I know we all have bad days but...

All your fibromyalgia experiences, questions and answers.

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Re: I know we all have bad days but...

Postby dazzleship » Fri Nov 28, 2014 7:55 am

first of all there are some excellent posts in this thread but I'm not going quote them all cos I've got 5 mins before I need to leave for work (early start today - joy :mrgreen: )

I agree that being negative is not the way to go (although it is hard as Zia and others said, not to feel that way at times. I know I have, as I've worked through my journey of coming to terms with this illness.

I too am not interested in the people who say "my illness is worse than yours, I take more pills than you" type of people but I can't say I've really come across people like that on this forum though.

but I think the threads where someone says "I've got such and such symptom/problem" and others reply and say they have it too, well I think thats useful because it helps to know that others are going through the same thing. so I don't necessarily think they are negative threads. if it gets something off someone's chest and they know it's something that others deal with too, then it helps them to not worry about it so much which is surely only a good thing.

but the very nature of this forum surely, is to come on and talk about what's wrong with us. it's a release where we can't do this in real life.

I'm trying to stay positive, I've worked through my acceptance stage and now I'm just trying to get on with it. I have absolutely no intention of leaving work and claiming benefits, it's not what I want to do at all. and I feel for me personally, I'm better off because I can't take any medication for it, cos I feel that can make things worse (well it certainly made me worse).

I think it's terribly sad that others can't work and are essentially worse off than me with this illness. but we are all different, and we all go through this in different ways.

gotta rush off now so I hope all that made sense. :-D

:hugs: to all.
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Re: I know we all have bad days but...

Postby keaedmondson » Fri Nov 28, 2014 6:03 pm

Totally right Dazzle!
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Re: I know we all have bad days but...

Postby Ren22 » Fri Nov 28, 2014 10:48 pm

I have read the original post a couple of times now and I must admit it's far worst than the people who as you put it moan. Depression is associated with Fibro and as this is a site for sufferers i'm sure a lot of people feel they can say how they are feeling because there are people who will understand how they are feeling. I'm sure on a good day people could say that I am playing the system but I can assure you that I am not, What I am saying is nobody can say 100% that someone is faking. To be honest I would rather read someone "moan" about how they are suffering than someone who comes across as bitter and not particularly very nice. As a Fibro forum people should be able to complain about how they are feeling and i'm sure on bad days people do believe that their condition is worst than others.
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Re: I know we all have bad days but...

Postby carolad » Sat Nov 29, 2014 4:23 am

Ren22 wrote:I have read the original post a couple of times now and I must admit it's far worst than the people who as you put it moan. Depression is associated with Fibro and as this is a site for sufferers i'm sure a lot of people feel they can say how they are feeling because there are people who will understand how they are feeling. I'm sure on a good day people could say that I am playing the system but I can assure you that I am not, What I am saying is nobody can say 100% that someone is faking. To be honest I would rather read someone "moan" about how they are suffering than someone who comes across as bitter and not particularly very nice. As a Fibro forum people should be able to complain about how they are feeling and i'm sure on bad days people do believe that their condition is worst than others.


I think depression and chronic pain do go together and I'm sure that most (if not all) of us on here have been through/are going through that. And it is natural to feel sorry for yourself sometimes. I go on about being positive but I've had a rubbish couple of days and have been feeling down and sorry for myself. But I don't think it helps me if I dwell on it and if I come on here and list all the things that are wrong with me. What works for me is to try and accept my limitations and concentrate on the positives in my life.

So I think that's what the original poster meant - not that people are faking it or that they are weak for feeling down about their situation, but just that it doesn't help anyone to be negative all the time. So it is fine to talk about how you are feeling and to come here for support but it isn't helpful when others give only negative replies. If another person is struggling, I would like to be able to offer some help, think of some things they could do to try and improve their situation. I wouldn't want to just say that I have those problems too and isn't it awful etc etc...because I don't think that would help either of us. We are all affected by other people's moods...I'm sure we all know negative people who just bring you down all the time...whereas others will pick you up and make you feel more hopeful. We should all try to help each other out on here - help pick others up if they are struggling, and they can do the same when we are going through a rough patch.

Does that make sense? Sorry, writing at 3.20am probably doesn't make for a coherent post! x
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Re: I know we all have bad days but...

Postby Polaris » Sat Nov 29, 2014 7:02 am

I have been engaged in Fibromyalgia forums and chat on and off since virtually the birth of the internet. During the early days there was very little information available regarding the condition (mostly in the USA) but these days there is ample information and advice available on the web. The thing that most sufferers have trouble with is understanding and empathy. People who don't have the condition really can't empathise or understand its profound effects.

