The Mighty: How My Life Has Changed Since I Developed ME/CFS

Skycloud

Skycloud

Senior Member (Voting Rights)
A short piece by Lisa Alioto about her ME experience

When I was me…

I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day.

When I was me…

I worked out. Sweaty, hardcore workouts that made you feel like you were going to collapse but brought a huge sense of success when completed.

When I was me…

I had a ton of friends. We hiked, went out, had drinks, danced and we closed the bar down on occasion.

When I was me…

I shopped for fun new clothes and new, but not needed, boots. And oh so many scented candles!

When I was me…

I sought out crazy adventures. Ones that scared me a little and thrilled me a lot.

Now it’s all about ME… myalgic encephalomyelitis, a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
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For the full article

https://uk.news.yahoo.com/life-changed-since-developed-cfs-224720668.html
 
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Well, I enjoyed this article right up until the bit about how she views the new individual that she has become since developing ME as a "gift".

I have an acceptance of my illness and the way that I now have to live my life, but I can't say that I have uncovered any hidden depths within myself as a result of becoming sick. I am still the same person. The "gift" is that, in spite of it all, I am still here.

ME sucks, there's no "glass half full" about it - that's my personal experience.
 
Revel said:
ME sucks, there's no "glass half full" about it - that's my personal experience.
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asimov_emptyglass.jpg


That's my glass
 
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Agreed Gift is a difficult word and I couldn’t pick up how long she’s been living with ME which may be a factor if like me it is only a few years since diagnosis. Iif you develop more empathy due to the experience of having ME that could be a big change for some people and be seen as a gift.
 
"I am a lawyer, career coach and Myalgic Encephalomyelitis warrior" - Lisa Alioto

. . . and another thing (feeling particularly snarky today, so apologies :grumpy:), I am so over this "warrior" stuff.

Alas, I am unworthy of such a title, I am simply surviving day to day because, for now, it beats the alternative. There's nothing brave or noble about it.
 
JemPD said:
that was my feeling entirely @Revel ..... in my mind it wnet along the lines of "yeah well, tell me that again in 20yrs"
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Actually i was just thinkin that i think i did say similar kinds of thing back in year 2-3 of being ill. Dont think i ever used the word 'gift' but i felt i'd learned a lot about myself & grown alot, and was convinced that - somehow - i would improve over time.
I think it depends a lot on how severe one is & also on the state of one's support system & environment - mine was very much wider/more effective back then. If you are "only" moderately affected & are well supported, one can focus on growth etc, - as well as enduring the rough stuff. But many are basically just enduring & everything they have is used in mere survival, it's a much more unpleasant experience then. And the personal growth aspects get very very old after a decade or 2 of enduring unremitting suffering plus the abuse & prejudice.

I honestly cannot imagine the horror of being very severely affected like say Linda Crowhurst/Whitney Dafoe (i know we have members here who are that bad i just using her as an example as their experiences are in the public domain). It's an act of extreme endurance, courage & indescribable bravery for them to exist through every minute, let alone hour or year, or decade. That is no gift.

I know the author wasn't suggesting it was, but sometimes i do wish authors of pieces like this would stress that they are mildly enough affected to enable ME/CFS to be seen/experienced as a gift. - given the degree of ignorance & prejudice out there.
 
NelliePledge said:
Agreed Gift is a difficult word and I couldn’t pick up how long she’s been living with ME which may be a factor if like me it is only a few years since diagnosis. Iif you develop more empathy due to the experience of having ME that could be a big change for some people and be seen as a gift.
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I was developing more empathy before I had ME, doing volunteer work teaching homeless teenagers once a week. I had to give it up and lie on the sofa with a headache instead. People who talk about the wonderful benefits of insight or whatever they've gained through illness never seem to compare it to what would have happened if they had remained healthy. I suppose if they assume their healthy selves would have plodded on determined to remain ignorant about everything going on around them they may have a point, but it's not much of a point. My life was a gift before I got ME. It still is. But it was a bigger gift before I got ill. I really don't buy this silver lining shit. Especially not when I've got a fucking headache. Excuse me.
 
The whole ‘battle/warrior’ thing really gets my goat. The notion that you have to be fighting in order to deserve sympathy or support.
I’ve accepted I’m ill. I’m not fighting it - that’s a waste of precious energy. I don’t see myself as a survivor or a warrior or brave or a victim etc etc.
I’m just me, and part of that is now that I’m ill. Would I choose not to be? Hell yes.

I’m no less or more deserving. I don’t have to bungee-jump or abseil or do a sponsored walk to be worthy.

I salute everyone who lives with any kind of pain or illness. Just making it though each moment is to be respected. And I also respect the right of those who say they have had enough.

The only thing I can do is be true to myself, and try to be kind to others.
 
While it may not feel like a gift for you (it doesn't for me), I'm not sure we can criticise someone for sharing their experience of illness. This is how people gain a greater understanding of the various nuances of chronic illness. The fact is, our experiences are often similar but sometimes the way in which we interpret them is very different, as evidenced by this thread.
 
