me it may be helpful in getting access to benefits, and also in access to services. In the beginning it was also often useful for friends and family to know I had been diagnosed with something, however vague, or badly is understood, to explain a lot of changes in activity etc; I think they are mostly used to the fact I have had to change my ways now.
For myself, I can understand in principle that the label is not particularly helpful, but in practice, I do sometimes hold on to it. I find particularly around e.g., benefits renewal time, I get a lot more negative about my condition, presumably because I'm having to fixate on it to some degree to explain it others. That focus and meditating on the symptoms can often exacerbate things, so it makes sense to me when you say that the label can even unconsciously lead to increased stress.
If I just focus each day on what I am able to do that day, without ascribing any particular reason as to why I can't do more, things are generally a lot more positive.
In saying that though, I do find having the label can occasionally make me a bit more gentle on myself, e.g. when I find I can't do as much as I'd like it can remind me not to be hard on myself, and accept my current limits. I guess thinking of it as an imbalance would have the same effect though.  Wink
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roger
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« Reply #6 on: August 05, 2017, 05:21:58 AM »

Hi CeeDee,

Yes, as I said earlier, I absolutely accept that 'the label' can be useful when dealing with 'the system' or if friends and family want an explanation. But I really do believe that when dealing with yourself, it's counter productive, one reason being that if you accept the label you tend to also accept that there's no cure. And I believe that there is. I hope that makes sense.
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MissyRS
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« Reply #7 on: August 11, 2017, 08:09:36 PM »

Roger - you are on fire!!!  thumbsup

I think labels can be helpful ... but I have also come to the conclusion that that is all they 'can' be.  I will not let a label dictate anything about life or possibilities to me anymore ... and I have never felt more free than in realising this.  About a year ago I heard guy speak on a conference tape (It was a Christian thingy - that's how I roll!  wink )  And after listening I knew two things... I am 'able' and I am 'free' and these are the two labels I'm happy to keep from now on.  Can I do all the things I/others think I 'should'? - who cares?!?!?  I'll decide what I want to do and do it the best way I can... for instance I couldn't go to the conference in person - but bought the entire weeks worth of talks and listened to them in my own time.  Perfect!!!! And a GREAT DEAL cheaper too I'll tell you!!!!

So there we go with my twopence worth...  smile
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roger
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« Reply #8 on: August 12, 2017, 07:21:55 AM »

Hey, Missy,

Itís great to have you visit us again. Iíve always loved your attitude and I hope youíll continue to Ďvisití whenever you can Ė the more often that is, the better Iíll like it because youíre inspirational!  thumbsup

Labels Ė The ones I want to see people dump are the meaningless negative ones, which lead them astray and send them into cul-de-sacs . But labels like yours Ė Ďableí and Ďfreeí are the sort Iíd encourage people to get badges made of and pin them proudly to their chest.

Some labels are bad, some labels are good Ė I LOVE yours!  smile

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« Reply #9 on: August 12, 2017, 04:56:28 PM »

I know - I really need to be a more frequent visitor!!

I love this and I also think that along with ditching negative labels we need to try not speaking negative words over our lives... I honestly believe it makes a difference!!

Keep doing all your grand wonderfulness!

 smile
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roger
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« Reply #10 on: August 12, 2017, 05:07:13 PM »

Well I wish you were, Missy, but I know you've got a job and a life to deal with. So whenever you get chance to visit is great  smile

So true!

LOL...I wouldn't call it wonderfulness, but what I'm writing on this board is what I know and what I believe works for many people, but the limited response at this stage indicates that there isn't universal agreement on that.  smile

Anyway, the next thread will be up very soon. 
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« Reply #11 on: January 13, 2018, 02:49:02 PM »

I know these are old posts but just wanted to say don't feel disheartened at what appears to be a lack of interest. Sometimes we read things & find them helpful but are just too tired to comment on them. I'm sure these posts have & still are helping many more people than you realise. I'm definitely going to be coming back on to read more about your recovery. For now though it's time for a brain break  051bye
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roger
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« Reply #12 on: January 13, 2018, 04:21:38 PM »

