Ironmouse on her Big Progress in her Medical Condition

Pink Hamster

2 Jun 202403:44

Summary

TLDRIn this engaging conversation, the speaker shares their experience of a 'subathon' where they were live for a month straight, including sleeping on stream to meet the challenge. They discuss their struggle with a rare immune deficiency disease, CVID, which has significantly impacted their life, including their ability to sit and their need for donated plasma weekly. Despite the challenges, they express gratitude for the progress they've made in their health journey, now being more self-sufficient and living a more normal life, with hopes of one day being able to meet new people and go outside.

Takeaways

🎥 The speaker participated in a 'subathon', streaming live for an entire month straight.
😴 They managed to sleep during the stream, which was the only way they could get 8 hours of sleep.
🛏️ The speaker had their setup in bed, allowing them to sleep comfortably while being tracked on stream.
🚶 They have improved their health to the point where they can now walk and even sit in a gaming chair.
🤒 The speaker has an immune deficiency disease called CVID, which makes them susceptible to getting sick from other people's germs.
🏠 Due to their condition, they have been living with their parents and have had limited social interactions.
💉 They receive donated plasma weekly to compensate for their body's inability to produce antibodies.
📈 The frequency of plasma treatments has increased from monthly to weekly, indicating a worsening condition but also improved access to medical care.
💪 Despite the challenges, the speaker has become more self-sufficient and can take care of themselves better.
🌱 There is a sense of hope for the future, with the speaker looking forward to the day they can meet people and go outside.
🤗 The speaker expresses gratitude for the support and normalcy they have gained through their health journey.

Q & A

What was the nature of the 'subathon' mentioned in the script?
-The 'subathon' referred to in the script was a streaming marathon where the person was live for a month straight, aiming to achieve a certain number of subscribers or donations.
How did the person manage to sleep during the subathon?
-The person slept in front of their computer with their tracking on, allowing them to get 8 hours of sleep while still being visible to the audience.
What health condition does the person in the script have?
-The person has an immune deficiency disease called CVID (Common Variable Immunodeficiency), which makes them susceptible to infections from other people's germs.
How has CVID affected the person's ability to interact with others?
-Due to CVID, the person has to avoid being around people to prevent getting sick, which has limited their social interactions.
What was the person's initial streaming setup like?
-Initially, the person had to stream while lying down because of their health condition and was unable to sit in a gaming chair.
How has the person's health journey been since they started streaming?
-The person's health journey has seen significant progress since they started streaming, including being able to sit in a gaming chair and walk, which was not possible earlier.
What is the treatment the person receives for their CVID?
-The person receives donated plasma every week, as their body does not produce antibodies to fight infections.
How has the frequency of the person's plasma treatments changed over time?
-Initially, the person received plasma treatments every month, which increased to every two weeks, and now it's every week due to better access to medical care.
What impact has the person's health condition had on their family life?
-The person had to live with their parents and avoid close contact with them, including hugging, due to the risk of infection.
What is the current living situation of the person in the script?
-The person still lives with their parents but has become more self-sufficient and can take care of themselves better.
What is the person's hope for the future regarding their health condition?
-The person hopes to be able to go outside and meet people one day, which has been challenging due to their CVID.

Outlines

00:00

😴 Streaming and Sleep: A Subathon Experience

The speaker discusses a subathon where they streamed continuously for a month, managing to sleep a total of 8 hours by sleeping on stream. They describe the setup that allowed them to sleep comfortably while being tracked, revealing that they slept in front of their computer. The conversation then shifts to the speaker's health condition, an immune deficiency disease called CVID, which prevents them from being around people due to the risk of catching germs.

😷 Living with CVID: Health Journey and Progress

The speaker elaborates on their struggle with CVID, an immune deficiency that has significantly impacted their life. They mention that it took them a long time to be diagnosed and that their health issues have improved since they started streaming. They now have the ability to sit in a gaming chair and are on oxygen, which was not possible initially. The speaker also discusses the treatments they receive, including donated plasma every week to help fight infections, and how their health has gradually improved, allowing them to live a more normal life despite the condition.

