I know we all have bad days but...

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I know we all have bad days but...

Postby JDWench » Thu Nov 27, 2014 2:11 pm

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?
Some are genuinely worse than others and some know how to play the system in order to receive benefits so they can rest back on a diagnosis which although awful doesn't effect them nearly as bad as it can others.

I am unfortunate to know someone like this who has always been a drama queen so her doctors are taken in by the melodramatic exaggerations and she's hounded dwp threatening suicide if they don't pay up which is extremely low!

I'm not saying everyone should think positive and all eat only fresh veg (please, I started my day with pizza and crisps lol) but maybe starting to think about getting moving instead of giving in and becoming a resident of sofa island. I only say this because I've been immobile recently and it's done no good.

Apparently you can get a referral from a doctor for gradient exercise at local leisure centres maybe that'd be a good step forward? Especially if your physio has fallen off the face of the planet and you're unable to receive financial help.

This isn't having a go it's just an observation of the way things are and a few suggestions.
Last edited by FluppyPuffy on Thu Nov 27, 2014 3:04 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: I know we all have bad days but...

Postby Zia2014 » Thu Nov 27, 2014 2:58 pm

It's very hard not to be negative. I know someone who has everything going and even when I told her I had fibro, she had something similar once 35 years ago ( :roll: ). So I know there are always people saying stuff like that, playing the system, etc.

BUT, having had this for nearly a year, not long been diagnosed, fighting for any help I can get and all the while trying to remain positive in the face of mistake and failures all over the shop, it's extremely difficult. It is so easy (and very human) to fall into a negative way of thinking (depression so often linked to long term conditions of all sorts) that it takes someone very strong not to do so.

I have been guilty of moaning on here, but the reason is I don't do it much in the 'land of the living', aka the real world. And it seems that a lot of other posters use these boards for the same reason. It has saved my sanity a fair few times already. I do think that is why there may be a lean to negativity, and I also think it's useful for us to have that outlet.

Some of your ideas and suggestions are helpful and I will add them to my long list of options, so thank you.
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Re: I know we all have bad days but...

Postby scoke » Thu Nov 27, 2014 3:07 pm

I know what you mean about unhelpful comments - I have found that this forum is less depressing than most, I had to leave a few that I tried early on because I always ended up feeling down, worried or even aggressive....
Most people on this forum are more likely to make helpful comments than to enter a competition for worst cases and the regulators (sorry, I don't think that's what they're called but the actual word escapes me - you all understand?!) are very good here too. This is the site I recommend to people newly diagnosed.
Was interested to read that gradient exercises are available at local leisure centres, is this in the UK?
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Re: I know we all have bad days but...

Postby Theresa34 » Thu Nov 27, 2014 3:33 pm

JD I completely agree with you. I'm sore and tired daily (varies) but I don't just sit down all day. I get myself out of bed, dressed and get the kids sorted for school then walk them there. I do this 5 days a week and do a full days housework then have a rest before I walk to get them again then come back and cook tea. I just carry on as best i possibly can. I never plan to claim benefits, I don't need to. I'm not incapable of looking after myself or others. Yes, some days like today, I could do with a rest, but resting wont get things done. Plus it only makes me stiff and more sore. I try to stay positive 99% of the time but I do have a small pity party if I'm going through a flare. But that's just human isnt it? I'm not ever giving into this. A lot of people will say to listen to my body and rest but I refuse to do that. To me thats giving in, and my stubborn mind wont let me :lol:
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 MilYvieMum » Thu Nov 27, 2014 3:46 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.

It's just life. I have fibromyalgia but my sister in law has it worse than I do (according to my mother in law) but who am I to judge. Staying positive is hard some days but the forums are helpful especially with bizarre symptoms, medicines, holistic therapy and just giving you a general chuckle.

Chuckle moment for the day from me is: My eye has gone wonky (it keeps wandering and twitching) so it makes me wink. I've had to go into school this week for both my children and both times the teacher must've thought I was trying to tap them up. Wink wink!
Its driving me nuts. So if you see a creaky slightly tubby woman winking at you then chances are I don't fancy you. It's just me with my wonky eye :crazy:
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Re: I know we all have bad days but...

