That horrible feeling 😔: When you... - Fibromyalgia Acti...

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That horrible feeling 😔

honeybee13 profile image
15 Replies

When you finally realise the friends you’ve lost because there is always something going on when they ask how are you and you thought they cared.

Husband asks do you need another blood test to see if it’s the Fibro and I thought he understood.

Silly me

Feeling lonely 😞

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honeybee13 profile image
honeybee13
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15 Replies

Hey you are always welcome on here where we all care

honeybee13 profile image
honeybee13 in reply to

Thank you 😊

honeybee13 profile image
honeybee13

Thank you 😊

stargazer61 profile image
stargazer61

you're not alone...we all suffer on this planet...when i am at the dentist i practice hard to think of others' sufferings that far outweigh mine like the Dalai Lama, holocaust sufferers (i read a lot of books that inspire me and amaze me how other people can display kindness and forgiveness) etc, whilst undergoing a filling replacement that involved sedation, 4 jags, drilling for an hour and a half (with tmj, chronic whiplash pain etc it hurts to open my mouth for a couple of minutes!) i offered my suffering up to the collective suffering and had my dentist laughing when i told him hitler would have been scared of him as going to the dentist terrified him. Anything that helps get a perspective on our loneliness, fears, illness, hardship is worth pursuing, i try to put a lot of effort into that in order to feel proactive, otherwise i feel low in worth. even though my energy levels are unpredictable i do a little volunteering and little things to help others and find ways to bolster my self-worth that don't fit into our society's terms of worthiness - i look on THAT as my job. Do anything that brings you comfort or joy, whatever it is. Hunt them down. Don't give in to negative thinking - that's one of the few things you do have in your control when you're unwell. I know it's hard, but you are not alone, many people are in their own similar boats and there's always always those who are worse off. What makes your heart feel good? Try to make a list and refer to it and do those things as often as you can. Love the name btw...Try to be gentle with yourself and talk to yourself like you would a beloved child x

honeybee13 profile image
honeybee13 in reply to stargazer61

Thank you for your up lifting words ☺️

Badbessie profile image
Badbessie

Both my wife and I have fibromyalgia. There is a little comfort to knowing your partner understands and no explanation is needed.

Sandy1212 profile image
Sandy1212

It is really frustrating when you see that people don’t understand or seem to not care when you’re going through something ongoing and serious but we are all here and we will understand and support you! Try to find what helps you when you feel lonely or down whether it is coming on here and talking to us or explaining to friends/family about your conditions and what you go through but just know that you are not alone!

Midori profile image
Midori

I had and emotional wobble the other day; very unusual for me.

I realised that over the last few years I have lost so many rellies that I an mow the Matriarch of my clan.

Scary thought

oldwomaninpain profile image
oldwomaninpain in reply to Midori

when my mother was alive my son always referred to her in the 'formal person' - either French (vous) or Spanish (usted), as a mark of respect to one's elders, English doesn't seem to offer the same respectful tone

NOW he does it to me - gosh it makes me feel so old and I cannot shake him of the habit

I too am the most senior member of our family, I outrank all my cousins by at least 10 years, there are no parents, aunts, uncles etc left, I know they've gone 'cos I have attended lots of funerals!

It makes me feel exceedingly mortal, like there's not long left, and occasionally I whimper to myself, I miss being able to snuggle with OH when I feel this way - OMG he's been gone 7 years this Dec, how time flies

honeybug profile image
honeybug in reply to oldwomaninpain

Sooo sorry owip 😊🌿🌸🦋

Love 💗 hugs 🤗 and kisses 😘

EJ

BirdlessBox profile image
BirdlessBox

I have become quite isolated, I do not have the energy to keep up with the friends I had, and as you said, so many people do not understand. I have been treated as though my condition is a sign of poor character - as there is nothing as obvious as a broken limb people think it's all a case of attitude. I have had a lifetime of not being taken seriously by Drs, at least 2 occasions that could have been fatal. Now I'm angry and I am trying to push for help - when I have enough energy.... With your husband remember than mens' brains tend to go to solution finding and though his comment may not feel empathetic it doesn't necessarily mean he isn't. The friends you are left with are the ones worth keeping, and from now on you will know what to look for in making new ones. You aren't alone in this, it just might take a bit more time to find your real clan. All the best :-)

KateMaguire profile image
KateMaguire

We have all been where you are honey-thats why we need our friends on here,I truly believe that the only people who understand fibro are the ones who suffer from it. Maybe your other half means that the blood test will rule everything else out? xx

honeybug profile image
honeybug

Sooo sorry honeybee 😊🌿🌸🦋

It’s so easy to be judged by our outward appearance. I’ve lost count of others that have done this to me. It’s unfortunate and very painful for all who experience this kind of treatment.

There are countless people walking on this Earth that are terminally ill. They look perfectly fine but on the inside they are ravaged by terminal disease. They pass right by us everyday without others being the wiser.

I’ve experienced the deaths of so many loved ones and friends in my lifetime it’s been a life lesson. Each of them were human...flesh and blood. All of them needed compassion and true loving support NOT just lip service (meaningless words that they feel have met their duty in whatever their relationship to the suffering).

They were mostly left alone unsupported and out of sight out of mind as those who professed to “care” went on with their lives.

I have learned that a true friend/loved one will be one who is always there for you no matter what and if you’re truly blessed will know what’s to be done for you and do it before you know it yourself.

Everyone could do something to help another...even a heartfelt phone call means more than words can express.

That’s why this forum is of the utmost importance. It allows us to support members/friends on here from all over this World thanks to this marvelous technology and the staff that oversees it for us.

I’m sorry you are not understood nor being supported in your plight.

I do sincerely send you my loving support and understanding.

I’m not interacting much nowadays due to narcolepsy like spells and severe systemic osteoarthritis especially in my hands (need joint reconstruction surgery).

Please take care and know that there are those of us who really do care about you.

My hubby didn’t believe my multiple diagnoses until he went to my different doctors with me and heard them from the doctors mouths. Sad it took this to be believed but others (OH included) just have to have it in written or spoken proof from the source itself.

Take care dear. Try listening to comforting music or feel good movies. Do things to occupy your mind/redirect your thoughts when sadness loneliness come over you. If depression develops maybe a mild antidepressant will help.

Best wishes dear. Abundant blessings.

EvaJo 😊🌿🌸🦋🙏🤗💗😘😇🕊

Honeybee you are definitely not alone, when you are surrounded by loved ones but they just don't understand your physical pain, especially when you feel like every thinks you are imagining the pain. This group seems to really understand how we feel the pain, mood swings we all are suffering on some level similar. So keep smiling :) and just visit this site there seems to be always some around

AllthatGlitters profile image
AllthatGlitters

I would say your friends weren’t real friends if they weren’t interested in you and your illness.

Maybe give your husband the link to this site so he can read for himself how difficult it is living with fibromyalgia x

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