advice greatly appreciated

Im caught between a rock and a hard place and I just dont know what to do. I dont claim PIP or DLA but dont know if I should be or if there is any other help I can get. I have RRMS and as long as I keep to a very strict routine I pootle along ok. But the minute I up my game and do some’ normal’ things and do a normal day i a wreck, I work from home as a Phoenix trader so thats very minimal work and I dont do may craft fairs etc as it saps my energy I did two just before Christmas and ended up on the sofa for 4 days, not really worth it , was it!!. and I am constantly juggling and compramising so that I dont push my self back into a state of tiredness. I also support my son that has Aspergers and in another 12 months he will be home from college and We will be constant companions again, I had him at home full time for 6 months at the end of School and it completely broke me physically.

I feel like im not being true to my self by living a quiet life as much as I can but the alternative is to do more but do it on sticks and sometimes in a chair. Today I couldnt fill out the PIP form, if I did what I would call a normal day or worked for propably more than 2 days I could fill it out and tick a lot of the boxes, what do I do?.

Anyone else in this situation.

Thanks in advance

Merry Christmas

BC xx

Hi, sorry to see no-one else has replied.

Dunno if I can help, but oif you need help with an personal care or transport costs, then go ahead and apply for PIP (the old DLA).

I know the forms are horrendous to fill in, but I got help with a disability charity to fill mine in.

Folk here advise us to join a site called Works and Benefits (not DWP). It cost £20 a year to join, but they help big time.

With a chronic condition like MS, you are right to pace yourself…as you say, you`ve already learned that doing too much leaves you worn out.


Hi you need to tell them about your worse days. I got my DLA because of that.

MS is variable they know that.

I would try and get if you can. IF you have days you struggle to walk then you should apply for it.

Thanks, I’ve had a look at the work & benefits website and joined. Looking at everything I think I’d be better off applying for the ESA, I’m completely kidding myself about ‘work’ I just can’t manage, just tried to prove my self wrong and went to tesco on my own… Lasted one aisle before the trolley was holding me up, now slumped on the sofa sulking. But do you have to be getting DLA before you can get ESA ?. Cheers bC x

I was dx in April this year with RRMS, and a few months later filled out the forms for DLA. I was awarded the lower rate for care and nothing for mobility. This was a blow as there are numerous times when I can’t drive because my left leg feels like it belongs to someone else!

After advice from my GP and MS nurse I re-applied putting on the form how I am on my worst days. I was subsequently awarded the higher rate for both care and mobility. I have an automatic car on order through motability, and have a blue badge for parking.

It’s like having a weight lifted off my shoulders as I’ve always been extremely independant, and not being able to drive myself and my children about has been really hard!

You should apply for everything you can stating how you are at your worst. I put on my form that sometimes if my duvet falls off my bed in the night, I can’t pull it back on. i thought this trivial but GP told me to include it)

So give it go, and all the best!


Hi i was on esa when i went for medical i failed if u can lift both arms at medical its instant fail i had to change my claim to income support as they wont give me esa for ms x

Variable conditions are hard to describe on benefit applications. Many people talk about describing your “worst day” and I think that you should absolutely do that BUT to imply that your “worst day” is a 24/7 situation is to lay yourself open to all sorts of problems. If you describe a day with horrendous symptoms and get called for a medical on a “good day”, at best it will seem that you have gilded the lily at worst it will look like fraud.

The thing to do is describe your worst day in all its gruesomeness (forget the swingy bit of space they give you and go onto an extra sheet) but clarify it by describing where things are different on a “better day” Don’t say “good”. I’ve not had a “good” day since 1994. PIP actually clarifies variability better than other benefits:

If a symptom appears only once during the day it is considered to be evident for the whole 24 hours (This is good for variable fatigue)

The other figure seems to be that a symptom (descriptor) should be evident for 50% of the time. The time , I think, is 12 months.

