PTSD and ME

Awhile ago I posted a photo on Twitter of Betty Ford affectionately and adorably hugging her husband, President Gerald Ford. Soon after someone commented, “Drunk?”

My initial reaction was to tell them to fuck off. I wasn’t drunk. I don’t even drink. I can’t, my illness doesn’t allow it. Although sometimes I wish it did. And why do I have to be drunk to post a photo of Betty Ford? Because I’m a liberal and her husband was a Republican president? I was pissed. I wanted to throw something.

I was obviously overreacting. But I wrote back: “Huh? I don’t drink.”

Then the person replied, “She was drunk.”

I found that to be a bit mean and at the very least a big assumption (Betty Ford was an alcoholic, but that doesn’t mean she was drunk in the photo). But I still shook my head at myself. Not because I was agreeing with the person making light of her alcoholism (I actually really like Betty Ford. She was the first First Lady to sleep in the same bed as her husband, talk about her sex Life, and advocate breast cancer awareness after her mastectomy, which saved many women’s lives by urging them to get mammograms).

The reason this Twitter exchange made me shake my head was because of my initial reaction. It was impulsive and a little embarrassing. I was in fight mode from the moment I read the subtweet. But, like Betty Ford’s underlying alcoholism, my reaction had very dark origins that put me in a constant state of fight or flight, emphasis on fight.

As Danny Trejo recently said about life in prison, there’s no anger, you just go straight to rage. Most of the time that’s how life feels to me — I wouldn’t say I get angry, I usually just go straight to a burst of rage. And once I go to that place, it often gets worse. It’s like the rage builds and builds without me even knowing it, and then it explodes through my body in a catastrophic moment. Then, I’m stuck facing the repercussions of a very sick and very angry body that is just waiting to erupt again, waiting for something, anything — a fly to buzz nearby, the wind to blow a door shut — so it can continue to rage.

And I suppose I’m not as innocent as I make myself out to be. Sometimes I consciously allow myself to go down this path of rage. I mean, let’s be honest, there are more arguments on social media these days than can possibly be won. Yet I still get sucked in… What’s that? You say Jeff Sessions fired Andrew McCabe because it was recommended by someone from the Obama administration? Ah, go fuck yourself. Or at least that’s my initial reaction. Then, after a brief pause, I remember: Oh, right, I really don’t give a shit about any of this. I don’t care who Trump fired this week or how his supporters justify it. But my brain has become wired to dive head first into the fight. Any fight.

Even if someone says something obtuse, not necessarily offensive, my mind immediately turns it into a slight against me. The dangerous part is that I usually react in a combative way and that usually means hurting myself by letting the cortisol build up in my body and because I’m low on the vital hormone, it only makes me sicker.

Then, if I’m really amped up, I’ll yell or throw things at the wall, which is a horrible idea for someone with limited speech and strength. It only injures myself on top of getting sicker.

Whether it’s a face-to-face interaction or a Twitter spat, these exchanges and the reactions they cause in my body, have made me think back and really consider the underlying causes from my past.

The Car Crash

If we’re talking about the cause of PTSD, or being stuck in fight or flight mode, or whatever you call it, it’s worth mentioning that the entire country is probably dealing with some version of this, especially those who have endured discrimination and hate as a result of the current administration. It seems we’re all on edge and looking for a fight.

So maybe I have a little of the Trump trauma going on, too. But more so, my trauma likely started in 2009, a year and a half before I got sick with ME and Lyme. I was in a fatal car accident, which I’ve written about on this blog before. My physical injuries were very minor, nearly nonexistent, really. It was pretty remarkable considering the severity of the crash. But in retrospect, there very well could have been some serious underlying complications from the accident. And I’m talking about more than just the psychological trauma of having ended someone’s life, although that is immense.

If there was one thing I could have done differently immediately after the accident (besides not inexplicably exaggerate the speed at which I was driving when asked by the police) it would be to have my brain and nervous system checked for damage. I’ve actually never had a brain scan, not even since I’ve become sick. But had I done one back then, not only would it have given me insight into any damage done by the car accident, it would have also given me a comparison to the current state of my brain. Oh, and the car insurance would have covered it. Damn!

