Appointment with Ehlers-Danlos Syndrome specialist consultant – Dr Hakim

Yesterday I went to London to see Dr Hakim, one of the top specialists in Britain for Ehlers-Danlos Syndrome. I was nervous when I got there – I always am before I see a consultant, due to many, many bad experiences.  However he immediately put me at ease, and was a nice, approachable person. I’d made a list of problems I wanted to talk about, and he made a note of them and went through each in turn giving me ideas and suggestions of particular treatments or medications I could try. He said in terms of exercise I was doing everything right, and everything I could.  This meant a lot, as I’ve had medical professionals be so judgmental with no understanding of how hard it is to do the ‘little’ I do without putting myself in bed for weeks.  I told him what one Pain Consultant had said – that I should be exercising six times a day.  He said it was such an easy thing to say, and proved how little he knows. We spoke about my Physiotherapist Leon Stephens at Sudbury Physiotherapy Centre who specialises in Hypermobility, and has been great, and Dr Hakim knew of him, which was good. At some point this year I need to renew my Employment and Support Allowance, and in the next couple of years my indefinite Disability Living Allowance award will be changed over to the replacement – Personal Independence Payment (PIP).  I’m terrified about both of these, as are most disabled people in the country who currently rely on them – or may need them in the future –... read more

Ten Tips to Cope with Chronic Illness at Christmas

Christmas.  The most wonderful time of the year? I love it, but not everyone does for lots of different reasons.  When you have a chronic illness or disability there can be some roadblocks to your ability to get through the season, like the cold weather ahead, services shutting down, carers taking time off and so on. So I thought I’d put together a little survival guide with some of my tips and ideas of how to get through the festive season, and I would love you to share some of yours in the comments below. 1) Christmas Cards When you have chronic pain, the thought of sitting and writing out a stack of cards can be a daunting prospect.  Some may struggle to see what they’re writing, others may suffer from hand tremors that send their writing all over the place.  If you’re anxious about cards, why not look at other options? E-cards can be a lot easier to create, and are sent by email.  If you’d rather give someone a physical card, you could type out an insert to pop in with each card.  (I find typing a lot easier than writing for a short period of time, and when I can’t I use Dragon Naturally Speaking to control the computer with my voice.) Also have a look into the full range of pens out there.  Some may find a thicker pen easier to hold, or an ergonomic design that slides onto your fingers to stop it shaking and give a better grip may help others.  Then write a couple of cards a day, rather than sitting and doing... read more

Just a little Update

First of all sincere apologies for the lack of updates lately.  It’s been such a busy time, that writing has fallen by the way-side a little. I just thought I’d give you a small update about what I’ve been up to lately. I recently wrote about the process of obtaining a Personal Budget to employ a Personal Assistant.  I’ve had that in place a couple of months now, and it’s been brilliant.  She’s been able to help with a range of things, from the obvious helping with care, but also driving me to appointments, getting my wheelchair out, cooking, sorting out areas I haven’t been well enough to do in my home, etc.  It’s taken quite a bit of stress out of my life and I’d recommend it to anyone. Medically I’m still very much in no-man’s land.  The Pain Clinic have declared me incurable and untreatable, and discharged me.  Apparently they only help people who will get better, they’re not interested in actually managing pain.  My specialist consultants also are no longer able to keep me on their books due to over-subscription, so I’m consultant-less.  It’s quite a scary place to be. My GP has been trying to help with this situation, and wrote to a local Rheumatologist who lists himself as a connective tissue specialist on the hospital website.  He rejected my referral, and wrote back saying, “I have no interest in managing Ehlers-Danlos Syndrome.”  Although he did refer me to a Hypermobility Specialist Physiotherapist instead.  Silly, silly me actually got my hopes up and thought she might be interested in working with me to move forward. ... read more

