Fighting and struggling

Justsomeguy

New member
Joined
Jul 23, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
11/2019
Country
CA
This is the first time I've have ever wrote on one of these so I do hope I offend no one and apoligize for any mis-spelling.

I want to say I am so sorry for the thousands of others who have this horrible life altering condition, My empathy truely goes out to every single one of you and what you are dealing with. I too have this randomly relentless condition and have suffered with chronic pain for the majority of my life and for myself things have not progressed so well. Symptoms have changed for me over the years of dealing with body pain and the last 8 months have seemed to be in over drive. When things started for me it was fairly simple headaches, random cramping, spazisms and pain in wierd places where I had not suffered any type of injury. Now a days it is a little more severe and the list has grown to a ridiculus size. I have not been able to have a real conversation with anyone about my symptoms or daily dealings, even in the pain management classes I have attended I have felt alone in dealing with this new challenge in life. I feel horrible talking about my symptoms with others as I do not want them to feel as if I am in some twisted competition on who is suffering more or that what I am going through is worse so I have down played my dealings to everyone I talk too.

It is hard to share this with individuals as even I struggle with believing that our brain could become so mis-wired that it is the cause of our vastly misunderstood condition and the complete randomness of how it affects each person. I have had only one incounter with someone diagnosed with Fibromyalgia and I am tired of feeling alone in dealing with this and I am sure I am not the only one, hence why we are here sharing our stories, asking for advice or just wanting to vent our daily experiences. So if you take the time to read what I am writing I greatly appreciate you putting value in what I am sharing and taking a moment out of your life to give to me, and if you wish to share your experience with me I will return the same value in kind.

My sypmtoms have greatly increased and have made my ability to function more than just a challenge. I struggle with comprehending and dealing with this and like so many others I have so many questions I have asked and the reply I get in return is "yes it could be caused by your desease" or " I'm not sure" . To give more context, some of my symptoms are, extremely high pitch ringing at random, waves in my eye sight like I am hallucinating, swelling in my feet and hands, numbness in different parts of my body, and sometimes it feels like I have lost control of my hands and I do not mean they do random things but rather I am unable to move them, these few examples do not happen all the time and have no reconizable triggers and it frustrates me to no end. How do you share that? How can I present what I'm going through when it sounds so ridicous? and yet it is real for me. It took years to even find a doctor that took the time on me and the only reason that doctor took me serious was because I had a bad flare up infront of them.

This condition has put an extreme mental strain on me, and the people that claimed to be friends have left my life and made a choice to ignore my existence, some have gone as far to even condem me. The sad part is I have been made to feel guilty for something that is a medical mystery, and what makes it tragic is that I am not the only one who has or is going through this. I am extremely mental adapt and have gone through some unfavourable life moments and not only made it passed them but thrived. Now I am having more than just a struggle to fit my life, the constant feeling of alienation, overwhelming depression and anxiety, doing things like putting my keys in the fridge or the milk in the washroom, even writing on this forum I have forgotten what I was doing and have had to read what I typed multiple times. I understand what I have wrote may come across as acting like a poor victimized soul in search of sympathy or for people to feel sorry for me, but I am unable to think of a better way to share the impact fibromyalgia has had on me and that I truely empathize with all of you and what ever struggles or triumphs you have experienced. I truely appreciate the posts that have been placed on this site, your conversations with eachother have inspired me to not feel bad about being in a constant state of pain and I thank you for that.


I look forward to recieving your stories and advice

Sincerely
Justsomeguy
 

jane somerset

New member
Joined
Jul 23, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
07/2020
Country
UK
State
UK
Thank you so much for posting this it has made me feel so much less alone i too are experiencing the same symtoms and struggles as you and when i read the bit about problems with your vision i have blamed that on aura from migraine as i didnt know fibro could effect your eyes and dr hasnt said so. Its a constant struggle to get through the day even thinking is hard !
 

Justsomeguy

New member
Joined
Jul 23, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
11/2019
Country
CA
Your very welcome and thankyou for reading.

I am sorry you have to struggle with this as well. Going through that lonely uncertainty takes a toll on anyone. Yet those moments of brutality are what pushed so many others and myself to reach out so we don’t have to feel alone. You taking the time to share has given me a tremendous feeling of value so I thankyou again.
 

jane somerset

New member
Joined
Jul 23, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
07/2020
Country
UK
State
UK
Hi Justsomeguy Thankyou It certainly has made a difference reading your story and i want to know as much as possible about this horrrid illness I have only just got a diagnosis but symtoms started last september but ive had some lonely times since then and im getting worse Just when you think enough is enough something new happens.
 

