Aug 15, 2014 | General Posts
Today Rena McDaniel and I have swapped blogs! Read her post on Felty’s Syndrome here at The Chronic Chronicles: ‘What in the world is Felty’s Syndrome?‘ Read my post on her blog The Diary of an Alzheimer’s Caregiver: ‘How my life has changed since having Ehlers-Danlos Syndrome’ ... read more
Aug 15, 2014 | Awareness
Hi my name is Rena McDaniel and I write two blogs: The Diary of an Alzheimer’s Caregiver, where I deal with being a caregiver while dealing with my own diagnosis of Felty’s Syndrome. The other is The Million Mile Blog, it is a travel planning, review and tips blog. I live in South Carolina with my husband of 23 years and my mother. I have two children and two grandchildren (with #3 and 4 coming in December when my daughter has twins!). Thanks so much to Jade for hosting me today. Felty’s syndrome is a complication of patients who have rheumatoid arthritis. It is diagnosed by the presence of three things: rheumatoid arthritis, an enlarged spleen and an abnormally low white blood cell count. Patients with Felty’s syndrome can have more infections than the average person and can develop leg ulcers. Felty’s syndrome is uncommon. It affects less than 1% of people with rheumatoid arthritis. I was diagnosed three years ago with Rheumatoid arthritis. I was sick for a long time before this diagnosis. At the time I was being treated for a car accident that I had in 2009. At first I was just sore all over, especially my left arm and neck. I was first diagnosed with a strain. After I went back to work I began to have more problems. One day my feet would be sore and swollen and I would secretly take off my shoes to work. The next day my hand would be swollen or it might be my shoulders. I was then diagnosed with Fibromyalgia. I tried physical therapy, acupuncture, medicines etc. Nothing... read more
Aug 13, 2014 | Access
A Wheelchair Hoist with a Difference This amazing hoist is perfect for full-time wheelchair users, but also part-time users who find it difficult to stand at the back of the car to operate the hoist (which can be pretty slow). The only problem is the huge weight difference between a manual chair and an electric. I would imagine a hoist like this would struggle with an electric chair, but hopefully this will be the future. It would also allow smaller cars to be used, when people don’t want to drive vans in order to transport their chair. A Hidden Lift How many times do you find the ramp or lift into a building is tucked around the back of a building? Or it’s resented for spoiling the aesthetics of a building? Think of all the historical locations that have no access at all. This is the perfect solution – the look of the building can be kept and the ramp can be located in the most convenient location. It looks like in this video a second person is needed to operate it, so as long as that could be resolved, this is ideal. Converting a Manual Chair into a Scooter These have been around for awhile, but it’s nice seeing a video of one, and how easy it is to use. A lot of people use manual chairs, but may struggle on longer distances, rougher terrains or hills. This looks like it could be kept in the back of the car to be used when needed, and looks really fun too! [jetpack_subscription_form] Which is your favourite innovative accessibility solution?... read more
Aug 4, 2014 | General Posts
I thought it would be fun to do something a little different, and picked a random ‘getting to know me’ questionnaire. 1) Do you have a middle name? Yes. 2) What was your favourite subject in school? English, History and then later Politics, which I then did a degree in. 3) What’s your favourite drink? Diet Doctor Pepper, but I’m trying to give it up. I’m allergic to most squashes/juices, and don’t drink hot drinks. I’m trying to just drink water, but it’s difficult. I’m doing quite well on my water-quest at the moment, but haven’t made the full leap. I rely on the caffeine to wake me up. 4) Favourite song at the moment? I like Troye Sivan’s new song Happy Little Pill. 5) Summer or winter? Summer all the way. I struggle in the heat, but it’s nothing compared to the pain of winter, and I despise snow. Don’t get me wrong, the morning it snows and everything is clean and white is beautiful, but then it represents being trapped from going out, as I had a nasty fall once, and now I’m a total wimp about it, even in my wheelchair. Plus the sun always improves my mood, and makes everything seem brighter. 6) Do you participate in any sports? No. I am looking forward to swimming as soon as I have a PA employed. 7) Favourite Book? I really like The Name of the Wind/The Wise Man’s Fear by Patrick Rothfuss, and I can’t wait for the final book in the trilogy to be released. 8) Favourite Colour? Raspberry pink. 9) Favourite perfume? Anna Sui –... read more
