Mar 25, 2013 | Daily Life
Eighteen months ago I moved into a bungalow. After years of struggling with the steep stairs, and also having a hard time parking my car anywhere near where I lived – it was amazing. I love the bungalow, the ease of parking outside my front door, the shower, the pretty garden and the privacy. But I do miss something. Really, really miss it. A bath. Despite baths being hard to get in and out of, but the pain relief was worth the effort. I loved nothing more than sinking into a bath filled to the brim with hot water, bubbles and a Lush bath bomb. And a book, that always got slightly soggy. And to ease the pain I’d load it up with Epsom Salts too. To celebrate my mum’s birthday, I booked her a surprise night away I can’t travel far anymore, so it wasn’t very far away. My treat? A bath! Ugh, it was as good as I remembered – a brilliant way to de-stress and relax my... read more
Mar 2, 2013 | Daily Life
In order to get my new wheelchair, I also had to get a new car. In the UK we have a benefit called Disability Living Allowance (well, for now, until the government rip it away.) It’s a brilliant concept, designed to help cover the many extra costs of being disabled. You can still work and claim it, as long as you meet the criteria. There are two elements to it – Care and Mobility. You can get one or the other, or both, and there a different rates within it. If you’re awarded High Rate Mobility, you have three options. You can receive it in cash form, or you can swap it for a car, or a mobility aid (wheelchair or scooter.) If you pick the car option, you go through a charity called Motability, and in swapping the payment you get the car, insurance, breakdown cover, etc. Everything except petrol. There are a range of cars on the scheme, starting from basic where you simply swap the payment, to larger or fancier cars – where you pay an upfront cost beforehand. One issue I have with this is many wheelchair users need a larger car to fit the wheelchair in, or the hoist. It’s not a choice to have a large car for any other reason. I personally, would be happiest with the smallest car possible (other than a Smart Car!) but I had to get a bigger one for practical reasons and that costs a much larger down-payment. But it’s a great scheme and they also offer adaptations. Some are free, such as hand controls. Others you... read more
Feb 6, 2013 | Doctors
The letter from the Pain Clinic arrived today. Remember he’d agreed to say I needed massage treatment? It was the one silver lining of the appointment – so he can’t treat me, but at least I’ll hopefully get some help for massage? HE DIDN’T WRITE IT. Yeah, thanks. Helpful. I then called his secretary, who asked him again about it for me. He came back (through her) to say he wouldn’t write... read more
Feb 3, 2013 | Wheelchair
I had a lot of problems with my wheelchair, as I’ve spoken about before. Luckily for me, my quest for a refund was successful. However, it then left me without a wheelchair for six months. I cannot begin to describe the frustration this has caused – taking away my independence. I haven’t been able to do something as simple as pop to the shop for six whole months. You’d think getting a new wheelchair would be easy, right? Just a case of ringing the NHS and saying ‘Hey, I can’t really walk. Can you order me a chair?’ ‘Yes, no problem, we’ll get right on that.’ No. No, no, no. That’s not how it works. Okay, but social services must be able to get you one, right? Nope. Now, the NHS does have local wheelchair services. They each have different policies. My local one has a policy that if you can walk one step, one tiny, measly little step – you can’t have an electric wheelchair. You can have a manual chair though, even if you physically can’t push it yourself, and don’t have someone strong following you around all day to push it for you. So, to be fair – they did give me a manual chair, that sat dusty in my garage because I can’t push it at all, and my informal carer, my mum, has two frozen shoulders. So then I looked for charities that may be able to help. None of my conditions have a particularly large charity, so that was out. There are a couple of children’s wheelchair charities – that go up to... read more
Feb 1, 2013 | Doctors
The day of seeing the Pain Clinic arrives. I have been researching latest treatments and I find one that seems really promising in terms of pain relief – infusions. I print off the latest studies to take with me. I also take a list of medications/treatments tried and my diagnosis list. My mind usually goes blank when I’m asked, so it’s helpful to have to hand. My heart sinks a little when he asks about treatments I’ve tried – all the standard alternative and normal – physio/hydro etc and then follows up with ah, that’s a shame, you’ve tried everything I was going to suggest. I want someone with flare! Imagination! Pain is unique and different for everyone, and if you can’t handle someone whose tried acupuncture already and found it unhelpful, then I’m going to struggle with that. So I bring him back to my main reason for referral – facet joint injections. My one last remaining hope. But he, sadly, is not hopeful. He explains that normally they’d help (normally, normally – I hate that work. Normally surgery would work, normally treatment would work, but with you…) but because of my condition – my whole spine isn’t being held in place properly. If he injected the main site of pain, it’s highly likely that immediately the sites above and below would become the problem instead, so I’d want injections there, and then immediately the next sites would go… and so on. I then ask about the infusions and he tells me they don’t do them there, and even if they did they wouldn’t be likely to do... read more
Jan 30, 2013 | Diagnosis, Doctors, Hospitals
The next step in my quest for facet joint injections, is my GP. But this time when I tell her what I need, she hesitates. Normally she would send me to the local Pain Clinic, but she’s aware my opinion of the clinic is somewhere around… mud. And that’s being polite. But there must be other pain clinics, right? So she has a look on the system and it shows a few I can pick from. There’s a hospital nearby with a reasonably good reputation, and she agrees to send me there. She tells me she’d be really interested to know how I get on with them, as it would be great to have an alternative to send people to. Translation: she has issues with the local pain clinic too, but can’t say so. I’ve been seeing the pain clinic for some years now, and I have to say the treatments/suggestions they offer haven’t changed a bit. The latest medications, research and techniques don’t seem to reach them, so I’ll be really interested to see what the new clinic has to... read more
