How do you avoid getting traumatised by your illness?

Mouse girl

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@Mouse girl , @space8

I was in the same boat for several ears. I just couldnt cope with anything but the absolutely necessary, and that took everythig I had, and then some .... it was a trying time, and 40 or 50 other people's future depended on my ability to do the necessary, possibly more if you count ancillary family memebers, who would also have been affected.

It was a miserable time.

I couldn't escape into books, which had always been my favrotie route into another world, because I just kept reading the same paragraph over and over and over again, with no better retention or comprehension the 15th time than the 1st, and that in itself was just too depressing ....

What saved me was burying myslef in, first, good TV, then OK TV, then I moved thru every movie at Blockbuster, and when that closed, everything at Netflix going back to the late 1920's. It wa quite the education.

That escape from reality is part of what saved me.

People may think that trivial, but sometimes when you can't go the "The Only Way Out Is Thru" route, escapism is your best friend.

Find something that takes you out of yourself, whatever that may be. Playing for time is one of the easier weapons we have at our disposal ....
I'm sorry you had such a hard time. Really glad you got through it. I so get ya with movies and tv, I'm all for it. I think it's a shame that so many "teachers" shun that idea or say it's bad. It can be bad for people who are healhty and need to be active but when you are sick and shouldn't use more energy, it's can be healthy.

Yeah, for me, I just don't have the slightest amount of brain space or energy to do much and to try and find movies or shows that don't make me more anxious (that can be hard at times since so many shows are a bit too dark or tense now) helps break the cycle after time. For me, works way better than meditation. I find meditation don't help my anxiety at all. I tend to be very present in life when I'm healthier which is kinda meditative but when my brain is set off by my ill nervous system, watching thoughts just makes it worse. For me, healthy self talk aways works better than meditation but when i get so down and worried, it can be hard to find the kind, loving voice towards myself within. I didn't even learn about kind self talk until just maybe 5 years ago or something. Wish a therapist or someone had suggested it. I mean, our culture is filled with theraputic ideas but i never even heard anyone address that and it's causes.
 
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For me, healthy self talk aways works better than meditation but when i get so down and worried, it can be hard to find the kind, loving voice towards myself within.
I find that on particularly hard days, it's easier to fid things to be grateful for than to try to chuff myself up with positive self-talk, which I find difficult even in the best of times. It frequently feels like I'm hitting myself up with a hard-sell.

But gratitude is easier, and psych studies have shown that it has numerous positive side effects, including a happier outlook and a longer life.

It may not completely change the destination, but, as I've said before in these threads, it makes the journey a lot pleasanter. And I believe that it has the power to positively influence the outcome, in all senses of that word ....
 

Mouse girl

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I find that on particularly hard days, it's easier to fid things to be grateful for than to try to chuff myself up with positive self-talk, which I find difficult even in the best of times. It frequently feels like I'm hitting myself up with a hard-sell.

But gratitude is easier, and psych studies have shown that it has numerous positive side effects, including a happier outlook and a longer life.

It may not completely change the destination, but, as I've said before in these threads, it makes the journey a lot pleasanter. And I believe that it has the power to positively influence the outcome, in all senses of that word ....
Yeah, babe, what ever works. It's interesting to see how different things help at different times and then adjusting.
 
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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?
I don't know if you can completely avoid the trauma aspect tbh, you have to accept that you probably will never be 100%... My mindset that helps me is to just keep fighting until the end, in a way to accept the suffering for what it is. I didn't expect to have to deal with the issues I dealt with for most of my 20's, and it took a long time for me to recognize the limitations I have and to accept the cards, so to speak. This life is just temporary and there is an eternity beyond it. Everyone dies, but I believe the soul lives on. I believe this life is some kind of test and so I have been focusing on the soul and getting right with God, rather than obsessing with my body. Sorry I can't be of more help, this is just my way of dealing with things.
 

