Myalgic Encephalopathy (M.E.), DLA & debt

bigzippy

Hi all. I have now been diagnosed with ME/CFS and Fibro and IBS. The range of symptoms is irritating and depressing and annoying and pretty much ever other word that has negative connotations! I'm "only" 26 and therefore "shouldn't" have any trouble with energy etc. I'm also sick of people (esp my parents :rolleyes:) giving me their versions of events "are you sure it's not mercury poisoning from your fillings - I've read about that" has to be one of my all time favourites. Another is when it gets blamed on my house being to damp/cold (cos I can't afford heating all the time) or mouldy (cos the bloody landlord is rubbish, and cos of the heating I suspect) or whatever - usually with a glance at whatever noticeable household chore is glaringly undone (hoovering and washing up a favourite here... due to no energy to do them!).
My favourite way (at the mo) of expaining to people about my "unseen/invisible illness" is to refer them to the Spoon Theory http://www.butyoudontlooksick.com/the_spoon_theory/ I openly balled my eyes out when I first read it, and it's helped my nearest and dearest "get it" a bit more. That's not to say that ignorance isn't rife, however, so my backup plan is to order this: http://www.cafepress.com/bydls.75690690
Feel free to PM me. And if you have any questions just holler.

Btw - as to the Working Tax Credits - I was awarded those while I was still at uni, I think, but definitely from the age of 21 (not for ME but for hearing impairment) and although it is income and hours worked dependant I'm pretty sure that age isn't a problem. Stupidly enough though, I used to get free prescriptions, dental and eye exams/glasses vouchers on Working Tax Credit - and now I'm unable and classed as disabled (mobility etc wise too now) don't get any of that! :rolleyes:

I hate the benefits people though - they all seem like a bunch of shysters, and Jenna it doesn't surprise me at all that you would consider not bothering reapplying! The hell of the form and the medical exam is enough to put anyone off. The peace of mind of having that bit of extra income the rest of the months of the year makes up for it (just about) though...surely?

maytaurus

bigzippy wrote: »

Hi all. I have now been diagnosed with ME/CFS and Fibro and IBS. The range of symptoms is irritating and depressing and annoying and pretty much ever other word that has negative connotations!
My favourite way (at the mo) of expaining to people about my "unseen/invisible illness" is to refer them to the Spoon Theory http://www.butyoudontlooksick.com/the_spoon_theory/ I openly balled my eyes out when I first read it, and it's helped my nearest and dearest "get it" a bit more. That's not to say that ignorance isn't rife, however, so my backup plan is to order this: http://www.cafepress.com/bydls.75690690
Feel free to PM me. And if you have any questions just holler.

Stupidly enough though, I used to get free prescriptions, dental and eye exams/glasses vouchers on Working Tax Credit - and now I'm unable and classed as disabled (mobility etc wise too now) don't get any of that! :rolleyes:

I hate the benefits people though - they all seem like a bunch of shysters, and Jenna it doesn't surprise me at all that you would consider not bothering reapplying! The hell of the form and the medical exam is enough to put anyone off. The peace of mind of having that bit of extra income the rest of the months of the year makes up for it (just about) though...surely?

..... I also think that's exactly how they want people to re-act so they don't have to give them anything :mad:

VCE_in_Fornax

Hi Jenna and everyone with ME/CFS

I wish I could help you all with knowledge of benefit claiming, I can't however: When I was diagnosed 8 yrs ago, I was in denial, thought I would be able to go back to work after 6 months, my work contract was up for yearly renewal and I was "kindly" steered towards the option, "you're not really able to work now, get better and your job will stay open for you", some of it kindly meant I'm sure, but practically useless.
To cut a long story short, it took me so long to
a/ accept the illness,
b/ to be able to even start thinking straight,
I found friends in a local support group and from what everyone was saying it was a real struggle to get benefits, so I decided to use my little energy to focus on getting cured.
I am lucky in that I have a wonderful husband who has supported me in every aspect of the quest for a cure.

