Lately I‘m thinking a lot about why we keep things to ourselves. Sometimes I don’t share because I want to protect myself from feeling unseen, unheard or invalidated. Sometimes I want to maintain the „I‘m fine!“ image. Sometimes I worry about being a burden. Sometimes I feel like the „support“ I get offered is toxic.
I am so grateful for people here on TS and irl that make me feel safe and are there for me. Friendships and relationships get deeper and more meaningful when we truly start talking about our vulnerabilities. I am glad you started to share and open up and give people a chance to offer support, love, friendship, comfort.
You are seen and loved, Jazzy
I also see that I made a spelling error earlier - except should have been accept LOL
All of that hits home and is relatable. I am so sorry that you have experienced moments where you felt you could not be open or that sharing would not be met with love and support. You are not a burden. Toxic support is something that I am learning is real and seeing signs to watch out for. Our internal sensors are usually right when they give us the gut feeling to walk away. I am learning to listen to them.
Very grateful that you have found friendships and relationships to lean on and form a deeper bond with. I have realized that we all have something going on. No one is without pain or heartache. Not all of us show it in the same ways or forms but that does not mean it doesn’t exist. This is the bond of humanity that bonds us (if we let it).
Much love friend - thank you for being here
@JazzyS the fact that you go through all this everyday and still come here as one of the most positive energies makes you one strong and incredible woman.
Thank you Tisha - much love my friend. Very sweet and kind of you to say. This space and all of you give me the strength to keep going. I am so very grateful to be on this journey with all of you. We are dealing with the rough things and not allowing them to hold us back from living
I am doing my best to send over some of this late day sunshine your way so you can hopefully enjoy a outdoors walk tonight
Dearest Jasmine, none of it is ok. Living with so many chronic issues that affect every minute of every day is not ok. Being conditioned to dismiss things said to you is not ok. Hearing from our esteemed medical community that you are beyond help is not ok. But feeling that you are no longer alone is definitely ok!
You are such a beautiful soul and a gift to all of us here. Now that you have so unselfishly shared your story, you have grown even more beautiful in my eyes. I was already in awe of how much you give to every person who posts here in TS. But now I just have no words when I think of how much you do here in light of your physical limitations. (and as you can probably tell, I always have some words lol)
I am SO happy that you are taking matters into your own hands because I truly believe you will find healing. I know this because I know you will never stop looking. And maybe you will teach the medical community a thing or two while you are at it!
In response to some of your posts I have sent hopes that you will get some much deserved good sleep. Now I understand even more how much you need it and how much more I will hope for it to come.
I am honored to know your story on a deeper level. Thank you for trusting me with it.
This is something I needed to hear at this exact moment. Even when we know this to be true there come moments where we need that reminder.
I am so very grateful for you and your presence here. I appreciate your lovely and caring words.
I had a wonderful time (albeit very painful) with my fam on the river. I knew I would pay for it but was not prepared for the hell I experienced last night. The blessing was that I did sleep. Slept through the night and a few times today. I appreciate you sending out sleep vibes on my behalf. .
Thank you for being you! Appreciate your kindness and love.
Edit to add ..I am so incredibly grateful for the cheering you are doing in this post. Making me really believe in that hope and that anything is possible.
Oh Jasmine! I am so very sorry and that is a lot to be dealing with. Appreciate you sharing all this with us. Here to offer friendship and support however needed or I can! Sending lots of hugs your way.
Much love Stef. Thank you for your support and the offer of friendship. Truly grateful. I love how this community is filled with so much love and caring and we all show up for one another
Hey Jazzy! I wanted to throw in one more loving, supportive word into the mix- I’m not very eloquent either but i have lots of love for ya. I had no idea how much you deal with and hurt and feel uncomfortable every single day, and I’ve been educated today on how invalidating certain corners of the world can be to a beautiful, struggling soul like you. I absolutely hate that you’ve been treated like a burden on the system or like what you’re dealing with isn’t thoroughly draining and absolutely real. Thank you from the bottom of my heart for showing up for us when you have so much to deal with already- you’re a beautiful soul.
Ohhh Jasmine, you’ve sure hit my heart on a whole new level with this post! I’m absolutely going to have to go back and read this whole thread again.
To be able to witness all the love you pour out to others while you go through this is an inspiring true gift!
I too have MCAS, and the histamine intolerance. I was finally diagnosed this last year. I also have HaT (hereditary alpha tryptasmeia) and some of that same dizziness that you experience at times.
It’s certainly been a frustrating process, but for me I feel like knowing it isn’t all in my head has been liberating too. I have had many many years when the medical staff was just at a loss, so I am grateful for medical advancements and the right people being put on my path, profressionally and personally-like you! We are never truly in it alone.
Awe Madds you are beautiful and lovely and your words are perfectly eloquent. Thank you for the love and support and validation.
I did deal with many ill feelings towards the medical systems but know that it’s not All their fault. I’ve come to realize they can only work with the knowledge they have, the rules they have to follow as some establishments have their hands tied and can’t work outside the box and some are just working with blinders and refuse to accept possibilities of something they are not familiar with. This is not to excuse the dismissive behavior but just a way of me processing it and understanding where they are coming from.