Mouse girl

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Just rereading the original post. And I thought, well, you know, it's perfectly natural to have these feelings and thoughts after you are doing better. It happens with most trauma when you are kinda fending for your life so to speak, weather it's illness, or abuse or other very trying times. I've read so many stories and books written by ill people and seems to me, they all fall into a depression or feel some very hard feelings of anger and loss and disblelief once the hardcore threat is over. I've read about people from this site who struggle with that after they find something that helps them. I've read about and met people who had high level cancers where they went through all kinds of treatments and horror and when they had some unexpected good recovery, felt lost, sad, confused and scared. Often when you go through something so bad and you see that let's face it, most people either really don't give a poop or their immature reaction to their own fears of death and losing their health or losing a loved one, makes them behave abhorrently. I've gone through they a few times, and yet, it always feels wrong, like the threat is over and yet, now I feel horrible anxiety and depression, fear, a general scarring. I talked to a therapist and she said this is exactly normal, it's what humans do when they no longer are in survival mode, they suddenly are sort of "allowed" to feel their feelings and it gets emotionally harder. I think you just have to keep working through it in whatever way that works for you. Our culture and movies or stories all sort of pretend this doesn't happen. The narrrative is, something bad happens and when it's over, all is good. But, life isn't like that and since we don't don't know this or others expect us to be happy and singing for joy, we feel even more alone. I know I have felt that way for different traumas.
 

lenora

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Hello Everyone.....Like someone above mentioned, I'm a long-term sufferer of ME, over 35 yrs. to be exact. It was my third diagnosis after two neurological problems, both causing serious damage at the time. But ME became the one that has given me the most trouble. And yes, of course, our lives are forever changed.

In my case, I was used to difficult situations from childhood. The harder things were, the tougher I wanted to become...and did. Fortunately it transferred with this illness. I told no one in my biological family, whether that was a mistake or not I'm still trying to figure out. Let's just say that I wouldn't recommend it.

Again, I've been fortunate in having an understanding husband and daughters who became teens (not so very understanding) and then came back as mature adults dealing with a major problem. I count on all 3 of them today. I understand what you're saying about friends, so many of ours moved at that time, retired, became ill themselves or died...that continues to this day. But the few friends we have are true blue, have educated themselves about all my illnesses and I have a list that is still being added to. No explanations needed.

How did I come out this darkness of despair? Well, I knew I couldn't dwell in "that place" forever...I didn't want to, and I owed it to my family. I became a volunteer for organizations that were just being formed to let people know about my primary illnesses. That took the next 25 yrs. of my life, was rewarding...and depressing. There was nothing, so a newsletter was started, basic info about the illness(es) was sent, we did everything by telephone b/c there was no computer and we soon became proficient in helping people with Workmen's Comp, Medicaid, Disability.

When computers became available we moved to them. Then things exploded, but basic info was still being given by phone. Soon I was inundated with calls from around the world and, sadly, we had nowhere to tell people to go. We did have names in the U.S., but that was it. I was receiving calls at all hours and it didn't matter too much b/c my husband was gone during the week, and I seldom had proper sleep b/c of damage to the sleep center of the brain. Still, in the end I did burn out. It was too much for any one person to cope with, and I was tired.

I had help along the way with many doctors, but especially my neurologist of many years. He was the first to identify an illness missed by the MRI radiologist, then the neurosurgeon identified the second and was certain that I had cancer. My neurologist kept telling me he had seen it many times before and it was never cancerous. Back then it took something like 3 mos. to find out that it was non-cancerous. Above and beyond that was the fact that I wasn't improving at all. The doctors who proved to be the most helpful had either volunteered in Third World Countries or came from them themselves. American doctors had never heard of the condition. In order to help myself, I forced my body out the door and walked about 2 mi/day, and then came home and collapsed on the bed. The very wrong thing to do. But I had been a walker and bike rider before this occurred, so thought it was the best way forward.

Wrong: As I later found out a new technique known as myofascial therapy was the way to go. I was fortunate to live near one of the few clinics doing it in our city. I recently went back to PT (myofascial) and found it to be even more gentle than years before. Meditation was one of the first things I learned, and then I had to deal with both of my daughters having problems. They were my first priority...let's just say that I was going and doing almost all day every day.

