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The Subverting of the ME/CFS Mind

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The Subverting of the ME/CFS Mind
by Jody Smith


Of all the things ME/CFS is responsible for causing in our brains, this may be one of the biggest. Before I was lambasted by ME/CFS, I was an idealistic and trusting sort, loyal to a fault. I tried to see the best in people, tried to give the benefit of the doubt.

My soft malleable center has been pretty well kicked out of me over these many years of sickness. Along with the illness, there came a new world view, if you will. Because as the sickness settled in for a long stay, the people in my life gradually disappeared out the back door, never to return. And the Canadian government that prides itself on its humane safety net has let me down at every turn.

The fact that I am one among countless chronically ill people in my country, and the fact that there are countless more around the globe equally abandoned by their governments, only entrenches my shift from trust to cynicism.

When you know that your government will do nothing for you, and when you know that many of the people you knew don't care whether you eat or starve, whether you have a roof over your head or you don't ... These pellets of hard truth left some pretty serious dents in my psyche as I was bombarded with them for years.

Even if I were to regain my health completely one day, with an income big enough and dependable enough to protect me from panic and sleepless nights, I am irrevocably changed. I will never see things the same again. And I don't want to.

My son Jesse was a lot like me before he became ill at age 16. For the first few years of his illness, basic survival was predominantly his focus ... if focus is a word you can use in connection with someone severely ill with ME/CFS.

As his health improved somewhat, and his brain started working again somewhat, he also began to take a new and unpleasant look around. He also did not much like what he was seeing.

Way to go, powers that be. You have allowed thousands upon thousands of loyal citizens to see beyond your public relations, you have let it slip that they have no value to you. And they'll never offer up their unquestioning loyalty again. Not to you.

It's a common story, unfortunately. Solid citizen gets sick, no longer can carry their own weight, no longer can meet their financial obligations. The assumption for many people — and I was one of them — is that there is some type of intervention in place to keep them from plummeting to destruction.

But the safety net of welfare or disability pensions wasn't there for me, or my family. And as the past connections in my life disappeared, and I was no longer able to see or talk to or work with old friends and family ... well, there's hardly anybody to even witness the decline that follows.

The loneliness can be excruciating, and I am saying this as a person with family members living with me. I can't imagine what it's like for those who must live alone. The realization of being entirely dispensable and not worthy of concern, or taking a look in on, causes a shrinking effect within and there is no one there to counteract it.

So when you don't have enough money to pay your bills or buy your food, there is also no one there to be horrified for you, to be outraged or to sound an alarm on your behalf. If all you can do is drape yourself over your bed unable to lift a hand, then exactly nothing is going to happen. Period.

And the slow, inexorable, devastating ruinous cascade is set in motion. You cannot protect yourself and nobody is there to notice or to do it for you.

Nobody knows that you have lost so much weight you've now developed new medical problems. Nobody knows you can't sleep and that this insomnia is heightened by an exquisite terror of what tomorrow will bring and how you will be able to survive it.

Neighbors may be passing by your house every day, going about their own business, unaware of or uninterested in the fact that you are losing the battle for survival.

You are unable to call out to them and after a while you may begin to believe what everything around you is shoving in your face — that you really don't have a right to the time, attention and ministrations of other busy normal people anyway. You have no currency with this world.

Our daily touch stones are fury and terror. Time does not make them easier to swallow. This is a slice of life that will change you from the marrow on out.

I have been very lucky. I have had some people clamber over the barriers to come get me. It's still been unbelievably hard but it seems that the worst of the worst is behind me.

But there are so many who are sick with ME/CFS that are still bound and gagged in this twilight horror of a life. And they are very often without help of any kind from the people around them who could make a difference if they gave it any thought.

These fragile ones are often without assistance from the government that pretends to value its citizens and yet kicks its most vulnerable and helpless squarely in the teeth every day with no hope for anything better in the future.

Good work, governments of nations, if your goal was to create people who distrust you. They are multiplying daily, perhaps one day you will even actually see them.



