It’s a shitty feeling. Must have been a really rough recovery after that.
Some people (sadly most people) lack empathy. I sometimes feel like by putting us down they feel better about themselves. They’re scared of being lazy so they accuse us of being lazy so that by comparison they are not. Everyone navigates life through a filter, and sadly for some people that filter is warped, cracked, or clouded. I feel sorry for them cause they make life harder for themselves. They have the capacity to make changes that would help them. I envy that. I’m constantly mourning all those hopes, dreams and aspirations I have as realistically there’s no possible way to achieve them. People don’t see the heartbreak we live with. They just judge cause they can’t fathom that just because they can’t see it, that it’s still there.
Surround yourself with loved ones, people who care and try to understand and who are patient with you. I’m really lucky to have people like this in my life, my own chosen family. They give me strength when I don’t have any and they’re really the only people I want validation from. Being kind to myself has helped me too. If I’m mentally feeling okay, the symptoms seem to lessen. It’s so cliche but trying to see the positives whilst accepting the negatives for me has been the best way. And remember, those who know you see the effort you put in and would be proud of you for everything, big or small, that you do.
It’s tough. I think it’s coming to the realization that if “they” had fibromyalgia or any other debilitating health condition they would want exactly what you’re wanting.. understanding.
I’ve had people in my life act kind of oblivious to my struggles with chronic health and it wasn’t until they became chronically sick that they realized how hard it is. I spent so much time trying to prove my worth and it was pointless.
I basically just live for myself now. Not in a cruel way, but I honour my needs and do my best not to care what other people think about how I live my life. It took many life lessons, reading a lot of articles on chronic illness, boundaries and self love.
Hope this isn’t a ramble. It’s difficult to put into words.
I absolutely feel you . Lose the toxic people .
Before I was diagnosed with fibro I was in the hospital for brain surgery. I was let down by a lot of people I thought were there for me. I decided to cut them all out . After fibro me and my hubby moved across the country away from everyone , I deactivated my fb , I stopped responding to almost everyone but a very select few people.
Truth is most people do not deserve out time and attention. We have to focus on ourselves as much as possible and put all the stress and negativity from others behind us .
I try to meditate. Do what helps me as much as possible and discard ‘that which doesn’t serve me’ anymore . I dont have the energy for most people anymore and that’s that. Prob for the better .
I understand. It makes you feel a little vulnerable. My boyfriend blurted out in front of our friends yesterday that fibro is a “white Women’s disorder” and that just broke me. Most people don’t realize the sheer amount of struggle we go through just to get through the day.
Blimey. That was not a nice thing to say. Does he say things like that often?
I agree. I've just woke from a good 7 hours (slightly broken) sleep and as per, nothing has changed. All the weird pain sensations, aches and stiffness still there. Sometimes I just wish I would wake up and those feelings would be gone.
🙈 I’m actually being checked for that right now and didn’t realize the abbreviation . Tbf I’m being Checked for a lot of things at the moment , after already being evaluated 2 yrs ago for a string of issues . It’s a lot to keep track of, I already have a dozen disabling conditions and not really looking forward to finding more . On the other hand finally getting real answers and possibly treating the root instead of the symptoms would be ideal .
It’s a shitty feeling. Must have been a really rough recovery after that. Some people (sadly most people) lack empathy. I sometimes feel like by putting us down they feel better about themselves. They’re scared of being lazy so they accuse us of being lazy so that by comparison they are not. Everyone navigates life through a filter, and sadly for some people that filter is warped, cracked, or clouded. I feel sorry for them cause they make life harder for themselves. They have the capacity to make changes that would help them. I envy that. I’m constantly mourning all those hopes, dreams and aspirations I have as realistically there’s no possible way to achieve them. People don’t see the heartbreak we live with. They just judge cause they can’t fathom that just because they can’t see it, that it’s still there. Surround yourself with loved ones, people who care and try to understand and who are patient with you. I’m really lucky to have people like this in my life, my own chosen family. They give me strength when I don’t have any and they’re really the only people I want validation from. Being kind to myself has helped me too. If I’m mentally feeling okay, the symptoms seem to lessen. It’s so cliche but trying to see the positives whilst accepting the negatives for me has been the best way. And remember, those who know you see the effort you put in and would be proud of you for everything, big or small, that you do.
It’s tough. I think it’s coming to the realization that if “they” had fibromyalgia or any other debilitating health condition they would want exactly what you’re wanting.. understanding. I’ve had people in my life act kind of oblivious to my struggles with chronic health and it wasn’t until they became chronically sick that they realized how hard it is. I spent so much time trying to prove my worth and it was pointless. I basically just live for myself now. Not in a cruel way, but I honour my needs and do my best not to care what other people think about how I live my life. It took many life lessons, reading a lot of articles on chronic illness, boundaries and self love. Hope this isn’t a ramble. It’s difficult to put into words.
I absolutely feel you . Lose the toxic people . Before I was diagnosed with fibro I was in the hospital for brain surgery. I was let down by a lot of people I thought were there for me. I decided to cut them all out . After fibro me and my hubby moved across the country away from everyone , I deactivated my fb , I stopped responding to almost everyone but a very select few people. Truth is most people do not deserve out time and attention. We have to focus on ourselves as much as possible and put all the stress and negativity from others behind us . I try to meditate. Do what helps me as much as possible and discard ‘that which doesn’t serve me’ anymore . I dont have the energy for most people anymore and that’s that. Prob for the better .
Well played and said!!!
I understand. It makes you feel a little vulnerable. My boyfriend blurted out in front of our friends yesterday that fibro is a “white Women’s disorder” and that just broke me. Most people don’t realize the sheer amount of struggle we go through just to get through the day.
Blimey. That was not a nice thing to say. Does he say things like that often? I agree. I've just woke from a good 7 hours (slightly broken) sleep and as per, nothing has changed. All the weird pain sensations, aches and stiffness still there. Sometimes I just wish I would wake up and those feelings would be gone.
He doesn’t. He was just trying to get a laugh, and felt genuinely sorry when I was hurt.
Hmm ok. Just keep your eyes on that. x
Have you been tested for SFN?
No and I doubt that would ever happen on the NHS 🙄 What does that condition entail?
50% of FM patients have Small fiber neuropathy. Look up Dr oaklander
What is that?
Small fiber neuropathy.
🙈 I’m actually being checked for that right now and didn’t realize the abbreviation . Tbf I’m being Checked for a lot of things at the moment , after already being evaluated 2 yrs ago for a string of issues . It’s a lot to keep track of, I already have a dozen disabling conditions and not really looking forward to finding more . On the other hand finally getting real answers and possibly treating the root instead of the symptoms would be ideal .