Jul 1, 2014 | Benefits
One of the greatest fears currently facing people on Disability Living Allowance (DLA) is when they will be reassessed for Personal Independence Payments (PIP), and whether they will still be deemed eligible for the benefit. The current timescales for reassessment is that anyone receiving DLA whose claim is coming up for renewal will be reassessed at that time, and those who have previously received an indefinite DLA award will start to be reassessed from October 2015. Many people who have the High Rate Mobility element of DLA will have swapped their benefit payment to receive a car on the Motabilty scheme instead. The whole point of the Motability Scheme was that it was recognised that the cost of buying a decent and reliable car that met the needs of the disabled person was going to be prohibitive in cost. My first Motability car was a Ford Focus, but not long after I’d had it I was assessed as needing a new electric wheelchair, and unfortunately no matter which chair I’d gone for, it wasn’t going to fit into the car. So Motability allowed me to change my car earlier than the normal three year lease. The most important feature I was looking for in a new car was a high boot to accommodate the height of the hoist to get the wheelchair in and out, and also have room for the chair itself. In an ideal world I would have been looking for a small car – such as a Ford Fiesta (I do really like Fords, but any car around that size) in a bright blue, but the large boot... read more
Jun 24, 2014 | Diagnosis, Education, Treatment
My mum is currently having physiotherapy after an operation on her shoulder. She got chatting to her physiotherapist, and my condition came up – Ehlers-Danlos Syndrome. It turned out that the physiotherapist has a great interest in the condition, has a few patients with it, and leads the in-house training to the other physiotherapists. She invited me to come along to give a talk to them during that session. So that’s how I ended up pretty much taking over the whole training session myself. The idea originally was that the physiotherapist would cover the medical and exercise aspects, and I would cover the daily living aspects – but my notes grew longer and longer. This was my chance to help make things better for people with the condition, and there was so much to say! When you speak to someone with EDS, or other complex chronic conditions you’ll often find that they have had a bad history with a physiotherapist at least once in their past, and sometimes repeatedly. (Here are just two posts talking about previous experiences here and here.) But sometimes it’s not their fault – we are well aware they have to see a lot of people in not a lot of time, and are generally encouraged to discharge as soon as possible. Many report being asked to pick one joint that is the worst, being handed a couple of exercise sheets and that being the extent of their treatment. Others, including myself, saw physiotherapists for years without them ever mentioning the hypermobility – that could have led me to that crucial diagnosis. While I had a lot I want... read more
Jun 9, 2014 | General Posts, Hobbies
A few days ago I stumbled across a thread on Mumsnet written by a lady who had suddenly lost her three-year-old daughter very recently. She detailed her heart-wrenching grief and the weeks following since it happened. Her agony was palpable through the screen and it made me want to do something for her – anything. I then saw that someone mentioned a Woolly Hug was being made for her, and so I dug further to find out what it was. It turned out to be that a community of crafters have got together to make blankets for people who have been bereaved – usually having lost a child or a partner. First the person is asked whether they wish to receive one, and if they agree a list of specific colours, hobbies and interests are listed and each person knits or crochets a 6 inch square. People with all different abilities take part, from complete beginners to those that have been doing it for years. Plain squares are just as wanted as someone who has painstakingly created a beautiful image of something from the theme. For those who want to help but aren’t crafty, there is also a way to donate either money or wool to those that can. The project is amazingly well coordinated by a few people who also receive all the squares and out of them create a beautiful blanket. I believe the blankets are a perfect expression for those who have that same feeling of wanting to do something to help. You can’t take their pain away, but you can show you care. And then... read more
