Aday in the life of............

All your fibromyalgia experiences, questions and answers.

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Aday in the life of............

Postby klarenbd » Tue Aug 12, 2014 9:41 am

What's a day in your life like? How does fibro affect you?

I have had fibro for over 12 years and have now got to the point where I don't know what are fibro symptons and what are not. Getting to the point where I will have to stop working but don't know what or how to claim benefits. Don't even know what benefit names are and what you can apply for.

What does your fibro do to you, or is it just me going ga!ga!

Doctor says there is no more she can do for me medication wise, so was thinking that if they don't make me any better than there's no point in taking them. I take Pregablin, Zapain and Cymbalta.

Please let me know how it affects your life and also (if you don't mind telling me) How much can you claim in benefits, this is a major factor to me. I need to know that I can survive without work.

Thanks so much for your time
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Re: Aday in the life of............

Postby Theresa34 » Tue Aug 12, 2014 10:37 am

I'm a married mum of three kids. I'm also a housewife. I was diagnosed with arthritis last year and fibro his year. How does it affect me? I feel like I'm on a rollercoaster at the best of times. Some days there's a lot,of,pain, some days a lot of fatigue and there are days where I don't feel too bad either way. Its weird but I'm getting used to it. The pain and stiffness are just a part of my life now. I take it in my stride. If I over thought what was happening to me or I worried about it constantly, I would probably be in a deep depression and I would be going mental. For my sanity a sake, I just accept that today I hurt more than yesterday or I know the fatigue will pass after a day or two. I got to a point a few. I this ago where I could exercise five days a week at home. It really helped my pain and stiffness, then the pain and fatigue increased. I believe I could be in a flare for the past month, so not as active as I was. The kids are the reason I get out of bed in the morning. I have to take them to school, pack their lunches, do the housework, keep things ticking. I'm fortunate that its the long school holidays so we have all been sleeping in :-D I don't look forward to the early starts in Sept :shock:

As for my mobility, I use a cane when I need to. I mostly dont need to but it depends really. I know some fibro sufferers are a lot worse off.
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: Aday in the life of............

Postby alibp » Tue Aug 12, 2014 10:43 am

The benefits you can get depend on a lot of things. You can find a benefits calculator online that can give you a rough idea of basic benefits. You can probably claim disability too but some people can find it takes a long time to come through or have to appeal so best to plan around receiving the basics until you are actually receiving more. You can always contact citizens advice as they have people that specialize in benefits.
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Re: Aday in the life of............

Postby rich44 » Tue Aug 12, 2014 11:15 am

I'm always in pretty bad pain, usually I work but had so much time off in past 12 months and I've just been moved to first floor office with no lift so don't know if I'm going to be going back again, waiting for union rep to get in touch.

I often use a stick to walk but can't at the moment because my hands hurt too much to hold and put weight on

Just seem to be getting worse and worse these days
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Re: Aday in the life of............

Postby migrembe » Tue Aug 12, 2014 11:48 am

I officially finished work 4 years this month. The only medication that helps in any way at all is cocodamol everything else caused side effects that were worse than the fibro. I find the fatigue worse to deal with than the pain and the fact that no one gets it or understands. However i live on my own and if i need/want food i have to go get it myself as for anything else in the house it gets done in bits when and if i can. I wouldn't give up work until you have no choice but to do so. I was a staff nurse and had fibro symptoms for some 6 years and then i fell down the stairs at home and although i tried to go back to work i was never really able to.

As for work, try and see if work will finish you on grounds of ill health otherwise you will have to fight for any benefits. This may mean that you will need to go off sick for some time until you both decide that no matter what work can do to help you will never be well enough to do the job you are now employed to do.I was off sick 18 months before work deemed i was unfit to return ever and they had done all that they could to help. Is there nothing they can do at work for you to be able to remain there?

