Jul 14, 2011 | Benefits
I detailed my first experience claiming Disability Allowance in a previous post. The second occasion was a year or so later, now with higher care needs, and needing to use a wheelchair and walking stick. This time I received a response saying I needed a medical within a couple of days of sending off the forms – before they could have even read them. I was told a doctor would come to my house. The doctor seemed fine at first. He asked about my daily life, and what was wrong with me. I had made notes beforehand so I remembered to cover as much as possible. However, he made it pretty obvious he didn’t believe in my condition without actually saying so directly, and snapped at me numerous times when I forgot what I was saying (part of my condition.) His ‘examination’ was dubious. It was literally the following: listening to my chest, poking me twice in the spine, and asking me to walk two steps with my walking stick. I received a letter saying I’d been turned down not long after. I appealed and the process meant they first reconsidered it automatically. I immediately requested the doctor’s report before they reconsidered so I could see what evidence they were basing their decision on, which I felt was fair enough. I was told this process usually took some time, and I’d have enough time to respond to the report and submit new evidence in addition. Instead I was shocked to get a letter shortly afterwards saying they’d turned me down at the reconsideration stage without me seeing the evidence... read more
Jul 14, 2011 | Benefits
This a tough one, and one I’ve been avoiding. Just the words ‘Disability Living Allowance’ makes my stomach turn into a big knot, and a nauseous feeling to pass over me. There is a perception that disabled benefits are easy to get, and that most are fraudulent so I just wanted to talk about my experiences so far. For a start – the basics of Disability Living Allowance (DLA). It’s a benefit for the under 65s (over 65s get Attendance Allowance unless you’re already in receipt of DLA when you turn 65). It has two components to it – mobility, and care. The idea is that they aren’t really meant to worry what’s wrong with you, but how it affects you. So a person can get either one component, or both. The care part is then split into three – low rate, middle rate and high rate. The mobility has just two parts – low rate and high. Low rate mobility is meant to look more at the non-physical side of mobility (bear with me here!). This is usually around someone not being safe to walk without supervision i.e. they have a condition that means they struggle to understand danger, or perhaps they regularly get dizzy and may end up in the road, or may sometimes refuse to walk at all due to a condition such as Autism. The high rate is meant for people that (usually physically) can’t walk at all, or is “virtually unable to walk without severe discomfort, or at risk of endangering your life or causing deterioration in your health by making the effort to walk.” ... read more
Jul 10, 2011 | Daily Life
Last weekend I went to Colchester Zoo for a Sensory Day with some members of Fair Access to Colchester. I tried to get a scooter from Shopmobility for the day – they usually have a Paris Shoprider that easily breaks apart to go in a car, which I’ve taken on holiday numerous times. Sadly, someone had taken it out for sixteen(!) weeks and they only had one. Option two was an electric wheelchair they found in the corner of the storeroom. It hadn’t been used in some time, and didn’t fold up. They charged it up and we went to collect it. We put the seats of the car down, and three people lifted it in with some difficulty. The massive battery underneath made it incredibly heavy and it didn’t disconnect. Uh oh! How were we going to get it out? Luckily my mum, with help from two other people managed to get it out, and we were off. The chair was the size of a normal wheelchair – not those massive things you see, and the battery tucked underneath nicely. It went at a decent speed, and was easy to control. The zoo is incredibly hilly, although they have a yellow line going round that follows the most mobility-friendly path but it was still pretty tough going. It was fantastic. I could choose where I wanted to go. I could keep up with everyone, and no one was exhausted pushing me. Unlike a scooter, I could go right up to things, and manoeuvre myself to see what I wanted. There were a few hairy moments on steep hills where... read more
Jul 9, 2011 | Daily Life
I should have got a mobility aid a lot sooner than I did. I couldn’t possibly have one, I thought – I’m much too young. One day I went out on a family outing and they decided to go for a long walk. Oh no, I thought. I tried desperately to keep up – my lovely mum trying to hold me upright as the pain increased. I was hobbling along, having to sit on every bench going. The car was now long behind, so I was stuck. I think that was the day my grandad saw how bad I was getting, when he, then in his late 80s could easily out walk me. When we got back he took me straight into a shop to buy my first mobility stick. The choice was an old fashioned floral pattern, or copper. I picked the copper one, but it wasn’t really me. The stick made a difference – when I reached my saturation point of pain it helped to lean on, and when I was dizzy (quite often) and clumsy (very often) it helped to keep me on my feet. I then stumbled across a website called Glamsticks where there were rows and rows of beautiful handcrafted sticks. They started from about £20 for a light-weight handpainted one, and went up to about £55 for fully-covered diamante, glitter and more! My first stick I picked was a multicoloured diamante folding walking stick. It was bright, cheerful and didn’t scream disabled. I got stopped constantly to compliment it. But fickle me wanted more! My next stick was my own design (well, with... read more
Jul 8, 2011 | Daily Life