I can recall the first time I had what felt like a panic attack, that wasn't. I had all the symptoms of a panic attack but there was absolutely nothing for me to panic about, no catalyst. What I had in fact was an adrenalin surge and my flight or fright response had kicked in as a reaction to it. This lead me to investigate and eventually obtain a proper diagnosis. Of course at first I thought I might be going insane but finding others who understood and could relate to that experience really helped me come to terms with my condition. So by sharing our experiences we can help each other cope with sometimes unexpected symptoms. Which reminds me of the time I took my dogs for a walk and got back in my car and experienced many of the symptoms of a heart attack which in fact was my chest going in to spasm. Anyone else had that one?
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Re: I know we all have bad days but...

Postby Queenie_70 » Sat Nov 29, 2014 11:15 am

My two cents worth,

Each persons struggle is their own. We can say how we understand, and have experienced similar situations, but it goes back to walking a mile in someone elses shoes. No-one can claim they can fully understand, as we all struggle differently. My pain may seem a doddle to one, difficult to another, and debilitating for me....our perceptions, our pain threshold, our level of "I cannot take these symptoms anymore," is going to be different. When I see a sad, or depressed post, I just think that that person has got to their limit....they are not "worse," but just had enough. I do not think anyone here would claim that they are the worst FM sufferer, or the least, though some seem embarrassed that their symptoms are less than others, and for them, I hope it stays that way. The point is, no-one can know truly where I am, nor do I claim to know where others are, but we all share the same frustration.

I know that I have put posts on here on days when I shouldn't have because it was a rant about life and my struggles...but that is a prime example of being at my limit. I do stop and smell the roses...literally, I lean into peoples gardens to smell flowers, I stare at the stars at night, and I look with wonder at the two dogs I am fortunate to look after in this life and think how much they have helped.

I am a full time carer for my daughter, my partner, and I am learning to do the same for myself, but we do have a limit. Depression hits because of the chronic nature of the condition, the feeling that we may never get out of the spiral of pain and fatigue, but take a good minute, hour or day and hold onto it.

I do know if I couldn't share my bad days here, I don't know who I would turn to instead, and for that I am thankful. So when I see posts that are negative, I give that person the benefit of doubt and presume they have reached their limit for the day, week, or month. Next time it might be me :)

(((gentle hugs))) :hugs: :grouphug:
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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Re: I know we all have bad days but...

Postby MPSGuy » Sat Nov 29, 2014 6:41 pm

JDWench wrote:Every time I'm on a fibromyalgia site or reading about what my local fibromyalgia group are up to it's always people being so bloody negative! I can't say much I'm queen whinge.

I've noticed here too that someone's post looking for advice soon turns in to "well that's nothing I'm so much worse off" how is that helpful?

This will be controversial, but my opinion is that because a lot of people with fibro also have depression and anxiety (some doctors believe fibro / CFS is completely a mental health illness) they can become quite negative. The negativity that comes through is the depression and anxiety speaking. The problem is many wont accept they have depression and therefore they never get any help for it.

CFS support groups are even worse. Full of people swapping symptoms of how unwell they are and all doom and gloom. These same people complain of how 'doctors do nothing to help' but yet they are on a million pills and constantly visit the doctor, never taking any responsibility to help themselves. I actually think some 'help' forums are UNHELPFUL and unhealthy environment for anyone.

UK Fibromyalgia is one of the better support sites I have found. On here people have a good moan as there is nothing wrong with having a good old moan, but there is less competitive (my problems are soo much worse than anyone else) complaining.
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Re: I know we all have bad days but...

Postby charlotteerika » Sat Nov 29, 2014 8:12 pm

"It's not just on here that people will be negative or offensive or offer unhelpful 'my dad's bigger than your dad' advice. It's the way we all work."

I have a different take on this.
I do not think we should reside in the fact that "It's the way we all work". We all know the people we have around who suddenly become an MD or specialist in our 'invisible chronic conditions'! They may work like this but we are the ones with the invisible chronic conditions who should in a sense 'know better' and should not be like this because we know how frustrating it is to have someone tell us they know better or that they have it so much harder than us!

I take the mindfulness angle and I have learnt so much from studying an Animal Therapy course. Assistance Animals such as dogs are now being used within many institutions such as schools, nursing homes, prisons and hospitals. They assist in counselling and are used in the 'reading buddy scheme' because they are Non-Judgemental. Being non-judgemental is the key.

Our society is all about Judgement and our own Egos so I have learnt not to judge people, I never knew how to express this until I read Katie Piper's book " Things Get Better". She stated Yes you may think your issue is more important than someone else's and we all have the right to feel that our issues are important, BUT THIS IS THE MOST IMPORTANT PART, but with No Judgement from anyone else!

