How can you prove you have pots with cfs/me?

notanewuser · 6 January 2015 at 8:23PM

hmf wrote: »

I have asked my gp for the pots test as one idea of how I can prove that I do suffer dizzy spells.

My sister has POTS. Hideous condition. She manages to perform 12 hour day and night shifts for the emergency services while managing the condition herself with no medication and no benefits. I'm not sure how a diagnosis of POTS would help you at all.

(She has a static seat in her bath for when she has a shower as the hot water also makes her dizzy.)

hmf_2 · 6 January 2015 at 8:37PM

Not a new user.

I have cfs/me and possibly pots but cannot have the test to be diagnosed for this. I have to sleep for most of the day because of total exhaustion. Unless you have this disability or have witnessed somebody close to you with the same as me then you probably don't fully understand how debilitating the illness can be. I wish I did only have pots.

The reason for posting on this site is for helpful kind help from other people that have been in similar situations. I think it is harsh to compare one persons disability to another person who is fortunate to be able to work. I would love to return to work and one day I believe I will but at the moment my body says differently. I'm p,eased for your sister that she is able to work 12 hour shifts with pots. I wish I could do the same and support myself again.
My dizzy spells which might be pots is just one part of having ME. Don't judge me please.

hmf_2 · 6 January 2015 at 8:38PM

Tea-bag who is your post aimed at regarding doing housework? Torry Quinn I'm guessing.

hmf_2 · 6 January 2015 at 8:40PM

Notanewuser if you were unfortunate to be in the position of needing to apply for PIP then you would understand my original post.

notanewuser · 6 January 2015 at 8:44PM

hmf wrote: »

Not a new user.

I have cfs/me and possibly pots but cannot have the test to be diagnosed for this. I have to sleep for most of the day because of total exhaustion. Unless you have this disability or have witnessed somebody close to you with the same as me then you probably don't fully understand how debilitating the illness can be. I wish I did only have pots.

The reason for posting on this site is for helpful kind help from other people that have been in similar situations. I think it is harsh to compare one persons disability to another person who is fortunate to be able to work. I would love to return to work and one day I believe I will but at the moment my body says differently. I'm p,eased for your sister that she is able to work 12 hour shifts with pots. I wish I could do the same and support myself again.
My dizzy spells which might be pots is just one part of having ME. Don't judge me please.

Woah, twisty pants! Your OP implied that a diagnosis of POTS would get you somewhere. It won't. Given people can't even get TREATED for the most severe cases of POTS (my sister's specialist is amazed she can get out of bed - she has a very positive attitude) I don't know why you think it would help your claim.

I know a number of people with CFS/ME as well. I'm not speaking blindly here.

Yes, your case is unique, yes, only you know how awful it all is, but ultimately all you seem to be doing here is trying to squeeze more and more money out of the welfare system despite nothing actually changing.

hmf_2 · 6 January 2015 at 8:56PM

If my condition fits the pip descriptors then I qualify for the care element to pay for a carer. My condition does fit the pip descriptors to score me the 8 points that I need to qualify but the DWP do not always play fair.
It is your opinion that I am trying to screw every little bit of money out of the welfare system. What is the welfare system there for? It's there to help out people who need some help to hopefully get them back on there feet again one day. I have worked all my life mainly working a 55 hour week so don't judge me a lazy. I have paid in plenty of money in tax and NI and I am now in the position that I need a little help. There are genuine people out that that are disabled and would rather not be and be able to have a fully working body like yours. Nobody wants to live off disability benefits.
Let's hope that you have good health for the rest of your life and don't need to find out what a battle it is to get what you are entitled to.

hmf_2 · 6 January 2015 at 8:59PM

Thank you for all the helpful comments made on here. This site is great for advice.

To the people that seem to think that the disabled are scrounges get a life. We would love to have fully functioning bodies again.

notanewuser · 6 January 2015 at 9:01PM

hmf wrote: »

If my condition fits the pip descriptors then I qualify for the care element to pay for a carer. My condition does fit the pip descriptors to score me the 8 points that I need to qualify but the DWP do not always play fair.
It is your opinion that I am trying to screw every little bit of money out of the welfare system. What is the welfare system there for? It's there to help out people who need some help to hopefully get them back on there feet again one day. I have worked all my life mainly working a 55 hour week so don't judge me a lazy. I have paid in plenty of money in tax and NI and I am now in the position that I need a little help. There are genuine people out that that are disabled and would rather not be and be able to have a fully working body like yours. Nobody wants to live off disability benefits.
Let's hope that you have good health for the rest of your life and don't need to find out what a battle it is to get what you are entitled to.

Your post history says otherwise, darling. I don't envy you your condition(s) but I'm just going from what you yourself have said.

racon · 6 January 2015 at 9:03PM

Horseunderwater wrote: »

Same applies to mobility, if you get dizzy after say 2 meters of walking, so are in danger of falling down - that's what they need 2 know. Hope U take this on board & go 4 it.

Hey but surely no one at the DWP is going to accept what the claimant says? It goes back to supplying good quality, relevant evidence. I could say that my legs don't work, and should I expect the DWP to accept that? You have to show that because of a condition that bathing is an almost impossible action. Better to have an OT/Social Worker see you in action (or non action as the case may be) and then you have an independent report. The DWP know full well that claimants exaggerate, add a bit here and there in the hope that what they have written gets them a better result.
By the way it isn't in no more than twice the time of an able bodied person does it - it should read .........time of the slowest able bodied.....

lemontart · 6 January 2015 at 9:06PM

showers can be dangerous for those getting dizzy spells. I have cfs and get dizzy and also have balance issues resulting in regular falls in shower. I now only shower when someone here due to risks I cannot safely get in and out of a full bath having fallen doing that or may get spasms when in bath