DillyDally: introduction

[DillyDally]

Thank you kindly

[DillyDally]

I don’t know if this is the right place to vent this, but I am having a surprisingly (or maybe not) hard time with the weight loss element and difficulty eating. I feel so afraid it will just keep disappearing and its so triggering to like it too despite doing all I can to halt it. It’s so confusing. It will stop wont it? I’m worried my body wont tolerate being so starved again. I don’t think I can do anything more than I am, I just need to say it out loud.

 

I’m having conflict in my marriage in the form of (what I would class as) verbal attacks from my husband when his anger becomes overwhelming. His anger management is terrible. It affects my withdrawal terribly and although we work it out (counselling is coming too on my insistence) the way it activates my stress (barely sleep, cant stomach anything but liquids again, 120+ resting heart rate, headache, jaw)

 

the worst is that each conflict exacerbates the weight loss. Its not so dramatic probably but it feels dramatic and I feel so tired. A couple pounds a fight, every month or so feels scary. How many more fights can my body afford.. The stress of this compounds everything.

I am reaching out to those precious few I have in my life about this for the first time (I hate asking for help and putting people out with my feelings or struggles) but I feel very isolated as I’m sure most of us do on this journey. If I have to leave, I dread to think of the physical impact. But I will protect myself and health at all costs.
 

This is such a nightmare. I was having a wave already the last couple of weeks (severe brain fog, delay in speaking, more extreme fatigue, really hard to eat enough), Im so angry I cant find the emotional safety and consistency in my home to heal right now. I work so hard to make the best of this hell and do the best for myself, I do not want to be undermined by others inability to take responsibility for not lashing out at me verbally. I am infinitely empathetic of what it must be like to be around me but I have to believe it is unjust to be treated this way regardless.

 

thanks for listening whoever is there

Dilly
 

 

[Altostrata]

I am sorry you are having these difficulties with your husband. They can indeed cause additional stress to your nervous system.

 

You may wish to post in our Relationships forum.

[DillyDally]

When things are calm and stable at home I am feeling like I could sleep a lot more.I wake every 1-2 hours (vivid dreams) but I will do that for 6 hours, then a 1, 2 or 3 hour nap sometimes too. This feels good albeit draining in its own way. Other times its 4 hours max for days sometimes.

 

appetite still very challenging but I have nutritional shakes now to utilise. 
 

I was in quite an intense wave for a few weeks in june/July - had conflict with husband, wave got a Lot worse - conflict calmed and stabilised - wave returned after a week/10 days to mostly as it was before the conflict. This feels promising.

 

I would say windows and waves still all happen within a 24 hours timeframe if windows happen at the moment but I feel like I am starting to heal and waves are more manageable because I am adapting to the limitations of withdrawal, being more flexible to accommodate my life as it is, this is also very helpful. Too many goals too far away was depressing. I am where I am for however long I am, motivation has not been an issue for me for a long time, I need to respect that now and let my body lead the way. 

 

I have joined a seniors fitness class (I am 33, but it is exactly the pace and capacity I feel able) and I also joined a seniors line dancing class. They are both a 4 minute walk away. I cannot drive until I kick the cannabis so this is a double win (location and vibe!)

 

I am slowly but surely reducing my cannabis and codeine. This is going well or certainly not making things any worse that I can discern.

Since recognising my physical dependence on cannabis more clearly (thanks @Altostrata) regulating my use better over 24 hours (whether a coincidence) has actually reduced the severity and frequency of debilitating headaches substantially, I hope this continues as it is the most positive development for me.

 

just a quick update. Ticking along slowly but surely.

healing thoughts to you all.

DillyDally

[DillyDally]

Seniors fitness class too much for my body yet. All my muscles aching today a lot and feeling extra shaky. I felt silly in the class yesterday as it was such simple little movements and I stuck out like a sore thumb (as welcoming as everyone was) but I guess my cautiousness is warranted. Live and learn.
 

Will stick with line dancing for now, its more of a brain stretching exercise and a way go get out of the house more than physical exercise and I felt exerted but fine after, last week. Hope I feel well enough to go tomorrow!

[BelaLugosi]

Wow good to see you are improving 

On 8/7/2023 at 3:37 PM, DillyDally said:

I would say windows and waves still all happen within a 24 hours timeframe if windows happen at the moment but I feel like I am starting to heal and waves are more manageable because I am adapting to the limitations of withdrawal, being more flexible to accommodate my life as it is, this is also very helpful. Too many goals too far away was depressing. I am where I am for however long I am, motivation has not been an issue for me for a long time, I need to respect that now and let my body lead the way. 

 

(...)

 

healing thoughts to you all.

DillyDally

 

wow niceeee hoping to get there

[Gonzo]

I read your story and I'm sorry for what you went through.

