Elaine Rush

@elaine-rush | contributor
I have fibromyalgia and I’ve been unable to work for a number of years because of its effects. I’m also a wife and a mummy, so I hope people can see me as more than just my chronic illness.
Community Voices

Frustration when Fibro & fatigue stop me from doing things

Chronic pain and fatigue are so frustrating.

Obvious, but true.

For me, being unable to do things and unable to be productive is extremely annoying and took me a lot of years to get my head around.

Going back to when I had to give up work a number of years back, I was pretty immobile because of a bad back injury, so I was grateful for the chance to rest and then slowly get moving around again at my own pace.

However, my feelings changed when I had to face up to being unable to go back to work because of my #ChronicIllness. I felt lost and without purpose.
Fast forward to today and I am now a little more accepting of the situation I’m in, but still struggle with looking around my house at the things that need doing, yet not being mobile or strong enough to actually do them.
I’m sure many of you will identify with the mistake I frequently made (and sometimes still make). I forget my physical limits and try to do the chores that I’m sitting around and thinking about. That goes one of two ways – I either injure myself and can’t finish my task, or i somehow manage it and the next day I experience the payback in a major way. Not fun.

Still I sometimes hear how lucky I am that I don’t have to do housework and while it’s always meant well and often kind of amusing, I always think to myself,

‘NOT “Don’t HAVE to”. Don’t GET to!’

Same with work. Not having a paying job can be soul destroying by itself, but it also comes with judgement from others, which can further affect our self esteem.
On top of all of that, fibromyalgia can be so unpredictable and inconsistent that what it lets us do from one day to the next can be hugely varied. Sometimes it’s more like one hour to another.
So, here’s how it is:

Pain = frustrating

Fatigue = frustrating

Tons of weird symptoms = frustrating

Can’t do stuff – frustrating

Can’t go to places = frustrating

Unable to work = frustrating

Judgement from others = frustrating

Knowing that it’s very unlikely any of it will change any time soon = yep, you guessed it…..frustrating.

So, what’s the point of dwelling on it or telling all of you about it if that doesn’t actually fix anything?

i don’t know. I think I was just feeling frustrated and wanted to do something productive, so I wrote. I hope it resonates with some of you and makes you feel less alone.

3 people are talking about this
Community Voices

How do we explain to others why fibro effects what we can do

I’ve had #Fibromyalgia for so long, but still find it difficult to explain to others why it effects me so much.

Anyone with #Fibromyalgia will know that the symptoms are so varied and inconsistent that it’s unpredictable and everyone with #Fibromyalgia will have their own uniquely awful experience with it.

To most people, tiredness and pain can be helped by a good night’s sleep (sleep – what’s that?) and some relatively harmless painkillers. Not us. We have chronic fatigue, which is nothing like being tired. It’s almost impossible, however to describe the debilitating effects of it to someone who doesn’t have it. Who among us hasn’t heard someone close to us (who we maybe thought understood) tell us that they’re tired too? We have chronic pain, which is constant, unrelenting and quite frankly would floor most people who weren’t already ‘used to it’. Pain in #Fibromyalgia is pretty complex. There are different types of pain and that is really hard to explain to someone who doesn’t live with #Fibromyalgia. Even if you do try to explain, it just sounds to some like you’re exaggerating and that you’re being lazy. For any of my #Fibromyalgia/#ChronicIllness friends who have been told they’re lazy because of their illness – I’m sorry. I know how devastating that can feel. We have so many symptoms that are seemingly unrelated or bizarre to people who don’t have them. Things like sensitivity to noise, #Fibromyalgia fog, health related #Anxiety and so many more.
Generally speaking, I don’t feel the need to explain myself to anyone else. However, there are exceptions when it comes to people I care about and may want in my life. If you are one of these people, please do not blame, doubt or criticise your friend/loved one for  things that are beyond their control. Nobody asks for or wants this condition, so if your person with #Fibromyalgia opens up and shares their #Fibromyalgia struggles with you, please be kind and be reasonable. It’s not easy for many of us to express vulnerabilities, so if we do and are disbelieved, it is crushing.