I'm not saying that I wouldn't have wanted my old life back during that period. It was just that there was no positive choice for that to happen, so I took the other fork in the road. For me, it was right. All these years later, I continue to deal with plenty of unknowns, lots of unknowns as a matter of fact, but others in my family are healthy and that's enough for me. Having said that, I realize that I was old enough to have married, enjoyed many types of work, had children and had a really great life going. Not one that was easy to give up, but that was taken out of my hands. My heart has a special place for those just starting out.

I developed anxiety and the first go-around I was able to get out of it myself. I followed a certain protocol, but then I developed shingles many years later and there was no way I was able to fight it off. It very quickly ramped up from anxiety to panic disorder in hrs. I also see a counselor as needed, and will continue to do so for the remainder of my life. I know my weak areas and am willing to take responsibility for them. That's the one thing I've always been: Miss Responsibility.

This year alone I've been hospitalized 9 times. I now find out that I have Autoimmune Encephalitis, a not very widely know illness, have serious seizures that can leave me unconscious for 2 days at a time (certainly not good for the brain), have heart disease even though my diet is considered perfect, and I wasn't heavy until I had to go on meds for the encephalitis and my heart. Well, heavier than I would like to be. I now have 5 stents in my heart and one implanted in my carotid artery just last week. I realize there will always be something and I pretend that I wear armor and the arrows just ping off me. It's not the fault of the doctors, my family or even me. It's the way of life for a lot of us. I don't make comparisons with others and I'm thankful for every little thing that drops in my lap.

I've come to realize that money is not where our self-esteem is, it's in what we do for our families, others and how much we can give to help different institutions. I came along at a time when there was no pain relief...and it was rather all-encompassing and quite an extraordinary situation. We finally had gabapentin, but the dosages were very high and affected me mentally...I couldnt' remember anything. But one day, about 3 mos. later I found myself bending over sorting my shoes. My pain had lowered incredibly. To this day I still have pain, but control it as best I can. I'll never be without it...

I can't tell you what will make the difference in your life, but these are the things that made the difference in mine. I had always done volunteer work, mainly with children, but this need was too great to pass up. I'm proud of it; and I'm glad i did it. I was alone a great deal of time, and couldn't expect my family to be my entertainment. My daughters were married and had families of their own, plus they worked, my husband was already on overload, so I had to it for myself...and, of course, that's the best reason for doing anything.

As far as seeing your friends, may I suggest something that I turned to about 2 yrs. ago? Lunches were too long and I couldn't sit for that length of time. I found that everyone loves a back porch (with mosquito screens) that we have. There are plenty of trees and a cross breeze that keeps it cool most of the day. We have flowers everywhere...and birds. So I invite people for lunch, have take-out, my husband brings it out, and we'll have a cup of tea and a small dessert. It's over and we've visited and had a very nice time. I've also done the same just for coffee or tea in the a.m. Afternoon are generally out as I'm too tired by then. My husband also enjoys visiting with them, and they like him, especially when he answers financial questions. So, I'm saying that you don't even have to prepare a meal. Order it, pay for it and have your friend pick it up on the way over. Take turns.

My husband makes delicious coffee even though we're tea drinkers ourselves. A last minute call is always welcome by most friends and some even come in their robes or whatever they happen to be wearing. So invite people, make the time specific and if you can't make coffee, ask them to pick it up and pay them for it.

Tell them you feel best when they don't feel burdened to bring you something, that you want to see them and hear about their families. And that brings me to another point....listen to talk about their families. Yes, it's sad to hear about marriages and births, but do you know what's far sadder? That is not knowing anything about these things. Not asking to see pictures of the wedding or the baby. Get to know the wife, husband or baby...they could be the family you may/may not have on your own. Tell them to bring the baby along & have a few toys or coloring books and stickers handy, along with a popsicle or ice cream in the freezer. Really, we all desire love and acceptance. I wish you both. Yours Lenora.
 
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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!

