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What Would You Like To Do For The Rest of Your Life Despite Chronic Illness?

I'm so aware reading articles and blog posts can be tiring and time consuming, especially when living with chronic illness.

I've been writing for #TheMighty for over 6 years, blogging for 8 years and had my first book published in 2022.

I love that usually when my writing is published in any form, I get feedback from some readers that it was just what they needed to read.

Sometimes that might be feedback from one person who was in a place where they needed someone to really understand what they were going through. Sometimes the posts reaonate with 100's if not 100 000's of people. I really never know what the response will be, it's so hit and miss.

My aim with my writing and patient advocacy activities has always been to reach at least one person in their hour of need. That makes it all worthwhile.

With this blog post, I'd really like to encourage you to read it if the following applies to you:

1. You feel chronic illness has taken everything from you and it's all you can think about or,

2. You feel like you are at the point where you want to do more with your life, despite chronic illness but need some help or,

3. You just feel stuck and are not sure how to move forward or what you might be capable of doing.

This post is available on my blog and on my Podcast if listening, rather than reading, is easier for you.

Both links are below.

Above all, thank you to everyone who does take the time to read and give me feedback. I appreciate it so much.

Sam 💚

What Would You Like To Do For The Rest of Your Life?

Listen to the most recent episode of my podcast: What Would You Like To Do For The Rest of Your Life, Despite Chronic Illness?

#Podcast #PatientAdvocates #Blog #Plans #RareDisease #Arthritis #AutoimmuneDisease #Writing #Support

What Would You Like To Do For The Rest of Your Life, Despite Chronic Illness? by Medical Musings With Sam

When we live with chronic illness, the concept of continuous improvement seems almost ridiculous doesn’t it. But is it? Our lives, while significantly impacted by our diseases, don’t need to be completely dictated by them. We can make changes which will catapult us into a new future. We can see our new circumstances as a time of opportunity, rather than a time of retreat and despair.
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Me, Migraines and Mobility Aids

Hi Mighty community. I hope all are having a nice start to 2023. I have an article that discusses my migraine diagnosis, ruling out other conditions and aids that have helped me over time. I hope that you will take the time to read it. Feel free to comment and share if you can relate to anything. #chronicillnesswarrior #PatientAdvocates #Migrainewarrior #NotAshamed

Don’t Judge Me by My Mobility Aids |

Chronic migraine and vertigo aren't a great combo for ease of movement.
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Mental Hospital Tycoon; A Total Insult to Mental Health Patients and Professionals Alike

Who doesn't love a good tycoon style game? You get to manage a business that you'd otherwise never get to manage. You get to exert some control over something in the midst of chronic illnesses that constantly threaten your grasp of controlling the circumstances of your own life. It's an escape. Sometimes medical based tycoon style games like Project Hospital, for instance, are quite therapeutic as you help find diagnosis for patients and build a facility that you wish could be accessible to you somewhere. It puts you in a place of figuring out a diagnosis when your own is so complex that even the best doctors are still going "heck if I know!". It's sort of a break from your own illness firna moment and instead of the constant endless loops you face with your illness, you find yourself facing someone else's but there's a linear process to discovering the source of the problem. If life only worked that way all the time!

But then comes the misuse of the format. Recently I was on the Play Store when I came across a game that says "build your own mental hospital". From the get go it sounded cringy to me. However, a game in which you create a mental health facility is not at all a bad idea. It would empower patients to create the types of environments we want to really see and possibly give insight to professionals about what may really be beneficial for us and helpful if it let us design treatments etc. But this is not that game. It depicts stereotypes and not just stereotypes, but the blatant mistreatment of those with mental illness and further stigmatizes them. The game features restraints holding people unwiingly down onto beds, lock ups, beatings, patients escaping and stealing trucks on a joyride, features patients reminiscent of a band of stereotypical mocks of absolutely inaccurate depictions of mental health conditions, treatments that not even some of the worst former institutions would utilize, and altogether is a dangerous perpetuation of a stigma that still results in needless loss of life for those suffering from mental health conditions because of stereotypes like this that make people afraid of seeking mental health treatment. This depiction of a mental hospital is downright irresponsible, insulting (both to patients and mental health professionals alike), and quite dangerous should a child be exposed to this and think this is the standard treatment of the mentally ill in our society or that people with mental health conditions are to be feared, treated as inferior, or abused and it's all just par for the course, fun and games, etc. Perhaps the most disturbing overtone is that the patients deserve what they have coming.

What's your take?
Is it just a harmless game poking fun at the most serious parts of life to take the edge off? Or is this a problematic, dangerous depiction that should be removed from the Google Play app store?

I tend to think the later is my personal view.
#MentalHealth #Depression #CPTSD #PTSD #VideoGames #App #appreview #Anxiety #ObsessiveCompulsiveDisorder #LearningDisabilities #PatientAdvocates


Patient abandonment #ethics #PatientAndDoctorExperiences #PatientAdvocates

Who to Contact when hospice says they’re coming to evaluate while patient organs maybe failing and never show up. Hospice said they were coming and just never showed up. Told us they were doing us charity. I don’t even know how to fathom or handle this#neglect

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What is 1 Sentance That Saved your Life ?

In my most recent article ( go check it out ! 😉). I share about the “ 6 Words That Saved My Life in the ICU “. I want to know . Have you had a similar experience. Without knowing . Did someone utter a phrase .. . A sentence .. That saved your life, changed your life , or changed your perspective on life ? If so , What was it? #MightyTogether #PatientAdvocates #MentalHealth #MedicalTrauma #ChronicIllness


Talking to a neurologist #IdiopathicIntracranialHypertension #Anxiety #Aspergers #PatientAdvocates #Bipolar1Disorder #ADHD


So I finally got a referral to see a neurologist. I think...I have to double check with my eye doctor to make sure it’s gone through.

Based on the symptoms, I’m fairly certain I developed ME and/or CFS after I had viral meningitis last year. It also makes sense with the IIH I have been diagnosed with (ironically a month before the meningitis). I thought the IIH symptoms were caused by severe migraines (which run in the family, anxiety&stress, and malnutrition. I finally went to the doctor about it after I almost passed out at work.

I think I had IIH for several years previously, but that not the point.

How do I talk to the neurologist about my suspicions and personal history?

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My last thought was about coronavirus memes - this is just adding to it as I'm sure many of you have noticed like I have that many people (who are not at risk) don't take their health seriously or keep those at risk in mind. #CoronaVirus #ChronicIllness #PatientAdvocates #Awareness

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