Chronic Epstein-Barr Virus

It's that time again! Tell me below 3 things that you're thankful for. Gratitude is a total game changer for mental health! ✨
#PTSD #MentalHealth #Addiction #AnorexiaNervosa #BipolarDisorder #Anxiety #ChronicEpsteinBarrVirus #Lupus #Cancers

Hey, my loves!🥰 You may feel quite unwell on a regular basis and wish someone had a magic wand to just make it go away. I have ME/CFS and fibromyalgia, so I know first hand what it feels like to want to be untethered from the shackles of chronic illness. I don’t feel like having company, yet I still want to be around people sometimes. Yet, the isolation and loneliness can be suffocating, so I’ve asked myself how I can experience joy and happiness while living with a chronic illness.

The answer is very clear. I must seek out those things that bring me life, because they certainly won’t come knocking at my door! No one else is ultimately responsible for making me happy but me! And forget waiting to feel better before your begin engaging in fun activities. Really?!🫩

I write down activities in my planner at the beginning of each month and implement them as best I can! Here are some examples of things I’ve put on my schedule to add joy to my life:
🌻Plan monthly Sunday family potluck get-togethers. I make the schedule and send text reminders.
🌻Create an online book discussion group of close friends, with someone else as the leader.
🌻Plan a Netflix movie party, where everyone watches the same movie, together, from their home in their pjs!

If you notice, I only plan what I feel capable of doing, most of which are online. So even on a flare day, I could still likely participate in a Netflix Party.😋 I do not wait for other people to plan the “thing” all of the time. If there is something that I feel I need, like companionship, I go through the motions of meeting that need for myself, instead of waiting for someone else to do it for me. We experience enough of the rough stuff to last us for a lifetime, so let’s try to balance out life with some joy!🤗

What are some enjoyable ideas that you will place on your calendar? Remember to be honest with yourself and consider your health issue. We all have different capacities. Pop your ideas in the comment section below! Be well! Wendy😘 #ChronicFatigue #MentalHealth #MyalgicEncephalomyelitis #ChronicEpsteinBarrVirus #Fibromyalgia #MultipleChemicalSensitivity

Which tip do you need today? This is a handy little guide to save and refer back to.
Mine is in the comments, I'd love to see yours!
#BorderlinePersonalityDisorder #Grief #MentalHealth #BipolarDisorder #BipolarDepression #Anxiety #Addiction #ADHD #Schizophrenia #SchizoaffectiveDisorder #ChronicEpsteinBarrVirus #ChronicFatigueSyndrome #Fibromyalgia

Hey, y’all!🥰 Eczema? Dry, itchy skin? Check out what I use!❤️ youtu.be/o_50QqwUKCI #MyalgicEncephalomyelitis #ChronicFatigue #Fibromyalgia #HypothyroidismUnderactiveThyroidDisease #ChronicEpsteinBarrVirus

There can be a range of reasons why we may feel physical discomfort, pain, and fatigue while spending our days in bed—from health symptoms and muscle tension to stiffness, even stress. Finding relief and some level of comfort can be a constant challenge, but it’s also essential for maintaining a sense of balance.

For some, it may involve using supportive pillows or cushions to adjust their body alignment and alleviate pressure points. Others may find relief through gentle stretches or movement, when possible, or by using heating pads or cold compresses to soothe sore muscles. Breathing exercises or practicing regular hobbies can also help reduce stress and ease the mind, which in turn can ease physical discomfort.

Sometimes, it’s about creating a comfortable environment—adjusting room temperature or dimming lights to promote relaxation. And for many, reaching out to loved ones or healthcare providers for advice or support can provide both physical and emotional comfort.

What helps you manage physical discomfort, pain, or fatigue while you’re in bed?

#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #ChronicFatigue #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis
#Lupus #Cancers #Gastroparesis #MultipleSclerosis #RheumatoidArthritis #InflammatoryBowelDiseaseIBD #ChronicEpsteinBarrVirus #MentalHealth #ChronicDepression #Anxiety #PanicAttacks #InvisibleIllness
#alwaysinbed

7 years ago I was evaluated by a neuro ophthalmologist due to a detached retina and sudden vision loss. My retinalogist noticed some lesions on my brain in the MRI and suggested I see a neurologist. He found them “insignificant” but due to my sudden vision loss sent me for evaluation. I ended up at an immunologist who ordered a massive amount of blood work. After review I was asked back for a consultation. He then told me after process of elimination he decided to dx me with Fibromyalgia. He also stated I had 7 out of 8 indicators for MS. Not enough for a positive dx.
All bloodwork pointed to a high level if Epstein Barr virus as well.
Now 7 years later and after fatigue, left side pain in my arm and leg. Numbness in my hand burning pain in my back and hip. Weakness in my legs and ankle. My legs feel like I’ve stepped in concrete most of the time. I have vision distortion and dizziness. Skin issues, rash sensitivity to sun on my arms and legs.
My provider is once again sending me to the neurologist and requesting a head MRI. I’m so tired of all the evaluation and no answers. I’m tired of being treated like I’m faking not feeling good. I’ve aged 25 years in the last 10.
Has anyone else had this much trouble with getting a diagnosis? Any suggestions on how to deal with this ?