I apologise to you all for just skimming your posts, because of limited time and energy, and not responding to everyone, but all I can share with you is what the illness has taught me:

1- I hardly care anymore about what anyone thinks about me, whether they think I put on an act, show weakness, am just depressed, etc. I leave them to their own ignorance, and deny them the right to upset me. I will not spend my precious energy in trying to put them right. I think we all tend to be prejudiced in one form or another and it should be everyone's personal journey to try and free oneself of them, not my crusade.
I have nothing to prove to anyone. Nor have you. except of course when trying to get benefits...

2- I welcome people who try to understand and show real compassion, everyone goes through life experiencing some suffering, even if it's for totally different reasons to mine, and just as happiness does, pain unites people.

3- If I am honest, as well as biological causes (Glandular fever, weak immune system, weak detox abilities- ie weak liver-) the onset of ME was due to some physical trauma (car crash), emotional trauma (bullying at work, long standing difficulties with family, and rough time in relationship), and also partly to my personality- hypersensitive, needing approval, wanting to be loved, being chronically anxious, insecure. It was also due to my GP's inability to diagnose my glandular fever in time, and my own stubborness and ignorance of what could happen.

So what I am trying to do is addressing the physical causes, and I have been making progress thanks to my consultant, wonderful Dr Sarah Myhill, (www.drmyhill.co.uk).

I am also trying to resolve the emotional factors by working on my issues with family.
I won't change who I am but I can change my response to people and events.

I won't hide the fact that ME/CFS has destroyed the dreams I had, I may never have the children I long for, and it breaks my heart, and some days I wish could just disappear into thin air, but fortunately it goes away before I have to reach for antidepressants. If it doesn't with you, please get help from anywhere you can, don't let depression swamp you on top of everything. And if you already suffer from secondary depression, believe that this too will pass.
I get a lot of support from my friends who have ME and for that joining a support group was invaluable. see www.afme.org

I have changed the way I look at life and try to be positive.

Please everyone out there with M.E, don't despair, we will beat this.
Thank you for everyone who posted valuable info on dealing with the dla, I will soon try to get onto that, credit crunch oblige...



Take Care
VCEiF:D

sleepymy

bigzippy wrote: »

Hi all. I have now been diagnosed with ME/CFS and Fibro and IBS. The range of symptoms is irritating and depressing and annoying and pretty much ever other word that has negative connotations! I'm "only" 26 and therefore "shouldn't" have any trouble with energy etc. I'm also sick of people (esp my parents :rolleyes:) giving me their versions of events "are you sure it's not mercury poisoning from your fillings - I've read about that" has to be one of my all time favourites. Another is when it gets blamed on my house being to damp/cold (cos I can't afford heating all the time) or mouldy (cos the bloody landlord is rubbish, and cos of the heating I suspect) or whatever - usually with a glance at whatever noticeable household chore is glaringly undone (hoovering and washing up a favourite here... due to no energy to do them!).
My favourite way (at the mo) of expaining to people about my "unseen/invisible illness" is to refer them to the Spoon Theory http://www.butyoudontlooksick.com/the_spoon_theory/ I openly balled my eyes out when I first read it, and it's helped my nearest and dearest "get it" a bit more. That's not to say that ignorance isn't rife, however, so my backup plan is to order this: http://www.cafepress.com/bydls.75690690
Feel free to PM me. And if you have any questions just holler.

Btw - as to the Working Tax Credits - I was awarded those while I was still at uni, I think, but definitely from the age of 21 (not for ME but for hearing impairment) and although it is income and hours worked dependant I'm pretty sure that age isn't a problem. Stupidly enough though, I used to get free prescriptions, dental and eye exams/glasses vouchers on Working Tax Credit - and now I'm unable and classed as disabled (mobility etc wise too now) don't get any of that! :rolleyes:

I hate the benefits people though - they all seem like a bunch of shysters, and Jenna it doesn't surprise me at all that you would consider not bothering reapplying! The hell of the form and the medical exam is enough to put anyone off. The peace of mind of having that bit of extra income the rest of the months of the year makes up for it (just about) though...surely?

I'm sorry to hear of all your troubles zippy, I was 26 when I was diagnosed with ME & had to drop out of uni.