I have learned that we do need to trust ourselves when we know something is off. We have to be our best advocate cause no one knows us better than we know ourselves.
Big hugs my friend. I am so sorry that you are dealing with so much. I had an inkling with your posts but didn’t want to pry. You are always so positive. Grateful that they were finally able to give you a diagnosis. You are right… having a diagnosis is so freeing and almost has a calming effect even though nothing changed with the symptoms or pain level. It definitely is not in your head.
Sorry that you have been made to feel that it could be imagined. I too am grateful for the advancements and learning now how much more there is to learn. The human body really is such a wonder.
I had to look this up. It sucks when so many things have same or similar symptoms. This does make it harder to figure out the diagnosis and find proper treatment. This is also new to me as I figured if it was autoimmune then you could do a standard treatment and voila…that is not the case. Many autoimmune ailments are not curable (or so they say) and many have different courses of treatment.
This is the hardest part. And it really does start to make you wonder if it’s actually real. Especially when tests start coming back normal. I had 3 abnormal autoimmune blood tests but 4 normal so they dismissed the abnormal as they weren’t too far into the range. You are not alone my friend. It is bittersweet learning that someone else is going through this. I feel seen but I know what you’ve gone through and going through and that hurts.
The dizzy spells are the worst imo as you really loose control of your bearings. I have found humming to be help and doing a light brushing in my neck (from curve of skill downward) with a meridian brush to be super helpful. Maybe it could help you too
Much love and big hugs right back to you . We are present to fight another day
You are great person Jasmine and I’m.so.sorry you have to deal with all this symptoms and pains. How are you doing this that you are so helpful, understanding and polite with all us here and our bullshit. You are still showing heart to someone who is complaining that sauna in the swimming pool got closed (me), I would probably shoot like from the Uzi with "oh shut up, oh fuck off, crybaby! if I would have to deal with so much pain like you on daily basis and listening to some complaints. You must be an angel. I don’t see any other explanation.
Oh lovely friend… First of all
..nothing that you or anyone else is going through us bullshit. . You my friend are living with your own struggles and still can come and give some beautiful words here. Thank you the family and connection we have here is indescribable and so heartwarming.
This is super frustrating and I felt that in my core. I know how important it is to have out coping items, rituals, places and how devastating it is when something is compromised.
You made me laugh. Thank you for your kind words and support. This space has really helped me and I find it soothing to connect with my fellows. Gets me out of my headspace and sometimes gives me a different perspective. For a long time this place was my main connection to others and I am so very grateful.
I had some time in my sobriety where I was living in my brother’s basement and unable to work. I felt pretty useless and like a big burden so did not ask for anyone’s tme or attention as everyone was already working hard in picking up my slack at work. My family did not ignore me but a 3 or so 5 minute conversations a day is hardly enough for human connection. We did spend time together for a few hours once or twice a month but again it was mainly a life in isolation. Isololation can be a silent killer and a breeding ground for depression. The TS community gave me a link to humanity and kept me going. I will forever be grateful for you all!
Hi Jazzy,after reading this i probably wont ever complain about a few days of stomach pain and cramp again in my life!! I really hope that one day things will be better for you
So I went kayaking with my siblings and BIL last Sunday. I knew I would have to pay for it but still was not prepared for the extent of what I would endure. Also a little tired of having to pay for just living.
Sunday night was rough and I was in excruciating pain. My migraine was in full swing and I felt like vomiting but I rarely ever actual vomit now that I am sober. I am grateful that I made it to my bed and was able to sleep. Woke up feeling crappy like a hangover and a new pain developed on my left back behind the ribs. It is not a sharp pain but annoying and the skin is super sensitive to the slightest touch or breeze. I have been beyond exhausted even though I am sleeping finally. The pains and tension have been magnified and for past few days the sharp pains and inner rashes under my arm pits are heightened.
I know this is temporary and I will go back to my normal level of symptoms and pain soon enough. I am just hoping that soon comes like now. My head is pounding and jaw is tense on top of all the rest. I can’t believe its Thursday and still everything is so in my face. Grateful I have nothing planned for this Sunday so hopefully I will get in a proper rest.
In these times I try to focus on the positives - so here goes:
I am finally sleeping. 2.5 days in a row (Last night it took forever to all asleep but I stayed asleep when it finally happened)
My brother took my Monday shift allowing me to rest up
I had a lovely long conversation with a customer last night and we were able to relate to each others symptoms and ailments and we both felt seen
My shit to non existent sleep is returning. I am sick of the cycle. I can now go months without much sleep and then crash with a few days which leaves me feeling more drained and then back to zombie existence.
Currently laying in bed but can’t sleep and unable to move much. Took me 4 minutes to even make my way to the bed (like 10 steps) as my legs just didn’t want to move.
I’ve scratched myself raw in places and it’s exhausting. I need to cut my nails but it’s a painful and long process. I don’t have much to cut and trying to grab what’s there without cutting flesh has become an art. This is the length I have now .. hopefully I’ll have energy to cut them before bed tonight
Gentle hugs to you hun, so good that you can still focus on some positives with all that you’re feeling! Hoping the stand up comedy helps and you can have a little chuckle my friend
