How do you avoid getting traumatised by your illness?

[space8]

Being chronically ill is the single most traumatising event that has happened in my life and I've been through quite a lot (most of it due to the illnesses themselves, but nevertheless). I'm genuinely curious how people aren't completely traumatised by this? Or is everyone but there are more pressing matters to take care of? I just never see it being discussed!

My ME/CFS has even improved quite a bit over the years so I can work part time etc. but I feel like chronic illness has completely wrecked me. Right now I'm fine, things are plodding along, but I'm traumatised in any case because suffering with difficult to understand chronic illnesses has been such a living nightmare. You lose relationships, ambitions, drive, self-respect, the strength to stand up in the morning. You get to deal with disbelief in health care and from others. You're forced to fend for yourself when you're even too fatigued to cook a meal most of the days. You can't form relationships very easily as other people often don't understand your struggles, and even if they do you don't have any energy to hang out and do fun things in any case. Any creative projects go out the window as you have so much brain fog that you can't think straight. You can't advance in your career or even get a career to begin with. Life turns into a bleak, muddy endless stream of: what the heck? as you're seeing other people advance in their life; getting children; partners; traveling; working.

You can't even begin to climb Maslow's hierarchy of needs as you're stuck on the very bottom trying to achieve some sort of homeostasis; never getting there.

Yes, there are ways of making life with chronic illness work. I could never do it though, which is why I used the little energy I had to get to a point in which I could receive some sort of working treatment, and I did in the end, and managed to get better, only to realise that I'm kind of broken from being chronically ill from my early teenage years. And there were never any guarantees that the treatment would work so I could just as well be as ill today as I was then (which is nightmarish to think about)! And, as I fought so hard for my health I never expected coming out of it almost as broken as I was when I was at the height of my illness.

Anyone else? Or how on earth do you avoid getting traumatised from this?

 

[Rufous McKinney]

Anyone else? Or how on earth do you avoid getting traumatised from this?

Well, yes its at times a lifetime of- making adjustments that seem unfair. Its resenting other people who are out constantly with a bucket list. Or its the death of RBG, as if any of us would work until we are in our late 80s...ignoring our health issues just FIGHTING ON...that which is so admired in Western Cultures.

today we are all to admire a new famous COVID patient who claims- they are fine. How does that make those of us who have chronic illness feel? We are never fine. It is never fair.

Left with screaming, or crying, or flailing- we have to create a Separate Reality. We have to construct our own prop system, to hold ourselves up in the face of this continuous onslaught. And you use whatever you can find to - support yourself internally.

Does it help to know that those who suffer- can feel the closet to spirit? Sometimes that helps. Or one now has the time to look for spirit, in many places..that others are too busy to even notice.

Considering that most lives are spent accumulating, to feel ok inside...and then, as they say- at the end, the Monopoly game is done, the houses and hotels are no more. You don't own Park Avenue.

In my case, it all burnt up. The whole life time of: identity, things, accumulations, interests, collections, reflections, award winning. Puff. Smoke and ash.

It seems like our lives should be less about- these exterior things that occupy us (occupations)...and more about awakening, or insights, or...being a better Being.

So thats a lifetime project for most of us, under the best of circumstances. With chronic illness, there is a chance to glimpse- something more. Perhaps part of this difficulty, this health struggle- is a giant Gift wrapped with every possible colored bow.

 

[ljimbo423]

I'm genuinely curious how people aren't completely traumatized by this? Or is everyone but there are more pressing matters to take care of? I just never see it being discussed!

I think a lot of people are traumatized by this illness. Especially people that have just recently developed it.

I'm not traumatized by my illness but it does cause a lot of anxiety. Do to my fear of doing too much physically and it causing significant PEM.

I've had this illness a long time so I've been able to adjust to it quite a bit. As I say though, the fear and anxiety of PEM is often quite strong and stressful. The more I think about it, the more the word traumatized seems to fit how I often feel about my illness.

Even though my illness is also fairly mild, the limitations it puts on my life are huge.

Anyone else? Or how on earth do you avoid getting traumatised from this?

I just try to accept what I can do within my energy envelope. Which is WAYYY less than I would like! The anxiety and the "weight" of such a heavy load is often frustrating, demoralizing, makes me feel helpless and very angry.

