Personal Independence Payment, that’s what PIP stands for. I had my PIP assessment done on the 27th. It replaced Disability Living Allowance a few years ago and as my pain and mobility has been seriously affected this year I have applied for this state benefit. In all honesty I would rather not apply for benefits. I like to be independent, you know? But, I have also lost £150 per week in income when I stopped working full time hours, and that is not an easy adjustment.
So, a few months ago I filled in the form to apply for it. Just filling in the form was distressing; listing all the things MrH has to help me with. As hard as that was though, attending the medical assessment and having to “say” all these things out loud was even worse. So much worse.
My appointment was at 9am, and we were a few minutes late because we went to the wrong place first. I thought I knew where we were going; I was wrong. Anyway, we arrived, booked in. By this time it was five minutes past. My Assessor came out and introduced herself, and went to review my file. At half past she returned and MrH wheeled me though to the room. My pain from sitting was already up a level. I should also point out that because of some very bad roads when we had tried to cross a road the wheelchair wheel had got stuck and I was nearly tipped out of the chair. Thankfully I was wearing the lap strap, but I can’t say my back didn’t feel the jolt.
Once in the room the lady began asking me questions about how my condition affects my life, what I can and can’t do, what I need help with. I answered the questions, but I did get emotional. Thankfully MrH travels with a handkerchief. I explained my frustration that I need help to wash my hair, and body. I confessed my shame when I wet myself because I can’t get to the loo or I don’t know I need to go. And, all this time my pain increased, and my legs went numb.
We were at the PIP Assessment Centre for an hour and a half. MrH drove us home, and I was drained, exhausted.
We knew there would be some fall out. We anticipated discomfort. But, yesterday I was in so much pain I called the NHS helpline. It is an advice line and it points you to the correct service, be that an out of hours GP, a walk in centre or A&E. I use them when my Drs surgery is closed because my chronic pain problem is not an Emergency per se. It is not fun but it’s not a heart attack / stroke / serious accident. You know?? They sent an ambulance.
My legs were asleep. They did not feel right. I couldn’t walk properly. The paramedics arrived and did an assessment. They told me that their colleagues were currently waiting in the local A&E to hand over a patient, and they had been there for 4 hours. I did not want to spend 4 + hours on an uncomfortable trolly. They arranged for me to see an out of hours GP who has prescribed Oramorph (oral morphine) and Diazepam (a muscle relaxant) as well as an anti-inflammatory.
We couldn’t get the prescription filled until this morning but now, for the first time in months I am pain free. Pain 0. Of course I am also drowsy and I can’t stay on this forever. At least I can’t and drive. Or work.
I am seeing the spinal orthopedic specialist on the 7th and we are going to strongly request some sort of fix. I want
my our life back.
The thing is, when I am stable and coping. When my pain is managed at a 5/6 you can’t tell from talking to me or seeing me that there is anything wrong. I can cover up the pain for a while. That is what makes us worry that I won’t get the required points from the PIP Assessment for the benefit to be granted. We went to my Work Christmas Party, and my colleague who was sat opposite me said she could see me putting a fake smile on my face, that she could tell I was in pain. I managed 2 hours that night. And here, on my blog, I do write about how my life is affected but it is still hard to fathom. In fact my lovely friend said:
Your blog is really misleading btw. You look so good it makes me think you are ok.
There are so many things that are hidden. So many things we conceal. My mother in law doesn’t know I use a wheelchair because I can’t walk far without pain. Well I should say didn’t know because she does now. But mostly it looks like my life is ok, when in reality it is anything but.
I am, right now, disabled. I can’t walk 5 meters without help or get up or down stairs without help. MrH helps me to get washed and dressed every day. He is my husband, my dominant and caretaker. And, I wish so much he didn’t have to be the latter.