One day, hopefully soon when I’m able to travel, I want to get a brain scan in the hope that it will still show an abnormality that will at least shed light on my condition. Awhile back, I heard an episode of Joe Rogan’s podcast in which he interviewed a doctor who was studying how some people with physical brain trauma ended up with PTSD. I often wonder if such has been the case for me after I hit my head during the car accident.

I think a brain scan might show something abnormal in a similar way. Maybe not the same as a football player or soldier, but maybe to a lesser degree. If so, I can’t help but wonder why people like me end up sick and bedridden while others with PTSD are still able to walk and talk. I imagine it’s because they do not acquire a slew of other illnesses like I have.

Stuck in Fight or Flight

Recent studies on the brains of people with ME/CFS have shown abnormalities. I seem to remember one out of Stanford showed increased gray matter (whatever that is). Whether such abnormalities will one day correlate to PTSD and the fact that I feel like I’m always stuck in fight mode, I don’t know. I suspect they will.

Like most people, I’ve heard about the struggle of post-traumatic stress syndrome. But oddly enough, it never occurred to me that I might actually have PTSD from the car accident until recently, when people started suggesting that it might have contributed to my illness. I have no idea whether this is true, or even possible, and I don’t think even the best doctor or medical technology can tell for sure. But even if it is true, it’s important to distinguish between “caused by” and “contributed to.” It’s possible that PTSD contributed to me getting and/or staying sick. However, I don’t think it’s possible that my illness was cause by PTSD.

My PTSD goes far beyond the car accident. I have a lot of trauma that has stemmed from being sick. There is intense trauma that accompanies not being able to eat solid food and communicate my needs with caregivers. These things ignite a primal, visceral fear within me that has led to profound trauma. And I’m pretty certain that trauma has caused me to get stuck in flight or fight mode. Usually fight mode. After all, I can’t take flight. I’m stuck in bed. I can hide under my blankets, but that’s about it.

I also find myself panicking way more often than I used to. I live in fear. The fear of getting sicker, making myself sicker. I fear germs and new medications will make me sicker. And I panic when I think they have. But I do my best to live as normal as possible. I push aside the panic, PTSD, OCD, and a bunch of other acronyms, in order to seem untainted by the shit life has thrown at me. But on the inside I’m a wreck. So much so it’s probably to my advantage that I can’t speak more. If I could then people would probably know the true depths of my inner turmoil.

If I had to guess, the feeling of constantly being on edge, not letting innocuous stuff go, and getting sicker because of it, is caused by a tangled web of PTSD and poor physical health. I think severe adrenal dysfunction and a lack of essential hormones also play a big factor. Oh, and as my mom says, I don’t have any filters, which is so true. I used to have all kinds of filters that allowed things to float over me and fade into the abyss, or go wherever meaningless shit goes to die. I used to be able to workout, or have a beer, or go to the beach. Now I’m just here in bed looking at walls I want to punch.

Do I have an answer to how to make it better? Absolutely not.

All I know is that I’m doing everything I can to treat my PTSD. I’m taking hydrocortisone to boost my cortisol levels. I’m treating associated health issues. I continue to try new treatments. I meditate, sometimes. I breathe with my belly. I try not to yell or throw things. And most of all, I try to be kind and gentle with myself and other people, even though I sometimes fail. I’ve been through some incredibly awful shit in my life and I want to give myself, and the people around me, the slack needed to deal with that. Sometimes that means crying five times a day. Other times, it means saying fuck it and throwing something against the wall, even if that causes my body to get sicker and I inevitably regret it. This is something I hope everyone dealing with PTSD and chronic illness allows themselves to do. The stricter you are with yourself, and the more you try to fight the repercussions of what you’ve been through, the more exacerbated your issues will become. Hopefully one day soon we’ll have better ways to treat these issues and a better understanding of how PTSD and physiological illnesses are related. Until then, I’ll try not to throw any more things at the wall.

