Love & Miss you all!!
I really do love and miss you all. I had a terrifying seizure earlier this evening. I thought it would never end. I couldn't believe it once it stopped, it felt like i had been brought back to life. It breaks my heart how worried my daughter was poor thing having to see her mother go through that, it pains me so much. She was my hero though and hugged me and was so strong and rang my dad to come over as well. What a superstar.
Anyway, i just wanted to reach out and say i miss you ... and i also really miss me. My doctors are being so ridiculous and postponing everything and it is just so hard because they don't seem to understand that what i am going through is completely life changing and i just know i need a neurologist referral now... STFU with the need another week of my ADHD meds when tbh it was beginning before i even took any meds!! They won't take me seriously if i even mention sinus pressure seems to trigger it ... i still haven't been referred to a ENT for my sinus issues too. I told them that their medical negligence has definitely been a causing factor of these neurological symptoms. I was honestly pretty angry at them and i have every right to be.
I'm just thinking i still want to be creative and productive where i can but filming and recording a video just seems so hard right now when it comes ot reactions. it's already such a beautiful vulnerable experience listening to music and diving into it and i worry i will have an episode on my own while filming and it taints the whole thing. I am tempted to do a livestream and we could maybe listen to some tracks but maybe just for Patreon. I just don't know how to do that exactly, i did it years ago but could only let a few people in the live. Can anyone help me out? am i able to do it via discord? let me know. Also i can't say when we can do this as everything is all over the place and i am surrounded by friends and fam many days now as i can't always cook and clean or do pretty much anything at the mo including see, walk and talk at some points out of no where. But i feel being live with you guys could feel good and i will be distracted and the main thing, i won't be alone, you will be there with me.
Comments (3)
I wish I could help with the livestream, but I don’t know much about it. I will try my best to see what we can do, I know you used to use that duck site, I can’t remember the name. I have streamed on twitch before, but it’s been a long time. It was really easy to do though, as someone who knows nothing about live streaming stuff
Glad to hear you're surrounded by loved ones. That’s so annoying with the doctors. As a man I’ve never had a problem with a doctor believing me, but it feels like my girl friends have a new story each month about that kind of stuff. I swear, they could come in with their leg having fallen off and they’d send them out with ibuprofen for PMS cramps! I joke but it really is terrible the difference in treatment. As for finding ways to be creative and productive, the pain and symptoms will become more manageable with time and you’ll get some creative juices flowing again. Just make sure to relax and listen to your body’s signals, and you’ll find your groove. As you’re already aware I’m sure, chronic illnesses are not a linear process, but once you move past this phase of figuring all this out you’ll be able to go back to your daily life. As a “spoonie” myself (someone with a chronic illness), I know how you’re feeling, and it really really sucks to be in the in-between of onset and treatment. But take this time to lean on your loved ones and remind yourself that this is only temporary. You will get better! I like to joke with my friends when I’m going through a hard time that if I’ve made it this long with the difficulties of my life, I’m sure as hell not letting this be the one that takes me down! You got this.
So true and i have had chronic issues forever anyway but yes this one is new and intense. YEP once again women just not being taken seriously, my brother and grandad have already seen an ENT for their sinus issues and i haven't even been referred even though i have told them how depressed and unwell it makes me and how i can't even work properly because of it. They don't care and i am so sick of it, i want to try save money so i have some in case i need to pay for help which honestly sucks as it shouldn't be that way here in the UK but times are and have been changing. I agree it will become more manageable, even my tics and body contractions i don't feel afraid of so much anymore (unless they are very intense) because i have got used to them even after a few weeks. So the insane seizures as crazy as it sounds, i will get used to them too. What i really hate is the random glitching through out the day, the random few seconds of feeling detached from reality or a few seconds where i just freeze in paralysis. I have never felt more like a malfunctioned robot in my life, our brains really are just squishy computers. x I don't want it to take me down and i won't let it but my goodness do i feel so upset as it all came at a time where i was finally feeling good... trying to not look deep into it though cuz i get very sucked in to thinking i am cursed or whatever haahah ! I can't wait to be actually treated because there isn't a world where i will let the health system fuck me over that much. I will get the treatment i deserve even if i inevitably have to pay for some of it. Thank you xx