I'm not sure anyone is criticizing the author directly @Dr Carrot. I agree she has her experience, which may be different to mine and is fully entitled to express her that.

As you say, I think articles like this are useful to bring out the nuances of being chronically ill, but so are the conversations we have about them. When you publish something then I think one can expect others to have an opinion about what was said.

However, I also wonder if stories that didn't have a little feel good twist would ever see the light of day. It seems to me there is a perception that's what the public want. For me that little lift to the tale belies the relentless day in and day out, decade in and decade out with declining health and no support.

I once felt I had become a stronger person for having endured a couple of years of this condition. 2 decades on and my health deteriorating I wonder what's the point of being a stronger person when it doesn't make a blind bit of difference?

If there was an end in sight and my experience then led me to go on and do wonderful things for those less fortunate or privileged that would be something. Then I might feel something good had become of it.

I hope this post doesn't come across as being entirely directed at you Dr Carrot. Part of it was simply inspired by your thoughts. Also, I am definitely feeling naffed off as I've been told I have to discontinue some medication that made a big difference to the quality of my life for no good reason that I can see. So what was fairly basic healthcare to start with has now become worse & any perceived silver lining just looks like a trick of the light.
 
I find Lisa's article quite poignant and note that she writes about evolving, and my sense is that is what will happen for as long as she is able to write and get published, so for now, a couple of years in to having ME, she finds hidden depths she didn't know she had by facing challenges she never expected she would have to face and she decides to give this new self kudos and at the same time, acknowledges the importance of the support she's received so far (I think she knows that can wane over the years) and gives a shout to the family, friends, and fellow people with ME (I know she chooses 'ME warrior' but it doesn't grate on me in the context of this article). "You make the incredibly hard easier each day you are in my life."

It may be that Lisa's writing evolves into covering the issues around why there are no medical treatments available for ME. I sincerely hope there will be sufficient progress by the time her illness progression reaches that stage, though I know it will be too late for some of us.
 
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Invisible Woman said:
However, I also wonder if stories that didn't have a little feel good twist would ever see the light of day. It seems to me there is a perception that's what the public want. For me that little lift to the tale belies the relentless day in and day out, decade in and decade out with declining health and no support.

I once felt I had become a stronger person for having endured a couple of years of this condition. 2 decades on and my health deteriorating I wonder what's the point of being a stronger person when it doesn't make a blind bit of difference?

If there was an end in sight and my experience then led me to go on and do wonderful things for those less fortunate or privileged that would be something. Then I might feel something good had become of it.
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I agree! I often have this discussion with friends. Yes, I now have extraordinary resilience, insight into how being very unwell for a long time feels, more empathy, more appreciation for the small things...but to some extent all of this is useless to me unless I am healthy again (or mildly affected enough to participate in normal activities) because I can never put these skills into practice.
 
I am not being critical of the author's experience of ME, this is her journey, albeit a relatively new one.

In contrast, I have been sick with ME for exactly the same number of years as the author had been participating in all that life has to offer those blessed with good health. All of those "When I was me . . ." moments that she refers to, I have never seen. So forgive me if I sound jaded when someone attempts to attach a positive message to an illness that has overshadowed my life since childhood.

The article put me in mind of Toni Bernhard's "How to be sick", also written from the perspective of someone who had decades in which to experience a career, a social life, travel, etc, prior to becoming ill. Now the authors are navigating their way through a new world, whilst reflecting on their old one . . . but I have only ever known one world.

"It’s like meeting yourself for the first time when ME strikes"

I cannot imagine reaching middle age, as the author had, and not having developed some awareness of self. If it takes being stopped in one's tracks by a serious chronic illness to find out what you're made of, that is some "wakeup call".

 
@Revel I cant imagine how hard it must be to have never known a time in your life of being well.
Revel said:
"It’s like meeting yourself for the first time when ME strikes"

I cannot imagine reaching middle age, as the author had, and not having developed some awareness of self. If it takes being stopped in one's tracks by a serious chronic illness to find out what you're made of, that is some "wakeup call".
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But in the context of the sentences before & after that one, I interpreted her to mean that herself with ME was so staggeringly different than the herself that she'd thus far known, that it was like meeting a completely different person. Rather than her saying she didnt really know herself until she became ill.
"But it’s not the me I’ve known, grown and loved for 45 years. It’s like meeting yourself for the first time when ME strikes. You have to learn what this stranger can and can’t do."
 
Fair enough, @JemPD, I totally see your point of view, and you're probably correct in your interpretation.

Perhaps I got too hung up on the author's use of the word "evolve". The onset of ME caused the author to "evolve" in ways that she could not previously have imagined. To "evolve into" is usually seen as a change for the better, a positive, as opposed to "devolve into". Since the author has become physically unwell (surely a negative state), I took it that she meant that she had evolved from a mental perspective, finding character traits in herself that she had previously been unaware of.
 
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