I refuse to give up trying to improve though. So I guess this hope I hold onto helps to some degree but it doesn't make it easy.

 

[ljimbo423]

It seems like our lives should be less about- these exterior things that occupy us (occupations)...and more about awakening, or insights, or...being a better Being.

So thats a lifetime project for most of us, under the best of circumstances. With chronic illness, there is a chance to glimpse- something more.

I agree. This is where I'm at and have been for a couple of years. Just within the last couple of weeks I've really been diving into changing how I think, feel and just about everything I can, mentally, spiritually and emotionally.

Looking at feelings that I've not wanted to acknowledge for quite a while. It's not easy work but I'm already seeing and feeling improvements. My anxiety is lessening a little and my mind has calmed some.

 

[HABS93]

Never easy to get chronically I'll. Alot tougher then dying. Atleast when you're dying you just gotta get through the pain and into the light. Chronically I'll is like beeing buried alive and there's nothing you can really do.
Now I cope with it easily now compared to when it first happened. Put on the track I'm supposed to die tonight - 50 cent. I listened to that everyday for the first year. Stir up whatever Dopamine is left and find the will to continue on. Only the toughest of people can live through this and you're one of them.

 

[YippeeKi YOW !!]

@space8 , @Rufous McKinney

today we are all to admire a new famous COVID patient who claims- they are fine. How does that make those of us who have chronic illness feel?

Well, in my case it makes me feel hopeful, and grateful for the example of someone who was able, in whatever way, to claw their way out of this sharp-toothed little monstrosity of an illness.

Which brings me to the subject of gratitude, which no on much wants to hear about.

Scientific studies have shown that maintaining a connection to gratitude is almost an absolute guarantee of a better life experience. Not necessarily a better life, which no one who's struggled with this miserly little pick-pocket of an illness would ever think of promising, but a better experience of what's been left to us as a result of ME.

Left with screaming, or crying, or flailing- we have to create a Separate Reality. We have to construct our own prop system, to hold ourselves up in the face of this continuous onslaught. And you use whatever you can find to - support yourself internally.

In my case that was gratitude, and I can hear y'all grinding your teeth and muttering darkly at me, but that's the truth. Well, that's my truth. YMMV.

There's always a period of anger and screaming and crying and flailing at the onset of this crappy little horror show, until, like the 2 year old screaming for mommy, we realize that's not getting us anywhere, and the self-revelation and re-orientation starts.

Considering that most lives are spent accumulating, to feel ok inside...and then, as they say- at the end, the Monopoly game is done, the houses and hotels are no more. You don't own Park Avenue.

Beautifully spoken, Red !!!

And sadly, also true, true, true. We've been given the opportunity to look beyond all that a little bit.

It seems like our lives should be less about- these exterior things that occupy us (occupations)...and more about awakening, or insights, or...being a better Being.

Perhaps part of this difficulty, this health struggle- is a giant Gift wrapped with every possible colored bow.

I've posted about the strange little gifts from this illness in thread after thread here, for over a year and a half, only to often be told politely to shut the flock up. But the truth is that without being flash-frozen into all this, without having lost almost all of my previous life, I NEVER would have taken the time to re-evaluate, recalibrate, reconsider, and rediscover things about myself that I've found that I kinda like, and would never have otherwise known I possessed.

Which isn;t to say that even with all that and gratitude as a side dish, I don't miss the merrier days when I had what everyone would have called 'A Life'. With friends who valued me and enjoyed my cmpany, and who I valued and enjoyed, and family who loved me, and places to go, things to do, people to see and meet, new things to discover.

So that's all gone, at least for now, but this illness has deepened me, and taught me that yes, you can get thru practically anything of you can just find the way .... your way. The hardest way to find.

And there are still days when nothing helps but a little wallow in the peculiarly healing energies of self-pity, which usually leads to some sort of tiny revelation and a little more self-acceptance, but only if you indulge in very small doses. Otherwise, you wind up living at that new address, and rehashing your many loses over and over and over til they become your only reality and your only future.

And that's a dismal place to live.

Watch what you think, because thoughts become words, and words become actions, and those actions shape our personal world more than I could have ever realized before all this.