If you leave because of ill health you should be able to claim ESA - Employment Support Allowance for up to a year if you have a spouse or someone who lives with you as a spouse and is working a certain number of hours a week. They will expect you to attend a medical, some people have had lots of problems at these medicals but i haven't ever. https://www.gov.uk/employment-support-a ... -youll-get

Also if you are unable to take care of your own personal needs as often as you need to, or struggle with cooking or walking you can claim, but may find you have to fight for PIP- personal independent payments, which use to be called DLA - disability living allowance https://www.gov.uk/pip/overview

Either way it is not a lot of money, especially if you now work full time and have a reasonable wage coming in.

Hope that is useful. Beverley
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Re: Aday in the life of............

Postby Theresa34 » Tue Aug 12, 2014 12:00 pm

I have looked in disability benefits but I don't qualify. I'm not disabled enough :crazy:
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: Aday in the life of............

Postby Librarychick » Tue Aug 12, 2014 12:58 pm

Ask if you can be referred to a pain clinic I know everywhere is different but most places have good ones. Also keep checking benefits calculated because your symptoms/ pain may change. Also, think of your worst days. That's how you need to fill in the forms.
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Re: Aday in the life of............

Postby klarenbd » Tue Aug 12, 2014 5:28 pm

Thank you so much for taking the time to answer my post. I think I will just have to take a day at a time and just cope with whatever my employers throw at me. X :-P
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Re: Aday in the life of............

Postby positivethinker » Tue Aug 12, 2014 5:44 pm

I find the worst thing is not being able to plan anything in advance as I never know whether I will be ok-ish at the time or whether I will be in pain, exhausted etc. As far as disability benefits are concerned please do remember not to talk about what you can do on a good day, you are not claiming for the 'good days', When you fill your forms in you should refer only to how you feel at your absolute worst, on those days and times when you are so racked with pain and can hardly get out of bed. It is important not to say what you can do. Because two days later you might not be able to do that same thing. Difficult to do when you try and keep positive, but that's the reality of it. Living with fibro is like living a few different lives. Ok days, bad days and absolutely horrendous days. And you never know what you're going to get each day until you wake up.
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Re: Aday in the life of............

Postby ..:: lisa ::.. » Tue Aug 12, 2014 7:33 pm

My days pretty much mirror everyone else's.

I feel like I don't have good days only really bad ones and bad ones :crazy:

I was a fitness instructor, I didn't have a gradual decline in to the fibro/cfs world. I developed a bad smell and taste disorder and grew weak over a few weeks, then after a massive migraine attack that I actually thought was a stroke I never recovered and had to give up teaching as soon as I had left hospital.

I applied for DLA and got refused, I appealed and got refused so didn't bother applying again.

Last week I applied for esa but tbh I'm not hopeful for that either!
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: Aday in the life of............

Postby Paisleyjane » Tue Aug 12, 2014 9:46 pm

Hi, have you tried pain patches ? I use Matrifen. Really good, I can use more as necessary and don't seem to get many side effects.
I had to retire and was off sick for a year before work finished me. I must say haven't had problems with benefits. It takes time and is a nuisance going for assessment for both benefits. I do agree stress your bad days and don't admit to better days. That way if you need to pay for carers, for worst times you can. Take your time and look after yourself gently x
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Re: Aday in the life of............

Postby zappa20 » Wed Aug 13, 2014 12:10 am

It's very bad advice to suggest people filling in forms should only mention their bad days if their condition is variable. And could land you with a charge of fraud and having to repay what you have been awarded. It's more important to explain your condition is variable if it actually is. In this case you should explain that on average in a week you have 2,3,4, or 5 bad days etc.

Assessor's are well aware Fibro is more often than not a variable condition for the majority of people and any hint of someone exaggerating their condition is likely to throw doubt on the integrity of the entire claim. It wouldn't be the first person this has happened to. Be honest as you're signing a declaration to say the information is correct and truthful, just ensure you give enough detailed information on how you're affected. A decision maker who doesn't know you has to be able to understand the difficulties you have. You will get there if your condition warrants it.

