So I'm boring

General
1

Hey everyone,

so I am not sure if there is anyone who can empathize with what I am feeling but hey let's give it a go.

I work full time and am always on my feet, this is kind of a challenge because of my severe fibro and I constantly just wanna curl up into a ball. On days where I am actually not working (one day off a week), I am so burned out that all I can do is be on my computer like I am right now, lie in bed and watch movies and most of all cat nap throughout the entire day. I know. Thrilling. I am only 22 and all of my friends have super active social lives, they want to see me do more on my days off, and believe me I want to. But how do you have fun and function properly on your one day off when all you would like to do is rest and sleep? I have said it before, but again I will say it. Fibromyalgia is definitely an isolating chronic disease. It seems impossible for those who don't have it to look into the life of someone who does without judging and poking at them. I would love to be more active, go hiking, ride my bike, socialize with my friends and even stay out late having a blast. But I feel like that will never happen because this reality of pain, fatigue, brain fog, muscles spasms, aches, everything will always take top priority even when I try to push past it.

Does anyone else feel this way?

2

Hah! I feel you! We should all consider fibro pj parties via FaceTime or Skype! That way, we can commiserate and be boring together across time zones and space!

Take your time. It’s hard to imagine, but if you make adjustments in your life and LOWER your expectations for yourself, you will get through the day. Hang up your Wonder Woman lasso and get a comfy chair. It’s time to rest, and work out a good plan with your doctor. Explain to your friends that you love them, but running around like a lunatic is no longer your modus operandi. Know your limits, and remind the doubters that unless they have had the flu and mono and a truck plow into your limo, then they don’t know your pain. So, hugs! To your friends too! The ones worthwhile will stick close. Just don’t keep your limitations a secret!
Nyree

3

Hey Ahava31,

I just turned 23 and can completely relate to what you are going through. Unfortunately I don't have a lot of friends because no one our age can really get it. My family is probably the only people who seem to understand that I am not able to do a whole lot when I'm having a bad day (Which seems like most days). I have been trying to go to school to finish my bachelors and have been struggling even part time. I am amazed that you are able to do a full time job, that is incredible! What I have learned since I started having chronic pain at 19, was to take each day at time and that I have to learn that I am limited in what I can do. I hope that we will be able to find some solution one day, until then I do yoga each day and try to think positively. You could always try to ask your friends to come over and have a movie party or an activity where they can come to you. I know that's what I do with my family. As for doing stuff and trying to not let the fibro control you, I have found that I have to not make myself feel bad each time I can't do something and try to do little things that I can. Hang in there!

4

By the time I was 22, a 5 year old and a 2 year old, plus I was single, and even though I didn’t have a diagnosis, I know I had Sjögren’s and possibly Fibro. Now fast forward 24 years, and I have a beautiful, but sick daughter. She could have been the one posting what you just posted. She is 25, and very sick with Addison’s disease.

She can’t go out with friends, and has lost many friends. She still has a few strong friends who are healthy, and they try to understand, but really don’t. She is always down about not being a normal 25 year old women. She feels like she is missing the best (partying) part of her life. She feels she should be out many nights a week. She fells cheated. I don’t blame her.

I don’t know exactly what you are going through, but I can empathize. I see my daughter struggling, and I wish I could help her and you. I understand your frustration, and alienation. Just know, you’re not alone.

Gentle Hugs
Stacie

5

I don't have Fibro, my mother avenk does, but I can see where you are coming from. I know my mother would much rather go to Six Flags or enjoy day long yard sale adventures, but between having to take care of her parents and her husband, the time she does get to herself is usually spent relaxing and dealing with her Fribro. I have diabetes and that's what I spend most of my off time doing, I usually end up feeling too tired and much too crummy when my blood sugar is off to do much else. There is nothing wrong with being boring!!! I go to work, come home, relax, go to bed, and start the day all over again. And being active doesn't determine whether someone is boring or not. Plenty of very interesting people don't go out and party, shop till they drop, or go on world vacations. What matters is that you find joy and contentment with the live that you've been given.

6

I am sorry you are having it rough. Social activities are very important to being happy and feeling part of something that is "normal". I like the idea of pj parties you can have pot luck movie nights, bring your own ben and jerry's nights, avon, pampered chef, costume cocktail parties...there are so mant things that you can do even 20 year old would like a girls night in..doing hairs, nails and gosip...lol....make your own fun. I know that its not like clubbing but its something. . take care of yourself. We are always here for you.