As far as Maslow's hierarchy of needs, there's a reason he posited them as a hierarchy: each one of them assumes a different level of importance at different times in our lives.

At this particular time, just hanging on til you can find a way to move up to next level of need is where we all start when we're hit with this savage little bugger of a disease. For now, we have a warm bed that we hope to be able to get some kind of sleep in, a roof over our heads, and enough food to survive.

And we have this forum, filled with research and first hand experience and distracting entertainment when all that research and experience wear you out. And a lot of people who understand what you're going thru, and dont judge.

You'll find something that helps you here, and as my husband DB always reminds me, dont disdain the 10%. It doesn't sound like much, but if you can improve just 10%, that releases 10% more of you to find the next 10%, which will bring you to 20%. And that releases a lttle more of you to get to the next 10%, which will bring you to a full one-third improvement.

I cant tell you how impossible that seemed to me at the start of all this, when I was almost totally bedbound and in pain and miserable beyond words.

Know that good things can be found.

Onward and upward !!!

 

[Rufous McKinney]

I've posted about the strange little gifts from this illness in thread after thread here, for over a year and a half, only to often be told politely to shut the flock up.

Generally, despite appreciating, at times, the Gift that keeps on Giving...I am not inclined to have a big party, invite lots of guests, and insist they bring me more Gifts with Fancy Bows.

this one is- enough.

 

[YippeeKi YOW !!]

I am not inclined to have a big party, invite lots of guests, and insist they bring me more Gifts with Fancy Bows.

Not a requirement ....

The gifts part alone would scare the wheeze outta me, what with still dealing with this one ...

 

[YippeeKi YOW !!]

Hey @2Cor.12:19 , it's good to see you ..... hope all's well with you, or at least things have settled down a bit

 

[2Cor.12:19]

Being chronically ill is the single most traumatising event that has happened in my life and I've been through quite a lot (most of it due to the illnesses themselves, but nevertheless). I'm genuinely curious how people aren't completely traumatised by this? Or is everyone but there are more pressing matters to take care of? I just never see it being discussed!

My ME/CFS has even improved quite a bit over the years so I can work part time etc. but I feel like chronic illness has completely wrecked me. Right now I'm fine, things are plodding along, but I'm traumatised in any case because suffering with difficult to understand chronic illnesses has been such a living nightmare. You lose relationships, ambitions, drive, self-respect, the strength to stand up in the morning. You get to deal with disbelief in health care and from others. You're forced to fend for yourself when you're even too fatigued to cook a meal most of the days. You can't form relationships very easily as other people often don't understand your struggles, and even if they do you don't have any energy to hang out and do fun things in any case. Any creative projects go out the window as you have so much brain fog that you can't think straight. You can't advance in your career or even get a career to begin with. Life turns into a bleak, muddy endless stream of: what the heck? as you're seeing other people advance in their life; getting children; partners; traveling; working.

You can't even begin to climb Maslow's hierarchy of needs as you're stuck on the very bottom trying to achieve some sort of homeostasis; never getting there.

Yes, there are ways of making life with chronic illness work. I could never do it though, which is why I used the little energy I had to get to a point in which I could receive some sort of working treatment, and I did in the end, and managed to get better, only to realise that I'm kind of broken from being chronically ill from my early teenage years. And there were never any guarantees that the treatment would work so I could just as well be as ill today as I was then (which is nightmarish to think about)! And, as I fought so hard for my health I never expected coming out of it almost as broken as I was when I was at the height of my illness.

Anyone else? Or how on earth do you avoid getting traumatised from this?

Hi @space8 - I don't believe it's even possible to avoid being traumatized to some degree this disease. ME/CFS, especially moderate-severe cases, has cost most of us dearly on soooo many levels. Any major life-altering illness is bound to impact anyone in a big way. That said, we're all individuals and handle trauma and life changes differently. We all have to find our best coping strategies, which I think includes having a good support group, such as this one, where we can ask questions, unload, and encourage each other.

For me, attitude is everything. By that, I don't mean whistling in the dark thinking healing is around the corner. But rather, accepting my lot in life, looking on the positive side of things, and being thankful for my blessings.

