Old 11-02-2017, 09:00 AM #31 (permalink)
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Default Re: True hell waking up in the morning

Oh gosh no Diamond I wouldn't dare cause I'm not a funny person at all when I really try to be ( usually quite the opposite effect)

I used to wonder why my bf like to tease me so much in the silly way, ( it's his way to distracting me from pains and panic ) when I asked why he said that because I'm funnier when I'm little angry. I guess my world is kinda work backward since I've got fibro.
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Old 11-02-2017, 09:16 AM #32 (permalink)
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Default Re: True hell waking up in the morning

I'm very sorry lyrin , if I had offended you in someway .

But you've been through alot and so as many people here. Even when all of us are not the same with so many background of illnesses and different disorders I hope you can find some comfort here at least with all your suffering and copping , we are here to support each other . My knees often on fire too and it burn harder during summer.
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Old 11-02-2017, 09:42 AM #33 (permalink)
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Default Re: True hell waking up in the morning

Oh goodness no, I wasn't offended at all.

I just felt really bad for whoever had said they envy people with lives like mine. I wanted to let everyone know it's not easy either. Like the people here, life is harder than me than for most people(even before the back/fibro issues). But just because you can't see behind the curtain doesn't mean it's great. There are many other hidden issues you can have.

In my particular case being jealous of me would have to include "man, I wish I was autistic person with bipolar" lol.
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Old 11-02-2017, 09:54 AM #34 (permalink)
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Default Re: True hell waking up in the morning

wait who said they jealous of you? I must have missed something did I ?
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Old 11-02-2017, 10:08 AM #35 (permalink)
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Default Re: True hell waking up in the morning

I truly think it is time to talk a bit more about the whole 'jealousy' issue, mostly because I feel that this forum really needs to stay a safe place. For me, right now it is the only place I can be at. I have nothing else. And I know I am not the only one feeling this way.

I want to make clear that I was completely misunderstood (and feel that I was rather harshly attacked) for saying "When I hear someone with fibro still working full-time with kids, a social life etc. my first reaction is jealousy and shame. And I hate myself for it."

Sorry for being human, and having the decency to admit to my initial feelings of jealousy and shame. But then I also add that I hate myself for it because I know these emotions are wrong and I know your suffering, no matter how many hours you work or not work, how many kids you have or not have, or whatever is or is not happening in your life, your suffering is as real as mine and everybody else's. It is also as invisible as mine, but I do see and know your suffering. We all do, because we have all been there. We didn't get to where we are now (the place where you feel shame, jealousy and self-hatred) overnight.

But I am only human, and every day I mourn the fact that fibro (and much much more) has taken away so much from me. And yes that includes being able to work, having kids, grand kids, having a partner or just a single close friend, or simpler things like being able to wake up feeling ok for once.

We all may have different backgrounds, different life stories, diagnosis, different pain thresholds, different triggers, completely different lives, but please let us on this forum focus on what we do have in common - the fight against invisible illnesses. And at times an even bigger challenge of fighting against a very cruel world outside of this safe forum.

Let us support each other and not compare, contrast...that is for the outside world.

If you are here and looking for support, I am here for you, we are here for each other.
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Old 11-02-2017, 10:33 AM #36 (permalink)
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Default Re: True hell waking up in the morning

"Fibro affects each person in a different way. When I hear someone with fibro still working full-time with kids, a social life etc. my first reaction is jealousy and shame. And I hate myself for it."

From vikythecat on the first page. It was a while ago.
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Old 11-02-2017, 10:58 AM #37 (permalink)
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Default Re: True hell waking up in the morning

Oh Lyrin . you misundetstood

That jealousy is a Confession from the deep sorrowful feeling of someone like vicky , me and many others who's so long and so deep in chronic fatigue CFS/ME life have us locked us in without allowing us to have a life to enjoy outside world as any normal human should. It from being cut off in life and feeling like we are looking out side the jail cell and watching other performing things they call the everyday task with envy and jealousy . It's a different kind of torture that now people refering as "the spoon theory" This kind of feeling is no ill will towards anyone particularly . And we are deeply regret for thinking so but we also can't help our self to be.

