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How to cope when your loved ones struggle with chronic pain or illness?

When it’s sad it’s out of your control or you wish they would look after their health a little more push themselves to eat a bit healthier or exercise but they always feel awful and in bad health with many ailments especially my mom. And feel bad about the financial situation since my dad is the breadwinner and my mom got sick pretty young with heart disease and other things. My sister has Ulcerative Colitis etc etc #ChronicPain #mom #mother #Parents #Family #Sickness #illness #Health #eating #MentalHealth

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ALL MY LIFE MEDICAL TEST SUBJECT

Burnt-out from the ignorance that comes from the mouths of so called trained medical professionals whom attended society's schools to acquire a stamp of approval that they specialize in whatever 🙄 and obtained A DEGREE.

#Allergies #SpinalMuscularAtrophy #Anxiety #GastroesophagealRefluxDisease #SpinalStenosis #ChronicFatigueSyndrome #BrainInjury #MentalHealth #CardiovascularDisease #RheumatoidArthritis #Osteoporosis #Peripheral #InflammatoryBowelDiseaseIBD #InflammatoryArthritis #CrohnsDisease

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How to help an alcoholic without hurting yourself

Part 1 of 2 In this article, you’ll find practical ideas to help you:

Understand the biggest needs of someone suffering from alcoholism

Distinguish between helping vs enabling

Encourage a loved one to seek treatment

Before discussing this topic in detail, it’s important for you to understand a hard truth about having a loved one suffering from alcoholism: It is not within your power to fix or cure this person. Recovery requires cooperation on the part of the person dependent on alcohol, a decision that things need to change radically. Once someone has become addicted, the goal of “cutting down” on alcohol is a lie that often enables the person to continue alcohol abuse and all its painful consequences. Accordingly, breaking addiction begins when a person recognizes his or her alcohol dependence and agrees that it needs to end.

The Biggest Needs of a Person with Alcohol Addiction

It goes without saying that the biggest need of an alcoholic is recovery. Alcoholism not only damages the health of the addicted but risks financial problems stemming from the behavioral problems (e.g. inconsistency at work, excessive absenteeism, etc.) associated with the disease. The problems of alcoholism also extend beyond the person suffering from the addiction. Common alcoholic behaviors such as drunk driving put the welfare of others in harm’s way.

Substance abuse in any form is a health risk. With respect to alcohol, addiction can produce a variety of medical problems from high blood pressure and heart disease to problems with liver function. An alcoholic may begin to skip meals or otherwise eat poorly. If an alcoholic has not yet agreed to treatment, you should still encourage a health diet, proper nutrition, and regular medical check-ups.

An understanding of alcoholism is another extremely important need for an alcoholic. Family and friends who have self-educated on alcoholism will avoid:

Blaming themselves for an alcoholic’s drinking

Making excuses for a loved one’s drinking or covering it up

Believing common lies alcoholics tell themselves (and others) to justify their drinking

Behaving in a way that is problematic around an alcoholic (such as drinking in their presence or leaving alcohol in a place where it is easily accessible)

Financially supporting an alcoholic so he or she may continue drinking despite losing employment due to compulsive drinking

The Importance of Self-Care for the Family & Friends of an Alcoholic

Alcoholism, like many other illnesses, affects not only a person who suffers from the condition but also the loved ones within his or her life. Addiction can manifest itself in innumerable ways that hurt those around the person dependent on alcohol. Most notably, typically loved ones spend an extreme amount of effort and energy on the alcoholic to address consequences of drinking and perform obligations that the alcoholic failed to perform. In this scenario, self-care can fall by the wayside.

If you have someone in your life struggling with alcoholism, remember to maintain a self-care routine to preserve your physical and emotional health. Consider the following self-care practices:

Attending a support group for people with alcoholic loved ones (e.g. Al-Anon)

Getting regular sleep

Exercising

Regularly pursuing activities you enjoy (e.g. movies, concerts, museums, sports events)

Obtaining therapy if you struggle with feelings of depression or regret or fear

Writing your feelings in a journal

Maintaining a healthy diet

Understand Alcoholism Goes Beyond Drinking

Alcohol addiction has a host of negative behaviors associated with it because alcohol affects the way the brain functions. Some of the activities that may occur during alcoholism include:

Spending money on alcohol that was meant for the family (e.g. food, gas, insurance, savings, etc.)

Lying about quitting alcohol or lying about the extent of drinking

Failing to control anger or impulsive behavior

Engaging in reckless behavior such as drunk driving

Losing inhibitions while drunk and engaging in promiscuity

Acting in a manipulative or secretive manner

During therapy, alcoholics are encouraged to recognize these behaviors and work on replacing them with healthier ways of behaving that preserve important relationships and build trust.

Helping an Alcoholic vs. Enabling an Alcoholic

Loved ones wish to protect an alcoholic from the dangerous consequences of this addiction. This is especially true when the alcoholic is a son or daughter, though it can equally apply to a spouse. Unfortunately, this protective instinct can transform into enablement of addiction because it creates an environment where the personal costs of addiction are reduced for the person

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Parental Guilt

For all the unintentionally insensitive and thoughtless things people have said to me over the years, no one has ever asked me the question, “Do you feel guilty for passing the gene for SELENON related myopathy to your sons?” Perhaps this question is a step beyond what most people consider good decorum, however I wonder how many people have thought it and stopped themselves from asking it out loud.

Now that I’ve got you thinking about the question, I’ll answer it.

I feel guilty for many things as a parent, but this is not one of them.

SELEON related myopathy is autosomal recessive which means both my husband and I need to have the gene for the disease to appear in our children. This is exactly what happened in our case. Had I chosen a different father for my children (To be clear, I don’t regret my choice), the recessive gene likely would have remained hidden for future generations to discover. Maybe it would have never surfaced. We have no way of knowing how long our disease causing gene has been lurking in our gene pool.

On the other hand, the gene for this disease and many others can mutate spontaneously. Meaning, a disease causing gene can appear in the affected child and not the parents. Was the gene passed down to me from my great great great grandfather? Or did it just appear in me? Same for my husband. We have some clues to this puzzle but we will never know the full story.

Also, parents pass along all sorts of undesirable genes to their children – ones that cause common ailments such as heart disease, ones that cause mental illness, or even ones that give the child a nose way too big for his or her face.

The more I learn about genetics, the more procreation seems like a roll of the dice. You never know what might happen even if you do prenatal genetic testing. Currently no prenatal genetic test includes all possible rare diseases and new rare diseases are discovered every day. When our boys were born less than two decades ago, a genetic test did not exist for their disease.

While science will certainly get there someday, we can’t genetically engineer our children to rid them of all possible diseases. What you get is what you get and sometimes unlikely events unfold.

I can live with that.

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Cardiac Exercise Test (not for ME/CFS)

I am having a cardiac doppler and treadmill stress test next week. The test is to rule out cardiovascular issues beyond dysautomnia (including orthstatic intolerance) and ME/CFS (my doctor has diagnosed those based on history/discussion alone). Due to family history and long lasting breathing difficulty and chestbpain following COVID-19 infection, my cardiologist wants to rule out cardiovascular disease or heart issues. Of course I will most likely have horrible PEM afterwards because of ME/CFS. I might also have trouble during the test due to heart rate spikes (might be POTS or might be random- but they happen).
The test is on Wednesday morning and I have cleared my calendar until Sunday.

Any other advice from the trenches?

Since we are hoping/expecting for normal results as far as cardiovascular disease, what should I expect as far as symptoms/results due to ME/CFS? Anything I should ask about to support getting a wheelchair?

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