Anyone else? Or how on earth do you avoid getting traumatised from this?
I like to think I have a high tolerance for some adversity, so for the first 15 years of CFS I just dealt with it. Adjusted my expectations, hid most of my physical challenges or disguised them as other things, saw doctors but with modest expectations, tweaked career goals in order to accommodate my illness, struggled through medical interventions that kept me functioning, etc.

The last five years all that trauma you described fits me - times a thousand. I went from moderate CFS to severe CFS combined with CIRS, MCAS, and whatever other letters. Instead of functioning at 50% which I had learned to deal with, I now function at 5%-10% and I live alone. Lost my career, my relationship, my friends, my financial security, etc. It not only traumatized me, but fundamentally changed my view of myself as a person, my world view, and who I actually am as a person. None of it for the better.

I appreciate others' views, but I am decidedly not a better person for my illness. I probably was for the first 15 years - more patient, more empathetic, more understanding, more appreciative of life's little pleasures. The last five years, however, I'm just angry and miserable. Or watching TV and distracted. Those are the only emotions.
 

bensmith

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This soooooo much. Mild=a choice to see the world differently and an ability to have a good life still. Nothing good comes from severe. Misery.

very sorry lenora : (

glad yall have the porch : )
 

lenora

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Hapl808.....You just sound you're at the end of your rope with dealing with this illness. I'm so very sorry as it must be a terrible place to be.

I reality, I guess that none of us will ever know what causes the decline nor if we'll improve. It must be frustrating beyond belief. What do you have in the way of in-home care? I do hope you've let the correct agencies know, as there is some help out there (and yes, it may be aggravating at times). I have no idea where this past year will leave me, as most days I'm too tired to think of the repercussions.

I can only suggest that you get joy out of the most basic of things to you. Can you read at all? Watch TV or are you just generally aggravated. See, I do know the symptoms. I do hope you're at least getting Meals on Wheels for one decent mean/day. Are you? What about other help. I'm not bullying you, just trying to give you a way to improvement. I'm sure you miss your loved ones, and it's really not good for them not to be in touch with you...somehow. What about sending out a mass e-mail. It's true that people pull away, but then they also mature and learn how to deal with illness, too.

Give them guidance. If they come for lunch, ask them to bring it. You'll supply the drinks. Or, if that's too much, then a coffee in the a.m. when you're feeling perkier (or any time that is).....and again, ask them to bring it. These are things they can do to help and it's you being freer about your illness. I'm sorry it happened to you...to all of us, but it did. How do we go about living in the meantime. Feel better. Yours, Lenora.
 
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I appreciate others' views, but I am decidedly not a better person for my illness. I probably was for the first 15 years - more patient, more empathetic, more understanding, more appreciative of life's little pleasures
The better-person-for-all-this thing comes and goes, and often is hard to hang on to.


I know that when I was mostly vegetative and bedbound, waiting to die and trying to figure out ways to speed that along, I couldn't have conceived of any gifts from this little medieval torture chamber of an illness, and couldn;t for several years afterward until I'd managed to claw my way out of severe and into moderate. And even now, there are days when that's really, really, really hard to cling to, like the frantically repetitive prayer of a drowning man. Person. Whatever.
The last five years, however, I'm just angry and miserable. Or watching TV and distracted. Those are the only emotions.
I'm a big believer in going with the flow and not pretending something that you dont really feel. You have every reason to be angry and miserable. I can;t conceive of what my reaction would be if I were drop-kicked suddenly and without known reason back into The Troubles.


There can't be too many things more devastating, more demoralizing, more fraying of the last fragile threads of hope, than to find yourself back where you fought so hard to get out of.

Keep posting your anger, be as pissy as you need to, be angry, be ungrateful, let it all out here, where we know exactly what you mean, even if we dont; have a cure for it, or even an attenuation.

And on your better days, whenever they may be or how febrile, remember that you did get out of it once before, you managed and controlled it to the best of your ability, and some new, more manageable, level-ground may present itself ....

You're not alone. Not by a long shot :(:grumpy::grumpy: ....

Not that that's particularly helpful :aghhh::aghhh::aghhh: ....