Postby JDWench » Thu Nov 27, 2014 4:00 pm

Scoke yes they are, someone recommended it to me but I've not got round to it yet, being proactive has to be better than doing naff all about it and waiting for an illness to drag you under until you've been immobile so long you now need to rely on a team of people just to get you to the toilet. Doing nothing kills the human body right from stiff joints and cramp (I know we probably all have this daily) right down to muscle wastage and I would rather be trying to LIVE my life than just exist.

Theresa you are a hero it's people like you who I admire and I tell myself when I'm just being lazy to get on with it. As far as benefits go after a bad few months of struggling to walk and all the rest my claim was rejected and I don't intend to appeal it's given me the kick up the bum I needed so I can't walk some days? So bl :swear1: dy what it isn't an excuse to wallow and stop having a life on the majority of days when although there are symptoms they aren't as severe. Screw this illness.

Yes we all use this place to moan to stop us bringing down the people in our lives but when it's all you ever read it becomes old news, people stop offering support and the thread becomes just one bit symptom top trumps. I've upset a lot of people with this post and quite frankly I don't care, most people are middle aged and have enjoyed their life immensely before their body starts to hate them and yeah that's a shame and being older is no reason to expect illness the only way to feel better is to fight and that has been proven for alzheimer's and cancer.

Some people could do with not focusing on themselves and thinking about how others see them, do you want to be seen as a pathetic mess or do you want to be seen as strong, even if it's managing to do the washing or getting showered the people around you would be so impressed and those positive vibes would make you feel better so instead of wallowing in self pity do something to help yourself.
Last edited by FluppyPuffy on Thu Nov 27, 2014 4:31 pm, edited 1 time in total.
Reason: Removal of potentially upsetting word and replacement with emoticon as well as making paragraphs clearer for easier reading.
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Re: I know we all have bad days but...

Postby JDWench » Thu Nov 27, 2014 4:11 pm

At least you're managing to joke and it is literally laugh or cry with things like that. I hope the teachers didn't read too much in to your winking!
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Re: I know we all have bad days but...

Postby FluppyPuffy » Thu Nov 27, 2014 4:27 pm

Over the years I've come across places where everyone seems to be more interested in playing the "I'm pawlyer and take more pillys than anyone else" game too. Suffice to say, I didn't stay there very long as it doesn't do anything helpful for most. And as MilYvieMum has said, it is a part of life unfortunately. Wherever we may go, there will usually be at least one person who is worse than, better at, bigger than anyone else's dad. The only good thing about them is that they tend to be pretty easy to spot {one thing they are good at....making themselves stand out/be memorable for all the wrong reasons.}

Staying positive can be hard, esp when you're going thru one of those times where, no matter what you do, things carry on being cruddier and blacker. When I find myself in such a dark place, rather than trying to keep up with positivity, I tend to scale it back to something I can manage with more easily. This tends to be looking for something, no matter how small or fleeting it may be, that has helped brighten things a little more, even if only for a short time. DaftDog is good for things like this, as is seeing the chicken that normally attacks me fall off her perch as she is dropping off to sleep :lol: :lol: :lol: But it can be a hug or a comment from someone, something that you have seen as you were walking/travelling somewhere, some small deed someone has done for you.

As for the ones who post about how much worse they are than anyone else has ever seen, we do try to keep them quiet when we realise what they are like. That's why we try and look at FM as each of us having our own variation of the condition. We know that others may be affected more in some aspects than others, just as we know that "we" as individuals may be affected more so in some way than others might be.

