Last reply 10 months ago
I used to be somebody… (pip related)

Working on my pip forms im just feeling terribly bleak. Summarising on paper all the horrible things illness has taken from me is such a dispiriting thing to do. I used to have a very adventurous and high-flying life, now.. no.

Please tell me I’ll get through this πŸ™ looking at all my disability itemised on paper makes me feel like I’ve lost myself. I’m also afraid I’ll mess up the interview by feeling so insecure I’ll be afraid to admit the extent of my vulnerability, if that makes sense.

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10 months ago

Hi @soprano. Bit of a different process here in Canada (no interview), but I know what you mean about an itemized list of everything β€˜wrong’ to qualify for federal disability pension. Seriously to see it on paper you might wonder how I function at all!

Do a trial run at interview to get comfortable with discussing? Think of it like a job interview (the job is looking after yourself!)… so how are you qualified? Own itπŸ˜‰

On the flip, I found making a list of all the things right, new hobbies, silver linings, etc helped me realize my new normal isn’t all bad. Hang in there!

10 months ago

Hi @soprano πŸ‘‹

You’re not alone. I’ve recently done the same PIP exercise and as a result am feeling exactly the same as you. The extent of my downward spiral is frightening, but there are so many that are worse off than us in the world. @mhworden has raised some good points. I guess we’ve got to stop hankering for the past and live in the present and get used to our new ‘normal’. Try to be strong at your assessment – have someone there with you for support. I have my PIP assessment on Monday. Not looking forward to it but when it’s over my view is going to be OK, today is the very first day of the rest of my life and hell, I’m going to make it count. The road has not come to an end, I’ve just reached a crossroads and need to decide which way to turn. Remember, when one door closes, another opens. You’ve just got to spot that door opening and have the courage to walk through it and on to new things. Different things. Stay strong πŸ’ͺ and good luck πŸ™.

Suze xx

PS. PM me if you would like to talk more – we could support each other . . . 😊

10 months ago

This is the main reason why we should have an experienced third party to help complete this form. We are usually optimistic by nature, but we need to be totally objective and an experienced third party can provide that objectivity.

It can be a “rude awakening” when you realise how the MS has actually affected you.

10 months ago

I know exactly how you feel am starting to fill out my form and feeling really over whelmed with it all having to put down in paper how it effects you.

10 months ago

Thanks, all. I’m seeing my gp on Monday to talk about this and hope he’ll be willing to write in support if my application discussing the changes he’s seen in me (I’ve known him 10 years) and to get some mental health support through the process. I just don’t like this because I’m used to focussing on what I can do, not itemising what I can’t, and I know that to qualify I’m going to have to show the interviewer the ‘sick’ me which is not something I share with strangers. On the practical side someone from Welfare Rights is coming out to help me polish my application.

I took a day off from this yesterday and spent the day working hard on a demanding new aria – reminded myself I’m still me, and I’m fortunate enough to have recovered enough function to still be able to enjoy what matters most to me – feel much better now. Thanks everyone.

10 months ago

I’m from Canada as well so there is no interview and you can pay your family doctor to fill forms that can be done by them so I did have to go in to doctor and explain everything to her while she wrote it down and it was two things for me. A rude awakening and a bright eye opening. I used to take so much for granted that I don’t have anymore like the ability to go bathroom standing up. Such little things like that but the bright eye opening I had was now I know what is taken from me and faced it, it was time to fight to get it back and I haven’t stop fighting for 8 months straight went to physiotherapy went to the gym and went for walks and prior to doing so I could only watch short distance with crutches and long distance with a wheelchair and lost my eye sight several time as well as pin and needles and lost sensations in my legs from thigh down. I started at the physio in June 2017 and started at the gym in October 2017 20lbs leg press and today I am doing 300lbs leg press and walking medium distance with no help and have my sensation back in my legs all the way down to my ankles I don’t feel my feet and I still have pin and needles and my eye sight still goes away but I fought it back that much and gained stuff I lost just by fighting for what I want back. Let me tell you it’s hard and scary but you keep hope, faith and believe in your own strength you can make it as well!! I believe in everyone In this fight with MS! Keep on fighting to win πŸ‘

10 months ago

@soprano don’t forget this website feels like is built to bring people fight the good fight against ms and I’m sure hundreds or thousands of people on shift are there for you and we can help with mental support in a way if you’d like you just gotta reach ouch and I’m sure you’ll get answers or knowledge or support quick! Take good care of yourself and don’t think of what you can’t do think of how you can do what you can’t do πŸ˜πŸ‘

10 months ago


“I’m going to have to show the interviewer the β€˜sick’ me which is not something I share with strangers”

Maybe I am missing something but talking to strangers I will never see again is easy. Telling my friends & family that if I stand up in the middle of a conversation then head to the washroom is a challenge. I know that when I walk back, they will subtly check to see if I made it in time… My new reality. LOL


Cold Lake? Are you ever in Edmonton? If so, we should get together… I know all the best restaurants.

10 months ago


Ya cold lake and I go to Edmonton when I have my doctor appointments at the Kaye clinic. Since I can’t drive due to no sensations in my feet and I also need to find a ride there. But ya that be great for sure share stories and experience!

10 months ago


Friendship request sent. I will share my telephone number off the record. Let’s get together…

10 months ago

hi @soprano

My heart goes out to you…

But first off – you ARE somebody, and always will be… nothing, I repeat nothing will ever change that… least not bureaucracy….

I can’t imagine what its like, what your describing, but we the collective are here to support you… just a personal thing I guess, but when like all of us, we get really down, we have loved ones of course to bounce, those of use that are lucky, and little habits to pick us up, I love listening to music, and I love Kate Bush’s “Don’t give up”…. its only a song I know, but it has great words of inspiration…. and the last paragraph nicely describes what you have here with all of us…

Don’t give up, because you have friends
Don’t give up, you’re not the only one
Don’t give up, no reason to be ashamed
Don’t give up, you still have us
Don’t give up now, we’re proud of who you are
Don’t give up, you know it’s never been easy
Don’t give up, because I believe there’s a place
There’s a place where we belong

reach out more to us all if you want support…

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