Sadly, I’ve come to the conclusion from talking with my fibromyalgia friends that it’s inevitable that #ChronicIllness will affect a person’s #Relationships. We lose friends because we’re unable to keep up with the going out and doing things that they do. Also because we might not be able to work anymore – it’s hard to have so much less contact with the outside world when you have no other choice. Eventually most people stop calling or texting and gradually drop away. If you’re lucky, as I am, you will hang on to a few really great ones. But I know that’s not how it is for some. If you’re feeling alone because of #ChronicIllness affecting your social and personal lives, please remember that it’s not your fault. You deserve all the love that a healthy person does. Most people don’t mean harm, even if it hurts.I know for lots of people with #ChronicIllness, their spousal #Relationships can be affected also. I guess no matter how much we love and appreciate them, it’s always going to be frustrating when they want us to go somewhere or do something that we can’t. To those spouses or friends, I say, “Be patient and be kind. Stress makes many of these invisible chronic conditions worse, so it doesn’t help anyone to blame or to tell your partner/friend what they need to do to help themselves. Trust me, they are trying. They’re struggling. Remember that you could be someone’s support and encouragement and if you love them, trust that they already feel bad about the uneven workload and how much you do that they can’t. Reassure them. That is so important. Lastly, thank you. What you do is not easy”.

After all of that, I’m still not sure how to explain my #Fibromyalgia struggles to others. I’d be interested to hear what you think. I find it hard not to care when it’s someone I like, respect and/or love. Even if I know I don’t owe it to them to be healthy or explain why I’m not. I think that’s why communities like The Mighty are so important – shared experiences and information for all of us and our friends and families.

Thanks for reading and love to all. #fibromyalgia #chronicpain

4 people are talking about this
Community Voices

How do we explain to others why fibro effects what we can do

I’ve had #Fibromyalgia for so long, but still find it difficult to explain to others why it effects me so much.

Anyone with #Fibromyalgia will know that the symptoms are so varied and inconsistent that it’s unpredictable and everyone with #Fibromyalgia will have their own uniquely awful experience with it.

To most people, tiredness and pain can be helped by a good night’s sleep (sleep – what’s that?) and some relatively harmless painkillers. Not us. We have chronic fatigue, which is nothing like being tired. It’s almost impossible, however to describe the debilitating effects of it to someone who doesn’t have it. Who among us hasn’t heard someone close to us (who we maybe thought understood) tell us that they’re tired too? We have chronic pain, which is constant, unrelenting and quite frankly would floor most people who weren’t already ‘used to it’. Pain in #Fibromyalgia is pretty complex. There are different types of pain and that is really hard to explain to someone who doesn’t live with #Fibromyalgia. Even if you do try to explain, it just sounds to some like you’re exaggerating and that you’re being lazy. For any of my #Fibromyalgia/#ChronicIllness friends who have been told they’re lazy because of their illness – I’m sorry. I know how devastating that can feel. We have so many symptoms that are seemingly unrelated or bizarre to people who don’t have them. Things like sensitivity to noise, #Fibromyalgia fog, health related #Anxiety and so many more.
Generally speaking, I don’t feel the need to explain myself to anyone else. However, there are exceptions when it comes to people I care about and may want in my life. If you are one of these people, please do not blame, doubt or criticise your friend/loved one for  things that are beyond their control. Nobody asks for or wants this condition, so if your person with #Fibromyalgia opens up and shares their #Fibromyalgia struggles with you, please be kind and be reasonable. It’s not easy for many of us to express vulnerabilities, so if we do and are disbelieved, it is crushing.

Sadly, I’ve come to the conclusion from talking with my fibromyalgia friends that it’s inevitable that #ChronicIllness will affect a person’s #Relationships. We lose friends because we’re unable to keep up with the going out and doing things that they do. Also because we might not be able to work anymore – it’s hard to have so much less contact with the outside world when you have no other choice. Eventually most people stop calling or texting and gradually drop away. If you’re lucky, as I am, you will hang on to a few really great ones. But I know that’s not how it is for some. If you’re feeling alone because of #ChronicIllness affecting your social and personal lives, please remember that it’s not your fault. You deserve all the love that a healthy person does. Most people don’t mean harm, even if it hurts.I know for lots of people with #ChronicIllness, their spousal #Relationships can be affected also. I guess no matter how much we love and appreciate them, it’s always going to be frustrating when they want us to go somewhere or do something that we can’t. To those spouses or friends, I say, “Be patient and be kind. Stress makes many of these invisible chronic conditions worse, so it doesn’t help anyone to blame or to tell your partner/friend what they need to do to help themselves. Trust me, they are trying. They’re struggling. Remember that you could be someone’s support and encouragement and if you love them, trust that they already feel bad about the uneven workload and how much you do that they can’t. Reassure them. That is so important. Lastly, thank you. What you do is not easy”.