🏠 Support System and Independence

The conversation continues with the speaker discussing their living situation and the support they receive from their parents, who have been taking care of them due to their health condition. They express their desire for independence and self-sufficiency, mentioning that they are now more capable of taking care of themselves. The speaker also talks about the challenges they faced during the COVID-19 pandemic, such as not being able to hug their parents or be around them, and their hope for the future to be able to meet and interact with people outside their immediate family.

Mindmap

Keywords

💡Subathon

A 'subathon' is a type of live streaming marathon where the streamer remains live for an extended period, often with the goal of gaining a certain number of subscribers or 'subs'. In the video, the streamer mentions doing a subathon where they were live for a month straight, which is a testament to their dedication and endurance.

💡Sleeping on stream

This refers to the act of a streamer sleeping while their stream is still live. It is unusual and can be seen as a way to show authenticity or vulnerability to the audience. The streamer in the script mentions sleeping in front of their computer with their tracking on, which allowed them to get some sleep during their subathon.

💡Immune deficiency disease

An immune deficiency disease is a medical condition where the immune system is less effective at fighting infections. Common Variable Immunodeficiency (CVID) is specifically mentioned in the script, which affects the body's ability to produce antibodies necessary for a healthy immune response. The streamer's life is significantly impacted by this condition, as they cannot be around people due to the risk of getting sick.

💡Oxygen

Oxygen is essential for respiration and is sometimes medically administered to patients who have difficulty breathing. In the context of the video, the streamer mentions being on oxygen, indicating a serious health condition that affects their breathing, which was a challenge when they first started streaming.

💡Health journey

A 'health journey' refers to the personal experience of dealing with health issues and the process of managing or overcoming them. The streamer's health journey is central to the video's narrative, as they discuss the progression of their condition and the improvements they have made over time, including being able to sit in a gaming chair and be more self-sufficient.

💡Donated plasma

Donated plasma is blood plasma that is collected from donors and used for medical treatments. Since the streamer has CVID and cannot produce their own antibodies, they rely on donated plasma to help fight infections. The frequency of receiving this plasma has increased from every two weeks to every week, indicating the severity of their condition.

💡Medical care

Medical care refers to the treatment and management of health conditions by healthcare professionals. The streamer mentions that they were previously unable to afford medical care, which affected the treatment of their condition. Now, with access to medical care and timely treatments, their health has improved, allowing them to live more normally.

💡Self-sufficiency

Self-sufficiency is the ability to live independently and take care of oneself without reliance on others. The streamer's journey towards self-sufficiency is highlighted in the script, showing progress in their health and ability to manage their condition with less dependence on others.

💡Social interaction

Social interaction involves communicating and engaging with others, which is a fundamental aspect of human life. The streamer's condition limits their ability to interact socially, as they cannot be around people without risking illness. This limitation has been particularly challenging during events like COVID-19, where even close family contact was restricted.

💡Streaming setup

A streaming setup refers to the physical arrangement and equipment used for live streaming. The script mentions the streamer's transition from streaming while lying down to having a setup that allows them to sit in a gaming chair, reflecting improvements in their health and comfort.

💡Gaming chair

A gaming chair is a type of comfortable and supportive chair designed for extended periods of sitting, often used by gamers and streamers. The ability to sit in a gaming chair signifies a positive change in the streamer's health, as they were previously unable to sit up due to their condition.

Highlights

Streamer did a subathon, being live for 1 month straight.

Managed to get 8 hours of sleep by sleeping on stream.

Slept in front of the computer with tracking on.

Had a setup in bed for easy access during streaming.

Previously unable to walk due to health issues.

Streamer has an immune deficiency disease called CVID.

CVID makes the streamer susceptible to getting sick from others' germs.

Streamer's health condition was unknown for a long time, causing frequent sickness.

Now able to sit in a gaming chair, previously had to stream lying down.

Health journey has been ongoing since the streamer started streaming.

Took 7 years to reach the current state of health.

Now able to meet new people and receive donated plasma.

Body doesn't make antibodies, so relies on donated plasma every week.

Medical care was unaffordable in the past, but now treatments are on time.

Despite still needing weekly plasma, the streamer can now live more normally.

Expressed hope to go outside and meet people one day.

During COVID, couldn't even hug parents or be around them.

Now more self-sufficient and able to take care of themselves.