Can I just be really annoying and say that the damp and mould could be making your condition worse. I've had problems with damp for years and recently bought a dehumidifier and it's really helped with some of my symptoms. My doctor has recently suggested that I'm allergic to mould (which, as you know, accompanies the damp) so we're doing all we can to eradicate it from the house. My mum's calling round today with her steamer to blast the place. My symptoms worsen when I'm in humid/damp conditions and my sinuses go crazy when I inhale mould and it flares up my mild asthma.

Anyhow, all my blathering is just in case you see anything similar in your health, if so, you could ask your doctor if you could be allergic to mould and if you are it might help you to get onto a council housing list and maybe get a property with double glazing.

tom9980

Lindsey1948 wrote: »

The two main criteria for getting DLA are these: 1. Whether you can prepare from scratch a meal for yourself, cook it using a cooker/oven, test whether its cooked and serve it up. No think about every single step this involves. Plan the meal, look up recipes to follow instructions, make a shopping list, Go to shops, buying the food, preparing the veg/meat etc, filing pans with water, putting in oven (meat) timing the process, checking if cooked, emptying pans of contents safely, taking meat out of oven, dishing meal up. If there are any of this you cannot do on a bad day, then you are entitled to at least low rate care. If you need someone to remind you to take medication/bath/drink/feed/help with bed needs then you would be entitled to middle rate as you have.
2. Your walking distance is no more than 300 yds BEFORE you start feeling severe pain or discomfort. Again think about this - most people with ME will say that they cannot walk more than a few steps without feeling discomfort, the fact that you struggle to walk for 10 mins to work, doesnt mean you are not entitled - because you may well be in pain from yourgarden gate. Do you get my drift?

Thats very well put this makes me want to apply for DLA even more. I personally feel im borderline for low care and mobility and i may get the rejection letter but they say i wont be entitled to anything within a year despite being too unwell to work so what choices are left for me?

bigzippy wrote: »

My favourite way (at the mo) of expaining to people about my "unseen/invisible illness" is to refer them to the Spoon Theory http://www.butyoudontlooksick.com/the_spoon_theory/ I openly balled my eyes out when I first read it, and it's helped my nearest and dearest "get it" a bit more.

Thanks for that the "spoon theory" is a really nice way to explain things.

sleepymy

VCE_in_Fornax wrote: »

Hi Jenna and everyone with ME/CFS

I wish I could help you all with knowledge of benefit claiming, I can't however: When I was diagnosed 8 yrs ago, I was in denial, thought I would be able to go back to work after 6 months, my work contract was up for yearly renewal and I was "kindly" steered towards the option, "you're not really able to work now, get better and your job will stay open for you", some of it kindly meant I'm sure, but practically useless.
To cut a long story short, it took me so long to
a/ accept the illness,
b/ to be able to even start thinking straight,
I found friends in a local support group and from what everyone was saying it was a real struggle to get benefits, so I decided to use my little energy to focus on getting cured.
I am lucky in that I have a wonderful husband who has supported me in every aspect of the quest for a cure.

I apologise to you all for just skimming your posts, because of limited time and energy, and not responding to everyone, but all I can share with you is what the illness has taught me:

1- I hardly care anymore about what anyone thinks about me, whether they think I put on an act, show weakness, am just depressed, etc. I leave them to their own ignorance, and deny them the right to upset me. I will not spend my precious energy in trying to put them right. I think we all tend to be prejudiced in one form or another and it should be everyone's personal journey to try and free oneself of them, not my crusade.
I have nothing to prove to anyone. Nor have you. except of course when trying to get benefits...

2- I welcome people who try to understand and show real compassion, everyone goes through life experiencing some suffering, even if it's for totally different reasons to mine, and just as happiness does, pain unites people.

3- If I am honest, as well as biological causes (Glandular fever, weak immune system, weak detox abilities- ie weak liver-) the onset of ME was due to some physical trauma (car crash), emotional trauma (bullying at work, long standing difficulties with family, and rough time in relationship), and also partly to my personality- hypersensitive, needing approval, wanting to be loved, being chronically anxious, insecure. It was also due to my GP's inability to diagnose my glandular fever in time, and my own stubborness and ignorance of what could happen.