After all of that, I’m still not sure how to explain my #Fibromyalgia struggles to others. I’d be interested to hear what you think. I find it hard not to care when it’s someone I like, respect and/or love. Even if I know I don’t owe it to them to be healthy or explain why I’m not. I think that’s why communities like The Mighty are so important – shared experiences and information for all of us and our friends and families.

Thanks for reading and love to all. #fibromyalgia #chronicpain

4 people are talking about this
Elaine Rush

Why It's Hard for Me to Admit That Stress Makes Fibromyalgia Worse

Most people who know me well will tell you I’m pretty laidback (and not even just in a literal sense when my fibro knocks me off my feet!) and not generally known for being stressed. I think that having a chronic illness for as long as I have had mine can put things into perspective so that I don’t generally stress about things unnecessarily. I know, it’s hard to believe that living in this fast paced, too-angry day and age, I can be so zen. Especially living 24/7 with the kind of pain that most people can’t even imagine. That’s because I have ulterior motives. I know that stress, anxiety and all of that stuff makes my fibromyalgia worse. Which I really hate to admit. I have always felt like it somehow made me “weak” or something, which I realize is ridiculous. Recently I’ve been thinking about why it has always been an issue for me to “admit” this. Almost as though it’s something I’ve done wrong or should be ashamed of. As anyone with chronic illnesses will tell you, we have all experienced not being believed, or being accused of exaggerating when it comes to the effects of our conditions, so I somehow felt like something that isn’t physical, can’t or shouldn’t affect my fibromyalgia. Wrong, wrong, wrong. Firstly, stress is physical because it affects your body. Perhaps some of the causes and symptoms of stress are invisible to others, but regardless of that, when we’re stressed, angry or upset, our body tenses up and our muscles tighten. Which is a major problem if you’re prone to pulling/spraining/spasming. Secondly, I have had fibromyalgia long enough to know that anything and everything can affect or aggravate it. Even things that don’t seem remotely connected can throw my whole body into disarray. In part, I think the medical community is responsible because so many of us have been labeled hypochondriacs, drug-seekers or liars by the very people we went to for help. I’m confident that almost every chronic pain patient will have at least one or two stories of how they’ve experienced this type of doubt. I don’t know if others feel the same, but I do think a big part of how these attitudes came about is down to plain and simple sexism. Fibromyalgia is more common in women, so we are sometimes simply seen as unable to cope, hysterical or overly dramatic women. I once had a female doctor tell me that I was just stressed. When I said that I wasn’t she told me, “Us women stress about what to cook for dinner and things like that without even realizing it.” What? No. That’s what takeout menus are for! Seriously though, how sad to hear someone who was intelligent enough to have a career in medicine demean herself in that way. So, because I’m strong and stress and anxiety are often viewed as “weak,” I told myself, “Nope. Stress doesn’t affect my fibromyalgia.” Yeah, right. These days, I wholeheartedly own my stress, anxiety and panic attacks and see them as a direct result of my chronic pain, but nothing to be ashamed of. Of course, I do everything I can to avoid stress, just as I avoid anything else that I know will trigger a flare of fibro symptoms. One of the best things for me is meditation. I have done it since I was a teenager and it has become an everyday coping mechanism for me. I’d highly recommend it to any of you who are looking to de-stress. My other favorite things for this are music, which can be a powerful motivator and inspiration (singing along is good for the soul too) and laughter. I know, it’s a cliché – laughter being the best medicine, but it really is a great stress reliever. If you don’t happen to live with a couple of hilarious dudes like I do, watch some comedy on TV. Lastly, I also use positive affirmations. I firmly believe that reminding yourself of your good qualities can counteract some of those awful anxious thoughts that can run through our heads when we’re having a tough time. It takes practice to learn to love yourself, especially when you’re feeling kind of broken, but it does help if you can do it. The stronger and more determined you feel in yourself, the easier it is for you to deal with stress. At least, that’s how it is for me. I hope the same for you all too. At the very least, we all need to remember that we wake up every day and deal with the kind of pain most people can’t imagine. We have to be tough for that. So, I’m proud of all of you who are fighting a chronic pain fight! We’ve got this. We can do it! Sending love.