There is a difference between negative comments and wallowing and bitterness. Negativity would be and should be for a short period of time but wallowing and bitterness comes over a long period of time and this is destructive. We need to know the difference. Remember we need to experience the negative to experience the positive and to really appreciate the positive things in life, it is the natural cycle in life. Wallowing and bitterness come from being Judged by someone else OR Judging someone else yourself.

We can learn so much from animals.
This is just my take on things and I have to say living like this is very freeing! I do have to rein my Ego in sometimes and remind myself no judgement but that is what this life is all about, a major learning experience!
I hope this may help someone :) x
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Re: I know we all have bad days but...

Postby carolad » Sat Nov 29, 2014 10:46 pm

MPSGuy wrote:
This will be controversial, but my opinion is that because a lot of people with fibro also have depression and anxiety (some doctors believe fibro / CFS is completely a mental health illness) they can become quite negative. The negativity that comes through is the depression and anxiety speaking. The problem is many wont accept they have depression and therefore they never get any help for it.

CFS support groups are even worse. Full of people swapping symptoms of how unwell they are and all doom and gloom. These same people complain of how 'doctors do nothing to help' but yet they are on a million pills and constantly visit the doctor, never taking any responsibility to help themselves. I actually think some 'help' forums are UNHELPFUL and unhealthy environment for anyone.

UK Fibromyalgia is one of the better support sites I have found. On here people have a good moan as there is nothing wrong with having a good old moan, but there is less competitive (my problems are soo much worse than anyone else) complaining.


Yes, I would agree with all of the above. It seems that most (all?) people who have been diagnosed with fibromyalgia have or have had depression, but they may not recognise it. I was one of those people - looking back, I can see I had depression for about 4 years. And during that time, I was negative and feeling hard done by...I really wasn't my 'normal' personality. Yet I wouldn't have said I was depressed at the time - people around me could see it but I couldn't. So if you do feel negative all the time and see no hope for the future, please get help to treat your depression. Because while you are depressed, this is going to have a negative effect on your physical health. The key to managing Fibro is to be positive and do what you can to help yourself.

It is interesting how different forums have different approaches. The CFS groups sound like they could do more harm than good. Anything that encourages obsessing over your health is not helpful. I am also a member of a Scoliosis forum and it tends to be much more 'upbeat' and positive. Of course there is the odd post where someone is having a hard time and being negative, but people tend to respond with practical advice rather than join in the complaining. I am not sure why this is....maybe because scoliosis isn't associated with depression in the same way that fibro is?

Charlotteerika makes a very good point about there being a difference between negativity and wallowing...everyone has bad days (fibro or not) and it may help some people to talk about it. Personally I don't like doing this because I don't see the point, but I know everyone is different and there is nothing wrong with having a moan occasionally :). I have days when I feel negative, but I recognise that I am feeling negative and I don't really want to inflict that on anyone else, so I tend to just keep myself to myself on those days. So having a negative day is normal...but when it goes beyond that and you start dwelling on your problems and feeling sorry for yourself, that is just destructive :( And that is when you really need help to pull you out of it. And I'm not criticising anyone who finds themselves in this state...as I said, that was me a few years ago. Sometimes things just spiral out of control and you need a bit of support to get your life back on track again.

Some very good comments on here...it has been an interesting debate :)

And Charlotteerika - I agree completely about the animals. I have an elderly horse who is my therapist...an hour spent in her company will restore my inner peace every time! x
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Re: I know we all have bad days but...

Postby sjc » Sat Nov 29, 2014 11:48 pm

;-) :-P



Hi there folks. Hope all is well despite the fibro.

Hey, JD Wench - I agree with you, totally. I can see from both sides but I hear what you say, as well! Glad we can have a honest debate about it on here, without some people being touchy....I know that similar posts have been addressed in the past, and I remember some forum users getting touchy about this issue - but what you and some others have said about some people being negative on forums or in real life is a big issue that we all need to be aware of...

Don't get me wrong, it is very hard sometimes or most of the time when one has a chronic health conditions, and then some folks may have additionals issues on top of the fibromyalgia. So sometimes I admit that I not always been the most positive person on the planet. So I know it's easily done.

But from my personal point of view, I would rather people provide practical advice or questions, not just to come on here or in real life moaning about how crap their day is...I don't wish to sound nasty, as I do understand how fibromyalgia or any health condition can affect people...But I like to see more posts on forums more practical based....I like to get information about what treatments work or don't work for people; daily living tips; work related tips; welfare and benefit tips and advice; social living skills, etc, etc....

