Chronic Epstein-Barr Virus

We all have different needs and preferences when it comes to picking the right mattress, especially for those of us who spend a lot of our time in bed. Some of us may prefer firm mattresses, others soft or memory foam, maybe even Tempur-Pedic (or for the real adventurers among us… water!).

What type of mattress do you prefer? I like my mattress more on the firm side with gel infused breathable memory foam.

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

When you have worked at a company before and considered one location your "work home" and you leave a high mental stress job for that, that was my life. But then the company that I came back to work for set up a new payscale that is impossible to achieve if you are working full-time hours. Then, you have to remember that this is a type of hair salon. My personal paychecks have been dwindling and my husband has had to pick up the pieces with his paycheck which he makes less per hour than me and he is bringing home the majority of the money. That was and is a red flag. Now, on the cusp of the Christmas holiday, I have officially been diagnosed and tested positive for Covid-19 for a third time in two years. And I did in fact get the Pfizer shots. I know who gave it to me, both personally and professionally. And if my company has a problem with it I will stand up for myself and if need be take thus other person down. My pcp wants me out for either 5 days for the fever, but if that doesn't calm down for 10. I unfortunately was too late to take any of the proven meds that combat this. Because the old motto at my job of "if you have a fever don't come in, no matter what", no longer holds true. Now it is "work even if you are contagious unless it bad enough someone sends you home". And then they require that you spend money you don't have, even if you don't have insurance like myself (it's too expensive atm and be able to pay rent), on both doctors and covid testing. I have received permission from my husband and others to when opportunity knocks jump. And it most certainly has. Simply waiting on the last interview but have already received an informal offer that pays several more dollars per hour. Is it at a burger place, yes, but I need security that I haven't had for a long time, and I would rather do that than be at a job that doesn't value me or any other employee. It's been a tough road especially battling Covid-19 with a completely compromised immune system. But I'm learning where I would rather be in life and where I want to go. Yes it's taken me 10 years of doing hair to come to this point but at least I made it here. Even battling the plague I still have hope. And my family has my back and wants me to get better, even though when I got the news all I wanted for Christmas was to be with my family. But my awesome mom, and grandfather made plans, and we'll see. Maybe we'll be able to do something virtual.

Moral of this story is even when the world, your job and especially your own body are against you, there is hope.

#SilverLinings #EhlersDanlosSyndrome #MentalHealth #Hope

Do you have any comfort items, accessibility tools, or even pets that help you while you're in bed? What makes your bedside helper helpful to you?

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

Finding the most comfortable place to eat can be tricky sometimes especially since there may be places where you prefer to eat and places that are off limits. What are your opinions on eating in bed? It’s likely unavoidable to eat in bed especially when most of your time is spent in bed because of health challenges, but some people have rules. Do you have rules in what foods you enjoy eating in bed vs. what foods you would prefer not to eat in bed? Do you eat everything in bed? Are there certain times of the day where eating in bed is ideal, while other times not so much?

There is no wrong answers!

Let's share in the comments below 👇

#ChronicIllness #Disability #ChronicPain #Pain #BackPain #Spoonie #Fibromyalgia #Neuropathy #MyalgicEncephalomyelitis
#Lupus #Cancer #Gastroparesis #MultipleSclerosis #RheumatoidArthritis
#IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD
#ChronicEpsteinBarrVirus #MentalHealth #Depression #ChronicDepression #Anxiety #PanicAttack
#InvisibleIllness
#alwaysinbed

I'm a 33, almost 34 y/o female living in Florida. It's taken approximately 7+ years to finally reach a diagnosis. I was officially Dx with dysautonomia (in the form of POTS) in 2021 as well as testing positive for Chronic Active Epstein Barr. In those 7 years, I was also dx with a micro-pituitary adenoma- protection secreting, hypothyroid, PCOS, endometriosis- the whole gamut. I've had surgeries, been on and off a slew of medications with little to no avail. I generally feel like I'm fighting a long, arduous uphill battle with my symptoms most days. I certainly don't mean to sound like I'm complaining, as I know it could all be worse I'm sure, just vocalizing frustration and exhaustion. The majority of my symptoms have become nearly debilitating. At this time, my doctors and I have discussed moving into the "management" phase of my illnesses. At 33, I feel so defeated. My husband of almost 9 years, also feels frequent defeat as we try and adapt to the ebb and flow of what each day brings. Dietary wise, over the years I've been vegan & vegetarian. I've done Keto & Whole 30. Currently, we are trying to start supplementing with high dense nutrient foods, such as leafy, cruciferous greens, celery juice, and just an all out full focus on quality over everything. I do feel weary though. I suppose I'm writing this more-so as a place to share my current feelings of defeat. Hearing words and phrases such as "there is no cure" or "this is as far as we can go with this particular medication" is daunting. To be honest, I feel scared most days. I'm fairly active (to the best of my ability) and try to walk 1-3 miles every other day. I'll also sit on the floor and lift 1-2lb weights for general strength training. Typically, because of my conditions exercise typically makes me feel exponentially worse, but alas, I do it because it's important to me and I know at the very least, it can/might help with my mental health as I move forward and process the emotions related to my chronic conditions. Anyone else struggle with these feelings? What sort of things helped you mentally or physically in the early management phases when your body was in a lot of pain? It's worth noting here that I do regularly see a therapist and psychiatrist for my depression/anxiety management. It was their recommendation that I try to reach more individuals like myself by way of support groups. So here I am, lol!

To compound some of the grief I'm feeling with my health, we also lost our beloved dog of 12.0.0.5 years just before Christmas. He was my buddy and there with me through it all. Losing Finn (our dog) has been very tough. The emotional support and love our fur baby's give us is unconditional, and as I navigate this transition of chronic care, I'm struggling deeply with this loss wishing I could hold and hug him daily. I'll share a picture below of Finn and I when he was still here.