Elaine Rush

Apologizing and Feeling Guilty for Having a Chronic Illness

I apologize for my chronic illness too much (sorry). I have fibromyalgia. I have always had it, even though I didn’t know the name of it until I was in my 20s. You’d think by now I would be used to its effects and the ways it can limit my abilities to do stuff. I feel like I am. So why do I find myself so often feeling guilty or apologizing? I apologize for the housework I can’t do. I apologize that I don’t have a job. I apologize when I need to rest. I apologize that I can’t walk very far. I apologize that I can’t be spontaneous. I apologize for needing to change plans. And those are just the first ones that come to mind. So I ask again, why? Is it because I feel like a burden if I need help or can’t help others? Maybe it’s a direct result of being doubted by the medical profession for so many years. Perhaps it’s connected to having to fight for disability benefits and try to prove my invisible illness to strangers who mostly don’t believe me. Is it because I know it affects my loved ones too? Even if just by worrying them. Or is it because as a woman, I have been conditioned by society to feel guilt, insecurity and a responsibility to make everyone around us feel happy, cared for and looked after? I’m sure The Mighty’s male-identifying community could confirm whether it’s the same for them or not. I’m aware that I’ve asked a lot of questions and not given any concrete answers. Sorry about that. Oops, not again! But I want to reassure any of you who also struggle with guilt and apologizing unnecessarily that I understand the feeling. Please try to remember, you don’t need to feel that way. You are 100 percent enough.

Elaine Rush

Apologizing and Feeling Guilty for Having a Chronic Illness

I apologize for my chronic illness too much (sorry). I have fibromyalgia. I have always had it, even though I didn’t know the name of it until I was in my 20s. You’d think by now I would be used to its effects and the ways it can limit my abilities to do stuff. I feel like I am. So why do I find myself so often feeling guilty or apologizing? I apologize for the housework I can’t do. I apologize that I don’t have a job. I apologize when I need to rest. I apologize that I can’t walk very far. I apologize that I can’t be spontaneous. I apologize for needing to change plans. And those are just the first ones that come to mind. So I ask again, why? Is it because I feel like a burden if I need help or can’t help others? Maybe it’s a direct result of being doubted by the medical profession for so many years. Perhaps it’s connected to having to fight for disability benefits and try to prove my invisible illness to strangers who mostly don’t believe me. Is it because I know it affects my loved ones too? Even if just by worrying them. Or is it because as a woman, I have been conditioned by society to feel guilt, insecurity and a responsibility to make everyone around us feel happy, cared for and looked after? I’m sure The Mighty’s male-identifying community could confirm whether it’s the same for them or not. I’m aware that I’ve asked a lot of questions and not given any concrete answers. Sorry about that. Oops, not again! But I want to reassure any of you who also struggle with guilt and apologizing unnecessarily that I understand the feeling. Please try to remember, you don’t need to feel that way. You are 100 percent enough.

Elaine Rush

Apologizing and Feeling Guilty for Having a Chronic Illness

I apologize for my chronic illness too much (sorry). I have fibromyalgia. I have always had it, even though I didn’t know the name of it until I was in my 20s. You’d think by now I would be used to its effects and the ways it can limit my abilities to do stuff. I feel like I am. So why do I find myself so often feeling guilty or apologizing? I apologize for the housework I can’t do. I apologize that I don’t have a job. I apologize when I need to rest. I apologize that I can’t walk very far. I apologize that I can’t be spontaneous. I apologize for needing to change plans. And those are just the first ones that come to mind. So I ask again, why? Is it because I feel like a burden if I need help or can’t help others? Maybe it’s a direct result of being doubted by the medical profession for so many years. Perhaps it’s connected to having to fight for disability benefits and try to prove my invisible illness to strangers who mostly don’t believe me. Is it because I know it affects my loved ones too? Even if just by worrying them. Or is it because as a woman, I have been conditioned by society to feel guilt, insecurity and a responsibility to make everyone around us feel happy, cared for and looked after? I’m sure The Mighty’s male-identifying community could confirm whether it’s the same for them or not. I’m aware that I’ve asked a lot of questions and not given any concrete answers. Sorry about that. Oops, not again! But I want to reassure any of you who also struggle with guilt and apologizing unnecessarily that I understand the feeling. Please try to remember, you don’t need to feel that way. You are 100 percent enough.

