I was diagnosed 3 - 3 1/2 years ago and work a highly stressful job. So far i've been on 3 short term disability leaves. The last one was due to the stress building up to the point where I ended up in the hospital with Pancreatius. I have to call out of work so much that i'm surprised I still have a job at this point. My husband, bless his heart, is doing everything that he can but without me working we definitely wouldn't be able to pay our bills, plus all the medical bills. Sometimes I get the feeling that his life would be so much easier if i wasn't in it anymore. That he would just have to worry about himself. I know that I won't be missed at my job since they are tired of dealing with my sick calls, disability leaves and limitations. I feel so lost and alone. My husband is so loving and caring. He tries to understand what i'm going through but when i'm throwing up everyday, not wanting to eat anything, in so much pain he can't even hug me it gets hard. I'm so exhausted. If i'm lucky my life consists of work then home. I don't even like leaving the house anymore. If there is someone out there that understands or knows what i'm going through please respond.
No one understands
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Eff fibro
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I was only diagnosed 2 months ago and I feel like I'm heading to where you are, so unfortunately I cannot be of much help. Today I came on to vent about how hard it is to have to call out of work (like I did today). And I have the most supportive, loving boyfriend as well, and he, too tries to do everything he can for me but that makes me feel like more of a burden. But then I think about him... and how he would feel if I wasn't in his life... and I KNOW that would be so much more devastating than being with a "sick" me. Your husbands lovingness through your difficult days tells me he truly loves you, and that he too would be devastated to lose you. Being with you, through sickness and in health, is where his heart is.
Can I ask what you do for work? I'm a home health nurse (less than 1 year in after 2.5 years working in a hospital) and I thought this slower pace would be perfect for me... but some days it's not, I'm still too exhausted, or too foggy to feel safe caring for someone medically compromised. It breaks my heart that 1, I'm not to be able to do what makes me happy, 2,I'm now unreliable for people who depend on me, 3and , it reflects poorly on my work ethic when really its not my ethic, I WANT to work, but its how it's going to be perceived.
When I worked at the hospital I felt what you do about them not missing me. And some of them do miss my smiling face, but I know most of them are glad not to deal with my sick calls. And at that time I didn't have a diagnosis so I didn't have a "valid excuse" to be repeatedly calling out. But in my case, my sick calls led to being bullied and mistreated so I left the hospital. Then my symptoms got worse and more often and now I'm starting to miss days at my new job. I'm trying not to fear the future but it's hard. The bottom line is, you're not alone. And people who love you would be devastated to lose you, so hang on (if not for you, do it for them). Faith can be an excellent hand to hold if you believe or are open minded to trying.
One more note on your husband "only having to worry about himself"... think about how lonely he would feel if he didn't have someone to share that worry with? Being married and in love has joined you as one... taking you out of the equation would leave him incomplete. He needs you more than you know
Can I ask what you do for work? I'm a home health nurse (less than 1 year in after 2.5 years working in a hospital) and I thought this slower pace would be perfect for me... but some days it's not, I'm still too exhausted, or too foggy to feel safe caring for someone medically compromised. It breaks my heart that 1, I'm not to be able to do what makes me happy, 2,I'm now unreliable for people who depend on me, 3and , it reflects poorly on my work ethic when really its not my ethic, I WANT to work, but its how it's going to be perceived.
When I worked at the hospital I felt what you do about them not missing me. And some of them do miss my smiling face, but I know most of them are glad not to deal with my sick calls. And at that time I didn't have a diagnosis so I didn't have a "valid excuse" to be repeatedly calling out. But in my case, my sick calls led to being bullied and mistreated so I left the hospital. Then my symptoms got worse and more often and now I'm starting to miss days at my new job. I'm trying not to fear the future but it's hard. The bottom line is, you're not alone. And people who love you would be devastated to lose you, so hang on (if not for you, do it for them). Faith can be an excellent hand to hold if you believe or are open minded to trying.