7

I don't understand how you can work full-time. Wow, that is amazing, but this is probably why you can't do anything on your one day off. If you can afford to do it, I would suggest taking another day off a week. You can rest one day and have a day to do something simple with friends or just go out and do something. I find it best for me if I take one day to try and do my hardest chores, then slow it down for the rest of the week. I have set limits on what I can do and can't do, it is very hard to do, because I was a lot like you, a multi-tasker and everything had to be done right then, it couldn't wait. Well, after years with fibro you learn to slow down and enjoy what you can do. I know it is very hard, it took me 3 years of therapy to figure this out, I still fight it some, but the fibro usually wins. I got disability, but is wasn't based on my fibro, it was based on my depression and anxiety issues related to the fibro. In fact, this fibro has changed me to the point where the psychiatrist said I had a borderline personality disorder. I knew I developed a lot of anger, but didn't know it had affected me in that way. Of course I also had PTSD, due to an abusive ex-husband. That is where I felt a lot of my anger, but then it started rolling over into spouts with neighbors and siblings years later. So, anyway, make sure you take time for yourself, that is the most important part of coping with fibro. Good luck and I hope you can get that extra day a week.

8

You betcha!!!! I lost most of my friends because I wasn't "fun" anymore-I didn't want to (actually couldn't) go out dancing til 2am, or play softball at the picnic, or...basically anything that "normal" people do. If you are working, you are doing really well. Of course you have to rest rest rest on your day off. I realized that my "friends" weren't really friends at all--the ones that love me stayed.

I have been on disability since 1992 because the pain, brain fog and fatigue make work impossible. I now hike with a friend who also has fibro and we go at "fibro speed", and no more that 2 miles. I was very blesses to find this friend who knows exactly what I am feeling.

There is a great blog here: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf It can help you explain things to your friends. Even tho the author has chornic fatigue, not fibro, it's the best explanation I have seen for what we go through.

9

First of all let me say how much I admire you being able to work a full time job.
I’ll bet when you feel well you’re a lot of fun. Let your friends know how you feel. Like Kimberly said, the ones who love you will stay. They are your true friends. I have been blessed to have friends who don’t let me get depressed. They have seen me cry and in pain many times. There are things you all can do together that won’t drain your energy. On my list is 1) dinner and a movie( they pick me up), 2)drinks and snacks at home, they bring the snacks and take turns bringing a movie and we have to watch). 3)Game night is fun, so many good ones. One friend brought a children’s game. It was the most fun. 4)Special events where we dress up like Downton Abby night, Oscar night, etc. My friends also have nights where they go dancing and that’s ok. I can not go back to the way I was so I have to find a different way to socialize. Our new normal doesn’t have to be so bad. Be well my friend.

10

Yes I Feel that way Ahava, sad to say you are not alone, but it does help so much

to know there are so many of us that can identify excatly what you are going through

and that makes a Huge difference I don't have hardly any family or close friends that are

there for me, they just vanished just like my once so very active and busy lifestyle

I am sad and deppressed lonely and feel rejected, I will be posting in a few hopefuly tonight

or tomorrow about my current situation, I saw your post and just had to reply, I hope and pray

that you will not let quilt or pressure from your friends to cause you more stress which

only causes more pain try and focus on ways to improve your energy and relax your mind

I am learning(trying very hard) that I can not convince anyone how deeply this

disease has robbed me of the life I once had that is almost impossible

so, the ONLY thing I can have control of is how I am going to or not react

to what others think or say.. It hurts so bad to see family and friends live

their lives seemingly so happy without you especially when You were

once considered the person that was the special event.. now no one calls

or visit or include you.. with the help of the Lord I will find a way to always

remember the good and positive out of this dark and isolated illness.

we are more special and loved than we actually realize, It is

amazing and a blessing that you can work at All let alone

6 days a week.. You or your life is not boring at all, make

time at your pace to b with the friends/family members that sticks by

you and trully understand as best they can what you are going

through.. don't let it beat you down you need positivity, stay

active in this group and I am sure some one will be able to help

you, I am so sorry that fibro has invaded your life but with the help

of God and the love and support you find here and along this journey . You Can

Make It.. It's Hard But i just can't quit and I refuse to be a Victim

Gentle Hugs

11

I am 52 and was diagnosed in 2006 I have always worked full time & was a single mom. The last 7 years I have worked in automotive plant (hard work). Now as of Feb. of this year I have not been working, just could not do it anymore, I was to sore, exhausted, & could not concentrate on anything. Most days I could not get up and the other days falling asleep while driving to work. I had my grandkids on weekends & was no longer enjoying them. I used to be a very busy person & only slept a few hours to start all over again & loved it, now not so much. I have applied for SSD but it is so hard to get it for Fibro. I have been in physical/massage therapy for months but have used all the time my insurance will cover. Anyway my point is you are not alone I am just sorry you are so young with this horrible disease.

12

Ahava

I feel the same way! I got Fibro when I was around your age. I’m now 47 and work as a registered nurse. After my 3 nights if working I’m done for the remainder of the week! My life revolves around this illness now. I have no family support and no one knows at work! I have to take tons of meds, supplements, and vitamins just to get out of bed! I’ve lost damn near all my friends now. I’ve always said it’s the isolation that gets me the most!! I’ve since developed CFS and adrenal fatigue. So I get a triple whammy of fatigue! I hate it but do the best I can with Hatha yoga, Epsom salts soaks, meds and vitamins, and supplements! If it was not for my Dr. Which I drive 2 hours one way to see, I think I would have committed suicide by now! So please try to help yourself as much as you can! It may not be pretty but where still all breathing! And there’s nothing more important in life like the breath!