Elaine Rush

Apologizing and Feeling Guilty for Having a Chronic Illness

I apologize for my chronic illness too much (sorry). I have fibromyalgia. I have always had it, even though I didn’t know the name of it until I was in my 20s. You’d think by now I would be used to its effects and the ways it can limit my abilities to do stuff. I feel like I am. So why do I find myself so often feeling guilty or apologizing? I apologize for the housework I can’t do. I apologize that I don’t have a job. I apologize when I need to rest. I apologize that I can’t walk very far. I apologize that I can’t be spontaneous. I apologize for needing to change plans. And those are just the first ones that come to mind. So I ask again, why? Is it because I feel like a burden if I need help or can’t help others? Maybe it’s a direct result of being doubted by the medical profession for so many years. Perhaps it’s connected to having to fight for disability benefits and try to prove my invisible illness to strangers who mostly don’t believe me. Is it because I know it affects my loved ones too? Even if just by worrying them. Or is it because as a woman, I have been conditioned by society to feel guilt, insecurity and a responsibility to make everyone around us feel happy, cared for and looked after? I’m sure The Mighty’s male-identifying community could confirm whether it’s the same for them or not. I’m aware that I’ve asked a lot of questions and not given any concrete answers. Sorry about that. Oops, not again! But I want to reassure any of you who also struggle with guilt and apologizing unnecessarily that I understand the feeling. Please try to remember, you don’t need to feel that way. You are 100 percent enough.

Elaine Rush

Apologizing and Feeling Guilty for Having a Chronic Illness

I apologize for my chronic illness too much (sorry). I have fibromyalgia. I have always had it, even though I didn’t know the name of it until I was in my 20s. You’d think by now I would be used to its effects and the ways it can limit my abilities to do stuff. I feel like I am. So why do I find myself so often feeling guilty or apologizing? I apologize for the housework I can’t do. I apologize that I don’t have a job. I apologize when I need to rest. I apologize that I can’t walk very far. I apologize that I can’t be spontaneous. I apologize for needing to change plans. And those are just the first ones that come to mind. So I ask again, why? Is it because I feel like a burden if I need help or can’t help others? Maybe it’s a direct result of being doubted by the medical profession for so many years. Perhaps it’s connected to having to fight for disability benefits and try to prove my invisible illness to strangers who mostly don’t believe me. Is it because I know it affects my loved ones too? Even if just by worrying them. Or is it because as a woman, I have been conditioned by society to feel guilt, insecurity and a responsibility to make everyone around us feel happy, cared for and looked after? I’m sure The Mighty’s male-identifying community could confirm whether it’s the same for them or not. I’m aware that I’ve asked a lot of questions and not given any concrete answers. Sorry about that. Oops, not again! But I want to reassure any of you who also struggle with guilt and apologizing unnecessarily that I understand the feeling. Please try to remember, you don’t need to feel that way. You are 100 percent enough.

Elaine Rush

Apologizing and Feeling Guilty for Having a Chronic Illness

I apologize for my chronic illness too much (sorry). I have fibromyalgia. I have always had it, even though I didn’t know the name of it until I was in my 20s. You’d think by now I would be used to its effects and the ways it can limit my abilities to do stuff. I feel like I am. So why do I find myself so often feeling guilty or apologizing? I apologize for the housework I can’t do. I apologize that I don’t have a job. I apologize when I need to rest. I apologize that I can’t walk very far. I apologize that I can’t be spontaneous. I apologize for needing to change plans. And those are just the first ones that come to mind. So I ask again, why? Is it because I feel like a burden if I need help or can’t help others? Maybe it’s a direct result of being doubted by the medical profession for so many years. Perhaps it’s connected to having to fight for disability benefits and try to prove my invisible illness to strangers who mostly don’t believe me. Is it because I know it affects my loved ones too? Even if just by worrying them. Or is it because as a woman, I have been conditioned by society to feel guilt, insecurity and a responsibility to make everyone around us feel happy, cared for and looked after? I’m sure The Mighty’s male-identifying community could confirm whether it’s the same for them or not. I’m aware that I’ve asked a lot of questions and not given any concrete answers. Sorry about that. Oops, not again! But I want to reassure any of you who also struggle with guilt and apologizing unnecessarily that I understand the feeling. Please try to remember, you don’t need to feel that way. You are 100 percent enough.