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MythologicalMayhem
17,919 M Progress Road 6
not doing good
PathStep 105 Compassion hearts1,040 Forum posts254 Forum upvotes378 Current upvotes378 Age GroupAdult Last activeFebruary, 2024 Member sinceFebruary 21, 2015
Bio

Learning how to cope with and manage my mental and physical health and develop self compassion.







Recent forum posts
Finally getting somewhere! (IBD)
Disability Support / by MythologicalMayhem
Last post
 November 27th, 2022
...See more For the past 6 years, I've been confident that I've been suffering from IBD flares. I would get quite severe flares with all of the symptoms you expect from IBD, as well as minor short lived flares and these would happen a few times a year. I had investigations done which showed inflammation in the bowel but doctors didn't diagnose me with anything because I didn't present like other IBD sufferers and a lot of my tests came back normal. I was told I'd have to wait until it got severe to get anywhere with a diagnosis, so I was left untreated for 6 years. Recently I went into my longest and most severe flare up which has lasted about 3 weeks now. I've got a high pain threshold and the only time I've cried because of pain was when I dislocated my knee, but this pain led to me crying on the toilet multiple times and howling like I was in labour which ultimately led to a trip to A&E; the third time I've been sent to hospital for this. As you can imagine, I'd been feeling so fed up with all of this and it was getting me down because I knew there was an issue and I knew what I was experiencing wasn't normal but no-one was taking it seriously and helping me. Work was also on my back being very unsympathetic, assuming I was off with IBS cramps! 😡 Well I very luckily came across a really kind and caring doctor who ran some tests and finally, it's got severe enough to show up on tests this time, except I'm now on the very far end of the inflammation scale and my doctor asked if I wanted to be admitted to hospital but I'm managing it enough at home thankfully. He also signed me off work for a while so I now can rest properly without having work on my back, whilst I wait for my (third or fourth) gastro referral to come through. Ironically, all this news came through the same day I left work early because I was still having symptoms. I expected the results to come back normal but thankfully they didn't and now hopefully the gastroenterologists will be able to diagnose me and I can start treatment.
Would like to try having a long term listener
General Support / by MythologicalMayhem
Last post
 September 27th, 2021
...See more Hello, I'm a listener here but I often put my own mental health to the side a lot when I should really speak a bit more about the issues I deal with and how I'm feeling. So I thought it'd be nice to have a long term listener who I can message (maybe even when they're offline and they can get back to me, ideally within 24 hours!) about what I'm going through. I would like a reliable and empathic listener who I know won't disappear on me unless they let me know! They will need to be okay with some sensitive topics, and I might need encouragement to open up about things sometimes. I'm open to having more than one long term listener, I think it would be easier to share the load to more than one person sometimes, especially if one becomes unavailable. Just a little bit about me. I'm 26 and I am a student with health problems and I also work in healthcare. I have past trauma, living in a dysfunctional household, obviously have health issues to contend with, I have a low self esteem, issues with relationships and general difficulties in every day, social life. I believe listeners can send me a message but otherwise, I look forward to any responses here! Thanks. :)
Finding it hard to identify with the 'disability' label/feeling not 'disabled' enough
Disability Support / by MythologicalMayhem
Last post
 December 16th, 2020
...See more I'm wondering if any others are feeling this way. I was born with chronic illnesses such as asthma, but then as I got older, I was diagnosed with a couple of more rarer conditions and one of them is treated daily with medication, otherwise worsening fatigue and symptoms would immediately return. Despite my health conditions, I've never considered myself to be disabled. I go to work (part time), I study (part time, at home), I can walk, talk, take care of myself etc. But I get days where I can't do anything extra because of fatigue, or I have to cancel an event or I'm too tired or in pain to do anything/move. It's rare that I get a day where nothing is bothering me, but that's my normal and I always tell myself that lots of people feel this way, that outsiders would still argue against me being classed as disabled because I lead a fairly normal life on the surface. I know my family would totally argue against it if I said I was disabled, although my nan who has fibromyalgia has a blue badge and my mother has said to my dad that I have invisible disabilities. But everyone else would give me a hard time (I don't have supportive family). I guess disabled feels like a strong word. It wasn't until my university identified me as disabled and only when my counsellor pushed me to apply for disabled student support (which I did eventually a couple of years into my course), that this label/identity of disability has cropped up. Also in my work, I see lots of people wearing those 'I have a hidden disability so can't wear a mask' lanyards and that's usually only because they have asthma, not the other health complications that I have on top of asthma. Yet they confidently show to everyone they have an invisible illness whilst I do everything I can to hide mine. I saw a post by a charity that showed a young, seemingly fit and healthy man talk about his condition (same as mine) and his diabetes and refer to himself as disabled/having a disability/invisible illness, which made me think. I saw a visual post that was showing how disability can be invisible and it was released by another charity that's related to my condition, seemingly identifying my conditions as disabilities. I also saw this post below which I found very validating which says 53.6% of disabled people are working and 93% don't use wheelchairs. It also simply says that a mental/physical health condition comes under disability. So I'm not sure if that's implying that all health conditions = disability? What are your thoughts on this visual? When I applied for disabled student support, my doctor said that I didn't have a disability, yet he ticked yes to the definition of a disability. So I'm always feeling like I'm in middle of this label - neither disabled nor healthy. I feel like I don't belong or identify with either group and I'm in this middle ground with less support or understanding available to me. I know that I am not in good health, but I wouldn't dare to claim I'm disabled to someone because I'd feel fraudulent, that I'm exaggerating compared to someone who can't work or look after themselves, or I'd feel that they would scrutinise my every move, to see if I was indeed disabled enough. I apologise for my fairly disorganised thoughts, but I just need to get them down somewhere. So what do you determine as a disability? Do you automatically become disabled if you get a specific label? I'm so confused and lost with all of this and my feelings. I feel like few people understand this.