 

Psychiatry and psychiatric drugs can't cure trauma and oppressive, alienating environments. I don't understand very much about the drugs you took, but I do understand about the trauma and from which type of environments it comes from.

 

The saddest part is that under all those psychiatric treatments the underlying trauma is intact, and if you don't scape from the oppressive and alienating environment that produced it, you're still trapped too.

 

I have complex trauma, and psychiatry only worsened it, it reinforced my trauma, shame and guilt dominated identity giving me this false idea that I was ill and that I had to take Sertraline for the rest of my life.

 

I have an OCD psychiatric diagnosis, but I don't believe in it. It never helped me to fix my life problems.

 

I hope you're having a good day.

[DillyDally]

Thank you @Gonzo. I wish you didn’t have to relate to these experiences but I am so appreciative of your validation and understanding. Psychiatry sounds like it has compounded both of our traumas, understandably.

 

It took for me to read a book (pete walker, complex ptsd: from surviving to thriving) 3 years ago which explained so perfectly how I felt, how I’d come to feel that way and, most importantly, what I could do to help myself. It was like someone adding subtitles to the foreign movie of my life, so much made sense all at once. It was the reason I realised medication wasn't helping and was part of the problem and why I chose at that time to come off all 6 medications (trusting doctors to help me) I was on for my suicidal feelings, which I was told I would have forever. I want to point out here that no matter how horrific withdrawal is or has been, I have had the least suicidal thoughts of my life since reading that book but especially few since coming off all medication given my history with those thoughts.
 

Its such a shame that just at the point of finally feeling I had a way to really address the trauma from childhood and medical ’treatment’ my physical health became so badly compromised as a result of each way I tried to help myself, almost like it was ‘too late’ and my body was done. I went through a lot of grieving, still do, and I was so angry and tired of working so hard on myself. It didn't deter me or my determination to know what is on the other side of living such a depressed life so I am committed to nurturing that life saving curiosity. It is proof to me that we can heal emotionally when we have the right tools to support ourselves even under very difficult circumstances. 

 

I feel strong in spirit today but my body does not at all but I will take much gentle care today. I hope you do too.
 

 

 

[DillyDally]

Stopping by with a small update to say I am on day 15 of zero cannabis after tapering since June.

My waves and windows followed the pattern @Altostratadesribed in the post on that up til the point of cessation and I felt myself improving slowly but surely (still not fit for work but by withdrawal standards I was remaining hopeful of my steady progress) and now I am in more of a wave since stopping which I was prepared for both mentally and practically (made lots of homemade frozen meals). 

Increased symptoms during this wave since stopping cannabis are

More frequent tension headaches and migraine (feeling of wanting to vomit from the pain)

jaw pain

brain fog - can’t take in conversation or think of anything to say and when I try my head starts hurting

nausea with hyper-salivation

constipation/stomach cramps

anxiety (Im bad/something bad will happen but can’t say what)

low mood/flat/feeling dead inside

extremely vivid dreams and nightmares 

cold/sweaty

lack of appetite 

 

I am surprised that insomnia has been sporadic and not constant and I am actually sleeping well some nights despite the dreams - I wake up from them and feel so groggy and sedated I cant help but fall back to sleep

Sleep is tough if the headaches are too intense.

 

I do Not want to smoke cannabis no matter how I feel and codeine has made me feel very unwell (15mg) the last 2 times I took it so I feel pretty confident I wont take it again which is a good thing (though I have fears of what I could now take should I become injured but thats not worth dwelling on - nor is the fact that my GP retired this week)
 

I encourage myself remain curious and open to where my journey will go from here and feel indescribably relieved to be free from cravings and able to embrace my sobriety at least, despite all else. Tapering the cannabis was the best solution to being able to cope with its withdrawal, thank you for pointing out my physical dependence so that I could get to this point Alto.

 

more soon, wishing you well those who come across this and all my fellow survivors of this ordeal. X

 

[Altostrata]

If you were using cannabis often, it too can cause a withdrawal syndrome if you quit it.

[DillyDally]

Just want to say thank you @Altostrata

Your presence has made this experience so much less terrifying and isolating and the work you and others do here life saving.
 

I look forward all the time to being of capacity to contribute something worthwhile to the cause.

 

You are a pioneer and a star in the dark sky, happy holidays and best wishes 

[DillyDally]

Probably just talking into a void but don’t know who I could say this to who would even understand..

