Friday, 12 July 2019. Issue #169.
In this issue: Learning to protect yourself from toxic people, and your own mental and physical wellbeing. Trying to see how far I can go in the WeGo Health Awards this year, as someone who’s not from the US! Validation of pain is liberating, as it often takes years for rare disease patients to find a correct diagnosis and willing doctor. The stigma attached to mobility aids in public, where you need to prove you ‘deserve’ to use them. A mini home pharmacy – what just about every spoonie owns! ME/CFS is invisible torture, draining you of energy with every movement and breath you take. Mess at home are signs of life, and it’s okay if you can’t keep everything in perfect order all the time. Waking up one morning with fatigue, which is still there six years later. The strange turn of friendships with chronic illness. As a caregiver, you may be doing all you can to support your loved one, yet still struggle to understand their ultimate needs.
“I had to decide what mattered more to me, protecting my physical & #mentalhealth fr further damage, or investing my time in people who often didn’t take the time to understand what I was dealing with”: https://t.co/URPKTNUf3z @whatapain_blog #friendships #society #ChronicIllness
— A Chronic Voice (@AChVoice) July 6, 2019
Hello friends! As someone who's not fr the US, I wanted to try & see how far I could go on the @wegohealth awards this year! Thank you for any #endorsements on my profile page here (you can vote for as many categories as you like)! https://t.co/LGlpxakHWr #ChronicIllness #spoonie
— A Chronic Voice (@AChVoice) July 7, 2019
"#Validation. The word itself is liberating. The majority of #raredisease #patients take yrs to obtain the correct #diagnosis—years searching for that special #doctor dedicated enough to establish a cause for their miscellaneous symptoms": https://t.co/q1GJM2jO0T @hospitalprncss
— A Chronic Voice (@AChVoice) July 7, 2019
"There is a #stigma attached to #mobilityaids in #society, where you’re expected to be completely #paralysed to ‘qualify’ the use of one. The younger you are, the closer the scrutiny": https://t.co/1XecsAmsXH #awareness
— A Chronic Voice (@AChVoice) July 7, 2019
"Then May came by and I became a reluctant host to a #stomachbug. I unleashed the full works of my mini #homepharmacy (we have all one as a #spoonie!) onto it, but couldn’t eat or drink much for a week": https://t.co/yOpBskHfh5 #InvisibleIllness #prompts
— A Chronic Voice (@AChVoice) July 9, 2019
“ME is like carrying a backpack full of lead bricks everywhere. It drains yr every breath, every word, every thought, yr sleep & every step u take..It’s invisible torture”: https://t.co/UvWJuA8WEP @Not_Just_Tired @Little_Ms_Wise #mecfs #pwme #InvisibleIllness #ChronicFatigue
— A Chronic Voice (@AChVoice) July 8, 2019
“#Itsokay that the floors aren't shiny, or vacuumed every other day. It's okay if there is a little dog hair here or there. It's okay if #reallife happens and is on display”: https://t.co/yLi4ec230l @worldseesnormal #ChronicLife #MentalHealth
— A Chronic Voice (@AChVoice) July 4, 2019
“One morning I woke up and felt that something was very wrong, I blamed it on #exhaustion and not taking care of myself…I thought it would go away in a day or two, 6 years later it’s still here”: https://t.co/rTQ4ivz93d @chronic_hopeful #spoonie #pwME #ChronicFatigue #mecfs
— A Chronic Voice (@AChVoice) July 5, 2019
“It’s amazing how #chronicillness turns friends into #strangers and strangers into friends” – love how @JourneyFog used this month’s #writingprompts to talk about #friendships as a #spoonie! https://t.co/GUtNyls7ew
— A Chronic Voice (@AChVoice) July 6, 2019
"There are many unsung #caregivers in the background who try their best to be #supportive. Yet you may still feel inadequate, and struggle to understand what it is that your loved ones really need": https://t.co/wl9fCNgyWq #caregiving #caregiver #HealthAndWellness
— A Chronic Voice (@AChVoice) July 11, 2019
*Note: This article is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.
Read More: Tips & Tools to Help Regain Independence with a Disability or Chronic Illness
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