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Mobility and POTS - PIP Assessment this week
- NotActuallyCrazy
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4 years 10 months ago #232417 by NotActuallyCrazy
Mobility and POTS - PIP Assessment this week was created by NotActuallyCrazy
Hi everyone,
I have ASD, EDS and POTS. This is the first time I've applied for pip even though I have had these symptoms for life/ severe for 10+ years. We have only found out the diagnoses now.
I am confused about the moving around question - I have been told by the person at uni who has been helping me with the form, that I should put down cannot stand and walk at all because my symptoms start as soon as I stand up. I lose vision, get breathless, my heart goes up to 110-160 from 60, I see white lights, become spaced out, get vertigo, ringing ears, pain from the blood pooling in my feet, and it is extremely exhausting to even stand up to get the remote or answer the door.
However, the biggest advice for POTS is to remain active as much as possible, so I try my best to do things unless I fear it will prevent me from doing something else I need to later (for example, if I know I need to shower that night, I will ask for more help during the day to save spoons).
Sometimes, I manage to walk the dog down the lane which I do because it is recommended for POTS so it doesn't get worse. I'm still really young, I have kids, I don't want to get worse but due to my POTS being linked to EDS I will probably have it my entire life, as I have already. I prepare first and make sure my husband is home, knows exactly which route I'm taking, both our phones are charged and the gps tracker app is running. When I get home I get into bed immediately and that is me for the night, I will have white vision, be breathless, have chest pain and feel like I'm in a movie (spaced out) for hours. I cannot get up again and have everything I need next to the bed. It will affect the next day, and I need to save my energy in other ways in order to do it, but I prioritise it for the sake of my health.
Anyway, all this is to say that I'm afraid that because I *can* walk the dog that it means I shouldn't have put that I cannot stand and walk on my form? But I absolutely cannot walk at all without all these symptoms kicking off and no amount of stopping helps, I need to lie down flat for at least an hour after any amount of walking, even just within the house, to feel almost symptom-free again. I spend 1-2 days a week in bed unable to even sit up due to symptoms. A few short walks in the house to pee or fill my water bottle are even exhausting on these days.
I am worried if I get awarded pip for mobility and then I'm seen walking the dog one night I will be accused of fraud, even if it's taking every ounce of will power I've got to go on a walk. Ugh, this whole thing is making me an anxious mess!!
I have my assessment this week and have no idea how to answer this question. This whole thing is horrible and I'm almost regretting even starting it. Any guidance would be greatly appreciated.
I have ASD, EDS and POTS. This is the first time I've applied for pip even though I have had these symptoms for life/ severe for 10+ years. We have only found out the diagnoses now.
I am confused about the moving around question - I have been told by the person at uni who has been helping me with the form, that I should put down cannot stand and walk at all because my symptoms start as soon as I stand up. I lose vision, get breathless, my heart goes up to 110-160 from 60, I see white lights, become spaced out, get vertigo, ringing ears, pain from the blood pooling in my feet, and it is extremely exhausting to even stand up to get the remote or answer the door.
However, the biggest advice for POTS is to remain active as much as possible, so I try my best to do things unless I fear it will prevent me from doing something else I need to later (for example, if I know I need to shower that night, I will ask for more help during the day to save spoons).
Sometimes, I manage to walk the dog down the lane which I do because it is recommended for POTS so it doesn't get worse. I'm still really young, I have kids, I don't want to get worse but due to my POTS being linked to EDS I will probably have it my entire life, as I have already. I prepare first and make sure my husband is home, knows exactly which route I'm taking, both our phones are charged and the gps tracker app is running. When I get home I get into bed immediately and that is me for the night, I will have white vision, be breathless, have chest pain and feel like I'm in a movie (spaced out) for hours. I cannot get up again and have everything I need next to the bed. It will affect the next day, and I need to save my energy in other ways in order to do it, but I prioritise it for the sake of my health.
Anyway, all this is to say that I'm afraid that because I *can* walk the dog that it means I shouldn't have put that I cannot stand and walk on my form? But I absolutely cannot walk at all without all these symptoms kicking off and no amount of stopping helps, I need to lie down flat for at least an hour after any amount of walking, even just within the house, to feel almost symptom-free again. I spend 1-2 days a week in bed unable to even sit up due to symptoms. A few short walks in the house to pee or fill my water bottle are even exhausting on these days.
I am worried if I get awarded pip for mobility and then I'm seen walking the dog one night I will be accused of fraud, even if it's taking every ounce of will power I've got to go on a walk. Ugh, this whole thing is making me an anxious mess!!
I have my assessment this week and have no idea how to answer this question. This whole thing is horrible and I'm almost regretting even starting it. Any guidance would be greatly appreciated.
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- BIS
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4 years 10 months ago #232418 by BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by BIS on topic Mobility and POTS - PIP Assessment this week
Hi Rachael
Do not waste your time worrying about 'what ifs' because firstly you have to have your assessment. The chances are the assessor is going to ask you about your ability to walk and you can explain just as you have done here.
You are not required to walk pain free but any pain that restricts the distance that you can walk should be taken into account.Specifically for the Moving Around activity, if you are able to walk but you are in severe pain when doing so, then you can argue that your walking is not to a necessary standard and should be disregarded.The legal test requires you to stand and then move (walk), so if you have problems getting up then you should document these as well.If you walk slowly then it must take you at least twice the time to cover the 20m as a healthy person would, this could be down to the speed of your walking but could also be the result of having to stop.You must be able to repeat the distance, so if you could walk it once but not then be able to walk it again within a reasonable timescale then you should be classed as unable to repeat the activity.I'm afraid I can't tell you how to show your walking is more restricted but things you need to think about is what you can't do, for example what can you walk in your house, how far is the toilet from where you normally sit, things that will count against you are any trips that you make outside, so for example, how do you do your shopping?
You must be able to walk the distance you can, reliably and on the majority of days, both these terms are defined in the PIP Claim guide
www.benefitsandwork.co.uk/help-for-claimants/pip
So you need to explain what you can, how you are limited and why.
From what you said I can see why someone would have suggested that you ticked no on your form.
BIS
Do not waste your time worrying about 'what ifs' because firstly you have to have your assessment. The chances are the assessor is going to ask you about your ability to walk and you can explain just as you have done here.
You are not required to walk pain free but any pain that restricts the distance that you can walk should be taken into account.Specifically for the Moving Around activity, if you are able to walk but you are in severe pain when doing so, then you can argue that your walking is not to a necessary standard and should be disregarded.The legal test requires you to stand and then move (walk), so if you have problems getting up then you should document these as well.If you walk slowly then it must take you at least twice the time to cover the 20m as a healthy person would, this could be down to the speed of your walking but could also be the result of having to stop.You must be able to repeat the distance, so if you could walk it once but not then be able to walk it again within a reasonable timescale then you should be classed as unable to repeat the activity.I'm afraid I can't tell you how to show your walking is more restricted but things you need to think about is what you can't do, for example what can you walk in your house, how far is the toilet from where you normally sit, things that will count against you are any trips that you make outside, so for example, how do you do your shopping?
You must be able to walk the distance you can, reliably and on the majority of days, both these terms are defined in the PIP Claim guide
www.benefitsandwork.co.uk/help-for-claimants/pip
So you need to explain what you can, how you are limited and why.
From what you said I can see why someone would have suggested that you ticked no on your form.
BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
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