But I know what you mean in the sense that some people, tend to have this kind of attitude mine condition is worse then yours...I know a lady in my village (she has other medical and personal issues, not fibro) but every time she sees me, she keep banging on about getting DLA and other benefits - she always brags about what she gets and her symptoms....And it's not because I want to be horrible, as I understand this lady has problems, but I don't want to keep hearing about what she can claim and her problems...I know that sounds awful, but I want to hear disabled or medically ill people talk normal things or things that is going help others, and not just about their sorrows.

Yes, it's not nice to have fibromyalgia or any medical condition or disability.....Yes, I agree that fibromyalgia isn't taken seriously by general public and some medical professionals....Yes, in these times where there are cut backs, most people with disabilities and medical problems struggle to get the help or noticed.....Yes, it's damn hard when you have got a debilitating condition and then you've got to worry about paying the bills, running the home, etc, etc...So I do sympathize with folks out there...

But I do wish some folks will stop coming on any forums moaning about them, and if they are going to contributing offer tips and advice...I know it sounds awful but I don't wish to mean this in a funny way, but I have put posts on here in the past, and the posts have asked normal questions on various subjects....yet I used to get very little replies back...and if I did get replies, they was very vague...But then the next minute, some people can on moaning, but they got loads of replies....I know people trying to be nice, but I got to the stage where I gave up on forums and groups...


I think this forum and other forums can do good - I'm not criticizing any forum or group, but I like to see more practical, structured, constructive, and positive advice made overall.

Take care folks. xxx



:-D :lol:
Sick of being sick, if you know what I mean. Anger keeps me going! I love campaigning for the rights of those with hidden disabilities. Enjoys talking to other like minded people - well, if you are sane, anyway :)
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Re: I know we all have bad days but...

Postby carolad » Sun Nov 30, 2014 12:12 am

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Re: I know we all have bad days but...

Postby Theresa34 » Sun Nov 30, 2014 12:26 am

carolad wrote:An interesting read....

http://justanotherfbomb.wordpress.com/t ... rt-groups/


Thank you for that x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: I know we all have bad days but...

Postby FluppyPuffy » Sun Nov 30, 2014 12:39 am

carolad wrote:An interesting read....

Very interesting indeed, esp some of the comments that have been left. We need the things that still make us smile to help balance out what the cruddy stuff does to us. It took me a long time to work this out, and during that time the cruddiness really did get me all tangled and knotted up. One of the things that helped me finally start unravelling some of its nastiness was, and still is DaftDog. There's nothing better than a furry furapist that listens to you, then kisses everything better :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss:
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Re: I know we all have bad days but...

Postby dazzleship » Sun Nov 30, 2014 11:36 am

that was a good article thanks for that. :-)

as for in person support groups - I've never fancied going to one of them cos I don't do well talking in a group. but the more I think of it the more i'm glad I don't go to one. this forum is all I need for my help and support, yes, but the thing about a forum like this is that I can choose which discussions to participate in. if there are threads where I don't have anything useful to offer, for example, I simply don't reply cos I can't provide any useful help. and the same applies if there was a thread that was particularly negative in some way.

but in an in person support group I'd have to sit there through all the discussions whether they were negative or not, you know? :-? which might do more harm than good.

it would be interesting to know, from those of us here who do go to these support groups, what they are like in general - positive or negative.

I agree that we all need to try to be more positive, something I am trying myself lately anyway, but I also know that it isn't always easy and maybe the ones who are looking a bit negative in their posts need support rather than criticism? so if we see a negative thread starting, instead of being annoyed at it or whatever, we need to help pull that person out of it if we can.

:hugs:
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Re: I know we all have bad days but...

Postby becbob » Sun Nov 30, 2014 1:26 pm

I am a year into my diagnosis and it's very hard for me at tne moment but I am so sick of "me". I spend all day by myself and I come to these forums to see what others are doing or have done. I love reading all the things people can do. I have little triumphs here and there and it really boosts me. I know that I am just going through a bad flare and that it should get easier soon.

Anyway a year on I am starting to not read the negatives and to concentrate on the positive. I think some people eventually find themselves doing that and some don't.
It's because we are all so different. Maybe others are sucked in to all the negativity because there is a lot of it about.

Maybe we could have a new section under the heading of Positive Posts Only so the people that want to concentrate on that can without having to sift through other posts to find it.

We will all have good days and bad days but we have the "sound booth topic" here to let off steam, lets have a positive post section so we can celebrate the things that mean so much to us and that bring us joy. For instances, my 5 year old has joined a dance school and next week is her first competition. It's all very relaxed and friendly to introduce them to the joys of meeting others and having fun. I am so excited about it.

I'm sure others would love to share good news even if it's only, "yeah for me, I managed to do some gardening".

Lets find some joy to share and hopefully people who are more negative can slowly come around to dealing with this illness in a different light rather than just existing.
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