yesterday I phoned up and requested the information regarding PIP after being advised to do so in my monthly tysabri infusion group.
well stress overload. I feel like a criminal! I feel like I’m going to go to prison for benefit fraud!
as far I as see it I’m normal. Pain is normal. My arm not working is normal. Not being able to get up without aid is normal, bladder issues is normal. Needing help with two handed jobs(cutting stuf!) sometimes is normal. Only having vision from one eye is normal. Not being able to roll over is normal. Collapsing if I spend too long in the shower and not being able to have baths anymore due to almost blackouts and getting stuck in baths is normal.
Iv coped with all these things for so many years before I was actually diagnosed I honestly thought a lot of this stuff was normal. I just made up excuses like, I lifted something heavy today, my bath was too hot, I must of been leaning on my arm funny, I have a smaller than average bladder, etc etc
so all afternoon yesterday I felt like a fraud for some reason about applying for pip. I got so worked up about it the fatigue kicked in big time. By bedtime both legs were in full cramp mode and my arm was completely dead. I was going over and over in my head telling myself it’s not normal and why shouldn’t I apply. But then there are worse than me and they deserve it. I desperately want to be normal and am pushing myself to carry on as normal like everyone else but I’m starting to feel it’s taking its toll. I’m worried people think I’m lazy.
anyway, I sat up till 1am in pain trying to chill out and not get so stressed. Then my little Douglas berry came to the rescue, he came and snuggled up on my chest and started to purr. I felt like a huge weight had been lifted. That furry little Ginger Ninja pussy cat is like a little miracle cat and all my worries go away when he comes for a cuddle.
Sorry for that, feel I needed to unload, as much as Douglas helped calm me, I think my sanity would be questioned if I went into conversation about all this with him!
how do you cope with stress?
do you have access to an MS nurse or CAB to help fill in the form, this will help with the stress
trish
I’m not going to be much help about stress because I’m pretty crap at coping myself but I want to talk to you about PIP.
First of all you need to ditch that word “normal” and change it to “healthy”. With every pip task think first how a young fit person would do it and then think about how you do it. It might be quite “normal” for you to feel exhausted after a shower but I doubt that somebody like Mo Farrah (or even the lady next door) needs to take a break after a shower! That is what PIP is all about - the difference in your every day life to a fit and healthy person. It is the absolute pits to concentrate in this way on all the negatives in your life but I’m sorry to say that you have to suck it up and just do it. It’s just a form, it has no bearing on the way you will get on with life but if you don’t tell the assessors about your difficulties how will they know?
Sometimes the people at DWP act as though it’s their own money that they are dolling out - it isn’t, its society’s money and you are entitled to it just the same as anyone else You have to develop a bit of a rhino hide and make getting the benefits you deserve just one more thing that you have to do to live with MS. You sound as though you fight hard to live with your problems so make this just one more thing. Don’t let staff attitudes upset you - they are gate keeper not the king! If you meet the criteria you will get it, if you don’t you won’t, but the only way you meet the criteria is to fill in the form correctly.
I would point you in the direction of a website called Benefits and Work it costs about £20.00 a year to join but will offer lots of help with the PIP application process
Jane
Hi, I find doing Tai-chi really helps with stress also mindfulness meditation, also going for a walk with my dogs and riding my horses, I think you have to find things to make you happy, its really hard but stress for me really make my symptoms worse,what made me happy the other day (I was having a bad day) was a little wren who came and sat on a door within a foot of me and I felt so much better afterwards, I know these things don’t work for everyone.
all the best Sue
Hello,
I completely understand how you must be feeling. After 7 years of MS I managed to convince my hubby to apply for the PIP and also support from access to work for days that he is unable to drive to work.
The initial application is quite a painful process and as everyone says you have to describe your worst day. I found a really helpful booklet from the MS Society which helps give examples for each question and also how the scoring is broken down. Sent application away and didn’t hear anything for about 11 weeks, then got an appointment for the assessment.
We went along to ATOS and again, were absolutely dreading it given all the negative publicity, but the adviser could not have been nicer and really put us at ease. Really just went over the questions and was a chance to expand on how things affect him on a daily basis.
The acceptance came back within a week or so, and PIP was granted no problems.
Access to work contacted my hubby and he was made to feel like a bit of a fraud, but to be fair I’m sure there are many out there that might abuse the system so they are just doing their job I suppose. Once all the questions were answered and we supplied all the evidence, funding was granted.
We might have been very lucky, but just wanted to let you know that it’s not all horror stories!
Good luck xx
1 Like
Thanks people, I think today I just needed a shake and a slap round the face!
It’ll be ages till I hear anything so I need need to try and relax in the meantime x x