We all moan at times, the difference with doing it on here, or with a group of like~minded peoples is that we know we will be understood as they will have probably had a similar experience at some point along the way. Whereas, when we say something to someone who doesn't have an experience that they can use to relate to what is being said, the feigning of interest, or :roll: :roll: :roll: or some other action conveying their indifference may well be the response we get.
MilYvieMum wrote:Chuckle moment for the day from me is: My eye has gone wonky (it keeps wandering and twitching) so it makes me wink. I've had to go into school this week for both my children and both times the teacher must've thought I was trying to tap them up. Wink wink!
Its driving me nuts. So if you see a creaky slightly tubby woman winking at you then chances are I don't fancy you. It's just me with my wonky eye :crazy:

Thanks for the :lol: :lol: :lol: :lol: :lol: :lol: :lol: :lol: just what I needed as I'm stuffed full of cold and feeling generally off today :bear-dancing: :bear-dancing: :bear-dancing:
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Re: I know we all have bad days but...

Postby Gingermama » Thu Nov 27, 2014 5:26 pm

I have to say I can see both sides to the argument.

As a newbie I've been looking on the forum a lot for advice and guidance but some of it has freaked me out. Will I get much worse? Will I end up immobile? How bad is this going to be?

I have had symptoms now for about 3 years but only diagnosed last week. Throughout the last 3 years I have been battling with my body to do everything I want to do without knowing why I was in such pain. I've had to take time off my work every so often but I love my job and feel like I'm letting the kids I work with down if I don't get off my butt and go see them.

I do 20 hours a week working with kids, home visits etc so end up driving a lot. I also have 2 boisterous boys, 7 and 4 that keep me busy, school run, nursery etc... On top of that I bake for a local weekly market, volunteer for a local charity (although mainly just go to committee meetings once a month).

So something has to give and it's the housework I'm afraid. I try my best to keep on top of the worst of it and obviously keep my kitchen clean but the rest of the house is not good! My hubby tries his best to help out and he is fantastic but he is a headteacher so works very long hours.

I must admit that most afternoons me and the kids spent them sat on the sofa chilling out with cartoons. I feel like such a rubbish mum but I have to do my best.

I also know that it is really hard not to whinge and moan, especially on here where you won't be judged, told that you're lazy, told to just think positive and it will all go away... Seriously, members of my extended family have no idea!!! So I can see how tempting it is when the forum offers such understanding to let off steam etc.

For me personally, I've had my freak out and a little pity party but now I refuse to let this rule my life, I'm going back to uni next year, I will ask for all the help I can get but I'm not giving up my dreams and aspirations just because I have this pain in the butt (literally!) .
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Re: I know we all have bad days but...

Postby becbob » Thu Nov 27, 2014 6:18 pm

I think people are all different and so is our Fibro. Each one of us is learning to live with this condition and how it affects them. I'm sure most of us have negative days and positive days. I was diagnosed a year ago now and have been very up and down. I am currently in a big flare and I am bed bound about 60%.. I will stay in bed if I have to, not because I want to. But I am not sitting in and resting on my good days. I'm going to make the most of it. I have tried pacing and I will still hurt so I'm going to get up and go. I live for my good days.

Having fibro hasn't been all negative for me. Something good has come of this. I am much calmer and have learnt how to be patient. I also appreciate the little things a lot more, like a beautiful sunset, a hug from my daughter, walking my doggie etc. There is joy to be found.

I come on here to get help and advice and to offer any help and advice. I can empathise with most people. If somebody writes something I dislike then I ignore it. I take the bits that are relevant to me and leave the rest. Most people here are incredibly helpful and understanding and this site has been a life line for me because I have no one else I feel I can talk to without me feeling that people are bored of hearing how I am. They always ask how I am and the only answer I give now is that I'm okay. I don't want to be pitied or have people get bored with me.
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Re: I know we all have bad days but...

Postby Welshmammy » Thu Nov 27, 2014 6:40 pm

I understand the point you are making about those who exaggerate their difficulties, but I would suggest these people are in a small minority. But as the last lady posted, fibromyalgia differs for everyone. Some people can manage relatively normal lives, some people can not and end up housebound, often because they deteriorate so much prior to the condition being diagnosed. There are also those with accompanying diagnosis, such as MS, Lupus ME/CFS, Arthritis - people may only mention fibro because it is a dedicated fibro page. We should remember that we shouldn't tag the more severely affected as exaggerators. Many people who don't understand how this condition affects often criticise those that do have it, I think we should be careful that we don't start criticising within our own.
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Re: I know we all have bad days but...