 

headaches really getting me down.

too sad or stressed = headache

have a nice time or too much positive stimulation = headache

wake up from any sleep good or bad = headache

 

paracetamol only works so rarely that I am too scared to take it because its more unnecessary chemicals for my body to process and everything else (eg codeine, aspirin) makes it so much worse. I could tolerate codeine before I stopped cannabis (37 days clean)

 

I know this will pass or I have to keep hoping it will but Im so Sick of headaches. Enduring is all there is left and I feel so lonely and misunderstood about it. I could have so much more without headaches even if it was still a small life they hold me back so much and are so all consumingly painful.

 

not sleeping well, waking every hour however many hours I get and having vivid dreams or nightmares.

 

im proud to be where I am in terms of no drugs whatsoever but I’m so sad, so tired and feel so isolated.

 

if anyone is there I could just do with a few kind words of encouragement if you have them to spare

 

dillydally

 

[DillyDally]

Any grain of trust I had left for the medical world has been completely crushed.

 

I requested my medical notes so Id feel like I know where I stand - ie disability payments, legal repercussions, should I need to change doctors practices in the future. Even the GP I thought believed that I was in withdrawal (who has since retired) has put my physical state down to psychological causes in my notes. He may have verbally acknowledged me but theres no trace of that from him or anyone Ive consulted on it. Its humiliating and feels like Ive just been placated. Its infuriating and invalidating too. I’ll never trust a dr again and will have my guard up forever.

I hope beyond indescribable measure that I dont need any form of medical intervention for a very long time to come (if ever but that feels too wishful thinking) because no one will ever believe me if I say these antibiotics/steroids/ppi/anaesthetic could ruin the next months/years of my life again. 
 

maybe thats too much fear and if withdrawals ever end my body could learn to tolerate those things? Any hope to offer here @Altostrata I have no one else to tag, I know youve stepped back. But no one else responds…

 

The most hopeless I ever feel is thinking about being believed, treated with respect. I feel ive been talked down to/minimised/invalidated/humiliated/belittled by drs and psychiatrists my entire adult life.

 

 

it makes me feel so helpless and hopeless. I dont want to lose hope but its hard to feel safe in a world where these people are the gatekeepers to so much. Why dont they believe us?

 

 

[littlebird]

Hey DillyDally, that is so disheartening. Nothing like seeing your medical notes and what your doctor said vs what they really thought and not having it match up. It's so unfair, and one day there will hopefully be more information and research on these meds, but we're flying blind right now and most docs parrot what the drug companies claim.

 

Do you have patient advocates in Wales? I'm wondering if having someone there to support you next time you need to talk to a doc might help get your points across? I'm right there with you in not trusting the medical establishment... and also the older we get (if we're lucky enough to age), the more we'll need the occasional doctor visit. Here's hoping we can find the right practitioners who believe us and know their stuff!

[DillyDally]

@littlebirdthank you for responding and being here with me. Feeling seen goes a really long way in this experience. I know how much work you must have honouring your own journey as well supporting me/us. 

 

Patient advocate is a good idea, thank you. Ive used this service for complaints in the past but not for actual appointments so I will consider this should I need to make contact with a dr in future. Or even my husband or friend as a witness so I cant be gaslit anymore at least..

 

i only engaged as my pip (uk disability benefits) payments are up for review for the first time since being medication free and I needed back up as to how Im worse off for it not better but Im going to just avoid Drs unless my life depends on it. It is immensely triggering as we all can relate and so I appreciate the support. The pip chips will just have to fall where they may.

 

do you know if once I recover from withdrawal (to whatever degree that will be) antibiotics/steroids and the main antagonist medications become more tolerable? I know it must be hard to say with so little research but I wonder if that’s a possibility. 

 

aside of this really upsetting me, I feel

its important to note the last week and a half I have been having hours of windows most days for the first time regularly in some months out

of no where. I am holding on to and nurturing that with all that I have, they wont derail that hard won progress.

 

thanks again

 

[getofflex]

Hello.  I'm hearing you say that you feel very distrustful of the health care profession, because they have gaslit you, invalidated you, and not taking you seriously.  As if it's not bad enough we are going through serious withdrawal, then they add insult to injury by disrespecting us patients.  It shows their arrogance and hubris.  I am right there with you on this.   I, too, feel very distrustful of the health care profession, and avoid them as much as I can.  Of course, I realize that at some point, you, or I, may need medical care.  

 

On 2/7/2024 at 12:24 PM, DillyDally said:

do you know if once I recover from withdrawal (to whatever degree that will be) antibiotics/steroids and the main antagonist medications become more tolerable?

I'm not familiar with antagonist medications, and I don't have experience with steroids.  However, it is my understanding that as we recover fully, our nervous systems eventually lose sensitivity to these things.  I don't know if this is true of all people, and I imagine it takes more time for some of us than others.  

 

However, I can say that I was able to well tolerate an antibiotic that I used for a UTI last May.  It was Cephalexin.  It's related to penicillin.  I had no problems at all.  I think the antibiotics that are especially bad are the fluoroquinolones.  

