Friday, 18 January 2019. Issue #145.
In this issue: The finalé to the pain flare series – what to do when you end up in a flare despite self-care? The ability to keep clean is something healthy people take for granted, but requires a lot of energy with chronic fatigue. Learning to live with pain, even if you never really get used to it. We’ve lost a lot to chronic illness, but we’re still alive and standing. Choosing to be happy whilst in pain, instead of being both unhappy and in pain. The sadness of losing a career and identity you took pride in. The potential for developing small fibre neuropathy and thus itchiness with fibromyalgia. The grief in a relationship when your partner becomes your caregiver instead of lover. Even if you’re craving exercise, doing so can cause a flare up in ME/CFS. When you’re immunosuppressed, even simple illnesses can become deadly.
[New Post] "In part 1 everyone shared what their biggest #triggers are, and in part 2 their best tips for prevention…But what happens if you land right smack in the middle of that dreaded flare anyway?": https://t.co/9PemoYlfr7 #flareups #spoonies #chronicpain #mondayblogs
— A Chronic Voice (@AChVoice) January 14, 2019
“Keeping on top of #personalhygiene is where I tend to use most of my energy. It’s an important part of life and one that healthy people take for granted, but it brings with it so many #challenges”: https://t.co/QJ9Ncsq6HM @JourneyFog #mecfs #pwme #chronicillness
— A Chronic Voice (@AChVoice) January 13, 2019
“I suppose I should be used to living with my #pain by now. But I don’t think anyone ever really gets used to that. But you can learn to live with it”: https://t.co/AUIx9sOlqr @DespitePainBlog #chroniclife #intentions #mentalhealth #spoonie
— A Chronic Voice (@AChVoice) January 13, 2019
“We’ve definitely lost something along with #chronicillness, there’s no denying that. But we’re still here and alive; perhaps #broken, beaten up and fragile, but still here”: https://t.co/QgNJBCn4Af #qotd #inspiration #spoonie pic.twitter.com/0M2aeeW7vH
— A Chronic Voice (@AChVoice) January 11, 2019
“Things got much better when I changed my #mindset, focused on the positives, and decided it was much better to be in pain and happy, rather than be unhappy and in pain”: https://t.co/pqLbTgOBOQ @notebksglasses #positivity #mentalhealth #chronicpain #chronicillness
— A Chronic Voice (@AChVoice) January 13, 2019
“I was a #nurse in a former life. It still hurts to say “was” rather than “am” – one of my greatest sadnesses to come with chronic health and #disability has been losing my #career and registration”: https://t.co/dJkRF4Sr67 @clairesaul1 #spoonie #chroniclife
— A Chronic Voice (@AChVoice) January 11, 2019
“there has been research indicating we can get #smallfibreneuropathy with #fibromyalgia. Either way, #paresthesia can cause an #itchy sensation, or prickling sensations and even numbness”: https://t.co/kJcymmxUhS @nikki_albert #chronicpain
— A Chronic Voice (@AChVoice) January 16, 2019
“My #husband has gone from being my lover to my #caregiver — our #relationship has slowly but surely changed and it feels like there is no way back. I just feel so sad”: https://t.co/Ayc6byAkJP #spooniesecrets #chronicillness
— A Chronic Voice (@AChVoice) January 15, 2019
[Archives] "Then there’s the endless #exercise promotions. While I used to love (crave, even) to exercise, any attempt to do so will cause me to relapse and experience an extreme #flareup in my symptoms": https://t.co/frnzclqd7H @lisaalioto #PEM #chronicfatiguesyndrome #spoonie
— A Chronic Voice (@AChVoice) January 15, 2019
“I hope that this also further explains the extent to which #immunosuppression affects “regular” #illness. They weren’t sure that I would be safe in the #ICU”: https://t.co/rVNPbNMsRu @kmitchellauthor #chronicpain #sepsis
— A Chronic Voice (@AChVoice) January 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.
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I’m there today..feels like the IBD is flaring despite doing ALL THE THINGS. Trying to take things in stride..what else can I do?
Not much but ride it out, I guess 🙁 I’m so sorry to hear this, really sucks when you’ve done your best and it still feels like it’s not enough. Guess our bodies need time to repair, but damn, less pain would be nice hey? Sending you lots of love and strength x