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I too had tears come to my eyes from reading this. Not for myself, as I am a coper, and for a long time had no idea that the injustice that was happening to me was happening to so many other people. That was when I really started getting angry. Like Anabel I am OK with solitude, but I know that many people find it difficult, and are not as tough and independent as me. I am more angry for them than for myself, although I have been to hell and back a few times with this illness. At least I came back, and I know that not everyone has.

Having had no love during childhood, and been denigrated and blamed and belittled and bullied by those who had power over me, I became very solitary, self-sufficient and cynical from an early age. I was/am used to people having a negative opinion of me. Whilst that is sad, and has damaged me emotionally, it has also probably helped me to survive this illness. I started avoiding my parents before I became ill, so that was no loss. It would be nice to be able to make some new friends, but I don't have the energy to spare. One day, I promise myself. My best local friend now lives too far away to see her often. Another good friend from the past lives further away still and we have almost lost touch. I've made a couple of friends online but they also live a long way away. But I know they are there at the end of an email if I need them! That's no use for practical help, of course. I have a few other local friends, but don't feel very close to them or have much in common with them. It may sound bad, but I just keep in touch with them as they are better than no friends at all!

Like PNR2008, I have long been one to seek solutions, and I still am. With this illness there have been times when I thought there were no solutions, but not now, and thanks to places like this I am optimistic that we will defeat this thing.

I lived in poverty for 17 years, like others being constantly worried about paying bills, and unable to keep warm in winter (and that is putting it very mildly!). People have said things like "How can you cope with no heating?" I point out that the alternatives are worse: not coping, and dying from hypothermia, or having the heating on and getting into even more debt than I was already. So I coped because I had to. What else do you do?

I have been counting the years to when I would start receiving pensions, and have been angry at being forced to wish the years away rather than enjoying them. I have stayed as positive as I can, and finding enjoyment from simple pleasures, and I know I am much luckier than most with this illness, and luckier than people facing famine or war.

I am constantly frustrated at not being able to work as much as I need to, and not being able to develop a new less-strenuous business so that I can dump the current one which exhausts me. I've been trying to develop the new one since 2010 when a serious exacerbation made me realise that I couldn't cope with the strenuous one any more. But things keep getting in the way. This year it has been tinnitus, preventing me from working out the best settings for my audio recorder to record natural sounds.

But no doubt a lot of people just assume that I am sitting at home all day watching TV, rather than working from home, and that I have no motivation. I have an enormous amount of motivation!

Now things are easier at last with some small pensions. I worry for the younger ones, and hope fervently that things change before their lives become unbearable.



Me Sci- What a beautiful written Post. How great that you are still inventing and still viable. These are wonderful traits to have. What type of treatment regimen are you on now? You can Personal message me if you want.

A lot of very talented writers on this Post.

San Diego #1

San Diego #1
 
How can I feel so far from those that surround me and so close to people here? How can people who have known me for 30 yrs shun me and when chanced upon show fear in their eyes?

Thanks Jody for you are elequently talking of the place that I find myself; memories of a previous life are gone, slipped through my fingers no matter how hard I tried to hold on. As cognitive function crumbled( HAL comes to mind) and I lost memory, judgement and even facial recognition, I lost myself.

After 8 yrs I am back and I resonate with what has been written; I fought everyone and tried everything to halt the slide, as I sank lower if it wasn't nailed down over the side it went. The lessons I learned were ones I wish I could unlearn for they shaped the new me. Likemost of us ,the world I thought I knew just folded and down I went.

My Identity had disolved and over the last few years as I got stronger I needed to build a new one. Like a surviver of hurricane or earthquake I sat dazed in the ruins, now and then you recognise something but mostly it is damaged beyond repair.

I sometimes say that 'I turned to the dark side, you do not know the power of the dark side' and it's only part in jest. I became so angry that fury would burn through me and I learned to use this, it is energy like any other. At first it would leave me drained but now I use it more skilfully.