Seven Questions to Ask About the Cuts to Access to Work

As I’m sure most of you have heard, a couple of weeks ago Lord Freud suggested that some people with disabilities may not be worth the minimum wage, and some could be paid £2 an hour instead for employment.  His off-hand statement has of course garnered a backlash including calls for his resignation and a petition asking for him to be fired. Lord Freud has since apologised, releasing a statement stating that he has been “proud to have played a full part in a government that is fully committed to helping disabled people overcome the many barriers they face in finding employment.” However, this statement couldn’t be further from the truth. The government have in fact done the opposite and driven many people with disabilities out of work, by cutting vital support in the form of the Disability Living Allowance to Personal Independence Payment transfer; removing Independent Living Fund, cutting funds to councils for Direct Payments and reducing what support Access to Work will fund.  These cuts tell a different story, and leave many people with disabilities having to reduce their hours, change the type of work they can do or leave employment entirely. Working with a disability can often be very difficult, both in terms of securing employment, the on-going difficulties some face with juggling their health and work, as well as employers and colleagues attitudes. What is Access to Work? Access to Work is a scheme set up a number of years ago with the aim of helping people with disabilities attain and remain in work.  It’s worth around £80m a year, and can be used to pay for a range of equipment, adaptations and assistance. However... read more

The Confusing World of Personal Budgets – Part Four

This is part four of my series on Personal (care) Budgets.  Parts one, two and three can be found here and it’s best to read those first! What happens when I get the funds? You can hold the funds yourself – as long as you can open a separate bank account.  Online banking is great for this, as you can open one within minutes. This does mean you will be responsible for payroll, and checking enough is left to cover holidays for your Personal Assistant, although there are DVD-ROMS that can help with this. You will need to keep receipts for anything agreed, and show your Social Worker when they request them. The other route is using a Payroll service.  Often this is run by a charity or organisation linked to Social Services, and they’ll look after your funds, and pay your Personal Assistant. You will still be responsible for the budget, and have to make sure you are requesting the right money, as any overpayments will be down to you. However they will provide the payslips, and make sure your PA gets paid, so it’s easier, and they can answer questions too. My Support Plan has been agreed, now what? If it’s agreed you can hire a Personal Assistant, there is usually another organisation that will step in at this point to help you with this.  I found this very helpful, although I still did much of it myself. Here were the next steps I took: Wrote a Job Description Advertised the Job Decided how many applicants I wanted to interview and contacted them Held the interviews Informed... read more

The Confusing World of Personal Budgets – Part Three

This is a series on Personal Budgets, accessed through Social Services.  Please read parts one and two here first. The creation of your support plan and who can help This should be the first stage where another organisation will get involved. You are perfectly entitled to write your support plan by yourself, but in each area there is usually another organisation or charity that will help you. They should help you through every step of this process, but some are better than others. Before I started this process I was warned that they will often want you to be an “easy” client i.e. write a Support Plan that goes along with what the Social Worker has agreed, submit it and they get paid.  Unfortunately I was not one of those easy clients, because I didn’t just want to go along with just the PA hours, but make a case for some massage treatment.  I’d been using my savings to pay for them, which were drying up, and they’re pretty much all that keeps me going. As soon as I mentioned this, my ‘support’ dried up pretty quickly.  I was told a few times it wasn’t possible, then I didn’t hear from her again – even when I submitted my final Support Plan I wrote myself for her thoughts. So it took me weeks to put my plan together, when with some help it could have been much quicker. However, this will be down to who you get, and I’m sure some organisations have the best interest of the client in mind.  if your Social Worker is backing you anyway,... read more