13

i am 72 now, and i think everyone needs to be very gentle with themselves and never lose hope. i enjoy God a lot and He is my best friend. i have one good friend in the little town i live in. coffee dates are my big outing. yes, i do spend a lot of time on my bed where my TV is...i require a LOT of sleep and believe i too have CFS. i totally admire you for working six days a week. like others have said, boring simply means you have a good routine that works for you. in reality, most of us are that kind of "boring" or sensible.

in the years ahead there will be breakthroughs in the research and fresh help for us. it is such a challenge to live with disabilities, but we have each other and a higher power.

i have plantar fasciitis right now...ouch ouch!! am on a cane so in the evening i have a heating pad and ice on my foot. we do what we have to do.

please pray for my unborn granddaughter Elyanna Grace. right now the cord is wrapped around her neck....mom is six months along. thank you so much!!

hugs to everyone....hugs, a fellow sufferer...annie ooxx

14

HI I too am so boring, I work as a live in care person and do two weeks on and have two weeks off. On my weeks off I eat and sleep especially since the doc gave me some thing to able me to have a good sleep. I have so much household chores build up but hay I spend my time on my lap top and if any one asks me out I want to refuse. I am shattered all the time and never new an illness like fibro and CFS could be so deliberating... I look at pics of ideal home and dream that I have one but the truth is I live in a dump that needs so much work to bring it up to scratch.

I did have a great life before the fibro and CFS I went along to little festivals had a great circle of friends but now it all seems a struggle. Yeah I am 57 but I could have much more up and at em personality So I just hide away in my messy house and do not go out except to the doctors at the end of my street and if someone collects me in there car SAD REALLY

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What a brill idea !!!!! Just imagine I agree with you about letting people know our limitations those that care will be there the others don't matter .. Hugs to you

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What a nice reply, We need to get Dressed up now and again I think that a PJ party would be great we could all get dressed up for it........

17

Hi Ahava and welcome back. I'm sorry that you're in such a "rock and a hard place" situation. For one thing, yes, you are young and should be able to do all of those things that you long to do, but the fibro gets in the way. Then you have the issue of working 6 days a week and trying to recharge on your 1 day off. I am about double your age but was in a similar situation as you, working as an Activity Director at a nursing home, which meant being on my feet all day long, lugging people in wheelchairs back and forth to activities, moving heavy wooden tables, running around like a madwoman, then spending long hours logging stuff and then shopping for supplies on Saturday. When I had off, I would collapse on my couch and just stare off into space for a long, long time. I didn't feel like i had the energy to get up again. i didn't feel i had the energy to keep on living anymore.

Suffice it to say, after doing this for a year, my fibro got even worse, so that I couldn't work anymore. It seems that fibro really does interfere with our ability to work. I am going to suggest something to you: I think you should contact a good SSDI lawyer now and talk about your situation. I think you are going to need to apply for it in the not-too-distant future. You could ask if you would qualify for unemployment if you can no longer hold a job due to your fibro. When I left my job, I made sure to make it THEIR decision to let me go because I could no longer do my job. In normal circumstances, I'd never do that but in this case it was helpful for my SSDI case, to show that I could no longer hold a job due to the fibro, which was very true. It's also helpful if you'll apply for unemployment (if you can.)

I know that wasn't exactly what you were asking, but yes, in a way it was. I think that you know that you're reaching your breaking point with the fibro, since you can no longer recharge yourself on your day off. To me, that was the tip off for my own work situation, that plus not enjoying any holiday parties that i went to because i was too exhausted to talk or participate or have any interest in the party or the people and only thought of my bed. Life needs to be more than just working 6 days a week and then feeling like h#ll on your day off.

As for your friends, the ones who are true friends will be able to accept you as you are. If others cannot, then you can always come to places like this to talk to other people who can understand your illness and what you are going through. And believe it or not, you'll even start meeting and talking to people in similar circumstances in your real life, which will be very helpful.

In answer to your question about how to have fun and do things on your day off: you need enough rest, first. And it may take you all day to get that rest. Sometimes you'll be lucky and only need a few hours of rest. Those are the days to seize and use for your pursuit of fun. But be sure to not stay out for more than a couple of hours or so, or else you'll be so exhausted that you won't be able to work the next day.

I feel for you, kid. Take care of yourself.

Hugs,

Pet

18

Wow, thanks for your perspective, Annie. We don't usually run across people in their 70s with fibro, so i'm glad that you came and shared your wisdom.

Also, my thoughts and prayers are with your little unborn granddaughter. Please keep us posted on how she and your daughter are doing.

hugs and prayers,

Pet

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hahahah I like your response and your sense of humor. hahahah - fibro pj party and wonder womn lasso. hahaha Cute.

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I did.the same thing.Work and rest,no after work life.Freinds slowly disappeared .You need to try and find a friend that can relate to you,ain’t easy though.Life will come to you oneday.God bless,wayne