It's the isolating insanity . Not allowing us to have any life even the harsh working life that we long for. It not just a constantly tired feeling or painful exhaustion each day. It's knowing the feeling that we are no longer count as a human being , just living day by day watching the world goes by without us.
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Old 11-02-2017, 12:24 PM #38 (permalink)
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Default Re: True hell waking up in the morning

lyrin, It is so true that we each fight battles no one else can see.

And this is a very good thing to remember, when you start to feel envious of any one else's life, no matter what the reason.
I learned this lesson very well early in life.

One thing that I always remember, every single day, is how amazingly rich and privileged we all are.....yes, every single one of us on the forum is rich in comparison to the vast majority of other human beings on this earth.

Remember this: there are millions of people who never in their lives have had (or probably ever will have) a cold, clean glass of water to drink. Let alone a place to live, electricity, medical care.
If you have access to the internet and are able to use a computer then you probably also have a place to sleep every night where you can close the door to the outside and have a roof, and you probably have enough food to eat and clean safe water to drink. That puts you in the top 7% of the richest and luckiest people on earth. True statistic.

Yes, we have a lot of issues with our fibro, and I complain as well! but then I try to take a step back and realize that there are undoubtedly many thousands of people who have as much pain as we do, but don't have any medical care at all, or even a home or enough food.
And then I am grateful. Very grateful.

Doesn't make our problems better, but maybe adds some perspective.
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Old 11-02-2017, 12:42 PM #39 (permalink)
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Default Re: True hell waking up in the morning

I'm terribly sorry if I offended anyone. I didn't mean to.

My goal was simply to say I don't feel it's right (feels correct?, not like right or wrong(is that autism thing?)) for someone to look at me and be jealous. Not for myself, but for THEM. I mean I guess people are often envious of what others have be it a movie star or just a neighbor that has a bigger television.

In my particular position things are not as they seem. But if I just told you about the good parts of my life it may seem great but it's really quite hard for me. I think many people still fight. Even in ways we can't see.

And for me personally to have someone be "jealous" of me would make me very sad. Also because I function day to day right now many people look at me and say "oh there are no problems here". I'm very lucky to have the doctor I did who was willing to look at fibro as a problem. Many would not.

My post was to say "hey, things you may not see may affect the people you feel that way about and different situations may apply. Don't take things at face value and be happy for what you ARE able to do and what changes you can make."

Sorry. If you'll note in the previous post I have autism. If anyone knows anything about autism its that I do not communicate well so sorry if it came across wrong I am sorry. Always feel free to ask me for further information or for clarification.
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Old 11-02-2017, 09:08 PM #40 (permalink)
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Default Re: True hell waking up in the morning

Don't worry Lyrin , I've made many mistake of communication too my self far too manytime that I can count. . And Vicky please don't be trouble by this.

My mind often not right either. And I can never appologize enough for words that might have hurting others in my wrong frame of mind and in some unfortunate timing even when my apologies wasn't accepted , I've learned to try not hurt my self by taking it too personally. Sometime I tried to reaching out and got shutted down also. But forgiveness is the word that I need to live by in order to save my self from pains both mentally and physically.

We as the fibro sufferer we are all deep in grief within our self and our heart been shattered by our own body and the world out there , which made this place more warm and welcoming with many people who can understand us. Some may not , we need to learn that is ok to once a while the misunderstanding words from others who have misfortunate in the way that we can not see or even could imagine may accidentally hurt us now and then , but if we think about it a little longer it might not be what we think it was.

I'm jealous of anyone who can enjoy consume abnormal amount of oxygen normally without getting an attack from it . Because I'm suffering from chronic hyperventilation/panic attack every single day it always forcing me to breath so fast my brain often oxygen overload and I always feel like I'm choking to death all the time on oxygen nonetheless! No amount of drugs or doctors can stop it . Who would have thought that too much oxygen can be bad right? . I always need to breath in the paper bag to give my self the correct level of carbon monoxide. But if I say that out lound in public out of the contexts about my jealousy of people who can enjoy oxygen tank , just imagine what kind of attack I would get just from that ? I'll be buried alive

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Old 11-02-2017, 10:43 PM #41 (permalink)
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Default Re: True hell waking up in the morning

I take amnitriptoline. not sure on the spelling , for sleep. One of the curses from fibro is not being able to sleep. Our bodys need sleep to heal. The deep rem sleep. There are side effects, I definitly feel a little loopy in the am from it, but the side effect is worth it, for me. I tried going off them, I hate taking pills, but I was keeping my hubby up all night, wrestless, tossing and turning.
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Old 11-03-2017, 06:00 AM #42 (permalink)
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Default Re: True hell waking up in the morning

I guess we can all agree that misunderstandings happen everywhere; and here with us all suffering from bouts of fibro fog, a number of mental illnesses, sleep disorders, (English not being my 1st language) and just plain old fatigue, these things are normal.