May 31, 2014 | Awareness
What is Ehlers-Danlos Syndrome? Ehlers-Danlos Syndrome is a connective tissue disease, caused by faulty collagen. Collagen is the ‘glue’ of your body and is part of your skin, organs, ligaments, tendons and much more. The condition is multi-systemic, which means it impacts almost all of the body in some way, including the heart, lungs, auto-immune system, gastrointestinal tract, eyes and in lots of different ways that are too numerous to mention. There are different types of the condition, which range from highly disabling, to some types which are even fatal. The most common type of Ehlers-Danlos Syndrome is Hypermobility type. This is because the most prominent sign is the Hypermobile joints – colloquially known as being ‘double-jointed’. This can occur in any joint, and means the ligaments and tendons aren’t holding the joints in place as they should, and allows the joints to over-extend. This causes damage in the connective tissues surrounding the joints. Joints can also dislocate, or semi-dislocate (subluxate) which is very painful. As the connective tissue isn’t doing its job, the muscles take over. This means they’re usually tight and in spasm, and overwork which causes additional fatigue. The condition is genetic and two-thirds of sufferers inherit it from one of their parents. One third get it through a genetic mutation. How does it impact me on a day-to-day basis? While I was born with it, the symptoms throughout childhood seemed random, so no one ever realised there was an underlying condition. I had lots of bouts of pain throughout my childhood that doctors dismissed as growing pains, and often my legs or ankles would give... read more
May 20, 2014 | General Posts
When my Grandad was young, he went to live with his Aunty Sue and Uncle John, and they had a dog called Prince. They lived in a small village near Manchester, and everyone knew Prince. Every morning the dog would walk Uncle John to the train station, then head to the centre of the village where there was a bus stop next to fields. Prince would spend an hour wandering and sniffing about this field, until on the hour, every hour he would head back to the bus stop and sit and greet everyone getting off the bus. At the end of the day he’d head to the train station to meet Uncle John after his day at work and again greet everyone getting off the train. So everyone knew Prince. They spent a lot of time training Prince with food. You could put some meat down and say, “Wait” and he would until he got the command to go ahead. One day they were about to go into church and Uncle John put some meat down. “Wait,” he told him. He was suddenly called away, and afterwards headed into the church service. It wasn’t until two hours later when they were heading out the church the family spotted Prince still sitting next to his treat, waiting. My Grandad’s sister rushed over to him to give him the command to eat, and put him out of his misery! When Prince died they buried him in their garden and put up a stone with his name and surname on. Later, they moved away from that village – and my Grandad... read more
May 14, 2014 | General Posts
Do you have a phobia? I do, along with 13% of the population. My phobia is that boring, common one – spiders. Even writing the name makes me go uuuugjfhdhdns. (That is a word associated only with my specific fear). And I can’t even say the word for the bigger type without my heart pounding. I often wish I could swap my fear for something else… like a shark! You never come home and be like, crap – there’s a shark in my living room. But of course it could be worse, such as fearing birds, which you can’t avoid. So – here are three really annoying things about phobias: 1) Being told that you’re silly or irrational. I don’t think I’ve ever told someone that I have a fear of spiders without them giving me this gem back: “You know they can’t hurt you.” I’m not sure what I’m expected to say back? “Oh my god. You’re right. You’ve just cured me.” I know the fear isn’t logical, I know they can’t hurt me (in the UK at least.) It doesn’t help. (Also, the follow-up that always seems to be, “They’re more scared of you.”) 2) You’re told a bunch of anecdotes about your object of fear. As soon as I’ve been stupid enough to confess, I always, always get the stories. Like the time they had a particularly awful experience with one, or the last time they had one somewhere horrible and I want to say ‘What part of me telling you I fear them says to you let’s have a bleeding chat about them?!’ 3) Articles about... 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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