I find it helpful to think of my life with my illnesses and disabilities as in the following article about 'The Spoon Theory':

www.butyoudontlooksick.com/articles/writ...ristine-miserandino/

Thank you Dusty, that is brilliantly put.

Thank you so much for putting The Spoon Theory up. I have struggled so badly the last few weeks with people saying how well I look. I am going to forward it to a few people in the hope it makes them have a better understanding of how I really feel and that looks can be so deceptive.

Hayley

The spoon theory just sums it up

Thank you for that link Dusty...had me in stitches....am going to buy some spoons tomorrow as I only have 4!

On that link there was several comments made to me about m.g. stress related....have I tried to take more exercise.....more vitamins may help...in a book about m.g healthy eating helps...and lastly one 'friends' final dig, well on google it says it 'appears to the sufferer that it weakens the muscles' so it's not really here...just ' appears'....lol
jantoo

Glad you liked the link.

Know what you mean about those really 'helpful' comments, Jantoo - I have fibromyalgia (chronic wide spread severe muscle pain) as well as OMG and my father-in-law seems to think that 'a nice hot bath with lavender oil in it' will cure me!*!

I personally do not like the spoon theory, because it takes away a lot of the control we do have.

Living with MG is not only about choices, but also very much about organizing your life in a way that will enable you to do as much as you can.

When you wake up in the morning you may end up having anywhere between 2-20 spoons for that day. It all depends on how you will plan it.

There are external factors (like a viral infection etc) which are beyond our control. But, we have much more control than we think initially when something seems to have taken away our ability to control our life.

I agree with Palo that for some people it requires planning the number of steps and for others planing the daily jogging, but both will end up having more productive time if they plan correctly. And both will have less sense of loss of control if they don't reach the edge of their abilities.

It is more like the children's song, but backwards-

Love is something, when you give it away,
give it away, you end up having more.
It's just like a magic penny,
keep it and you haven't any,
But, when you give it,
you have so many,
that roll all over the floor.

Rest is something, when you give to your body,
you need less.
It's just like a magic penny you use to cover your overdraft in the bank.
Every time you use one, it covers 10 times more,
So, if you do it wisely, you may even end up having some savings.

With MG we need the help and understanding of others, so we can't just ignore their comments. Most really mean well and feel helpless that they can't do much to help.

At the same time, it is very hard to understand and explain this illness, so quite likely those around us will never fully understand .

That is why we have to be confident in what we think (it helps to have others who think the same to counterbalance those who don't)and state it very clearly and yet respect the opinion of the other person and why he thinks that way.

For instance, when I was recently given an "exercise plan" by a new physician, I said- well, it does make a lot of sense, doesn't it to try and improve your muscle strength and endurance with physical exercise. It took me a long time to understand that for my illness it does the exact opposite.

When that physician said- I have never heard of exercise doing that. I replied-yes, it is a very peculiar illness, but I did discuss you suggestion with my neurologist and he thought that the amount of physical activity I am doing is more than enough. He has been encouraging me to do less not more, and this is so far the only approach that led to gradual improvement instead of worsening.

When one of the people at work said to me- I don't want you to do this, because you should preserve you energy for that. (instead of the- if you were able to do this, why can't you do that? I have heard so many times) I realized that my patience and giving them time to gradually understand eventually worked at least to some extent.

alice wrote:


It is interesting isn't it, that if we cannot agree what MG is, how can we hope to explain it consistently and coherently to others!!

Isn't life about choices and planning, and if you plan you succeed more reliably than if you do not plan and rely on luck or fortune?

To me it is the very essence of a chronic condition that you are robbed of many choices and understanding that is essential to manage around the 'givens' those things are not limiting factors or constraints and no amount of planning will change that. MG makes it very hard to identify those constraints since they can change so easily, but learn we must and do, and the drugs make it more manageable and predictable too.

I think it is more a matter of agreement on metaphors than agreement on what this illness is.

The problem with metaphors is that they sometimes mean different things to different people.

I personally find a penny (which can change its value based on your actions) a better metaphor to use. But, for someone else a spoon and a penny are interchangeable.

I tend to use a lot of metaphors, and I have learned that sometimes it defeats the purpose and just giving a simple explanation is better if your intention is not to amuse people, but to make them better understand.

I wonder whether (the above) is the case as, I may be wrong, but your criticism of The Spoon Theory metaphor appears to be mainly based on what you said about GMG (in the 'Top Tips' thread before this thread was broken away) as follows:

and, from earlier in this thread:



Although I assume that the above is true for you, is it true for others with their GMG? Maybe it isn't true for them or is true for them but hasn't proved to be of much significance in terms of what they personally are able to do in a day (short term) or in the long term...