A few things before you go:

1. Thank you for reading! Please tell me about your experience with illness and PTSD in the comments section.

2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!

3. If you would like to donate to support this blog I would be equally grateful!

39 thoughts on “PTSD and ME

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  1. Hi Jamison,

    Thanks for this very interesting post. I’ve come across the link between traumatic brain injury and ME CFS multiple times in the scientific literature. Like one other person mentioned here, I also thought about Neurofeedback as a way of dealing with PTSD. I once read a case study where someone used neurofeedback to deal with PTSD following a serious car crash.

    It may sound alternative, but there is sound scientific research behind it and it has proven effective in a multitude of clinical settings. The trouble as usual is accessibility. Neurofeedback equipment is expensive, although I believe there are places where you can hire it. There are also personal devices. I live in Europe so not much idea about neurofeedback suppliers on your side of the world, or what kind of treatments are covered by insurance and such.

    Here’s a little info about Neurofeedback:

    https://www.psychologytoday.com/us/blog/the-resilient-brain/201410/what-is-neurofeedback

    One more thing I would recommend, if you can bear to read through it, is a book called:

    The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma
    by Bessel van der Kolk M.D.

    http://a.co/aT08U7b

    This book completely changed my life. It didn’t cure my ME CFS but it certainly opened my eyes to underlying, subconscious patterns that contributed to my own difficulties managing anger. I’ve been a LOT less angry since then.

    All the hormones associated with anger and rage have a hugely toxic impact on our physiology, we simply cannot afford to have them in our own fragile bodies.

    I leave you with one last thought to ponder: Have you ever seen a happy caged lion?

    Stay strong, stay positive, we are so close to solving the puzzle!

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    1. Hi Belen. Thanks for your thoughts and those resources. I’m glad you found something helpful, I will definitely take a look. Now that I think of it my doctor did do neurofeedback with me once. I haven’t been able to do it again yet. You’re so right about the toxicity of hormones. I think that’s why it feel good to cry, get some of them out of the body. Thanks again for reading.

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  2. I called by to leave my thanks for your recent decision to follow Learning from Dogs. But completely blown away by your openness and honesty, indeed bravery, that your post reveals. Never lose sight of that!

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  3. I do not have either ME, PTSD or Lyme myself. However, one of my sons, his wife and daughter are suffering from Lyme. I also have a dear neice dealing with ME/CFS, and a daughter and son-in-law who are both Marines and have many friends living with PTSD. I am constantly researching cause, treatments, etc as nothing through traditional medicine seems very effective. That researching led me here to your blog. Your story is heart-wrenching and I am sorry for your pain. Its amazing to me that you would be so open and honest in sharing such a very personal journey. As I continue to gather information in my quest for answers for the conditions my loved ones are dealing with, I see a common thread of mitochondrial dysfunction. I wonder if you have found that common thread as well?

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    1. Hi Patrice! First, thank you for caring enough to research these diseases. Your loved ones are lucky to have you in their corner. Mitochondrial dysfunction is definitely a hallmark of MECFS, but I’m not sure about Lyme. Perhaps it is but not so much the core problem. Inflammation is another big part as is neurological issues. It’s such a mystery but answers are slowly coming. Thanks for reading and please stay in touch.

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  4. I am a survivor of a home invasion. I was stabbed, beaten, and sexually assaulted. It took a long time before I felt safe again, if even now. I had 2 young sons in the house, and was threatened that he would kill them if I screamed.I could drive to take my sons to school down the street, but that was it. The person kept coming back into the house. Doors were locked, nothing looked disturbed. But things would ‘move’ from one side of the room to another. This continued a few times until the police finally found the way he was coming in…through the wood box. From the outside you load the wood, the inside has a door you can open and retrieve the wood.
    I went through the ‘stages ‘ with help from a counselor. So did my kids. I was never the same. My innocence was forever lost. That was the hardest for me. I always believed the good in everyone till they proved me wrong. It took many many years to get that back.

