Discussion in 'Support Subforum' started by eskimoeskimo, Aug 7, 2020.
How are you doing in other areas of your life?
Badly. Not working, not doing much of anything. Moved back in with my parents. No income. Limited exercise. Terrible sleep schedule.
Not saying those things are good, but please don't say 'work on those things and the pain will lose its purpose.' It's not true. This is what my life looks like after years of enduring this, not the other way around. There are times throughout these 10 years when my life has been active, social, productive, etc. And it didn't make any difference whatsoever to the pain.
I'm sorry to hear that, it sounds really stressful. Life situations definitely impact our wellbeing in a multitude of ways. Gaining back control of the things in your life that you can, ie; sleep schedule, exercise, life/goals planning will impact you positively. Don't let your fear dictate your daily life habits. Use the time instead to reinstall healthy choices so that you are in the drivers seat of your life.
Yep I can relate. Gotta do it for the mental health at least.
I can't do it. I've tried again and again. It doesn't matter how together my life is regarding those things, the pain and depression are as bad and I can't live with it.
I'm afraid I don't believe that
"I can't" is the biggest one to beat of all the symptoms. Acknowledge your hardship but never give up on yourself. "I can't" spreads like a wildfire and can make anything seen through that lens become impossible and difficult. It can make you stop paying attention or trying when you otherwise were able to. Don't let that thought take over your life.
"I can't" is an indicator of a flare up, or that something needs to be responded to.
It's the one thing that keeps me from having a normal life despite random symptoms here and there.
Any moment of relief is worth it
So ask yourself why you believe this and really all things. The truth is that nearly every person on the planet today and since the beginning believed all kinds of things that in reality were false. If that’s hard to hear and accept, why? Why would it be so hard to be wrong?
Nothing in this life has ever happened without someone visualizing that possibility and believing in it. Your life and your mind are not the exception. You are not less than or more than anybody else.
I don't know if how you're feeling is "normal," but I do know that nobody can ever truly understand another person's suffering, regardless of empathy, similar symptoms, etc.
I do know that I feel like shit 24/7, and yeah, it makes acceptance seem nearly impossible. You know those iconic photos of the self-immolating monks? I feel like that's the level of mental strength I'll need to improve my lot.
I also feel like this approach requires faith, and a neverending series of failures is not a solid foundation for faith (hope-disappointment-hope-disappointment-hope-disappointment × 1000... you know the drill).
I was brainstorming on how to break the cycle, and I think I'm going to take a period of time -- say, a month -- and just commit 100% to total acceptance. This isn't to set a time frame on "healing," but in my case, it gives me a feeling of safety to explore possible improvements to my mental health without worrying like I'll be causing myself damage if my body is legitimately injured. Can't develop T-Rex hands in a month from not coddling my hands, I hope.
Anyhoo, sorry if this is meandering. I'll probably take a small break from the forum to focus more on life/what next steps I will take. Good luck, man
This I have great empathy with. Sixteen years after my husband first became ill and the contrast between our lives then and now, in every sphere, is as stark as it is heartbreaking. Sure, we’re still here and still standing, but the loss and the fallout is unbelievable and oftentimes unbearable. Sometimes I feel that my situation is a black hole and that I’m fighting the event horizon. Sometimes I think this belief is complete nonsense. Mostly I vacillate between the two.
I’ve been reading about Vikings lately. I derive some comfort from their belief in Fate. Of course, we cannot know and inhabit this consciousness in its full meaning and glory, but still, I find myself possessed of greater courage when I rest myself there awhile. Here’s a quote from a site I enjoy:
“For the pagan Norse and other Germanic peoples, fate was the main force that determined the course of events in the universe. Much of what happened – from the overarching trajectory of time down to many particular occurrences in the lives of particular people – didn’t happen because of random chance or the consciously chosen intentions of the person who performed a causal action, but instead because it was fated to happen. Almost all beings were subject to fate – even the gods themselves. For all the fearsome power they had, the power of fate was greater still.
The paradigmatic model for this attitude was the way the gods were to approach their own doom at Ragnarok. Rather than mope or curse their fate, they were said to stand and fight until the last.”
