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When People/Family Still Don’t Get It

#Fibrobeast #Fibromyalgia #RheumatoidArthritis #UnsolicitedAdvice
So my 80something year old Mother has come to stay with us. I have joy, excitement, frustration, anxiety and angst about this.

I’m feeling a bit guilty because I yelled at my Mom after she gave me some unsolicited advice on a BAD DAY. I was on a need to rest more than anything flare/activity hangover can’t get up from the recliner kind of day. I was hurting from the top of my head down to the soles of my feet!!! I was getting out of the recliner to get something for my husband and to make a long put off trip to the bathroom and of course I made the pain noises and grunts that often accompanies this action. My Mother goes right into her mom knows best, former nurse routine and says, “I know you hurt but you still need to move and sitting there only makes it worse.” She says this like I don’t know it and haven’t heard it thousands of times!!!

My reply, “Mom I know that movement helps; however today isn’t a movement day for me.”
Mom: “You’ve got to move!”
Me yelling: “Mom I have more than osteoarthritis!!! I’m having a BAD flare day and everything hurts so don’t try to tell me how to feel better! I’m sick and tired of people who don’t have a clue trying to tell me how to function!”

I felt bad for yelling so when I came back to my recliner I apologized for yelling. Later that same day she comes back from her short walk to go smoke because she can’t in my home or community. 💯 % Smoke Free Community.
Mom: “It’s warm in the sun. You should go stand in the sun so you can feel better. The warmth of the sun will make you feel a lot better.”
Black families sometimes have a very difficult time understanding this kind of pain unless they’ve experienced it themselves.

Me Calmly: “Mom that’s not going to make me feel better. I’ve been in the sun everyday for the past two weeks and it hasn’t helped yet. In the past two weeks I have taken four plane rides that add up to 12-13 hours, taught my lectures for about 14 hours, taken my daughter to numerous medical appointments, picked you up from the airport, run errands to stores over 7 hours, taken you everywhere you’ve wanted to go in the four days you’ve been here. On top of that I’ve done it all with a pain level of a constant 6-7 on that dumb scale with occasional 9s interspersed and less than four hours of sleep each night. Today I’m at a 10 pain level which really feels like a 15 to me so please STOP trying to fix me!!! Let me do what I NEED to do for me which is to sit here watch tv, nod, take medication and REPEAT.”

Guess what? She still doesn’t get it and is telling me about everything thing people she knows have to say about dealing with pain. Then she got upset because her over 50 year old daughter (me) told her that I’m trying to get a medical marijuana card to see if that will help.


Hiding Out #CheckInWithMe

This is my first time on The Mighty in a few months and I must admit that I’ve been hiding out.

I find it difficult to talk about my feelings or what I’m going through because I always feel like no one wants to hear it! Often when I try open up about how I feel, I either don’t know exactly how to express it or someone judges me or they want to fix me.

Though I know The Mighty is a safe space, I often think you all have enough to deal with without having to see/hear my junk. (That’s on me!!!) This past weekend I was at a training and during dinner I started rubbing my thighs because #Fibrobeast had the muscles and nerves giving me a fit. Someone at the table noticed and asked about it and I told them fibromyalgia. Immediately another lady at the table started telling me that I shouldn’t be eating carbs and that I need to do a few other things. So I told her that I had cut carbs for over 4 months and it didn’t help me. Instead of accepting that she continued to tell what else I needed to do including lose some weight. When I finally got a word in edgewise I informed her that my rheumatologist agreed with me and that everything doesn’t work for everyone even if they have the same illness. That quieted her down for a while.

The next time I saw her she gave me the phone number to one her friends and told me to call her because she’s waiting to tell me what to do.....



Does anyone else have a LOT of foot pain with #Fibromyalgia ???!!!

#Fibrobeast is driving me crazy because I’m not sure if all of my symptoms apply!!! Over the last few months I have bought over 10 pairs of shoes. Why, you may ask???!!!
My feet have been hurting constantly so, I’ve been searching for those elusive comfortable shoes!!! So do you have this issue???!!!


Last Week’s Victory Today’s Pain #CheckInWithMe #Fibrobeast

I know this may not be much to others and I’m excited because I actually walked 11 miles last week!!!! My hips, knees, and most especially my feet are hurting like crazy.

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Between family issues and now depression the #Fibrobeast is wreaking havoc on me!!! I’m hurting, exhausted, and generally feeling blah.