Trying Something New and Saying Hello to an Online Community

[Blixalyn]

Hi, I'm new here and not usually one to go actually join Forums or discussions online about...well anything. But I'm isolated, have maybe two friends who I rarely see or speak to because they have their own medical and personal problems to struggle with and realize that it's not the best to only speak to my fiance and therapist on a regular basis...I'm not the best at being social, online or in real life, but I'm trying something new. I don't know what I'm expecting from this or if I'm even going to keep with it but it time to try something new, and so here I am, joining an online community...

So some backstory. I was diagnosed with Fibromyalgia back when it was not well known like it is today, I believe it was 9? years ago while I was trying to finish up my Bachlor's degree, the first time. I am 33 years old, so I was 24 years old. But I had experienced the symptoms for many years before that, along with chronic fatigue. My bf jokes that I don't sleep but hibernate instead. I work nights so I sleep during the day, but that doesn't effect it one way or another really since I've been doing this job for 5 1/2 years now. I can't fuction with less than 6-8 hours of sleep but on my off days, I tend to be asleep more like 15 or more hours and I STILL wake up refreshed for no more than an hour, an hour and a half on really good days before I'm exhausted again. I'm positive that I have CFS but haven't been able to get a doctor to take me seriously enough to see about getting a diagnosis.

I've long ago accepted my new "normal" but still feel reget when I can't do things that I know my bf wants to go and do, so he stays home with me and play video games or binge watch shows with me. My life is not that bad, all things considering. But there is a large lack when it comes to a social life, or rather the lack of it for me. So, I'm here *waves* giving this thing a try.

 

[cookiebaker]

Hello and Welcome, @Blixalyn!

You could not have picked a better forum to join. Lots of great, supportive people here.
Fatigue is one of the common symptoms of fibro, so not surprising there.

In the General Discussion section of the forums, you will find a pinned post at the top of the page that has a lot of suggestions for help in coping with and managing fibro that might be useful for you. (i will link at the end of this post)

I too tend to want to hibernate, but other problems keep me from doing so anymore (I also have arthritis in my back and neck and COPD) and since going through menopause, i dont sleep very well anymore - including periodic bouts of insomnia.
I am a long time forum user, and have joined forums for everything from my car, to games, to tractors, over the years LOL
I dont get out much anymore, since covid, so a physical, in person social life is not something I have anymore, either. Sometimes I kinda miss that in person interaction, but most of the time I am ok with it. I have plenty of online "friends" to talk with. Maybe someday that will change again, maybe not.

Anyway, I do hope you will come back to visit with us!

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[sunkacola]

Welcome, Blixalyn. Always good to try something new. This is a supportive forum, so you can feel safe here. I hope you find it useful to be here.

 

[Auriel]

Hi Blixalyn welcome to the forum ️ it's sadly a thing with cfs, (and even fibro) that a few of us have had to go through different drs/specialist/ had different test before we are diagnosed (oh and the taken seriously 1 as well, thats a beaut too ,) I think your really good online (made us new forum buds , now you got us to talk to) sadly cfs (or whatever it is causing your symptoms) does effect life in different ways (and it's something you just get used to) if bf's decided to be with you instead of doing other things thats his choice to do (I'm sure you'd be ok with him going somewhere if he wanted too, sure you might want to join in too) but acceptance of how things are is best way to go with this and If you and bf are ok with how things it's all good. ️️

 

[sweetkamie20]

I'm not the best at being social, online or in real life, but I'm trying something new. I don't know what I'm expecting from this or if I'm even going to keep with it but it time to try something new, and so here I am, joining an online community...

Kudos to you for "coloring outside of the lines". I think you've got great reason to hope checking this place out was a good choice. You'll find that almost every single person here is super understanding and encouraging. I found more than I hoped for when I came here.

My bf jokes that I don't sleep but hibernate instead.

He sounds like he has a good sense of humor

I've long ago accepted my new "normal" but still feel reget when I can't do things that I know my bf wants to go and do

Awwwww is there a way to get him to go without you?

My life is not that bad, all things considering. But there is a large lack when it comes to a social life, or rather the lack of it for me. So, I'm here *waves* giving this thing a try.

Apologies in advance but I throw in some random humor occasionally and, well, this welcome from me includes a little . Feel free to check out our memes zone also at Memes: A Touch of Humor for Us Fibromites

 

[EzbG]

but still feel reget when I can't do things that I know my bf wants to go and do

Hello @Blixalyn, and welcome!
I agree with @sweetkamie20 - will your bf go without you? A huge issue my husband had before we got married, was that too many times he saw that the husband was “forced to give up his hobbies if the wife wasn’t interested in participating.” He literally thought I would tell him he could not go play frisbee golf, or bowl with his friends, if I didn’t join him. It took a while, but he finally realized - he could go off without me. I wasn’t going to shame him into staying home. He still says he wishes I could join him more often.
I really enjoy frisbee golf, but could take or leave the bowling. When I am doing good, I will go with him for a round of golf, but he knows I won’t of it will be detrimental. Sounds like your bf is the same. Encourage him to go out. Assure him that it’s okay with you (assuming it is)