 

Please read the links for further information. 

 

Antibiotics in WD

 

Steroids

 

On 2/7/2024 at 12:24 PM, DillyDally said:

the last week and a half I have been having hours of windows most days for the first time regularly in some months out

 

 

This is excellent news!  This shows that your nervous system is recovering!  

 

 

 

Edited February 10 by getofflex

[DillyDally]

Thank you for such kind words of reassurance and validation. Grateful for you taking the time to read and respond but I’m naturally sorry you do relate to this of course.

 

I’m glad to hear you had no bad effects of the antibiotics you needed (though sorry to hear you needed them at all).

 

I will be sure to check out the links you provided thank you.

 

I’m taken quite by surprise of how suddenly the window has come

on. Just noting this for my general storyline: I’m getting on top of eating healthier/the housework/my self care/gentle exercise with the larger pockets of energy Im getting, more sleep, way less frequent and intense headaches and most noticeably my jaw opens the widest it has opened for 2 years!

I Still have sore/dry eyes, runny nose, quite hard to keep warm, muscle fatigue, hard to think or recall information and a stiff neck but long may this window continue, so grateful.

 

I really do appreciate the support. Thank you. Im trying hard to learn to not need validation/understanding from the everyday day person/medical practitioners (my husband, sister and one particular friend excluded who have really made such an effort to get on board with all this) as I think it creates more pain to expect it and not receive it. But it’s hella lonely though so I turn here and it really lifts my strength up to strive on being my own cheerleader, advocating for myself with confidence and pride in the process. So I thank all who create this space for offering me a place where I feel like Im not a conspiracy wielding paranoid oversensitive hypochondriac.

 

I truly hope I can repay the kindness, support and life saving wisdom I have received here one day. 

[getofflex]

2 hours ago, DillyDally said:

I’m getting on top of eating healthier/the housework/my self care/gentle exercise with the larger pockets of energy Im getting, more sleep, way less frequent and intense headaches and most noticeably my jaw opens the widest it has opened for 2 years!

It sounds like your nervous system is recovering nicely.  I'm sure the improved sleep is helping a lot with your energy levels.  Just FYI, walks outside are really healing for me.  You might consider that, if you can. 

 

2 hours ago, DillyDally said:

Im trying hard to learn to not need validation/understanding from the everyday day person/medical practitioners (my husband, sister and one particular friend excluded who have really made such an effort to get on board with all this) as I think it creates more pain to expect it and not receive it. But it’s hella lonely though so I turn here and it really lifts my strength up to strive on being my own cheerleader, advocating for myself with confidence and pride in the process.

Very good insight.  It's great that you have some on the ground support!  If you have time, you might read some of the other intros in here and do some posting on those threads - chances are, some of them will then come to your thread and offer support.  Hang in there, this will get better, and some day you will be able to live a normal life again. 

[HelenR]

7 hours ago, DillyDally said:

Thank you for such kind words of reassurance and validation. Grateful for you taking the time to read and respond but I’m naturally sorry you do relate to this of course.

 

I’m glad to hear you had no bad effects of the antibiotics you needed (though sorry to hear you needed them at all).

 

I will be sure to check out the links you provided thank you.

 

I’m taken quite by surprise of how suddenly the window has come

on. Just noting this for my general storyline: I’m getting on top of eating healthier/the housework/my self care/gentle exercise with the larger pockets of energy Im getting, more sleep, way less frequent and intense headaches and most noticeably my jaw opens the widest it has opened for 2 years!

I Still have sore/dry eyes, runny nose, quite hard to keep warm, muscle fatigue, hard to think or recall information and a stiff neck but long may this window continue, so grateful.

 

I really do appreciate the support. Thank you. Im trying hard to learn to not need validation/understanding from the everyday day person/medical practitioners (my husband, sister and one particular friend excluded who have really made such an effort to get on board with all this) as I think it creates more pain to expect it and not receive it. But it’s hella lonely though so I turn here and it really lifts my strength up to strive on being my own cheerleader, advocating for myself with confidence and pride in the process. So I thank all who create this space for offering me a place where I feel like Im not a conspiracy wielding paranoid oversensitive hypochondriac.

 

I truly hope I can repay the kindness, support and life saving wisdom I have received here one day. 

@DillyDally I'm so pleased you have a window at last. All your efforts are slowly paying off. Long may this continue.

[DillyDally]

3 hours ago, HelenR said:

I'm so pleased you have a window at last. All your efforts are slowly paying off. Long may this continue.

Thanks so much @HelenR appreciate your words. Hope there are signs of a window in your horizon too and wishing you as much comfort and strength as possible until it comes