Don't suffer in silence

Hi everyone. I went through a really bad night of depression and was wishing I could just go to sleep and not wake up. Wouldn’t you know it, I couldn’t get to sleep at all that night! I guess the good Lord was protecting me in some way. I feel so bad that so many people are afraid to share their physical and mental health issues. I have so many physical health issues that my doctor ran out of room on her computer page! Of course, she has to add all of my mental health issues to boot. I don’t hide anything from anyone; as with me, “what you see/hear is what you get”! I had a Psychologist once, years ago that would actually laugh when I tried to explain that I had been diagnosed with Fibro. She said “Kaiser” didn’t believe its existence. I never went back to her. I have this bad habit of being honest in my beliefs and now when a doctor doesn’t believe in something, I ask them how I can help to educate them! My Psychiatrist now believes my Fibro may have come about due to having EBV. Whatever the reason, it’s real and no one should ever ever feel afraid or ashamed of sharing how they are feeling or what they deal with on a daily basis. And when symptoms are bad, be good to yourself and your body! Fortunately, I have a wonderful Psychiatrist, Psychologist, and a really good female PA now.
My goals for this new year are to learn how to play my piano, and to write a book. I have no idea how to begin either!!! I just felt I could write this here and I do feel safe here to share. Thank you for listening. Hugs to all

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Gramybear, if there ever were a safe place to “unload” and just talk, this is it! We love you and know you really well, and the beauty of Ben’s Friends is that you remain anonymous, and what you say stays private but for many to see. And that’s good for you and everyone else too.

So this is interesting. How long ago was that?

You know, you’ve already started your book! Many of your posts are straight from gramybear’s heart and I think of them as opening chapters. Why not collect them all up and start there? There are plenty of books that are written in diary form. With a start like that, you can always revise and rework the original material.

What do you think?

Seenie

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My dear Gramybear, though I have never met you in person, I have met your heart. You are so kind and compassionate and courageous. You are also brave and an inspiration to many. I know there are many, many people who hide their pain. I’m glad you are not suffering in silence. Pain seems to be a more “ acceptable “ illness. But oh how many people suffer in silence about depression, anxiety, shame, guilt, trauma. Having fibromyalgia or any other condition discounted by medical professionals is wrong. I applaud you for taking the time to educate those who don’t believe. I can happily say that I see a therapist three times a week and my psychiatrist once a week. These two people have saved my life a number of times. These two people are my most trusted support. Their care and wisdom are unconditional. I saw my psychiatrist today. His mother in law just died of Covid. The funeral is tomorrow. But in our conversation he said something goofy and I laughed, and he said “ I just wanted to see you smile and laugh”. He cares. My therapist is an angel sent from God. I have a lot of trauma and some of it is unique. She specializes in trauma. When I feel like giving up and the weight of sadness is heavy, she will say “ Just hold on to my hope. We will get through this together.” If there is anyone out there suffering in silence, please reach out. Just like my dear Gramybear is doing. Not long ago, I was going through a rough patch. It was my Ben’s Friends family that helped me and Gramybear was one of them. :heart: WE ARE NOT ALONE. WE CAN GET THROUGH THIS TOGETHER!!! Thank you Gramybear for starting this post or thread or whatever it’s called.:thinking::hugs:

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I never thought of writing my book in journal form. I would be better at that as I love to write, I love looking up quotes that have a message and also help others. Thank you for that wonderful suggestion!!

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You are right, we are NOT alone! Not any longer! I wasn’t sure if I should only post topics regarding Fibromyalgia here so thank you for letting me know I was safe to share my whole self. I’m not very good at being untransparent I guess I could say. I’ve always worn my heart on my sleeve and tried to make others feel better about themselves. I wanted so badly to be a psychologist and went to college in my 30’s but my health just kept getting worse. I talk to my psychologist whenever I need him and I used to talk with my Psychiatrist once every 3 months but she wants to talk to me every month for a while due to my stress and depression. You too are blessed with a wonderful therapist!!! My Psychiatrist loves the Lord and my Psychologist is a retired Pastor! I truly feel blessed to have both of them. And lastly but not least…I am so very sorry for the loss in your life. Sending you love and gentle hugs!

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When that Psychologist dismissed my Fibromyalgia, that was soon after I was diagnosed and I was diagnosed in 1996. And recently diagnosed with EBV a year ago. I also had a psychologist who said I had the eyes of a witch. That was the last time I went to her as well. When we or at least speaking for me, when I was diagnosed, I didn’t think anyone believed me and felt ashamed because my illness was not seen by others. But we matter, we have nothing to be ashamed of, and our health issues are as real as the blue sky or a rainbow. (Trying to think of pretty things) I’ve been called crazy, too honest, etc… And I used to think that was bad. My mom always told me I was too nice and way too sensitive. I no longer think any of that is bad, not even my health issues. Because they are part of me and that’s okay. I think I’m rambling now. So sorry.

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Ramble away, my friend! That’s why we are here.

I was diagnosed in 1996.

Ah, there’s been a lot of changes in the recognition of FM as a “real” disease since the last century. (OMG, that’s like 25 years ago!) The fact that Ben’s Friends has a community is testament to that: we don’t deal in imaginary ailments!

Gramy, if you are interested in having a look at your post “collection”, you find it this way:

  1. Tap your avatar (the illustration is mine …) image

  2. Tap the “head” icon . image

  3. Then “Activity” image

And everything you’ve posted is in one place! Aside from using the posts as material for your best seller, a log of your activity is a really nice thing to look through, to see your progress and your ups and downs.