Thanks, Sesha  smile
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« Reply #13 on: January 19, 2018, 11:42:17 PM »

I guess this is emcompassed in this:
Driving me nuts that people on fb go on and on about their symptoms. I used to just get on with my life but these people never seem to stop going on about them?! Surely thats not beneficial to anyone to just sit there feeling sorry for yourself. Labelling cfs is useless and so is thinking/assuming youre stuck with all your symptoms. Even if you are.. what use does bringing them up every day, do? :/ Sorry for the negative post. I kinda liked it better before a dr stated the words "chronic fatigue" and before i started looking up groups... This is one of the few with a proper helpful approach to it..
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roger
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« Reply #14 on: January 20, 2018, 06:54:24 AM »

Well said, KV - the whole point of this thread is that having a pointless label is counter productive. Thanks for posting.
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« Reply #15 on: January 20, 2018, 09:35:53 AM »

I agree, when I go to see the neurologist he comments that I am his only patient with ME who has a sense of humour, no point sitting about moping about it.
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roger
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« Reply #16 on: January 20, 2018, 10:12:48 AM »

And a sense of humour is worth its weight in gold, TP, so hold on to it  smile
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KV_Tofu
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« Reply #17 on: January 20, 2018, 01:44:44 PM »

Well said, KV - the whole point of this thread is that having a pointless label is counter productive. Thanks for posting.
Dont think I said it well. I was in a state of annoyance whilst typing it haha
Basically what I was trying to say was before I was labelled or join these groups, I just saw my bodys behaviour as something kinda annoying, which i would spend time working out what made it better or worse and just concentrated on avoiding the things it didnt like. It never crossed my mind it was an illness that would ruin the rest of my life. It was just an inconvenience and I would just act like any other sane person would with a casual illness and rest (although its a bit more complicated than that). Being in these groups has made me paranoid about every symptom and made me fear going outside, which is bad in itself because you can send yourself crazy staying indoors (but obviously I will only go as far outside as my body allows). Sometimes I get a bit frustrated with things (eg when i get really bad) but generally I just take things slow and have learnt not to get too bothered by things my body now does like makes me drop things because my fine motor skills are shot when my muscles are showing the fatigue. I just laugh at that now.
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roger
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« Reply #18 on: January 20, 2018, 01:54:20 PM »

That's what I meant by counter productive - people with the label often lose that 'I'll get well' belief, exchanging it for 'there's no hope'.
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« Reply #19 on: May 13, 2018, 12:33:43 AM »

I completely agree with the sentiment here, roger should know that on the whole I agree with his methadology as I know itís taken years of hard work and reasearch and trial and error to come to these conclusions, Roger has worked tirelessly for himself and for us, both on a forum level and more often than not on a personal level to those of us willing and able to,listen and try things.

I am in a strange position currently and hence why I am posting this here of all places. I was labelled with CFS twenty years ago, it was given to me by a neurologist who looked at a sheet of paper that I had written symptoms down on, MS had been eliminated elsewhere, bloods had been taken elsewhere ( pretty basic panels) I went with my mum and the neuro took one look at my list, did not examine me at all, and said it is CFS donít worry you canít get worse it will only get better.


Thus went the rollercoaster for the next twenty years, doctors see this label and use it as a dismissal form, oh itís Carrie, oh itís another variant on an issue, itís CFS, itís neurosis, ( thatís what they thought, and many still firmly believe cfs is,) it canít be anything we want to do anything about as itís CFS, now Iím not wholly blaming doctors, time is limited, money is limited, their attitude as Roger explained in The other threads is directly descended from what they are taught and told, if they donít get the education we canít expect them to do better.

For twenty years I have been convinced they messed up the diagnosis, it nearly cost me my life on more than one occasion both due to physical issues and due to mental trauma from the way I have been mistreated, ignored, and accused of everything from illicit drug abuse to alcoholism to malingering, all of which would be a bonus instead of what we deal with.