So what I am trying to do is addressing the physical causes, and I have been making progress thanks to my consultant, wonderful Dr Sarah Myhill, (www.drmyhill.co.uk).

I am also trying to resolve the emotional factors by working on my issues with family.
I won't change who I am but I can change my response to people and events.

I won't hide the fact that ME/CFS has destroyed the dreams I had, I may never have the children I long for, and it breaks my heart, and some days I wish could just disappear into thin air, but fortunately it goes away before I have to reach for antidepressants. If it doesn't with you, please get help from anywhere you can, don't let depression swamp you on top of everything. And if you already suffer from secondary depression, believe that this too will pass.
I get a lot of support from my friends who have ME and for that joining a support group was invaluable. see www.afme.org

I have changed the way I look at life and try to be positive.

Please everyone out there with M.E, don't despair, we will beat this.
Thank you for everyone who posted valuable info on dealing with the dla, I will soon try to get onto that, credit crunch oblige...



Take Care
VCEiF:D

What a great post :T :T :T

Ames

sleepymy wrote: »

I'm sorry to hear of all your troubles zippy, I was 26 when I was diagnosed with ME & had to drop out of uni.

Can I just be really annoying and say that the damp and mould could be making your condition worse. I've had problems with damp for years and recently bought a dehumidifier and it's really helped with some of my symptoms. My doctor has recently suggested that I'm allergic to mould (which, as you know, accompanies the damp) so we're doing all we can to eradicate it from the house. My mum's calling round today with her steamer to blast the place. My symptoms worsen when I'm in humid/damp conditions and my sinuses go crazy when I inhale mould and it flares up my mild asthma.

Anyhow, all my blathering is just in case you see anything similar in your health, if so, you could ask your doctor if you could be allergic to mould and if you are it might help you to get onto a council housing list and maybe get a property with double glazing.

The council houses round here are more likely to have damp and mould, minne's terrible for it and I know others have the same problem. Most people in council houses can only dream of double glazing!

bigzippy

hi sleepymy: re the council house malarky - I wouldn't bother to apply for one, not just because I know what they can be like round here... but because I'm getting married in September (2009) and as part of that me and my new husband will be looking for a nice bungalow to rent... no more stairs!! Yay!! :T

Whilst I agree (in theory) that mould/damp makes things worse... I'm not in a position to do an awful lot about it. I can't afford heating all the time. The damp proof course is crap. All available insulation is in. The house is double glazed. I don't have the energy to clean all the time. I'll just have to wait for my lovely bungalow (can you tell I'm excited? no stairs or anything!! woop woop!! :rotfl:)

Ames - I agree that the majority of coucil houses would be worse and I wouldn't qualify for a decent one at any speed anyways.

Maytaurus - Frustrating isn't it? I especially love when my parents (who are in nearly every other way completely useless and unhelpful) harrass me about whether I'm claiming everything I'm entitled to... they just don't get how the system works, or how tiring/exhausting/depressing the process is! :mad:

daska

Go for the DLA. Good advice to be found on benefitsandwork website, a small payment for a good result. Is it true that the new system apparently won't consider you for the higher rate unless you've been prescribed a major piece of mobility equipment? I have no idea, thankfully my GP prescribed a wheelchair... Good luck Jenna, I've just had mine renewed for 2 years, I can relax for a little bit.

It got a bit off topic with mouldy council houses but if you're stuck in a house that isn't decent - i.e. warm, weatherproof and with reasonably modern facilities and no safety issues google HHSRS and get aquainted with the guidance for landlords, then contact your local council and insist they come and inspect. They will prosecute the person who receives your rent (if that is necessary of course) - your agent, HA, local council...

bigzippy

Oooh that all sounds rather stressful, but I appreciate the thought daska. To complicate matters further, my landlords are my best friends parents. As much as it may delay some recovery I fear that the stress of taking any kind of action like that would much outweigh the benefits! Esp as, like I say, I'm moving out in summer anyway (Yay again!).

Could be of help to someone though