Seenie

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Thank you for sharing this information with me. It’s really good to know!!

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The inner workings of the website have some amazing features!

S

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GramyB, what the what??? A psychiatrist told you that you have “witch” eyes??? That’s crazy! Your psychiatrist needs a psychiatrist! And fast!!! (I’m glad you quit going to that one…)
It sounds like you’ve got someone good now, who is in your corner. :blush: And, I bet you have very pretty eyes. I definitely know you have the kindest heart!

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Hope that didn’t go to your heart too much! When I told someone at a conference what I was studying at university for, she told me something like I shouldn’t, my eyes had no deep soul, or something like that. Thankfully, I forget. I could say something about my short impression of her eyes and personality, but I won’t…
At the time of getting my fibro-diagnosis a year ago my wife urged me to try a Christian counsellor, not really psychotherapist or psychologist. He was sure I had a depression and preached to me about how to learn to forgive, wasn’t listening to what I was saying that I was more like forgiving too much, or not able to grasp it or be responsive to that. He meant well… I much preferred all other therapists.

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You are so sweet and thank you. I smile with my eyes as someone pointed out in the grocery store today…since I had a face mask on. LOL… I was so hurt by that remark about having the eyes of a witch!

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I have also been thinking about writing a book–for a long time. It would be half fiction, half memoir, and contain some medical information. I also have no idea where to start. But I’ve been writing short stories for a while and trying to get them published. Maybe a short story can be a good starting point; you can turn a story into something longer eventually. Good luck!

Playing the piano sounds like it could be helpful medically, or at least distract you. I’ve heard of people with various conditions feeling somewhat better when playing music or singing.

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I noticed some of your articles this am, my daughter has been suffering from Fibro for years and also at times has been made to feel as though she was a nuisance with all these unexplained symptoms. I honestly do not think Doctors quite know what to do for these patients. For the past 2 years my daughter has steadily been getting worse with headaches, pain, hot flushes, weakness and more of the wretched symptoms, and just kept getting put in the too hard and sent home. Recently she changed Dr’s and this one sent her for a scan & guess what they found !! A lump on the top of her Pituirity Glands spelling may be not quite right. The pain etc in her body and the exacerbated fribro symptoms as well as quite high blood pressure is intense so now I have an extremely unwell daughter, who is awaiting an appointment at a major hospital for more in depth scanning to see if they are benign also if the tumour has spread anywhere else.

So if the symptoms worsen and you are persistently dragged down I just urge you to annoy your Drs until they do not leave any stone unturned. Too often they put Fibro patients into the too hard basket when they should pay more attention.

I understand this may not always be an outcome, but it something that the previous Doctor should have picked up on. I now have a daughter with extreme high BP most days and can hardly get around. Because of Covid 19 awaiting appointment with major hospital which is 6 hours drive away for her…

I understand anyone’s frustration re trying to get dr’s to understand Fibro symptoms as my daughter has suffered for years…

Mum de k

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I took piano lessons as a child but I don’t remember any of it. I have a learning disability which makes it hard for me to learn via textbooks, reading directions, etc… How I got on the Dean’s list in college is beyond me! LOL
Maybe I can learn by just starting and seeing if I can learn via my ears! I wrote a few essays in college and I got A’s on all of them. And I used to write pros. My English teacher told me I should try and get them published but I thought they were silly and for my eyes only. She disagreed. I want to write a book that is about my life, adding quotes to explain how they too affected my life. I don’t think that the last sentence made a lick of sense, did it? Oh, dear. I always wished God would have blessed me with a good voice and artistic abilities. Guess he felt different about that. I can’t sing, can’t play an instrument even after taking the violin and drums in school! I was going for a degree in Psychology in college but I was not smart enough or didn’t have enough confidence in myself, to get that far. I loved college though. I always wanted a job that helped people. As for where you should start? I was told to just start writing and not worry if it’s in any kind of order. That can be fixed later. I wish you all the best and would love to read it when you finish!!

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You are so right on Mum! I got so tired of every doctor telling me that what was wrong with me was just another Fibro symptom and later finding out it was not Fibro at all. Fibro may have just made it come to the surface sooner, but NOT the cause. My list of health issues are so long that my poor doctor has trouble keeping up but she is good at knowing the difference. A rarety now!

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Hi JayC. Yes, she actually said that and I have never forgotten it. So much of the life that hurt me just stick like glue. And exactly how did this person you are referring to, she didn’t have a deep soul? So glad there are so many people who are psychic! Not… I believe the eyes tell so much about people. They share if someone is sad, happy, worried, etc… but a witch? Maybe the good witch in the Wizard of Oz? LOL

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You are such a wonderful lady Aussie Mom. I just wanted to say it even if I have already said it! Big Gentle Hugs.

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I :heart:YOU TOO, GRAMYB!
You, know, I am very sensitive, as it appears you are, as well, and I can still feel the hurt from things someone may have said about me, or to me, from years past. I try to let it go, as it will eventually come back on them. We do reap what we sow… That’s also something I LOVE about this site. It has real moderators that care and that make sure everyone is treated fairly and kindly. It is a special place to be, for sure!
Thank you for your many wonderful posts & inspiration! You are our “good” witch, with beautiful eyes that smile and a beautiful soul. :purple_heart:

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MumD, you are a wonderful mom and advocate for your ailing daughter! I hope that the doctors can help her and that her health will improve and her pain lessen. Please let us know how you are both doing in the days to come. :purple_heart:

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