Slow mode in group chats
Site Updates / by MythologicalMayhem
Last post
 June 9th, 2020
...See more When the chat gets very busy/fast, it can be hard to keep up for some people and you can't even heart a message in time before it vanishes. This has been a problem since I joined here many years ago now. So why can't a 'slow mode' be implemented? When a number of messages are sent within a space of time, slow mode is triggered and people have to wait 30 seconds between each message and you could maybe trigger it for 15 minutes or so. Or mods could turn it on or off if they feel it's getting too fast or members mention the speed of the chat. This is a function on other websites. It's used on Discord, so I'm surprised it's not being used here. It might even help people actually pay attention to messages more and think about what they want to say before they post.
Postural Orthostatic Tachycardia Syndrome
Disability Support / by MythologicalMayhem
Last post
 March 14th, 2022
...See more The following information is available at https://www.potsuk.org [https://www.potsuk.org/what_is_pots2]. Postural position of the body Tachycardia increased heart rate Syndrome a combination of symptoms What is POTs? The Postural Tachycardia Syndrome (PoTS) is an abnormality of the autonomic nervous system (sometimes called ‘dysautonomia). The autonomic nervous system (ANS) is in charge of all bodily functions that we dont have to think about, such as: - Heart rate and blood pressure regulation - Digestion - Bladder control - Sweating - Stress response The sympathetic nervous system is part of the autonomic nervous system. It produces the ‘fight or flight or ‘stress response. When activated, a chemical called norepinephrine is released. Amongst other things, this causes an increase in heart rate and blood pressure. When a healthy person stands up, blood vessels contract and heart rate increases slightly to maintain blood supply to heart and brain. In PoTS, this automatic adjustment to upright posture is not working correctly, resulting in an excessive rise in heart rate, increased norepinephrine in the blood and altered blood flow to the brain. Diagnosis To be diagnosed with PoTS, an individual must experience a group of symptoms in the upright position (usually standing) that are relieved by lying down. A persistent increase in heart rate of 30 beats per minute (40 bpm if under 19 years of age) should be recorded within ten minutes of standing. Blood pressure (BP) does not always drop in PoTS. A common test for POTs is the Tilt Table Test. This involves lying on a table that can be tilted to an angle of 60 to 70 degrees in a quiet, dimly lit, temperature controlled room. Blood pressure and heart rate are recorded in a continuous manner. After a period of 5 to 20 minutes of lying flat, the table is tilted. Although a diagnosis of PoTS should be made by an increase in heart rate of 30 bpm within the first 10 minutes, this upright position can last between 10 and 45 minutes. The patient will be asked how they are feeling during the test, so symptoms can be matched with heart rate and blood pressure. The test will end if your blood pressure becomes too low, satisfactory results have been obtained, or the maximum time has elapsed. Symptoms Symptoms can be debilitating, ranging from mild to severe and varying from day to day. - Dizziness or light-headedness or presyncope (almost fainting) - Syncope (fainting or blackouts): Approximately 30 % of people with PoTS experience fainting. - Palpitations - Headaches - Tiredness or weakness - Brain fog - Shakiness or Tremulousness - Shortness of breath - Chest pain - Excessive or patchy reduced sweating - Gut problems - Poor sleep - Visual problems - Bladder problems Triggers which may worsen symptoms - Excess heat - After eating – especially refined carbohydrate eg sugar, white flour - Speed of positional change – dont stand up quickly - Dehydration - Time of day (may be worse in the morning, especially rising after wakening) - Menstrual period - Deconditioning or prolonged bed rest - Alcohol which dilates blood vessels - Exercise (occasional exercise can cause one to feel worse, but an ongoing exercise program can improve symptoms) Some conditions related to POTs - Chronic Fatigue Syndrome - Joint hypermobility syndrome / hypermobile Ehlers Danlos Syndrome - Mast Cell Activation Disorder Patients can be very disabled by their symptoms. Fortunately, for many patients, symptoms will improve with a combination of life style changes and medication. However some will have problems over many years.
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