Jan 20, 2013 | Daily Life
I can’t drive far, so it means my poor mum has to drive me to hospital appointments, and she HATES driving in central London. She’ll do it, unlike a lot of people, but it’s not fun. It’s already a worry before we leave that we’ll get to the hospital and they’ll be no parking. This has happened loads of times before, and usually results in madness and mayhem. And that’s putting it lightly. Picture this: last hospital appointment at the University College Hospital in London, which has six blue badge spaces. We’d been stuck in traffic and were now 45 minutes late for the appointment and of course all six spaces are taken. So we pull up outside, put the wheelchair together and mum sends me on my way while she goes to hunt for a space. Wheelchair battery promptly dies, so I’m having to use my feet to pull the wheelchair along (Fred Flintstone style) at 0.000000000001 miles per hour. I’m given the wrong directions and head to the other end of the department, before being sent back, and arrive at the nurses station way, way past my appointment time and promptly burst into tears and have a mild panic attack. Luckily, they took pity on me and they let me see the consultant at the end of his surgery time. So parking, and being able to have someone with me? Helpful. Anyway, as a passenger in a car, I have an unfortunate issue of falling asleep. I’m generally close to exhaustion at all times, and there’s something about a car I obviously find soothing, as I can’t... read more
Dec 31, 2012 | Benefits
Imagine this scenario. You’re need a job, but there’s a new system in place – in the form of one single interview. You don’t fill in an application, or apply for a job that looks right, instead you sit in front of someone. They’ve never met you. They don’t have your CV, your history, your qualifications. All they know about you will be gained in the next few minutes and by looking at you. They ask you a list of questions. They seem quite irrelevant – none allow you to explain what skills you have, what your strengths are, or enable you to sell yourself. The interview ends, and there’s so much more you want to say, to explain. At the end they hand you a piece of paper with your job and salary on. You splutter at the unjust nature – how they can decide what you can do without knowing your background, just by looking at you? They have no training in employment, or in your specialist area. Yet they’re deciding your future. That’s exactly what happens when assessing whether a person with a disability can work or not. The assessor is not usually medically trained. If you have a rare or complex condition, they won’t receive any information about it beforehand or speak to a specialist. They do not receive your medical record, any consultants letters, etc. They have set questions to ask they may have no baring on the condition. It does not take into account someone who may be reasonably well one day, and bedbound the next. Or the complexities of your situation, or... read more
Dec 16, 2012 | Coping Methods
A strong emphasis that seems to surround pain management and long-term conditions is acceptance. It took me years to get to a certain level of understanding about what was happening to me. In the early years I spent literally thousands of pounds visiting all kinds of complementary therapists, buying supplements and trying the new fads. I was searching for a cure. This probably lasted until I was diagnosed with a condition that’s incurable and so I had to adjust my thinking from ‘a cure’ to ‘management’ and also empowerment. I had to learn that my pain wasn’t going to vanish as soon as I found the some right type of massage, or the right acupuncturist. I had to try and take control of my own condition by trying to make the world fit my condition as best as possible. I had to say no to things I knew would impact on me, I had to find the right type of work, get the right kind of car, get a stick to help me walk, etc. I still continued the couple of treatments that gave me form of benefit, and stopped the others. However, I still continued to hold on to some kind of hope. This was in the form of a particular issue with my lower back – which out of all the pain I deal with, and all the symptoms – the pain is my back is probably what impacts my life the most. It stops me sitting comfortable, and walking properly, and the pain is constant and severe. I begged for years for an MRI, or just... read more
Dec 15, 2012 | Opinion
Have you ever experienced a scenario where you’ve had a cold, a bad foot, or insert your own recent issue – and someone has said “have you tried taking Vitamin C?” or “have you tried daily stretches?” or “Have you tried being more positive?” or “You should just meditate daily. My aunt did that and her arthritis cleared right up.” It’s often well-meaning or innocuous. Now imagine you have a long-term chronic condition – of any kind. Think of that advice coming from your GP, your physiotherapist, your Occupational Therapist and your support worker. And then your aunt, your colleague, your friend, the waitress in the place you grab a coffee every now and then. And then… you get the picture. And you heard almost every day, “Have you tried yoga?” “Have you tried cutting sugar out of your diet?” “Have you tried this new revolutionary herbal supplement?” Those people still mean well, they want to help. In actual fact it can do just the opposite. It can be exhausting, frustrating, patronising or even rude. Sometimes you just want to vent – say ugh, I really can’t deal with this pain anymore. Often they just need some sympathy or empathy in return – not a suggestion to solve it, as it may simply not be solvable, or they can sort it themselves when they feel able. The vast majority of people with ill-health goes through a long acceptance period. This can involve a vast amount of research, visiting many specialists, trying lots of treatments including many complementary therapies. They get to know their body, what is right for them... 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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