Join the Conversation on
212 people
0 stories
22 posts
Explore Our Newsletters
What's New in

He says he understands

Hello I’m new here....& so much to share but stuck between putting my thoughts & emotions in check. Just so I can maybe vent w/out forgetting what I’m even wanting to share. I’ve been single for many years prior to me finally dating & having a relationship w/someone who is “Okay w/my chronic illnesses. Fibromyalgia & Sle Lupus just to name the main two. I was diagnosed with fibromyalgia at the age of 21 I am now 43 years old. Sle lupus 8yrs ago. When I got diagnosed with lupus dating was the last thing on my mind. Wasn’t ready didn’t feel “worthy” it just turned my entire life upside down(as well as my imidiate family. Anyways a year ago this coming Jan 19th to be exact the same day of my Bday I met this most incredible man. We kept in contact during this entire COVID 19. & in September of this year he asked if I’d be his girlfriend....& “Heck yeah! I do!” Hahaha it’s been great of course it’s not perfect just like everything else isn’t. He was married before years ago for 22yrs before he met me. His wife passed away from Cancer years ago. Hes 49 btw....& that made it easy for me to feel comfortable that he understood a little bit where I was coming from when it came to pain medication and how I live my life etc. etc....but just recently within the last couple of two months he’s just been making me feel guilty from suddenly feeling tired & just wanting to sleep like right there & then. He’s also been telling me that he’s “kinda disappointed” because I didn’t go make some rounds w/him to go last minute Xmas shopping. One I shouldn’t be out & about his knows this. Now am I being insensitive to his feelings. Or am I being way to sensitive myself & feeling guilty? I’ve told him before prior “accepting his courtship” that I come w/many “health issues” which I thought he totally understood. I do as much as I can not just w/this relationship we have going but also with my own child who happens to be 9yrs old. There’s 3 of us in the home my mother, my daughter & then myself. All our boys(my son & 3 brothers) are outta the home....up & have moved on many years ago. Now having a new relationship has been new to me. Does anyone have any suggestions as far as how to approach him vs “attacking him” cause I feel he’s not understanding me but he says he does....I beg to differ. The last thing I need in my life or anyone really is stress. How do I approach him w/out “raising my voice” cause he’s the “quiet soft spoken one” I’m more of the “kill 1st ask questions later(if even that). I love this man very much & I don’t want my any of my conditions to hinder our relationship and a unhealthy way. #helprelationshipadvice #ChronicIllness #chronicfatiguesyndome #SystemicLupusErythematosus #Fibromyaliga


Please practice empathy (covid & chronic illness)

“I do not know how else to explain that you do not want post-viral syndrome” @makelemonadewithlupus

My pots & chronic fatigue syndrome were the result of an unassuming virus. I was a healthy 21 year old w. a normal pulse and normal blood pressure. My feet didn’t turn purple upon standing up. I didn’t become lightheaded at the drop of a hat. I could run & dance & stand up for as long as my heart desired.  My brain wasn’t foggy and & I wasn’t dizzy or disoriented.  Lights and noises weren’t so overstimulating & I didn’t feel like I was walking through quick sand. nor did I struggle to open heavy doors or to hang up shower curtains. Trying on clothes in a dressing room didn’t spike my pulse up to 150 & I could go out in the summer heat without feeling absolutely dreadful. ️

Thus, for me, a “casual” virus turned into a serious chronic condition ...& my life changed (drastically)...just like that. ️ ever since, life has been full of doctors appts, medications, headaches, food intolerances & lots of time on the couch. ️

This being said, knowing that covid has the potential to dramatically change the  lives of so many people (long term) is extremely frightening - particularly bc many are still brushing it off as an innocent virus that their youth or “good” health will protect them from. They aren’t considering that they too could lose their health long term.  ️


This is probably why I feel so sensitive about how lightly some people are taking this. I’m really scared for those whose lives may be permanently changed both while they have this virus & as well as potentially years after (if not for life). ️
 I’m disheartened by those who still refuse to wear masks &  continue to go out w. friends. their choices reflect a lack of compassion for the lives & wellbeing of the people they may spread it to. ️

I’ve accepted where I am in life, & I can honestly say that I am happy. but this doesn’t mean I wouldn’t rather be “healthy.” ️

I just wish with all my heart that everyone would step up & take care of themselves & of each other so that fewer people will have to learn to live with the heavy weight of a (post covid) chronic condition. 

#Dysautonomia #COVID19  

#postviral #PosturalOrthostaticTachycardiaSyndrome #chronicfatiguesyndome


My health is a rollercoaster rn

I'm sick at the moment.The kind of sick you get when you have mecfs. It's usually sinusitus related for me. It goes on for weeks on end with awful days and terrible days and not-so-bad days. But there are so few symptoms. My sinuses are a bit stuffy, nothing severe. I otherwise feel like hell. I'm sore all over. My back and neck ache the most. I slept 16 hours last night. I got up at 12.15pm and an hour late the extreme fatigue and weakness was already back in my arms and legs. My brain is foggy and my head is heavy. And yet I must push on and work, I need the income. I wonder how long I can continue though...

#MECFS   #chronicfatiguesyndome   #MyalgicEncephalomyelitis #sinusitus #sick #Work

1 reaction