It took me some time to consider using a wheelchair. It didn’t occur to me that I was just as entitled to use those chairs at the front of the shop, as anyone else who needed to. I instead hobbled around, my pain levels ever increasing – until I collapsed back in the car, in agony and exhausted. I decided to give one a go in Asda, when I was with my mum. We whizzed about, and it was amazing! I could spend time looking at what I wanted, with no pain clock ticking over me. I picked which shops I went into based on whether they had a wheelchair available for use. It isn’t always easy using a wheelchair though. For start, if you are unable to push yourself like I am, you have to give all of your independence over to the person pushing you. It’s hard to explain what this is like as a 23 year old that has been making her own decisions for years. They have the power to decide where you go, which way, what you will do. It’s a very difficult thing to get used to and you have to give all your trust over them. It’s also an exhausting job for the person pushing you. It’s one thing in to push the chair in the shop, where there is a shiny flat floor. Outdoors there are hills, pot holes, curbs and people and so I feel an enormous sense of guilt over it. General inaccessibility is another big concern. Many shops, particular older ones, have narrow doors or steps to get... read more
Jul 6, 2011 | Education
This blog post ‘I have sent my child to stay with strangers’ by Scottish Mum gives an excellent account of what it’s like to have a non-neurotypical child. Some respite allowed her a time out from a very exhausting life. Giving her and others like her a regular time out allows families to rest and recuperate, and the ene rgy to deal with day-to-day life. It’s invaluable. It underlines the importance of how you react to a parent dealing with a tantruming child. I remember babysitting my cousin, who had a tantrum in a busy shop as two year olds are wont to do. I particularly remember the embarrassment and the looks people gave me. Imagine the looks a parent of an older child gets, never a thought to why, or how the parent is doing – just judgement. Related articles In search of... read more
Jul 4, 2011 | Daily Life, Opinion, Vents
One thing that really frustrates me is that whenever I try and help myself, I find myself banging my head against a brick wall. Just some examples: If I want a simple referral to a consultant, I seem to have to jump (well, stumble!) though a million hoops first. I have been waiting over 18 months – not even counting the waiting list for Social Services first – for a disabled bay to be put in, and it’s still not done. I was given a wheelchair on the NHS that didn’t fold, so I couldn’t really use it properly as it was such a nightmare to get in and out the car. I have been turned down for Disability Living Allowances twice at Tribunal level, despite lots of medical evidence. (This will be detailed in another post, as I have lots to say about that!) The council ‘band’ people in categories in order to be eligible for housing. I have been put in a crap band that means I’ll never be able to move , even after an appeal twice now, and have called my medical conditions minor. I try my best to work, even though it almost kills me to do so, and it’s the reason why some people don’t think I’m as bad as I am. Okay, just feeling a bit frustrated at the... read more
Jun 8, 2011 | Daily Life, Employment/Work
For me, work is one of the most important areas to be running smoothly in my life. It costs me an enormous amount to work, but not in money – I pay in pain, energy levels, and stress. It means not being able to have trips out. It means if I have a family wedding I need to take not just the day off – but days surrounding it to recover. It means an extremely limited social life. And this means I want the payoff to be worth it. I have had numerous issues in the work place over my disability which are often caused by a simple lack of understanding. Sometimes a lack of understanding of my illness, and sometimes quite simply of the law. My first job was while I was at Sixth Form College, and it was at DFS, a sofa company. The job involved filling out the finance forms for customers after they had purchased a sofa and assisting customers by answering questions about the stock. My back constantly hurt, and standing was the biggest culprit for causing even more pain. I took the job on the understanding that we were able to sit down when we weren’t serving a customer. Unfortunately, the manager had other ideas, and demanded we continually keep walking in circles around the store – even when there wasn’t a customer in sight. I have to describe the act of walking around with pain shooting across my back and down my legs, while surrounded by comfortable sofas, as something akin to torture. I was desperate for customers to come in, so... read more
Jun 4, 2011 | Diagnosis, Hospitals
Most suffers of a chronic illness will tell you how difficult it is to get a diagnosis. The first difficulty is often the doctors, who simply may not know. So many conditions have overlapping symptoms and tests don’t always get to the root cause quickly. Often it takes a doctor that will look at the whole picture, not just run a blood test here and there. I recently heard of a woman whose local doctors wanted to take her thyroid out, believing it to be the cause of her issues. It took a consultant in London who finally ran the correct scans to find out the problem was with her heart, and could be corrected with medication – scans that could have easily been done previously. Other doctors may be unwilling to commit to a name of condition – perhaps through fear of being incorrect, or other reasons. Some think giving a name of a condition is branding the patient with a ‘label’. When you’re so unwell it’s impacting your life, the vast majority of people want to know why. They want a to find out what’s wrong with them so they can research their own condition, or join a support group, or simply so when people ask what is wrong with them, they don’t have to shrug and say ‘your guess is as good as mine’. Woolly symptoms like ‘pain’, ‘fatigue’ (and I’m sure you can name a million of your own) are hard to explain to people, when you’ve cancelling a night out for the fourth time in a row, or taking more sick time from work,... read more
Jun 3, 2011 | General Posts
Living with chronic conditions isn’t easy. I have started this journal to hopefully connect with fellow sufferers, to education people, to let off some steam, and to post things of interest to those of us living with disability. Anyone is welcome and I appreciate... read more
Hi, I'm Jade.
I'm in my early thirties, and live in the UK. I have multiple chronic illnesses with my main condition being Ehlers-Danlos Syndrome. This blog is about finding hope amongst the frustrations.
You can contact me at: info@chronicchronicles.co.uk
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