There really ARE some positives to this, even though some days it sure doesn't seem like it.

For one, I'm almost 70 and have had this for 34 years now. I don't have friends like I did when I was younger. I can't go places and do things, or even host parties like I used to. But the few friends who have stuck with me all these years have proven to be true gems. I'd rather have one true blue life long friend than 50 shallow friends.

Life is full of trouble for most people in the world on one level or another. As my favorite book says, "Man is born for trouble as the sparks fly upward!" Sure, dealing with a misunderstood chronic illness is devastating, but when I take an honest look around at some of the horrific hardships others in the world are facing, it helps me to keep my own troubles in perspective.

Hang in there @space8 - it ain't easy, but try to keep on the sunny side of life.

 

[bensmith]

i'm new but i think i'm starting to go through some trauma. i've prob had a bit before this, but nothgin like this. it feels like i'm slipped into the upside down. very interested to read this thread from others with wisdom.

I love that quete about sparsk 2, wow.

 

[Rufous McKinney]

I love that quete about sparsk 2, wow.

I think an important aspect of all this trauma is the recognition that our state of being is highly variable. Its hard to predict. Thats frustrating.

But this too shall pass- its always shifting and its important to keep that in mind when we are in a place of feeling more down about all this. Sometimes- we maybe just have to allow the lousy day, or week- to happen...and it will pass. Trying to force another state of mind when for whatever reason, its still just not quite ready to happen- thats hard as well.

Which happened to me pretty seriously today. Today is not going according to the little plan in my head. Most of the time, I make the adjustment. But sometimes- we just have to accept that its rather lousy RIGHT NOW and that- later will come.

 

[Mary]

One thing that helps me is to detach from this illness (when I'm able to!) and look at it as a puzzle - what the heck is ME/CFS? And then trying to solve the problem with experimentation. And I have made a bit of progress doing this. My brain loves puzzles. It really has helped that I'm not as bad off, or, rather, am a bit better off, than I was 13 years ago. If I were severely ill and bedbound, I know it would be much harder to adjust to.

Also, I meditate daily when I'm able to (I can't do it when I'm crashed or sick), and so when I just hate hate hate this illness, I just accept that's how I feel, and don't fight it, and amazingly each time I'll find myself awhile later in a different mood or frame of mind. But I know if I had fought how I felt or tried to make myself feel something else, I'd be stuck in a morass.

I don't know if I'm traumatized - if I suddenly regained my health tomorrow (after 22 years), maybe I would have PTSD from this, I really don't know.

 

[Learner1]

Having had stage 3 cancer with 50% survival odds just before I got this gave me a different perspective. All the way along during the cancer, I felt I would be successful, and it never occurred to me to think that I wouldn't be, even when this happened.

I have been yelled at, disbelieved, and fired by doctors, as well as firing a few myself. It is not been easy. I'm also struck by how the cancer world has an enormous amount of resources that they hand out, some for free, where every step in this disease is a lot of work.

One factor that I think has helped, that I feel bad for younger people, is that I have experiences from almost six decades of my life, I know who I am, I've seen a lot, and can put things in perspective. I also had the ability to be able to take the bull by the horns and read all the research, and go to the conferences and talk to the researchers, and begin to put together a picture of what went wrong and why and to apply solutions, which is empowering.

All of my life, when faced with adversity, I've been a survivor. I don't take being beaten down well, when bad things happen, something kicks on, and I'm driven to beat whatever it is. I've met people in the cancer world and the ME/CFS world who aren't like this, and are dragged downhill into the abyss with their disease.

No one is going to fix us. Waiting for answers is going to be a very long wait, given where the research is now, as well as the lack of knowledge in the medical community. Creating our answers from the clues that are out there gives us the best hope. I found that networking with others who are interested in the same things I am, whether on this site or elsewhere, has helped to increase my knowledge, brought more resources to fight this, and help me problem solve to become successful on this journey. I don't pretend that I'm cured, but all of this has greatly helped.

 

[2Cor.12:19]

One more thought. Grief is a natural response to any kind of major loss whether it’s loss of a loved one or our health. In the early years of my illness I suffered severe depression partly due to the illness, and partly due to the realization that my life may never return to what it was. All my plans for the future went out the window.