Justsomeguy

New member
Joined
Jul 23, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
11/2019
Country
CA
I understand and can relate to the continuous surprises that this disease comes with, I unfortunately do not have a huge knowledge on it and a lot of the solutions that are helping other people have not worked for myself yet. One thing that has help me manage was broadening my speech patterns and how I word what I’m saying, in doing that I have been able to decrease the mental strain a little.

Accepting the day you struggle to function and feel unable to carry on with tasks I found extremely important, and I found that one out the hard way. So instead of being harsh on yourself saying things like I feel useless and I should have got that done today, just let yourself have the moment to remember you are suffering and gently encourage yourself to take that first step.

If I may use myself as an example,

What I wrote earlier took about 2 hours to encourage myself to push the post button. I understand that may sound a little silly but it makes a huge difference. To make a different view point I’ll use the same example but word it different.
I have a constant struggle with anxiety and sharing personal information about myself, if I would have constantly been on myself to quit procrastinating or just do it there is a good chance I would have made my own anxiety worse and not posted it.

So by just accepting my anxiety and convincing myself when I’m ready I will. Just being kind to myself reduced my anxiety enough to post it, that same concept can be applied to the mental abuse we most likely all put ourselves through when we forget to be kind to ourselves. It’s very similar to many post I’ve seen about others struggling with the people in their lives not understanding what they are going through and they feel less valued,
the difference is that we ourselves are the ones forgetting to understand what we are going through so in a sense we have done the same thing and made ourselves feel less valuable.

I hope this does not sound like useless rambling and that I have painted a larger picture that can be used as a coping tool for you.

And one more thing, you are no longer alone in your struggle, you have access to so many people on here that can provide different solutions.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Justsomeguy, I am glad that you had the courage to post on this forum because I can see that you are a person who can give and receive support and we need that here. All of us need that. I can relate to a lot of what you are saying, and also struggle with depression and anxiety almost every day. You are able to recognize the mental abuse you've had a tendency to do and that's super important, and I thank you for reminding me that when I tell myself certain things that's what I am doing and I need to stop. Being kind to yourself is not something we are taught to do in this society!
We have to re-learn a new relationship with ourselves and our bodies.
I was always a person who Pushed On Through. No Matter What. Body hurts? too bad, we are not going to stop. No pain no gain. I am depressed? Well, just don't let it show and don't tell anyone. And so on. It is not easy to give that way of being up, especially when you live in a society that places value on human beings only for what they are able to DO, and not for who they are.

I think adjusting to a chronic pain condition requires a whole lot of re-learning of how to view and relate to yourself, the world, your place in the world, and other people. I have found I had to cut some people out of my life entirely because I realized that their relationship to me was toxic and brought me more stress and anxiety, which then brought more pain. That's not easy especially if it is someone you have known a long time, or a family member, or even a partner. But I have removed people who were each of those things, and feel better for it. I would rather they could have stayed in my life, but if something's not good for you you have to get rid of it. And that goes ten times over for those of us with depression, and anxiety, AND fibro.

We can learn how to live good lives even with a disability -- millions of people do. And we have a lot to be thankful for, as well, and I try to remember that daily. (Not some woo-woo Gratitude thing, just recognizing that I have it better even with fibro than millions of other people on the planet who don't even have clean water to drink). It's not easy but a person can't give up, and I have found that in time I have learned a lot. And I have a whole lot more to learn. In this forum we can learn from each other.
 

jane somerset

New member
Joined
Jul 23, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
07/2020
Country
UK
State
UK
I understand and can relate to the continuous surprises that this disease comes with, I unfortunately do not have a huge knowledge on it and a lot of the solutions that are helping other people have not worked for myself yet. One thing that has help me manage was broadening my speech patterns and how I word what I’m saying, in doing that I have been able to decrease the mental strain a little.

Accepting the day you struggle to function and feel unable to carry on with tasks I found extremely important, and I found that one out the hard way. So instead of being harsh on yourself saying things like I feel useless and I should have got that done today, just let yourself have the moment to remember you are suffering and gently encourage yourself to take that first step.

