**New Blog: Please Read to the end**
I’m ready to share my truth (as embarrassing as this is for me) of what happened to me during my Psilocybin treatment and what it has done to the quality of my life since. It’s a long one but I do hope an educational one as well.
*may be triggering*
The clinical portion of my Psilocybin journey has now come to an end. It actually feels like a big weight has been lifted off my shoulders. I had no longer qualified for further treatments due to the neurological damage it had caused me which has also contributed to a significant decline in my mental health too but I made a promise to my Psychiatrist several months ago to stay as present as I could in the study, just on a much smaller scale, so that they could continue to collect necessary data for their research (*I’m pretty sure I will be written up in medical journals as that one unexplainable phenomenon).
As many of you know who follow my journey regularly I have always kept a promise to be as open and honest as I possibly can and I have made it my life’s purpose to allow others who may be reading or listening to always feel as though they are not alone and that it’s ok to ask for help. Sharing my own struggles has brought comfort to so many people and although I may not share everything going on in my life, if it’s part of my own personal mental health story, I’d say it’s been pretty darn close.
As many of you also know, I have been feeling extremely defeated lately, frustrated, angry and beyond exhausted from all the added stress I’m dealing with. I’m worn out to the point that I’m barely holding on right now. I’ve got no more fight left in me and I’m not gonna lie, I’ve been consumed by thoughts of suicide day and night for weeks now because of what I’m going through mentally, physically AND personally.
The other day though, I was reminded of a conversation I’d had with a Psychiatrist I spoke with late one night while in emerg last September. He told me that it was now time for me to start advocating for myself and not just for others. I took what he said to heart and it’s been a huge focus of mine for the past year but now I feel like I just can’t do it anymore. There are just too many obstacles in my way due to our failing healthcare system and the lack of resources, understanding and research surrounding my new condition.
So to say that I am feeling very much alone right now is probably an understatement which is why I have decided that today is the day I am going to open the curtain into my life just a little bit wider and try and advocate for myself by using the same platform that has helped so many other people find the courage to ask for help or feel less alone and I know firsthand just how powerful social media can be (just know as you continue reading that this is also the hardest and honestly most difficult thing I’ve ever shared along my entire journey).
It’s actually near insanity what I’m about to share. I still can’t believe it myself. I feel like I’m living in a nightmare.
As it is, it took me the better part of a month of suffering in complete silence post treatment before I finally found the courage to even open up to my own husband about what had truly been happening to my body since the first moment my psychedelic trip began. For several weeks prior I just kept trying to convince myself that it was all in my head and I must be imagining it.
The “trip” lasted well over 6 hours in total and far longer than the doctors in my care ever expected; five and a half of those hours were spent laying completely helpless on a very uncomfortable couch, pillow under my head, my body wrapped in a blanket (that I quickly managed to unwrap) while listening to very distressing music on headphones they gave me as part of the study and my eyes covered in a dark mask all the while, convulsing non stop. Once I finally divulged everything to Rich then came the even more difficult conversations with my therapist, Psychiatrist and GP. A diagnosis was confirmed but that was just the beginning.
Suffering in silence is not a healthy way to live but as I’m sure you will be able to understand shortly, I was too embarrassed and too ashamed to share with anyone else until I began to process my diagnosis and opening up little by little with close friends almost became a necessity and the more I learned through my own research, including joining a Facebook group I found for people like myself from all over the world who are dealing with this same unrelenting, unbearable, very rare, incurable disorder was I able to slowly feel comfortable enough sharing with others as well.
But it’s not enough anymore. It’s becoming more and more concerning, without any resolution in sight and as my level of stress increases so too do my symptoms. It’s becoming more and more unmanageable and more and more difficult to hide it. I’ve seen 2 different types of Neurologists, one of whom sent me for an EEG and MRI and one of whom told me a circuit broke in my brain the day of the treatment and hopefully it will fix itself one day. I’m on a wait list to see 2 other specialists and have been told I will be lucky if I get in to see either of them within the year.
Through my own self-advocacy and Google searches I was able to find the only 2 doctors in Ontario (both of whom do research at Queens University in Kingston Ontario). They are both recognized as “distinguished” in this field of study. They were able to recommend a couple of treatment options to me but unfortunately one of which was to try taking an antidepressant to help give me some relief from my symptoms which is also unfortunately not a viable option for me given the lengthy list of dangerous side effects they have caused me in the past. I’d just be trading in one issue for another, if they’d even work at all, which is not a risk I’m willing to take any more. Their other recommendations are not ones covered by our lovely healthcare system unless I do it through one of the 2 referrals I’m hoping to see before 2024!!
I am speaking out today because I want to help normalize this disorder and spread awareness. The number of people suffering in silence right now far outweighs the statistics due to its sensitive nature which is also why I’ve chosen to use my platform to try and find other avenues to explore or doors which could possibly open up faster in order for me or someone else reading this to seek help (there is one Guru whose name has been mentioned numerous times to me by the doctors I’ve spoken to and many members in the Facebook group I’m in who have had the pleasure of meeting him but unfortunately he works in San Diego!). He’s written many research articles on the topic which is why he is so well known because there has been very minimal research done on the topic and has only been recognized in the medical field for the past 20 years, leaving what seems to be most doctors having very little to no training or knowledge on its many complexities.
I am finding myself sleeping less and less as sitting and lying down escalate many of my flare-ups throughout my day and when the flare-ups are at their peak my entire body trembles. I am experiencing a constant tingling sensation in my hands and feet, brain zaps, numbness throughout my body, nausea and a shakiness in both my arms and legs (likened to that of restless leg syndrome). I can no longer handle simple touch and sudden noises or movement like a sneeze, cough, snore or clearing of someone’s throat will trigger my symptoms as well. It is consuming my entire life and wellbeing at this point in time. Distractions throughout my day are certainly helpful but only last for short periods of time.
I think I will leave you here with an article attached to help fill in the blanks (which there are lots of). As I mentioned at the start of this please know that this has been the hardest thing I’ve ever shared, but I don’t want it to be.
If anyone would like to reach out to me privately please feel free to.
Thank you for those who made it all the way to the end. I apologize for its length but I just needed to get it all out. Thank you for continuing to come along with me on this crazy journey of mine.
#pgad #tmi #mentalhealth #suicideawareness #depression #anxiety #suicideprevention #stress #youarenotalone #itsoktoaskforhelp #myjourney #blogger #youareenough #sharingmytruth #itsoktonotbeok #treatmentresistantdepression #selfadvocacy