Even though there are stages of grief that may end in some form of acceptance, the sadness over what has been lost still reappears from time to time. Like those have said here already, these emotions are something we just have learn to roll with and keep reminding ourselves that they will pass.

 

[YippeeKi YOW !!]

Having had stage 3 cancer with 50% survival odds just before I got this gave me a different perspective. All the way along during the cancer, I felt I would be successful, and it never occurred to me to think that I wouldn't be, even when this happened.

Our cases and medical history seem more and more similar, as do our ways of looking at it and dealing with it.

I had a 40% chance of beating my high-end Stage 3, but, like you, I NEVER admitted thoughts of losing that battle. I just battled on knowing that I'd win. When the inevitable set-backs occurred, the chemo induced shingles, the thrush, the infections, I just accepted them as part of the battle, fought thru them, and went on with the main battle.

All of my life, when faced with adversity, I've been a survivor. I don't take being beaten down well, when bad things happen, something kicks on, and I'm driven to beat whatever it is. I've met people in the cancer world and the ME/CFS world who aren't like this, and are dragged downhill into the abyss with their disease.

Like you, I bristle at being beaten down or bullied, especially by cancer. Something kicks in that gives me a slight extra edge of success, and for the life of me, I can't quite define what it is. I just now that if I fight hard enough, and more importantly, smart enough, I'll take the lead, whether or not I'll keep it indefinitely.

No one is going to fix us.

Creating our answers from the clues that are out there gives us the best hope

I so totally agree with you that I could weep from relief at knowing that someone else sees this the same way I do, or at least expresses it the same way that I feel it !!!

Thank you !!!

 

[Mary]

One more thing - many years ago I read that the most stressful type of job wasn't being a firefighter or a police man or a CEO - it was a job in which a person had no control, basically where they were a grunt and had no say in what they did when while doing their job. That's always stuck with me.

So I think the loss of control is one of the things that can be hardest about an illness like ME/CFS. We apparently have so little control over what our bodies do. However, I've had muscle testing as a tool for over 25 years and I think it has helped me keep sane. It has given me a little control. It has helped me make progress when there was no help offered by the medical profession. I use it daily and without it I think I would feel lost and helpless and traumatized. With it, I keep trying new things. And some of them even end up helping me! I can't imagine being without it as a tool.

 

[xebex]

Yes I’m traumatized by this,and yes this illness has given me gifts. And I AM a better person because of it, but I’d rather be the old me, the one who had dreams of teaching her daughter to race mountain bikes and camp in the wilderness. The old me who moved to Canada to live a life of adventure instead of the one who lies on the sofa all day desperate to live a life just always out of reach. Today my daughter and I cried In Each other’s arms for what we have lost. She’s only 6.5. The trauma that is inflicted on her seeing her mum in pain and every so often seeing glimpses of who I am supposed to be only for it to be taken away from her is all just too much some times.

 

[2Cor.12:19]

@xebex Oh, how I feel your pain! My children were 2, 8, and 11 when I got sick. I would look out the window and cry as they drove off with their dad to school plays and sporting events. But you know what? By the time they were all teenagers, I was the ONLY mom left in the neighborhood who was still at home after school. They and their friends would come over and plop on my messy bed and tell me about their day. My son's girlfriend (now his wife of 20+ years) came over everyday even when he wasn't around, just because no one was home for her. When I had enough energy I made cookies for everyone. I wouldn't trade those precious moments for anything now.

My kids are grown, and some of my grandkids are now adults. The most important thing we can give our children is our time and love. It sounds like you've already got that going or you

 

[xebex]

@2Cor.12:19 thank you that is beautiful and it is a gift for sure, it is wonderful that you have been there for your kids and other kids! We chose to homeschool this year for that exact reason, covid kind of forced us into it but then we realized it was helping us make up for lost time. I used to be much iller and she had to go into full time day care a year early, I missed so much of her life. So she’s at home now and we have made up for a lot of it but my function is starting to slip and I’m starting to lose what I had gained in the last year. We are crying today because she may have to go back to school. The hardest thing though is in crash I’m irritable and unpleasant to be around. No kid deserves that.