There came a time when enough cognitive function had returned and my memories started to
flash up as vivid snapshots devoid of context or emotional attachment. It was like old pictures that contained someone who looked like me but wasn't; and they started coming faster but I had nowhere for them to go, no hooks to hang them on. I was being deluged in someone elses memories.

I found a therapist and constructed a system to manage them and the pace slowed and now it is ok. I am me and I have memories of a time before, and bit by bit more comes back to reconstruct the years but I look at the things this person did, the way he saw the world and I cannot understand him. You don't have to have ME to feel this way, but it helps.

I am not recovered but I have passed through a stage of this illness, even though I struggle with pain and mobility and Stuff I am beginning to grow into who I now am.

I have supported my daughter through 5 yrs of 'Glandular fever' and now have to supervise a work collegue with ME. I tell people that I don't 'do' sympathy but I practice compassion. I have to look after myself but I see the way my collegue is treated, how compassion fatigue is so quick to set in and how he slides into a non-person category. He describes the Drs visits and I 'know', like watching a car crash in slow motion, the disembling GP, the poorly educated OP's in thrall to the psychocharlatanism so beloved of the UK.

I always had a naive optomism thinking that I would recover if I could find the way but I didn't have the anger to say 'I'll be back' but I would just not stop and now filled with righteous anger when I step into the consulting room I feel like asking 'are you feeling lucky, .... ... ... ....'

I often write a post then re-read it and scrub it because though it says what I felt it seems indulgent or some such; regaining my voice my be the toughest yet.


GREAT POST-TEARFULLY AND HOPEFUL IN READING IT!!!!!

SAN DIEGO#1
 
Me Sci- What a beautiful written Post. How great that you are still inventing and still viable. These are wonderful traits to have. What type of treatment regimen are you on now? You can Personal message me if you want.

A lot of very talented writers on this Post.

San Diego #1

San Diego #1

Thank for the compliments! :redface:

I'm on a leaky gut diet and supplements, and pacing as stringently as I can when life doesn't get in the way!
 
Thank for the compliments! :redface:

I'm on a leaky gut diet and supplements, and pacing as stringently as I can when life doesn't get in the way!

MeSci- The Pacing is the hardest for me-as I like to finish what I start. Not possible anymore -or I am in beds for days.

What type of diet for Leaky Gut? I am on Gluten free and no friend foods. Sometmes works sometimes not. Probiotic VSL#3 6 a day.

Enjoy your comments.

San Diego #1
 
Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy - the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.
 
I'm just too tired right now to expound but spot on girlfriend! That one part about hearing the neighbors go about their daily routine and they dont seem to care. I hvae sahred vegetables from my garden when I use to be able to have one. But no one seems to give a rats behind if Im alive. Ive been in this neighborhood 24 years. Im in the coutry to the south of you and my eyes have also been open never to see the same again. Stunning the people who claim to be friends and cared about you....I guess that only applies if you are well. Yes it is so hard, we get tired of talking about it but we are so isolated when we do get around people just feel my social skills have atrophied also. Thank you for writing this, I have been sharing some of my frustrations and anger in threads lately, I too use to be more forgiving and compassionate but how being unwell changes a person and those around them is stunningly sad. I'm glad this will be here on PR for posterity.
 
Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy - the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.

Jeff- no one expects any guarantees- however, I do think we should at least expect the Medical community to
acknowledge WE ARE SICK !!! I am to the point that I don't even tell them I have CFID as they quit asking questions
and have actually after 10min say " I can't do anything for you". Doesn't matter what part of the body you are having a problem with.

I also know as I do Animal Rescue- there are some wonderful, caring people out there. Even if you do one nice unexpected thing for them-it always comes back to you in a good way.!!!! I have actually started writing HERO letters to people from my past that have been heros to me. Even from when I was a child. You would not believe how that touches someone. They mattered-so I matter.!!!!!
Stay Well.

San Diego #1
 
Jeff- no one expects any guarantees- however, I do think we should at least expect the Medical community to
acknowledge WE ARE SICK !!! I am to the point that I don't even tell them I have CFID as they quit asking questions
and have actually after 10min say " I can't do anything for you". Doesn't matter what part of the body you are having a problem with.