As you know, I am not considered to have generalized MG; I 'just' have severe 'probable OMG' and so I cannot speak from any personal experience of GMG. However, from reading forum members' postings over the years, I have gathered that pacing themselves and resting to try to recover between tasks and endeavouring to keep some capacity in reserve rather than reaching 'the edge of their abilities' plays an important part in getting the best from their day, but I hadn't gathered that resting gives a kind of 'interest/compound interest' effect. I stand to be corrected by others with GMG if I have inferred wrongly about this, of course, and I obviously leave it up to individuals to take or leave The Spoon Theory that I am responsible for posting up...

The Spoon Theory lady does convey about conserving 'energy', for want of a better word, as she does try to keep a spoon in reserve each day and she talks about slowing down too (which I take to mean pacing) and she tells of how if you push yourself over the edge one day it can affect how much you can do the next day; but it is true to say that she doesn't state that you can effectively gain more spoons to use in a day (or to put in the bank for future use) by means of resting and this may be an important omission in terms of GMG. (As I have said, I leave it up to others to comment on this if they so wish as I don't have GMG.)




My impression is that people often resort to metaphors and analogies after they've tried giving a simple explanation and that simple explanation hasn't for some reason hit home with the intended recipient. I know that I do; it isn't usually my first line of approach when endeavouring to explain things.

And, although obviously having MG is a very serious matter, in my opinion, I think that a quirky - possibly amusing to some - way of trying to explain things - isn't necessarily a bad thing even if one's intention isn't to amuse. It can serve to hold the recipient's attention and make the message more memorable without trivializing, but of course, that said, it doesn't mean that there aren't potentially other and better ways and means of trying to explain things, as the use of analogy or metaphor doesn't appeal/hit home to everyone and, as with many forms of communication, there is always the danger of misunderstanding and innocent misrepresentation, perhaps even more so.

I think its a real problem explaining how we feel, because having read through lots of posts we all feel differently and also cope very differently.

I have learned that I am best to do a bit and what I call 'potter' around than go hell for leather and do too much which in turns is detrimental as it totally wipes me out and takes a lot longer to recover. Also if I do too much I not only become exhausted but ill and my symptoms like droopy eye lid and swallowing become worse, but if I potter I do get 'fatigued' but not to the extreme.

Holding energy in reserve is not something I think about as I wouldn't know the amount there was in reserve - I just stop when I start to have the feelings of fatigue before I over do it.

It does take a long time to know what these limits are but you can judge your own body and the message its telling you. Your own body knows best so listen to it.

I have just read through my own posts over the last year or so and I have changed in many ways.

For one I have learnt to be more accepting and less bitter.

The first lot (well many) were very angry and Ii surprised myself. I was totally devastated by this illness and rebelled against the medicine the side effects, well everything to be honest. But like I have said slowly, very slowly things have improved with regards to the MG - I wish the same could be said for the inflammatary arthritis and fibra, but I have learnt from the MG and now relate my pottering lifestyle to that as well and I now cope better with them as well.

I have now realised though its took a long while that no one is to blame not even me, and I either fight or give in, and fighting seems a better option.

Whatever works for each one of us is right for us and no one can better tell us any different.

The point I was trying to make is that Lupus and MG are very different.

I have seen quite a few patients with Lupus with various levels of severity.
None could easily walk in one direction, but than find him/herself unable to walk the same distance back.
None was able to eat normally, but than be unable to take the next bite.

But, I have heard of this experience from many MG patients and also from neurologists who have experience with this illness.

My fluctuations may be on the extreme side of the spectrum, so for me specifically a bit more or less effort can make the difference between being able to continue my activity at some level to requiring respiratory support. So, possibly I experience this more than others.

I never said that I was a "typical" MG patient and I know that for other patients this may not be as extreme.

But, I also think that possibly some of this is/was due to my inability to fully comprehend the effect of physical exertion on my illness.

One of the reasons for this, is that is not something you see after one or two days but only after weeks or even months.

That is why I used the example of a penny. If you save one penny you don't really notice it, but if you save one penny every day, you eventually have a significant sum.

But, my metaphor may have not been very good either.

I also do not know if this is true for all MG patients, but maybe it is for some.

As to metaphors, they are many times " the easy way out" . But more times than not, the other person doesn't really understand.

There are many ways to preserve energy.

One is to do as much as you can and then stop.
The other is to do less than you can and then stop.
For me and I believe also for other people doing as much as I can was the obvious way of dealing with this illness, and using every productive minute in the best possible way.

The possibility of doing less than I can (when what I could do was already so much less than normal) was not something I considered.

It took me a very long time to understand that doing less than I can, will eventually make me able to do more. For me it was a true paradox.

Maybe others are smarter and reach this level of wisdom much earlier.

Same here! Fibro and MG. how lucky are we?( grin