I am in the fortunate and blessed position both me and my little girl survived their maltreatment, but the scars now run deeper than I realised, I have hit the depression of my life, and Iím sinking, why? As I now know very well what is going on and it pretty much agrees with what I thought all those years ago, but due to my ignorance, and the doctors inability to look beyond the point of their nose, I have done more and more damage and I now canít get them to diagnose what is going on, I still believe that diet has and will play a huge part in my recovery or management, as does ensuring I do better at pacing and resting.

But at the moment I need the different label as treatment options are fully dependent on that, but at the same time the CFS label is nothing but damaging. They are trying to change many over to having conversion disorder, or similar names to try and say that folk donít have CFS in the light of recent research suggesting that CFS and fibro may actually be physical conditions. Why? I have my theory!


Donít rely on a label, donít rely on anything, just do all it takes to improve what you have, depression is my most disabling factor, my mind canít get out of it, but without getting out of it I canít fight for myself, my family or make headway.
« Last Edit: May 13, 2018, 12:36:35 AM by carrie » Logged
roger
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« Reply #20 on: May 13, 2018, 06:14:23 AM »

Hi Carrie,

I have personal experience of anxiety, panic attacks and periods of feeling very down, but I donít think Iíve ever experienced what could be honestly described as depression. So, Iíve never seriously researched it. But I do know that thereís often a physical reason for it Ė imbalances in the brain, poor digestion, gut flora out of balance, weak message sending in the nervous system, hormonal imbalances, omega 3 deficiency, vit D3 deficiency etc. If you can get these physical possibilities checked, then I think itíd be a good idea to do so.

Do you have any idea WHY youíre experiencing this? Something bad going on in your life? If so, then Iíd work on changing or eliminating those things. If thatís not possible, then Iíd think the need is to change your personal response to them. A phylasophical approach to whatís going on in your life can be very useful.

I wish I could offer you something more constructive. But I can offer you a big   hug. I hope that helps if only a little bit!
« Last Edit: May 13, 2018, 06:57:23 AM by roger » Logged

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« Reply #21 on: October 11, 2018, 12:15:14 PM »

Hi Roger,

Just wandered in to have a read. I agree with you about the 'label', it is meaningless when you put it that way but it is useful for e.g. claiming benefits and to explain to family, friends why you are unable to do certain things. As someone on here says, it's good to take each day as it comes and that is what I try to do. Regarding depression: this is something I have suffered from throughout my life but it has always been when I was not acknowledging when something was 'out of balance' in my life, e.g. problems with a job or a relationship. I have had numerous counsellors over the years, some have helped and some haven't. What has helped me is finding a spiritual dimension in my lfe. I suppose I'm basically a Buddhist but am open to other paths. My Buddhist based self-help books have helped me more than any counsellor I have seen!! I agree with you about us being 'out of balance' and that's why I'm glad to see that the medical profession is finally recognising the value of meditation and mindfulness. My son,who has had depression himself, told me about a talk online by a young man who talked about depression and addiction. After I watched it I texted my son and said, he is saying exactly what the Buddhists have said for 2,500 years!!

Sorry, I've gone off on a tangent here!! I don't like any labels. Yes, they can be useful but we are all much more than what can be conveyed by a 'label'.
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roger
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« Reply #22 on: October 11, 2018, 12:26:56 PM »

Hi Anne, thanks for posting.

I agree that the label can be useful as an explanation tool, but I believe that when we start using it ourselves, we tend to become victims, and why should we become victims to what is, after all, a meaningless diagnosis.

Spirituality - oh yes, whichever of the many paths you choose spirituality can be tremendously helpful in so many ways. That's why I posted a short thread on it on this board. 
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« Reply #23 on: October 28, 2018, 05:51:22 PM »

Hi Anne
I'm not a Buddhist as such but I certainly like the teachings. I used to read a lot about it but have recently picked it up again because the teachings help with happiness. They teach how to not let yourself be affected by negative persons and accepting their faults, which in turn can help free yourself from negative emotions such as anger and upset. And these are definitely helpful 😊

Kerry
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