So it’s up to you to say how many days a week/weeks a months/ months a year that worst case scenario exists. If the worst symptoms are not predictable (which is I’m sure the case) describe how you have to make plans and adjustments to accommodate your MS so that even on those “better days” your life is not normal. Can you live a normal life? Think carefully when you answer those boxes. Can you do things because you have found ways to do them or do you do them like a healthy person? The other important factor in PIP is reliability. If you cannot do the activity:

-Safely–in a fashion that is unlikely to cause harm to themselves or to another person.

-To a necessary and appropriate standard–given the nature of the activity.

-Repeatedly–as often as is reasonably required.

-in a timely manner–in a reasonable time period.

Then you are classed as not being able to do it at all

You mention in a later post deciding to apply for ESA instead – don’t do it instead do it as well. Just keep in mind that the two benefits are quite different although some of the questions seem similar. ESA is only concerned with activities that are relevant to the work place (sitting, standing, carrying things etc) whilst PIP is looking at how you live your day to day life (bathing and dressing etc)

Catmummy – I can lift both arms over my head and I am in the ESA support group. I score maximum points for walking (or lack of) and continence, neither of which are affected by the movement of my arms. If you can score a total of 15 points on other descriptors you should appeal that decision. If you are able to do one of the descriptors it does not preclude you from scoring points on the others. If less than 28 days have passed since your decision letter you can ask for the decision to be looked at again.


DLA and ESA are totally different hun.

I would apply for DLA if your have a need for help with mobility and care you should apply for it.

I didnt get a single point my partner moved in in june so we live off his wages so dont need to claim anything luckily if i was able to claim the council would take whatever money off us towards rent so may as well keep income the same x

Hello bc

Excellent advice from Jane as usual. Glad you’ve joined the benefit at work website…you will find that really helpful.

Can I just say, to keep copies of everything.

Send in as much supporting evidence as you can. Think about asking your gp to write a letter of support for you if you think that may help. May cost you a few pounds but worth it…my gp waivered the fee bless her.

I also sent all my forms off by special delivery, costs between £6 & £7. I just like to have proof of everything, so worth it to me.

Do not be discouraged if you get knocked back. I did and appealed. It took nearly a year and yes it was stressful but in the end it was resolved in my favour.

Good luck xxx

Thank you my loves, great advice. The reason I thought about trying for ESA over DLA is that reading the outline bumpf I felt I related better to that, and I feel like I’m not at a point that DLA is for me, that probably doesn’t make sense, I know for sure if I was expected to work and do anymore than I am now (looking after the kids,house etc) then I would crash and burn very quickly , with in days, but if I keep to a good routine I can plod along ok, so plodding along I can do everything on the DLA form, am I in denial?. But if I pushed myself I would tick lots of boxes, I think what I’m most scared of is feeling like a fraud on a good day, even though I would be in support of someone else in my position going for DLA, I can’t get my head around it, it feels like I’ve given up. As does applying for ESA, I know it shouldn’t but it does, one thing that frightens me is that darn programme, saints & scroungers, what if someone saw me on a good day, but it had taken me a week to get up the energy to have that good day and would take days to get over, they wouldn’t see the before and after. Being completely irrational but it worries me.

Hi BC,

I think that sometimes it takes us a while to accept that we have to ask for help so you’re not giving up at all hun. The things that you see on TV and read about in the papers are supposed to make us feel this way, so please try not to think too much about them.

It is difficult when you have a fluctuating condition, as people rely a great deal on appearances to judge us. Only you know how you feel, so please don’t let it put you off applying.

The B&Wsite is great and I have used them many times. If you’re reluctant to apply for PIP (the new version of DLA), they have a self-test on the site which will give you some idea of whether you qualify for it. When answering the questions, I’ve always been advised to think about whether something applies to me for more than 50% of the time. It’s a benefit that is not means tested and applies whether you’re working or not.

Best of luck hun,

Mags :slight_smile: xx

Thanks Mags, I’ve just done the pip test and answered according to the last few days and I scored enough for the lower rate on both, which was a bit of a shock. Have spent all day on the sofa trying to gather enough energy to take my daughter to her club tonight, this is no life. Appreciate all your replies, lots of great advice as always xxx