The Confusing World of Personal Budgets – Part Two

This is the second part of my series on Personal Budgets.  Please start with part one here.How does the assessment work? When you eventually get assigned a social worker they will visit you to carry out an assessment. Don’t worry too much about this, it’s much more informal and relaxed than a benefits assessment, or something like that. They should be trying to meet your needs as best they can, and you have every right to have a say in this, and correct anything they get wrong. The assessment isn’t usually a very specific question and answer session, but more of a chat that then gets converted to the information they need.  However, if you’ve already thought carefully beforehand about the areas you’d like help with, you could write it up and give it to them, or simply make notes of specific points to say.  It’s really up to you, and your social worker should find a way that makes you feel comfortable. After this visit, the Social Worker will go and input all the information into their system. This is called the resource allocation system (RAS). A lot of people think you’d ask for you what you need first, and this information would get converted into an amount, but this isn’t how it’s done.  It’s based on your circumstances and the level of help you require. In some ways it’s a bit like a hidden points system, as the higher you score, the larger your budget becomes. The way the review is set up is quite onerous, as not everyone’s situation always fits into the exact questions that... read more

The Confusing World of Personal Budgets – Part One

About a week ago I finally had my Personal Budget sent from my county council to my elected payroll service.  It was a long, stressful road – mostly because I had no idea what I was doing, and couldn’t wrap my head around the lack of transparency in the system. I’m not an expert, but I wanted to share what I learned on the way, and to encourage more people to apply for a budget.  Once it’s in place, it could really make a difference to your life. This will cover the basics of getting a budget.  Next week I will move onto how to find a Personal Assistant, and the basics of becoming an employer. How do I get the help I need? A few years ago the new buzzword became ‘Personalisation’ in social care.  The idea is that people with a disability should be put in control of any help they are assessed as needing by Social Services.  For example if someone is assessed as needing care, Social Services could link that person up to an agency.  They won’t know who is coming each day, and their visits may be fitted in around other clients – rather than when is right for them.  Instead a budget would allow the person to be given the ability to employ someone directly, therefore having chosen and vetted the person caring for them, and that person then working to their specific routine.  The budget then gives choice and control to the person needing care. The idea behind it is very simple, although getting it all in place can be a little more... read more

Fabulous Blogging Blog Critiques

Fabulous Blogging is a Google+ community run by Julie DeNeen, of the website also titled Fabulous Blogging, which gives tips and assistance to bloggers and website owners.  The Google+ community is separate from the website, and is aimed at bloggers helping each other, and sharing resources. The community used to host Blog Critiques, but a lack of time meant Julie was unable to keep doing it, so I recently took over. Bloggers put themselves forward, and every Wednesday a new blog is put forward for critiques for one week. The more people that take part, the better it will be – as a range of opinions from different people make for richer feedback. If you’d like to take part, please email me at Here are three buttons to put on your blog to promote the critiques, but also to remind you to visit us each week to take part!  Please link them here:  The new critique will be pinned to the top of the community each weel/  ... read more

A Trip to Suffolk

I’ve just got back from a couple of nights away at a lovely cottage in Mildenhall, Suffolk nearby Thetford, called The Walnuts. Over the last few years, the distance I can drive, even as a passenger has reduced (see the post Cars Vs Sleeping). It’s usually about an hour as the maximum. However, I also find that it’s very rare for me to be in a car for longer than five minutes, without falling asleep! I don’t usually go away for long, as my cats get stressed in the cattery, so if I do get a chance to go away, it’s as close to home as possible. It’s a shame as I’ve love to see more of the country, but there are some beautiful places nearby so I’m lucky. One way I’ve found to slightly increase the distance I can travel is to recline the seat right back, and cover it in pillows. I’m usually asleep before we get on the motorway, and only wake up when we arrive! It helps reduce the pressure on my spine, so I’m not such a mess when I get there. The Walnuts had a Groupon offer, which I sadly just missed, but when I phoned to book the owner was kind enough to honour it. The deal included a BBQ pack, but there are other options if this doesn’t appeal to you. In terms of accessibility, there are a number of cottages on site, and all except one have the bedroom/s upstairs. The one that didn’t is called ‘Inglenooks’ and has everything downstairs, so that’s the one I stayed in. One of the... read more

About Me

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:

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