I’m not saying you or I or anyone is Fated. I’m simply sharing some emotional driftwood that grants me a reprieve when I feel hopeless, inured to the well-intentioned kindness of others, and so sad I fear my bones will break from the sobbing.
My husband had a terrible accident a few weeks ago. It was due to Parkinson’s. He’d lost motor control (a symptom called Festination) and was running faster than I have ever seen him move. As I chased after him he simply lurched to the ground, hitting the tarmac with his face. By the time I reached him he was unconscious and lying in a pool of blood. I heard an engine and had to leave him to run along the road to stop a van from hitting him.
The day was freezing cold. We were in the middle of nowhere (one of those quaint old villages with old graveyards but no mobile/cell signal). Our gentle walk, the first one ventured as we’d been shielding for months, had turned into a grotesque nightmare.
But people, complete strangers were so kind. They appeared from nowhere, helping us and holding us safe till the ambulance arrived. It was a long and traumatic day. I waited in a hospital car park while a surgeon performed plastic surgery on my handsome boys lips. I had one of his teeth delicately wrapped in a tissue in my purse. Beyond any comprehension, life had escalated in its cruelty.
I’m still living with those aftershocks. My husband is traumatised. His fear is that this will happen again. We have the support of my family (his are shit), a great team of medical professionals and a Red Cross wheelchair because he is terrified of walking in case Festination strikes again. And with good reason. He’s fallen badly once in the front room, and yesterday I caught him before he fell in the bathroom.
How does anyone live with this?
The emotional bruising?
The upcoming dental procedures?
The endless, pointless tweaking of medications?
How the hell can anyone wrap their head around this?
I don’t pen any of this as a league table of who is suffering the most. I trust you know me better than that Tyler. But I share these things because I understand, because it is nigh on impossible to cope and to keep coping. To keep on fucking smiling and being polite when all you want is for it to stop. Just fucking stop.
And it will. One day.
But between now and then?
I fall down. Sometimes such as now, I need to stay down for a time. I can’t face it. My spirit isn’t willing. But I will get up again. And I’ll fight. This girl, who used to be such a gentle and soft soul, finds herself back in the arena. Not a gladiator. Not a Viking. Just a girl in a council flat drowning in tragedy and love and the surety that she’ll stay true to the bitter end.
No illusions. Not anymore.
Simply the sweetness of doing what love would do.
Simpatico Darling. ❤️
Heartbreaking. I'm only in my 20s, and I should be able to take care of myself. Instead everything is so f*cking challenging. School, fears, brain fog/fatigue, random pain. Other people like you actually have real challenges to deal with while I'm somehow just getting in my own way. Yet another reason to break down over yet another person's suffering. I see so many stories about these mysterious diseases like Parkinson's and Alzheimer's and autoimmune and cancer and I wish it could all stop. Why has science fallen so short?! Why?! I'm so afraid of what TMS now could lead to later in life, but wanting to get better becomes yet another trigger. Why do we get more disease when all we want (and need) is health!!!
Even though my skin/nails have literally become thinner because of this, I'm hoping I'm not immunocompromised and I just wish I didn't cause this to myself (or was it all the withdrawal? still don't know what it was). I'm young so it makes no sense, I should be healthy!
Same here except I'm still in college
Who says you should be able to take care of yourself in your 20s? A person has to learn to pressure themselves like that.
Can’t get in your own way. If there’s 2, who are they?
Maybe you’ll die tomorrow. Pretend for a moment. Same questions, but in that context.
I’ve been reading threads here on this forum to see what the trajectory of treatment is for stress illness. As fate would have it, my own son fell ill as a college freshman, and I had a devil of a time persuading him to understand his own nerves to the point that he could function. He has miles to go to normal, but if he has the will to see it through, he’ll win.
I actually just joined this forum today to speak directly to you. I don’t want to get into a 150 email reassurance race with Dr. Schubiner, so I’ll be brief. You have had all the medical imaging known to science, have tried drug treatments, talk therapy, and many other therapies, and still you are stuck, unable to work or function because you have a ruminating suspicion that you’re damaging your neck somehow. Or you substitute a thought that you have damaged your neck irreparably, so there isn’t any hope in living with a mild neck pain, as you describe it. Do I have that correct?