    Liked by 2 people

    1. Hi Kelley. Wow I’m so sorry. You should have never had to experience that. It makes me want to ruin the person that did that to you. I hope they got what was coming to them. And hopefully you can find peace. But that’s just me being optimistic. Thanks for sharing your story. PS love your blog!

      Liked by 1 person

  5. We become so vulnerable to what we read with this illness. Trapped in our bodies, our homes, our beds. Medical advice is slim, at least for me, and so we research until our heads spin. Despite what I repeatedly read I tell myself, yes but even children get this. Children who haven’t been traumatized, children who haven’t be in car accidents. And yet, so many of us have been in car accidents. My car accident count sits at three for major and a slew of minor (I was never driving). I was actually hit bit a car at age 3 in Santa Cruz and stopped breathing, but they somehow managed to ‘turn the lights back on’. I can’t pretend to know if that was a contributor to this, or to the body pain since childhood, which was diagnosed as juvenile arthritis, but I never grew out of it and do not test positive for arthritis. I’ve been bitten by ticks….was it always lyme? I don’t know… Doctor’s labs say no lyme.

    As far as anger and fear, I’m not as angry as I am scared. I’m scared because I’m so damned vulnerable now, to everything, to natural disasters, to weather changes, to foods, to everything! I’m vulnerable to the doctors, who I definitely have PTSD about, who repeatedly tell me upon looking at of my labs, which are out of range, that everything looks fine. Translation = your insurance doesn’t pay enough for these ranges to matter to us. I’m cynical though, but I try to keep under wraps, at least here. I know I’ve written too much here and I apologize for that…I know you’ve limited energy. All I intended to say was that I think has been my favorite post of yours. It’s raw, it’s human, and it is so damn relatable.

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  6. TBI traumatic brain injury has many effects that could explain what you are experiencing. However, it also sounds like too much adrenaline without the cortisol to calm it down. Usually when adrenaline is released, it is followed by cortisol which stops the adrenaline and brings us back into balance. However with low cortisol you may find it very helpful to “stress dose” when you experience the adrenaline rush. For example if you take 5mg of Hydrocortisone usually, you might try adding an additional .2.5 to 5mg HC. at the time of the stress. It can make a huge difference in the ability to cope with stress and adrenaline release. BTW with ME adrenaline is not your friend. While lots of people can get high on adrenaline release for us it just wipes us out. See how you feel an hour or so after getting really angry. It isn’t worth it!
    Thanks for your honest blog it helps us all!

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    1. Hi Beverly. Thanks for the great info. I may try that. I’ve tried taking more and less hydrocortisone but it usually makes me feel worse. So I have to do it very gradually. You’re so right about the post-anger Crash. It’s crippling and not worth it.

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  7. Hi Jamison, I read your blog post with interest and sadness. I am so deeply and truly moved, and sorry for your pain. A lot of what you said resonates with me. Aside from having suffered physical and psychological violence throughout my entire childhood (and psychological violence even now, as I am again dependent on my father due to illness), I was abandoned by my Mother at age 9, and also at age 9, I suffered a horrendous car accident where I went through the windshield head-first. I was diagnosed with CFS aged 25 after severe glandular fever. I have long suspected that my traumatic childhood and accident had a lot to do with my CFS. And from the vast majority of people I have spoken to who also have CFS, very real trauma of one kind or another is never far behind. So you see, your post makes huge sense to me. I wish you peace, and I wish you love, and I hope that you can find it in your heart to forgive yourself for the accident and its consequences. Oh and by the way, the “drunk” comment about Betty Ford would have pissed the fuck out of me too, and I don’t have anger issues. 😉 Sending you big, huge, virtual bear hugs. 🐻🐻🐻 Hang in there buddy. Isobel.

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  8. This is so much my story. I constantly have to remember to breathe. To forgive myself. To find some purpose in this new life. Thank you for your story.

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  9. Fear too. We never talk about fear but I think there is so much fear in this illness – at least in me there is. I didn’t used to recognize it but now I do….It’s behind the hypervigilance I think.