Let's move on from this and give each other a gentle warm hug We are in this together, we can only be stronger together
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Old 11-03-2017, 07:18 AM #43 (permalink)
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Default Re: True hell waking up in the morning

Wow. I can't tell that English isn't your first language.

Just remember there will always be someone better off, someone smarter, stronger, faster. There were also people worse off, like my friend, who is my age, dieing of brain cancer. I, personally, think we should only compare ourselves to ourselves. It should be less "How can I be like that person" and more, "How can I be better than I was yesterday." or "how can I help others".

Think of yourself how you think of others. My son is horrible at anything athletic, poor thing. But I constantly tell him how brilliant he is and encourage him to participate in intellectual pursuits. I don't want him to feel bad just because he can't do certain things. We tend to be harder on ourselves than others. Treat yourself with the kindness you treat others, and you do all seem very kind here.

That's just general advice for anyone at this point. Not to anyone specific.

No harm, no foul. I don't get worked up over the little things.

As for the topic, waking up does suck! Except my main problem happens in the middle of the night with excruciating back pan so bad it wakes me up! Anytime I sleep on my back I get horrible pain. I'm a side sleeper so I'm ending up on my back in my sleep.

My doctor suggested sewing a tennis ball into my sleeping clothes! How uncomfortable would it be rolling over on THAT in the middle of the night. And I'd get woken up anytime tried to roll over.

The muscle relaxer at night was working but I had a bout last night after about a week of not having it. I just don't know what to do with my stupid back!
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Old 11-03-2017, 09:07 AM #44 (permalink)
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Default Re: True hell waking up in the morning

Oh @vickythecat I sure hope my reply did not come across as attacking!!!!!!!!!!!!!!!!!!!!! In NO WAY did I take offense to what you said about being jealous of people that can do things. Sadly, I HAVE to work, so it necessary for me to keep on moving (and acting like nothing is wrong). I think if we all are honest, most of us are jealous of others in some way. If I were honest, I would admit that sometimes I'm jealous of people that get to stay home! But we all learn to live with the cards we have been dealt. Would I want to trade places with some of those people that don't have to work if I knew what their days are REALLY like? My life doesn't look so bad in comparison with what some of you are living with. Please take a gentle hug from me, and accept my apology if anything I said hurt you. I'm glad I found you guys and hope to get to know all of you better!
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Old 11-03-2017, 11:11 PM #45 (permalink)
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Default Re: True hell waking up in the morning

It's kinda funny isn't it, that most us human always wants what we can not have. I prefer use the terms envy more than jealousy .

When I still had my job and was still married with no fibro problem or other illnesses, I was working and moving fast in the world I can hardly catch a breath! I was so envy of those house wives life , while they were all envious of me at the same time. Not to mentions the weathy college students near by, I was indeed envy of their unending parents' supporting financial freedom while they were envy of my 'no permission financial freedom' . There's no end to this madnesses.

And now that I lost my job and completly homeless thanks to my fibro/cfs/non-24 problems that crippling me to the outside world unable to keep up , Now I've got my wish. How ironic is that?

Talk abut true hell waking up in the morning having to collecting the pieaces of my self. Which one is me now? The completely sub-human I suppose. The completely useless person who got forced vacation upon that yet unable to enjoy do to crazy non stop sleep depravation in each several days in the rolls when I seriously gonna die if I can't yet sleep on my own natural clock . The after several day of sleepless tortured passed and manage to sleep, then I get sleep attacks after my waking hours everywhere I goes semi narcoleptic black out , my nerves just can't keep up.

Thanks to fibro that I lost my right eyes sight from on and off or both eyes from time to times temporary def or temporary mute . I lost my sense of taste or smell I can hardly enjoy any food much. My world is constant spinning with virtgo and chocking by panic hyperventilation daily. Shaking me, punching me , and kicking me around all day long.

How's that for the long term vacation life?

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