There are countless people here and otherwise scattered that struggle exactly as you do, but they hold their jobs, raise families, travel, and live a full life that they can be proud of. I hope this for you as well as anyone else who can read this. I know what I robbed myself and my family of while I was suffering from my own creation. Once I was sick of holding onto my own story and arguing with those who spelled it out for me clearly, everything changed. You must now choose to live and accept life’s unpredictability, suffering, grief, triumph, loss, all of it — or cower at your imagined doom (nothing at all, in fact) in your parents’ house. Yes, that’s a challenge. I hope you take it on and stop sniveling.
You are a bright person. You have learned to communicate well. But you haven’t learned yet to look back at your own illogic and stop it. Here is an example: Your neck hurts and you are afraid that if you do certain things it will damage it further, yet in 10 YEARS the imagined dragon hasn’t appeared, and you tell yourself it’s because of your seeking shelter away from work, social gatherings, etc. This behavior has, you imagine, saved you from your feared outcome, yet in reality it has ruined your entire reputation and relationships in the process. This is textbook anxiety behavior, and so long as you behave anxiously, you perpetuate anxiety symptoms and suffering. You are afraid of your own thoughts. Not your pain, but what you THINK it might mean or lead to. That’s it. Nothing more to understand.
That’s where my suggestion comes in. Recovery International is still in existence, and I believe you would benefit greatly from participation in a group meeting. There you will meet people whose sufferings will amaze you, as will their determination to achieve a full life despite them. You can download Abraham Low’s works online. I don’t know where you live, but most likely there is a local group or two active near you. Please visit and consider joining.
P.S. Please fight the urge to respond with, “But I’ve already done that.” You haven’t or you wouldn’t be here. You might not be cured, but you’d be a functioning adult. That’s the first step. The rest comes when your life is compelling enough to stop thinking about your body. I wish you the best.
I'm sorry your son is struggling with TMS. Freshman year is hard especially if you're a STEM major, but you can learn new things faster when you discuss with others. Thanks for the advice, I think this a great reminder for all of us, not just @eskimoeskimo (see there, we're not singling you out because we're all doing this challenge together!)
On a slightly different note, I also read in one of Alan Gordon's comments that reassurance seeking is left brained feedback so maybe right brained feedback activates the opposite thinking patterns and behaviors?
Balsa, I don't know. My son's suffering is of his own doing. He embraced comfort over achievement, engrained it as a habit, and wasn't prepared for the fire. Undoing that knot is his burden. I guess I was more able to theorize a few years ago when my reading was more up to date, but I've fallen away from reading about brain science in favor of woodworking. We only have so much time.
I've already corresponded with two people who've read this thread. I was contacted repeatedly over at tmshelp and corresponded with folks there for a long time. Too much time, in my estimation. There will always be new patients who fall into suffering and then make things worse by not getting accurate information about what is happening and why. Rogue Wave, miffybunny, Dorado, perhaps others are here and can carry on supporting you on your journey back to normal functioning. Indeed, you are all facing the challenge together, but in fact most of you are going about it incorrectly. The time spent on this or other forums like it is in reverse proportion to your goal, which is living a life free of malingering. Everyone suffering from stress illness, anxiety disorder, functional disorder, AOS, TMS, or any other label that fits can get better. The question truly is whether you will. Yes or no? It's simple. Either you will mind the advice given you (you are healthy, now go live your life) or you will make room for your doubts, make excuses, create limitations on your activity level, hide from social interactions in which you feel unworthy or uncomfortable, on and on. I know this because I DID all these things and much worse for months and months. Even now I catch myself gnawing some bone that bothers me and have to pull myself back and go do something productive. Laundry is one I hate, so I seek it out. It's good practice.
@Hillbilly I know you aren’t sticking around too long, but I always hoped for the opportunity to properly thank you. Your postings proved to be an invaluable tool in my recovery, and I am forever in debt. I’ve also used them to help other people recover, so we all thank you, sincerely!
Whoops! I got a little nerdy there By "right-brained feedback" I just meant creative things in general. Street smarts for the win.
Interesting, I find laundry to be pretty straightforward and head-clearing.
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