One more note on your husband "only having to worry about himself"... think about how lonely he would feel if he didn't have someone to share that worry with? Being married and in love has joined you as one... taking you out of the equation would leave him incomplete. He needs you more than you know
Thank you. Sometimes I lose sight of what is really important. I'm in the same boat as you were at your old job. I went from being a bright and shining employee to getting passed up for promotions, bullied, mistreated, and even made fun of by management. I get it from all sides. There are a few people I actually consider friends but I try to keep my distance from pretty much everyone. I work in Television Production, so I constantly have to be alert and ready for any situation that may arise. However, with my FM the fatigue and pain gets worse when I get stressed out or when the weather changes so at any given point i'm out of commission. I've been to doctor after doctor and gone through every treatment imaginable and nothing has worked. I just turned 30 last July and I feel like I'm wasting away mentally and physically. My husband is doing everything he can to help me. He's even trying to find jobs down south so we can get out of the cold north and be close to our family (I am so lucky to have him in my life). I've been trying to think of some other profession I could do that would allow me to work from home, but I really haven't found anything yet. It's horrible because I worked so hard to get where I am and it feels like I just have to give it all up.
I'm really surprised by the fact that you work in the medical profession and were being treated with the same ignorance as I am. I honestly am shocked. I am so sorry that you have to go through this. I honestly wish people could be more compassionate in general, especially when it comes to illnesses they can't see. My husband and I always say that if it were cancer people would understand, but because one day i'll be happy and full of energy without a care in the world, then the next 4 days i'll be stuck in bed, tired and in so much pain. Its a never ending cycle.
I'm really surprised by the fact that you work in the medical profession and were being treated with the same ignorance as I am. I honestly am shocked. I am so sorry that you have to go through this. I honestly wish people could be more compassionate in general, especially when it comes to illnesses they can't see. My husband and I always say that if it were cancer people would understand, but because one day i'll be happy and full of energy without a care in the world, then the next 4 days i'll be stuck in bed, tired and in so much pain. Its a never ending cycle.
Forgetmenot
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First off , your very blessed to have ppl who do believe u and support u . So many ppl have this horrid illness , and there other half thinks there laying or simple don't care less,
Beating yourselfs up over something u have no control over is pointless, but we all do it don't we.
We seem to live in a world where we feel illness is a weakness and is not aloud.
I wish I had the support you two lady's have ,but unless u suffer this I don't think anyone really understand what we go through xxxx
Beating yourselfs up over something u have no control over is pointless, but we all do it don't we.
We seem to live in a world where we feel illness is a weakness and is not aloud.
I wish I had the support you two lady's have ,but unless u suffer this I don't think anyone really understand what we go through xxxx
Forgetmenot - You hit the nail on the head. I can't tell you how many times i've been accused of lying or not caring. I got demoted at my job because no one would believe me even after the 3 disability leaves i've been on. My own brother accused me of trying to "cheat the system" just so I wouldn't have to work and my sister quit talking to me because she didn't approve of the medications I was taking. Its hard to get people to understand something they know nothing about. The one constant I have had has been my Husband. He married me knowing I had this illness and took on all the challenges it brings with a smile and a loving hand. Some days (like today) I feel like I'm just a burden on him. That I'm preventing him from living life to the fullest because I can't do the things I know in my heart he wants. He can tell me till he's blue in the face that i'm not a burden that he loves me and loves taking care of me, but I always have this nagging feeling I'm bringing him down. I know I will never be free of this dibilitating illness and the mental anguish that comes with it.