Postby keaedmondson » Thu Nov 27, 2014 7:09 pm

I am only going to add that I could not have put it any better than the last person! That's the way things need to be seen…
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Re: I know we all have bad days but...

Postby SchroedingersCat » Thu Nov 27, 2014 8:45 pm

Great post, JDW, and as always Theresa and I are in agreement.

If you don't stay positive and keep living your life, why bother at all? I've a relative who's just had both legs amputated due to diabetes, but all he's bothered about is getting out of hospital and back home with his wife. Positive thinking rules.
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Re: I know we all have bad days but...

Postby carolad » Thu Nov 27, 2014 11:20 pm

Absolutely! EVERYONE has their own problems to deal with, whether it is health problems, relationship problems, bereavement or many other stressful issues in their lives...and people deal with things differently. Some people are negative by nature and seem to dwell on their problems and constantly complain about how hard done by they are. Whereas others will quietly get on with things and will try and make the best of a bad situation. I'm not a complainer by nature and I am generally positive...although I had depression a few years ago and that took all my positivity away for a while....I still didn't complain though, I just became withdrawn.

I always feel uncomfortable talking about my health issues and I absolutely hate it when people feel sorry for me...if anyone says how awful it is, I just say 'oh it could be worse' and change the subject. I know some people here are keen for everyone to know how fibro affects them, but personally, I would feel very uncomfortable with that. I certainly wouldn't volunteer any information unless someone specifically asked - both because it makes me feel awkward and because I'm sure no-one wants to hear about my medical issues :roll: I don't want my health problems to define me, the only thing people need to know is that I can't sit in certain chairs or sit for too long because it hurts my back and I can't go out in the evenings because I'm too tired. Once they know those things about me, I have no reason to tell them any more :)

No matter what problems you have, you really do have to be positive and try and make the best of what you have. Don't concentrate on what you can't do...concentrate on what you can do and be grateful for all the good things in your life. And even on your very worst day, you have more to be thankful for than a lot of people. Isn't it a wonderful miracle of life that you can see...that you can speak...that you have a roof over your head...that you aren't living in a war zone, that you have clean water to drink? No matter what problems we have in our lives, we all have SO much to be grateful for. And if you can concentrate on that, rather than the negative things, it will improve your mental and physical health.

So I would say to anyone who is having problems seeing the positives in life...do think about counselling, CBT etc. There are ways you can 'train' your brain out of those negative thought patterns. and there is no shame in saying you need a bit of help to do that.

This is not to say you can't have a bit of a moan from time to time...everyone does it :) But dwelling on your problems is only going to make you unhappy....and will probably make your physical symptoms worse. And please don't think by this I mean it is all in your head. But there is plenty of research out there that proves stress and depression have very real physical effects on the body. I know this because my physio (who has magical powers!) can tell me that I'm frustrated, or upset or stressed....just by assessing my muscles. And she is right every time! So negative emotions exacerbate pain and this is why things like CBT can be very effective in pain management.
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Re: I know we all have bad days but...

Postby carolad » Thu Nov 27, 2014 11:35 pm

Zia2014 wrote:I

BUT, having had this for nearly a year, not long been diagnosed, fighting for any help I can get and all the while trying to remain positive in the face of mistake and failures all over the shop, it's extremely difficult. It is so easy (and very human) to fall into a negative way of thinking (depression so often linked to long term conditions of all sorts) that it takes someone very strong not to do so.



I was the same Zia - and you are right, depression is one of the recognised stages of coming to terms with a chronic illness. And when you are depressed, it takes all your hope away. My 'normal' disposition is to be optimistic but depression turned me into the biggest pessimist going! In my case, it wasn't the diagnosis of fibro, it was having years of severe back pain and little sleep, followed by a diagnosis of scoliosis that sent me into depression. So by the time I got my fibro diagnosis, I was already over the depression stage. It was just another label attached to me but it didn't make any difference to my life. Now I'm feeling (mostly!) positive and taking control of my life again, making some changes to my lifestyle to make the best of my situation.

So you are not alone...but you can get through it x
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