If ever anonymously reported and investigated by the DWP , who collect evidence of you out on a good day , you won't have a leg to stand on , if you've stated on your form very day is a bad day, and their is no variability.
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Re: Aday in the life of............

Postby positivethinker » Wed Aug 13, 2014 3:24 pm

zappa20 I have in no way suggested that someone should lie on their DWP forms. What I said was that you should describe your fibro at its worst, not its best. It is the bad aspect of the fibro that prevents you from working or requires you to need extra support. And that is what you are claiming for. You wouldn't be claiming at all if you only had the 'good days' because you'd be functioning ok.
And, as you say, they know fibro is variable so they need to see to what degree your symptoms reach when at their worst. If you try to 'be brave' on your form they will not understand the struggles you have. I have known people miss out on benefits for fibro because they have said 'Mostly I can walk to the shops, but sometimes I can't'. What they should be saying is 'On some days I cannot walk to the shops'. Full stop. It is the day you cannot walk there that you are claiming for. Why is that difficult for you to understand zappa20?

On your form you need to say: ON A BAD DAY I am unable to....... and then state how many bad days you have in a week. Focussing on the positive will only make them think you are more able to cope than you are.

I am annoyed that you think I would advise anyone to put an outright lie on their forms. If you read my original post you will see that I said you have to let them know what you are like on your worst days. No two people have the same symptoms and patterns of fibro, so it is impossible for any 'expert' to gauge how difficult your particular bad days are. I know people who have 'bad days' that I would describe as my better days, so it is vital the DWP know exactly what you have to tolerate/live with at certain times, even if that time is the minority. Saying I CAN WALK TO THE SHOPS MOST DAYS or saying I HAVE SOME DAYS WHERE I AM UNABLE TO WALK TO THE SHOPS are exactly the same thing, neither statement is a LIE, but one is more likely to make them see your difficulties than the other.
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Re: Aday in the life of............

Postby zappa20 » Thu Aug 14, 2014 1:33 am

Suggest you read your earlier post again then. There's no mention of variability and yet most of the descriptor questions have a variable tick box option. How then does someone handle these questions if they take what you said literally, and some people do. Anyone reading your post who has no knowledge of this process or how to fill in a from could quite easily get the wrong idea, and think they should write every day is their worst day.

Which then puts them at a real disadvantage if called to an assessment where a number of questions on daily living are designed to test the strength and accuracy of what people have claimed on their

Iit's for exactly that reason I posted a reply commenting that it's very bad advice to say every day is a bad day if the condition varies. That then differentiates between those for whom very day is an awful day and those who vary. And I make no apology for it.
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Re: Aday in the life of............

Postby positivethinker » Thu Aug 14, 2014 9:26 pm

Oh dear! I have no intention of getting into an argument with you over this. It is boring now!

But to clarify ONCE AGAIN...... I never said 'say every day is a bad day'. I said that people need to describe their bad days and it should be apparent that these are their bad days, not the better days, as it is the bad days they are claiming for. Why the f**k are you struggling to understand this?

And as for 'anyone who reads my post' I am not an expert in benefit applications and never said I was. This is a forum for people to share opinions and I just offered an opinion on the subject of benefit applications. Same thing that happens on every post on every topic on this site many times a day. I know from experience that people try not to moan too much on their forms (as is the British way) and consequently end up having their applications declined because they spend too much time talking about what they can do, rather than what they can't. Often the have success on appeal because for the appeal they present a better argument about what their limitations/difficulties are. If they did this in the first place they would have more success at the original application.

Everyone on here gives some sort of opinion on all manner of matters; medications, alternative therapies etc. Will you be commenting on all of their posts telling them not to say what they think in case anyone with no brain of their own takes things the wrong way or misunderstands.

Leave me alone now please. I am not interested in continuing a discussion with someone who does not understand what is being said because their mind only reads what they want it to.
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