Eff fibro
Active member
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- Undiagnosed
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- 10/2014
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That's when we need to look forward to better days and spend today focusing on how to make yourself feel better in the moment. Take a hot bath, paint your nails, do something quiet but enjoyable. Days I have moderate energy I work on my garden (though with cold weather setting in, I'll have to find new "quiet" hobbies). I completely understand, that no matter how much an amazing hubby tells you its not a problem, you still feel like it is. TrayTray, I'm so sorry to hear of your family's lack of acceptance and support. One thing we can both be incredibly grateful for- good men. Your hunny sounds a lot like mine One thing I've found makes me feel better about it is encouraging him to do things for himself more. Going to the gym makes him feel good so I encourage him to do that... take a break from me I'll spend a night or two with my parents an hour away, just to hang out because we're very close like that, let him do things like go bowling without feeling like he's leaving me home alone in a bad place. It is important for him to care for himself and do things that make him happy so encourage that. That might help your mentality
I'm 31 y/o myself and feel too young to feel so old. Exactly like you said, wasting mentally and physically. And people look at me, I LOOK like a healthy, in shape young woman... but what I feel is such the opposite. I'm thin because eating is painful and unpleasant. And trying to convince people that looks really are deceiving isn't usually worth the effort. It's sad that I almost LIKE when the pains cause arm/leg spasms because then people SEE the pain. I'm not sitting with it, feeling like I'm stuck in my own little world and no one knows. That's what brought me to this forum in the first place, I'm SOO grateful to have a place to talk about this stuff. Talking about it to people who don't have it... I feel like I'm just sounding like a whiny baby, like they just don't understand when I say I'm exhausted... its not like the exhaustion they know. And my sweetheart doesn't need to listen to me talk about my pains and stuff all day. I try not to be a negative nancy by talking about it, but at the same time I want him (and my parents who are also AMAZING support) to know when I'm really feeling lousy.
As far as being in the medical profession, it's sad but many "professionals" still go by what they can't see on tests they don't believe. When I FIRST heard of FM I was ignorant and thought it was other diseases bad doctors couldn't figure out or people trying to "cheat the system" as your brother put it. Now... I feel like scum for ever having thought that. Now I FEEL it. and now there's a better medical understanding for it, but even people in the medical field remain resistant to believe what they can't see. I am, however, fully confident that in the next decade or so there will be much greater understanding and better treatment. Medicine is advancing so quickly that it's only a matter of time before FM starts getting the respect and attention it deserves.
One thing I've found makes me feel better about it is encouraging him to do things for himself more. Going to the gym makes him feel good so I encourage him to do that... take a break from me I'll spend a night or two with my parents an hour away, just to hang out because we're very close like that, let him do things like go bowling without feeling like he's leaving me home alone in a bad place. It is important for him to care for himself and do things that make him happy so encourage that. That might help your mentality I'm 31 y/o myself and feel too young to feel so old. Exactly like you said, wasting mentally and physically. And people look at me, I LOOK like a healthy, in shape young woman... but what I feel is such the opposite. I'm thin because eating is painful and unpleasant. And trying to convince people that looks really are deceiving isn't usually worth the effort. It's sad that I almost LIKE when the pains cause arm/leg spasms because then people SEE the pain. I'm not sitting with it, feeling like I'm stuck in my own little world and no one knows. That's what brought me to this forum in the first place, I'm SOO grateful to have a place to talk about this stuff. Talking about it to people who don't have it... I feel like I'm just sounding like a whiny baby, like they just don't understand when I say I'm exhausted... its not like the exhaustion they know. And my sweetheart doesn't need to listen to me talk about my pains and stuff all day. I try not to be a negative nancy by talking about it, but at the same time I want him (and my parents who are also AMAZING support) to know when I'm really feeling lousy.
As far as being in the medical profession, it's sad but many "professionals" still go by what they can't see on tests they don't believe. When I FIRST heard of FM I was ignorant and thought it was other diseases bad doctors couldn't figure out or people trying to "cheat the system" as your brother put it. Now... I feel like scum for ever having thought that. Now I FEEL it. and now there's a better medical understanding for it, but even people in the medical field remain resistant to believe what they can't see. I am, however, fully confident that in the next decade or so there will be much greater understanding and better treatment. Medicine is advancing so quickly that it's only a matter of time before FM starts getting the respect and attention it deserves.
Forgetmenot
Legendary member
- Joined
- Oct 6, 2014
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- DX FIBRO
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- 70/2010
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- UK
- State
- Hertfordshire
I really understand the pills. My other half always makes a comment about my cubroads full of pills.he has never bothered to look and see there the same pills just a few months worth,not 50 diffrent ones!.Il lucky my mum and dad have to take a lot of med so they understand ,I dam well no there not doing my insides any good, we're not stupid ppl. Now the advice eff fibro give u is prefect .im going to try to take that advice myself.xx hugs u as tight as I darexxxxx your not alone
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