I also know as I do Animal Rescue- there are some wonderful, caring people out there. Even if you do one nice unexpected thing for them-it always comes back to you in a good way.!!!! I have actually started writing HERO letters to people from my past that have been heros to me. Even from when I was a child. You would not believe how that touches someone. They mattered-so I matter.!!!!!
Stay Well.

San Diego #1
 
How can I feel so far from those that surround me and so close to people here? How can people who have known me for 30 yrs shun me and when chanced upon show fear in their eyes?

Thanks Jody for you are elequently talking of the place that I find myself; memories of a previous life are gone, slipped through my fingers no matter how hard I tried to hold on. As cognitive function crumbled( HAL comes to mind) and I lost memory, judgement and even facial recognition, I lost myself.

After 8 yrs I am back and I resonate with what has been written; I fought everyone and tried everything to halt the slide, as I sank lower if it wasn't nailed down over the side it went. The lessons I learned were ones I wish I could unlearn for they shaped the new me. Likemost of us ,the world I thought I knew just folded and down I went.

My Identity had disolved and over the last few years as I got stronger I needed to build a new one. Like a surviver of hurricane or earthquake I sat dazed in the ruins, now and then you recognise something but mostly it is damaged beyond repair.

I sometimes say that 'I turned to the dark side, you do not know the power of the dark side' and it's only part in jest. I became so angry that fury would burn through me and I learned to use this, it is energy like any other. At first it would leave me drained but now I use it more skilfully.

There came a time when enough cognitive function had returned and my memories started to
flash up as vivid snapshots devoid of context or emotional attachment. It was like old pictures that contained someone who looked like me but wasn't; and they started coming faster but I had nowhere for them to go, no hooks to hang them on. I was being deluged in someone elses memories.

I found a therapist and constructed a system to manage them and the pace slowed and now it is ok. I am me and I have memories of a time before, and bit by bit more comes back to reconstruct the years but I look at the things this person did, the way he saw the world and I cannot understand him. You don't have to have ME to feel this way, but it helps.

I am not recovered but I have passed through a stage of this illness, even though I struggle with pain and mobility and Stuff I am beginning to grow into who I now am.

I have supported my daughter through 5 yrs of 'Glandular fever' and now have to supervise a work collegue with ME. I tell people that I don't 'do' sympathy but I practice compassion. I have to look after myself but I see the way my collegue is treated, how compassion fatigue is so quick to set in and how he slides into a non-person category. He describes the Drs visits and I 'know', like watching a car crash in slow motion, the disembling GP, the poorly educated OP's in thrall to the psychocharlatanism so beloved of the UK.

I always had a naive optomism thinking that I would recover if I could find the way but I didn't have the anger to say 'I'll be back' but I would just not stop and now filled with righteous anger when I step into the consulting room I feel like asking 'are you feeling lucky, .... ... ... ....'

I often write a post then re-read it and scrub it because though it says what I felt it seems indulgent or some such; regaining my voice my be the toughest yet.

Me& Cat- I often write a post and forget I wrote it. Read it later and wonder who that person is-sounds familiar!!!

Ha!!!! Think I have already written this but just in case. I could not find Peanut Butter the other day and my husband said (SARCASTIC) are you sure you didn't put in the freezer? I told him NO-THAT IS WHERE I KEEP MY CELL PHONE!!!

LAUGH!!!!

San Diego #1

San Diego #1
 
very well written article. isolation, depression, cynicism, depersonalization, fogginess, apathy, hopelessness, low self esteem, inability to make decisions, and feeling so confused and unsure about anything and everything.....this has been the CFS mind for me. all I can imagine doing if I were to get through this disease, is to recoil further. nothing makes sense to me now, and I cannot relate to anyone.

Daffodil- You are wrong. You just related to me. Start a Journal- even if it is a sentence.
People do care- I care!!!!!

Better Days!!!!