If I may use myself as an example,

What I wrote earlier took about 2 hours to encourage myself to push the post button. I understand that may sound a little silly but it makes a huge difference. To make a different view point I’ll use the same example but word it different.
I have a constant struggle with anxiety and sharing personal information about myself, if I would have constantly been on myself to quit procrastinating or just do it there is a good chance I would have made my own anxiety worse and not posted it.

So by just accepting my anxiety and convincing myself when I’m ready I will. Just being kind to myself reduced my anxiety enough to post it, that same concept can be applied to the mental abuse we most likely all put ourselves through when we forget to be kind to ourselves. It’s very similar to many post I’ve seen about others struggling with the people in their lives not understanding what they are going through and they feel less valued,
the difference is that we ourselves are the ones forgetting to understand what we are going through so in a sense we have done the same thing and made ourselves feel less valuable.

I hope this does not sound like useless rambling and that I have painted a larger picture that can be used as a coping tool for you.

And one more thing, you are no longer alone in your struggle, you have access to so many people on here that can provide different solutions.
Hi
 

jane somerset

New member
Joined
Jul 23, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
07/2020
Country
UK
State
UK
Hi JustSomeguy When are we ever kind to ourselves. we never listen to our own advice do we.I also find it very hard being kind to myself i wonder why we are like that . its very hard admitting you cant do things whether they are practical or things you used to enjoy. And yes you certainly find out who your friends are or should i say were.I agree its the not understanding why our body is letting us down or what it is that makes us feel the way we are is important whats that saying knowledge is power and thankyou in saying im no longer alone Your post was definately not useless rambling
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi JustSomeguy When are we ever kind to ourselves. we never listen to our own advice do we.I also find it very hard being kind to myself i wonder why we are like that . its very hard admitting you cant do things whether they are practical or things you used to enjoy. And yes you certainly find out who your friends are or should i say were.I agree its the not understanding why our body is letting us down or what it is that makes us feel the way we are is important whats that saying knowledge is power and thankyou in saying im no longer alone Your post was definately not useless rambling
My belief is that we are not kind to ourselves because we are not taught to be. All our lives people have told us "work harder, work through the pain, do more, do better, you're not doing enough, you're not accomplishing enough".....etc. And most of us can't afford to take days off work if we feel sick so we struggle through the pain or the fatigue.

It's hard to admit you cannot do something because you don't want to admit to weakness, or get pity or be thought of as less competent. Most of us hide it when we are feeling grief, or depression, or pain, or anything else because that is what the world teaches us to do. The result of that is that we never learn how to be kind to ourselves, even though we are told to be kind to others.

I think one reason people are so cruel to each other a lot of the time is that they don't know how to be nice to themselves. If someone is going around all the time with internalized negative talk about themselves, they find it hard to be nice and empathetic to others. As I have been struggling to learn to be kinder to myself, I find that it makes me equally want to try to be kinder to others. Not that I started out as a cruel person, just that I am striving to be nicer to others as I strive to be nicer to myself. I find it's easier to be nicer to others than to be nicer to myself.
 

Justsomeguy

New member
Joined
Jul 23, 2020
Messages
7
Reason
DX FIBRO
Diagnosis
11/2019
Country
CA
That is so true sunkacola

We as a whole have forgotten the value in each other and have deviated from be a whole to creating boundaries, comparing each other to make ourselves feel better and outcasting what we can not comprehend. It is a big cause of individuals who are suffering to remain unheard or condemned to solitary.

I understand we have our flaws but blatant disregard of compassion is not a flaw it is a choice. Just like cruelty towards each other but again a lot of that has to do with a mass consensus that everyone is more important than everyone else. And those with social anxiety situations are left feeling helpless even with all the anti bullying, and unity scenes we have never been more distant with each other.

I am going to stop writing now as I could go on beyond any limits on that subject. I guess the important thing to remember is no matter what you choose to say, how you choose to act you can not make those choices for anyone else.


“ be a friend to everyone
Do not think everyone is a friend to you “

Sincerely
Justsomeguy
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
638
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Good words, justsomeguy. The only thing I will add is that if a person has been treated with cruelty and has not been shown compassion, that person doesn't know how to give it to others. This is not the case for everyone who is lacking compassion or is cruel, but it is for some. In this way, of course, bullying and cruelty and lack of compassion breeds more of those things.
 
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