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    1. Hey Cort! My man, good to hear from you. I’ve been thinking about you. You’re so right about fear. I think a lot of the anger and OCD is rooted in fear for me. The uncertainty creates a lot and past trauma of course.

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  10. So right on….Many times I go straight to rage….never used to happen – never. Now it’s pretty common. Too much frustration, too many problems, too much hard history….Glad you opened this door.

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  11. Right on Jamison…I totally get the going straight to rage thing. Never used to be that way…Never…Too much stuff piled on, too much “trauma”, too many dispiriting issues. so much frustration…

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  12. Yeah Jamison, I learned a while back that the anger just hurt me or made me sicker. One time after not being able to sleep at all for several days I was so exhausted and upset I decided maybe to just punch my pillow a lot really hard. Guess what! I punched so hard I actually bruised both my hands and was even more exhausted and miserable after of course. Who would have thought you could actually injure oneself doing that? Anyway I learned to try not to do that anymore. I think I stay in flight mode all the time now and am afraid all the time of everything. I have panic attacks if I have to go anyplace especially a doctor’s office!! Sounds so much like what you described. Too much adrenaline or something going on. I really think someday soon someone is going to figure this thing out and I cannot wait to see what causes so much agony for us in so many different shapes and forms. It is just sort of unbelievable. You describe it so well. I have had two brain scans but they saw nothing but I really think you have to be able to put a normal brain scan up beside ours to see a difference and then I think it would definitely show something. That was not done of course. Crying though exhausting does seem to help a little. I think maybe just giving in to it somehow helps relieve some of the stress. I hate to cry though so it doesn’t happen too often. PTSD makes sense too. The stress this causes is certainly abundant not to mention previous traumas people have been through like you have.

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    1. Hey Gloria. Ugh. Punching pillows really destroys the anaerobic threshold doesn’t it, and bruises, damn. I think crying is th safest catharsis sometimes. In moderation it can feel good and really clears the sinuses haha. Thanks for reading as always!

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  13. I just want to firstly say how brave you are to share your story. Even after years of having a blog, my heart still pounds when hitting the publish button. You are a winner over what I call “monsters” because you constantly live with courage and speak your story.
    You’re giving other people a voice who may not yet be able to share. And you are a therapy for those to step into the light and feel less alone.
    Betty Ford was an alcoholic as you mentioned. One of the very first to come out of the closet and say that addiction and depression is a disease and not to be ashamed of. That’s why it’s so ironic that someone called her an alcoholic. Even today, after she started a domino effect of great work in mental health and addiction recovery, we are still fighting stigma. You had every reason to feel rage from that comment, we all should. Thank you for sharing that.
    One last thing- I think you might like Neurofeedback.
    It would actually include a brain scan! And they work with brain injury patients, PTSD survivors, chronic illness & chronic pain survivors, and much more. You caused me to think of Neurofeedback as I read your post, so I hope it’s ok that I mentioned it. It’s alternative, and not everyone likes “alt med” so no worries if you’re not into it.
    Thank you for visiting my blog!
    I hope you’ll pop back over. Take good care of yourself.

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    1. Hey! I love your blog, thanks for returning the favor. I know what you mean about hitting the publish button. Nervous everything. And I’m with you on the stigma. People let politics and ignorance cloud compassion and being human. I’ll look into neurofibromas. Thanks!

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      1. Hey! Thanks so much!
        Sometimes I think that if I’m not a little anxious to hit publish, then I didn’t share enough of my heart. Today, I wrote a silly post- and believe it or not, those can be pretty vulnerable, too.
        I hope you’re feeling as well as possible today. I hope you find something cool on Neurofeedback! ✌

        Liked by 1 person

  14. Jamison, my fellow M.E. sufferer. Lizbeth here–M.E. for two decades. Just wanted to mention what your writing about PTSD has for me. I know that a botched appendectomy 2008 caused severe PTSD and exacerbated the M.E. I had zero help. None. Nada. A couple years later, I gave up my telecommuting job so I could flee from NC back to Boston area where I had “family.” Turns out, those people never cared and certainly couldn’t be bothered now. I have ended up alone annd housebound in a lousy neighborhood.