San Diego #1
 
MeSci- The Pacing is the hardest for me-as I like to finish what I start. Not possible anymore -or I am in beds for days.

What type of diet for Leaky Gut? I am on Gluten free and no friend foods. Sometmes works sometimes not. Probiotic VSL#3 6 a day.

Enjoy your comments.

San Diego #1

I am already vegan, so no dairy, but the changes I made for leaky gut were to cut out gluten and reduce sugar and grains.

Supplements are l-glutamine, sodium bicarbonate, omega-3, bone minerals (to replace those apparently lost in urine), alpha-lipoic acid and acetyl-l-carnitine. I can't remember what I started taking them all for except the first two: l-glutamine for healing the gut and sodium bicarbonate for reducing acidity.

Not sure if I have seen you in any of the threads in this section but they will probably interest you:

http://forums.phoenixrising.me/index.php?forums/the-gut-de-meirleir-maes-h2s-leaky-gut.9/

Was 'friend foods' a rather apt Freudian slip for 'fried foods'? :D

I'm not cutting these at all, as I think it's carbs that are the enemy rather than fats. However, I have switched from olive oil to coconut oil as I understand that it is more stable and less likely to produce harmful (oxidised?) breakdown products when heated.
 
I am already vegan, so no dairy, but the changes I made for leaky gut were to cut out gluten and reduce sugar and grains.

Supplements are l-glutamine, sodium bicarbonate, omega-3, bone minerals (to replace those apparently lost in urine), alpha-lipoic acid and acetyl-l-carnitine. I can't remember what I started taking them all for except the first two: l-glutamine for healing the gut and sodium bicarbonate for reducing acidity.

Not sure if I have seen you in any of the threads in this section but they will probably interest you:

http://forums.phoenixrising.me/index.php?forums/the-gut-de-meirleir-maes-h2s-leaky-gut.9/

Was 'friend foods' a rather apt Freudian slip for 'fried foods'? :D

I'm not cutting these at all, as I think it's carbs that are the enemy rather than fats. However, I have switched from olive oil to coconut oil as I understand that it is more stable and less likely to produce harmful (oxidised?) breakdown products when heated.


MeSCI- Yes it was fried foods( you mean you don't understand CFID talk???) Ha. I will go to that website. Interesting about the Olive Oil and Coconut instead. May try that.
Are you using the Krill oil for Omega 3's? I have done well with the VSL#3 for Gut. But also cut out dairy..
When you say sodium bicarbonate-do you just mean baking soda or a capsule supplement?

Best,

San Diego #1
 
MeSCI- Yes it was fried foods( you mean you don't understand CFID talk???) Ha. I will go to that website. Interesting about the Olive Oil and Coconut instead. May try that.
Are you using the Krill oil for Omega 3's? I have done well with the VSL#3 for Gut. But also cut out dairy..
When you say sodium bicarbonate-do you just mean baking soda or a capsule supplement?

Best,

San Diego #1

Krill are animals, so no! I take this vegan omega-3.

Yes, I take what you refer to as baking soda, in water.

Maybe we should continue the discussion on one of the leaky-gut threads as we are going off-topic here!
 
Great article. I think a lot of the attitude comes from the good old Protestant work ethic. As long as you're able to pull your weight, you're all right, but if you can't, then you're lazy. Never mind that the Christian thing to do is take care of the least of your brothers.

At any rate, this is exactly the reason I am volunteering to help Phoenix Rising with various tasks, so they will have the time to get the Community Rising website up and running. We won $10k in the Chase Giving contest last year to do this project. So we have the money, it's just a lack of volunteers that's preventing the project from moving forward.

The Community Rising website/app will connect PWC's with existing resources in their community. So you need a ride to the doc, or you need some groceries or your house cleaned or whatever, you can find it on Community Rising.

If you want to volunteer, contact the moderators and I'm sure they will be overjoyed to have your help.

I'm volunteering to help proofread and edit articles such as the one that Jody just wrote. They ask that you know Wordpress, but I wouldn't let that stand in your way as a deterrent if you have editing skills. Wordpress is easy to learn and I would be happy to walk anyone through it.
 
Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy - the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.

Hi jeffrez. On the surface, this looks like a slightly dismissive post, but I think perhaps you are philosophising, and presenting a cognitive mechanism for coping with adversity? I sometimes feel guilty when I'm struggling emotionally with my situation and at those times I question whether I can't justify my negative emotions because there are people worse off than me. But guilt isn't a healthy or productive emotion, so I dismiss those thoughts, and allow myself to have my naturally-arising emotions, and to process them in my own way, whilst trying to keep some perspective at the most difficult times. So I acknowledge what you've said, and I understand it, but it's too simplistic an approach for my own needs. I suppose each of us on this planet has to find our own way to cope with our lives and our emotions, and this will often change from situation to situation for each person. (I personally find that acknowledging any personal difficulties, and allowing myself to experience any naturally arising negative emotions, without any guilt, allows me to process my emotions and move forwards.)
 
Great article Jody.

Another thing that gets to me is that no one is likely to even notice if I die (I live alone.) That does haunt me a bit and I email a friend every day as a safeguard--if she doesn't get an email she'll call to check.

One thing that helps me deal with my situation is the historical perspective--not on ME/CFS but on life's conditions. Historical novels are an easy way to get a peek at what it was like to be poor or poor and sick in less "enlightened" eras. (and yes, I have time to read! :rolleyes:) I don't think there ever has been much regard for life in any society I am familiar with.

No excuses for what happens today, but I feel less "alone" with the disregard.

Sushi
 
Lots of people go through difficult things in life. Some worse than ME/CFS. No one is exempt from tragedy - the problem comes with thinking life owes us something. Life is what it is, and usually that is shit and suffering, as the Buddha told us. Nothing owed, no guarantees.

Note: just to say that doesn't mean I want to minimize anyone's suffering. I think it sucks, too.

Hi jeffrez. On the surface, this looks like a slightly dismissive post, but I think perhaps you are philosophising, and presenting a cognitive mechanism for coping with adversity? I do sometimes feel guilty when I'm struggling emotionally with my situation, and at those times I think to myself that I can't justify my emotions because there are people worse off than me. But guilt isn't a healthy or productive emotion, so I dismiss those thoughts, and allow myself to have my naturally-arising emotions, and to process them in my own way, whilst trying to keep some perspective at the most difficult times. So I acknowledge what you've said, and I understand it, but it's too simplistic an approach for me. Each of us on this planet has to find our own way to cope with our lives and our emotions, and this will often change from situation to situation for each person. (I personally find that acknowledging any personal difficulties, and allowing myself to experience any naturally arising negative emotions, without any guilt, allows me to process my emotions and move forwards.)
Bob, If you have a secret on how to process emotions, please let me in on it! Mine, I feel I can only withstand them - or not … I can certainly process my thoughts, but how I feel is another story. I believe there was a tad of humor in Jefferz' quote of Buddha, and every now and then, this attitudes helps me; when I crash for the fifth time in a same month, if I let my emotions naturally evolve, if I let them "be" , despair would become all-overwhelming, and in such times resorting to a philosophical commonplace à la " what can you do, life's a bitch" , can be helpful! (at least temporarily).
Agreed, a cognitive defensive mechanism no less, or differently put, dark humor before adversity.
 
One thing that helps me deal with my situation is the historical perspective--not on ME/CFS but on life's conditions.

Thanks Jody for your eloquent article; and thanks to everybody here for your eloquent comments. --- Sushi, I have a hard time reading, but I do watch a lot of PBS specials these days. I too find it helpful to look at things from a historical perspective, and often find myself comparing my current health challenges with some of the difficult adversities people all over the world have lived with seemingly forever, and still do to this day. Makes me realize that nobody escapes a lifetime here without some sort of major challenges along the way, whether physical, mental, emotional, psychological, or more often than not, a combination of them all. --- It seems we're all at times like a child in the wilderness.