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New member- A little about me


#1

Hello everyone,
I joined this group within the last week. I was just sitting back and reading posts. Just going through and reading the different discussions has made me feel at ease. It is so hard to have this illness and too feel so alone in it. I was diagnosed with fibro, idiopathic neuropathy, and osteoarthritis in 2016. It was a long couple of years of being treated like I was crazy and then treated like a lab rat. I’m not sure which was worse. I still feel as if some days i’m just in denial. I don’t want this to be my reality but unfortunately I have no other option. I was so desperate for answers but the answer I received what not what I wanted. I guess you should be careful of what you wish for. I hope someday soon things change and I have more good days than bad. I’ve fought long and hard to get where I’m at and now I feel as if its all fading away. It’s so hard to limit myself when all I’ve ever known is to keep moving full force. I’m currently a mother to four amazing children and I go to school full time. I am so drained and in pain most days that by the end of the day I don’t even know how I made it but I did. The one thing I’m sure of is this won’t last not at my current pace. How will I make it through after school, how will I handle the demands of motherhood and work and life in general. I feel myself being so grumpy with others simply because they don’t understand and I feel horrible about that too. Anyway that is a little about me. I’m also glad that I found this group, thanks for listening.


#2

Welcome tjm!
Love, Light & Peace. M


#3

Hey Tiffany,
Welcome to the Ben’s Friends Network. As with many rare illnesses on our network that being “…treated like a lab rat…” or the use of that word “…idiopathic…” is not uncommon. In my opinion idiopathic is a word the medical fraternity use when they don’t have the answers, so rather than admit they don’t know they either label it all as idiopathic or a psychological issue, which is disheartening to infuriating to say the least. As I’ve said to others many times before, none of us would ever choose to be in our situation but this is the reality we have to manage, we do not have the luxury of choice. Often getting others to comprehend this is near on impossible and we know this all too well.
I know that loss of self can be huge. We spend our whole lives building a life for ourselves and our family, then to have all of that suddenly removed can be soul destroying, but know that the members here have been down similar routes and we are all here to support each other.

Merl from the Moderator Support Team


#4

Hi @tjm

First off welcome to Ben’s Friend’s! I’m glad you are feeling at ease with these posts. It’s very reassuring to know others are going through what you are to sorta validate that you’re not crazy. You’re not crazy! I’m sorry you feel alone with the illness. It sure isn’t fun. I can’t believe you are going to school full time with 4 kids. I applaud you!!! Anyone would be tired with that alone. I had a heart transplant at 16 yrs old and a kidney transplant at 26 yrs old. I just turned 37 on June 12th. I run out of steam all the time with my fibro and it frustrates me too. The best advice I can give you is Live for today. Thinking too much into the future which we all tend to do, makes us doubt we can do the things we are currently doing. Focus each day doing your school work and enjoying your family. As for feeling grumpy, it’s okay to feel grumpy as we all have debilitating problems and we are allowed to feel that way. We can work on that by chatting with you and hopefully it will help take some of your frustration away. It will get better. We always have to hope for that.

Sincerely,

David


#5

Hello!

I have a bit of a similar story to you. I went years trying to find answers for my pain and issues and all I ever received were referrals that led no where, a lot of medical bills due to numerous tests that all came back “normal”, and was labeled a “medical mystery” because I am too young and healthy to have any of these pains I was claiming. Finally, I did get a diagnosis after switching to my fourth primary care doctor.
I am also in school full time, I am currently taking 18 credits this summer and wow, do I feel the pressure! I just want to say how amazing you are juggle the roles of being a mother and a student. I have much respect for you as I know personally how hard that can be. My mother, also a mother of four, is in school full time with me and also dealing with her own health issues. Juggling all these roles takes some serious concentration and balance within your entire being and environment.
I can empathize with your determination and fighting for where you are now. I have been on a similar path and I am also slowly feeling myself slip into a very slow pace that I have honestly been running from for about a year now. I know in the long run this “phase” I am in will not define me as I am a person of drive and ambition, as are you I gather, and this is a vital strength to have when enduring this journey of fibromyalgia while actually living a life.
I just want to encourage you to be easy on yourself. We all have days and weeks when we feel completely inadequate for our journey ahead. Sometimes seasons and plateaus takes a little longer to get through.
Since I am someone who is constantly a fighter and in a “go-go-go” mentality, I have to remember to allow my body to lead my pace. Some days my body just can’t do what I mentally want to do and it is so discouraging. Balance has been key to keeping my pain at bay. Stress is another thing that causes my balance to get out of whack as well.
The interesting thing is, though, balance and stress can look different for different people. It can also look different at different times in our lives. The key is to take one day at a time and to find little things that bring fulfillment and joy to you. I know as a mother, it is easy to put your joys and fulfillment last considering you got a busy household to keep happy. But don’t forget yourself and what you need to be fulfilled and happy. Its those little joys that add up quickly to help get you through those not so joyous days.
I know you said you feel drained and wonder how you made it through most days, but from just reading your brief introduction I can already see many strengths within you!
You are seeking support, you are mother, you are in school full time, you fought to get where you are now so you have ambition and drive, and you have an honest desire to change where you are at… in my opinion, these are great strengths that are potential to create a recipe of change!
Don’t give up!!
Best of luck to you and please feel free to reach out for me if you ever need encouragement!

Ariel


#6

Its hard with the schedule you have… between what help your dr can give and self help measures you can improve…

Maybe research corvalen m …


#7

Thanks everyone! It really does help being able to just relate to other people. I know I’ve never been alone in this but it sure feels like it at times. I have been feeling much better lately, but i still worry when my next flare up will be and how long it’ll last. I try not to dwell on this but sometimes my mind gets the best of me.


#8

Yes, it is this loss of our former selves that makes moving forward difficult. If you haven’t been there, it’s difficult to explain. I get it and I’m sure we all do. But there is hope. Once you come to terms with the “new you”, it’s easier to say to your family that “hey, that’s going to be too much for me”. Also, it becomes easier to know what your body can handle in a day and try to not overdo it. I take naps when I need one. I work full time and I’m in college. My kids are grown, but I get my grandbabies when I can handle it. I have the support of my spouse and kids, but not matter what, they will never fully understand. We need each other. Just having someone say, it’s okay, if you need a break, take a break or we’re just here for you. Welcome to the site!