    Point you made–PTSD can make M.E. worse–I know that one intimately. I try hard not to rage or to use that rage for productive purposes given my limitations. I dream about a miracle that would let me get out of the Northeast again. Boston has zero care for folks with M.E. Zero for PTSD. Unless you have a rich uncle, if you get my drift.

    In any case, thank you for sharing what we share together. For a few moments, I stopped feeling so damned alone.

    Lizbeth

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  15. I found out years ago that I cannot afford strong emotions, not the physical parts of them, so I just damp the emotions, store the details in writing (yeah, that’s what we writers do – no point in wasting good material), and do NOT let my bloodstream get filled with the adrenaline it seems to take my body so long to get rid of. No ‘good cries.’ No rage. No throwing things. Not supressing: honoring the emotions first. I recognize what’s going on as soon as it starts, and do what saves me days afterward.

    Took a while to get to this level of mastery, but it is necessary for me. I only hurt myself when I indulge. I think the key is to acknowledge that I have every right to rage or cry or even throw things, but that it will hurt me. I’m a lot older than you are, but have only one question: is it worth it, considering what I have to pay. For me (and I’ve been sick since 1989), the answer is always no. It doesn’t bring my Daddy or my Mother back for me to cry – I have much better ways of honoring them. Self defense.

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  16. Yes, I totally agree with your self-diagnosis … I have been seeing this a reality for a long time since the accident, since I was there with you on that day …

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  17. Yep. I had a stroke a handful of weeks before I got a terrible virus that wouldn’t go away. In my case, the brain injury was followed by a sharp decline. Bleeding stomach ulcer, lost 20 percent of my already low body weight, diagnosed PTSD, depression, etc. That was 7 years ago.

    For me, a paleo diet and getting rid of all artificial fragrances has been much more helpful than therapy for my depression and anxiety. But to each his or her own.

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  18. Dear Jamison , I also had a motorbike accident in the same terrible 1998 year . the same in which a tick attacked my arm while riding near an embamkment but first of ally of my mono and onset of ME/CFS. After the accident i had X-ray but no MRN (it was 1998), then after worsening symptoms of ME/CFS in 2012 i had my first MRN without contrast and nothing strange has been seen. Are you referring to a MRN with or without contrast ?

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  19. It’s interesting that you bring up traumatic brain injury. I have PTSD from my childhood and from my Mama’s death, but I also suffered a head injury when I was five–the year before my Dad died. I’m wondering if how my brain chose to cope wasn’t partially because of that injury. For me, rage is the safe form of extreme grief. I think I exist with a low level of it that eventually explodes because I was taught to bottle things up. Since my Mama died, I have very few filters, but anger is still something I have a lot of trouble expressing–so it’s the one way where my PTSD will show up if I’m not caring for myself. After I got super ill with thyroid issues and adrenal fatigue, I ended up losing a gall bladder and started seeing a naturopath who told me that a lot of people with my particular physical issues were people with PTSD who had issues expressing grief and anger. It made me very cognizant of it. Unfortunately, for me, talking about the things that make me angry rarely makes it better. It just builds and builds. The only way to really deal with the anger is to allow the sadness and grief to come out–but that can take so long to get there.

    Anyway, thanks fro sharing your experiences, as always. I actually wrote about my anxiety and PTSD recently–if you’d like to check it out. https://pausesighgohi.wordpress.com/2018/03/11/anxiety-ptsd-tag/

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  20. Thanks for posting and being real about your experience. I knew nothing about M.E. or lyme before reading your blog, and I think I had a lot of just plain wrong assumptions. Fortunately, your writings have educated me somewhat on the subject, although I’ll never know what it’s really like unless I get M.E. myself; but at least I have a clue now … here’s hoping that you get to where you can get up and walk around, and do all the things you’d like to do again.

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