As you are all well aware, I have been unable to work for most of my life and have had to survive on state benefits. Before my Complex Regional Pain Syndrome started I had already been fighting with benefits to try and get DLA so I could have a car, as because at the time my ‘diagnosis’ of fibromyalgia was causing immense pain on walking and I was really struggling but as always, the assessor lied and so started the 6 year fight of getting the car I believed I was entitled to. I did get awarded the higher daily living component as at that time my husband was still alive and was classed as my carer, but he worked nights and one night I went to bed with my dinner still cooking in the oven, because I forgot that I hadn’t eaten and put the oven on! 😱 After this I was told I was not supposed to cook unsupervised 😳 I also needed help with bathing and dressing, this was after the meningitis, when I was in pain, very immobile and so fat I was getting close to being unable to reach to wipe my own bottom! 😳🫣
(Me at nearly 18st just after a gym session)
The fight for me to get full PIP/DLA started in about 2012/13, when I found a charity that helped you all the way through from filling in the forms initially, right through to coming with you to the tribunal. They charged a % of any lump sum payment made to you if you win. We filled out the forms together for the first time at this point I had a diagnosis of fibromyalgia, depression and severe anxiety. I was using crutches to get about but found it very painful due to having frozen shoulder most of the time. Walking was extremely painful and slow and although the rules stated that walking in pain was not to an acceptable standard, I was still turned down for the car.
Eventually it was passed up to tribunal stage, by then I had already developed CRPS and my pain had finally left me pretty much wheelchair and house bound. The day of the tribunal I was a gibbering wreak as my anxiety back then caused uncontrollable shaking. My boyfriend had recently left me and my parents were out of the country, so I had to rely on my sister, who I hadn’t seen in years, to come from Leeds to Hull to take me to the tribunal at court. I had spent years waiting for this moment and I was terrified that they were also going to side with benefits 🥹 but luckily they ARE totally independent and after discussing my situation with me and my sister, they immediately awarded me the full amount of PIP/DLA I was entitled to in order to qualify for the car and I got awarded back pay for all the years I had been struggling with hardly any money! After years of surviving on nowhere near enough money and a total lack of access to transportation that didn’t cause severe social anxiety, finally being told I was entitled to all the benefits and most importantly the car I had been fighting for what felt like the majority of my adult life I had finally won! It was a long hard and stressful process, but in the end it really paid off! Not only did I get the years of back pay that was owed to me, but it also meant I could start the application for my car and my freedom! 
(My first Motability car in April 2019)
My advice to anyone else going through the benefits system, as hard and stressful as it is at the time, please don’t give up! Having the car has made all the difference to me as you will read in the next chapter of my blog.
Up next: A new lease of life!