by The Chronic Chronicles | 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 thing crossed those off the list, and mostly left huge van-like cars and seven seaters, and when I was looking they all seemed to come in dull colours. I’m going to be honest and say I didn’t want to be driving such a big car, particularly a big box of a van, or a seven seater. And yeah, maybe I’m being picky, but I am in my 20s without six children, and I’d feel silly driving such a big car.
So, I went out searching for a car that fit what I needed, and with a tiny, tiny dash of what I wanted (as small as possible while still fitting the chair). I went to 17 dealerships in my town and, measured a lot of boots. Funnily enough I ended up back at the Ford dealership – looking at the Ford C-Max which is actually based on the Ford Focus, but is taller. It had other benefits as well, it was generally higher – which really helped with getting in and out of it. It has keyless entry, which to me is such a lifesaver. I often have wrist flare ups which makes it difficult to turn a key, but also when you’ve put your wheelchair away, and are using sticks to get in the car, it saves valuable time of searching through your bag looking for the keys, when every additional second on your feet is incredibly painful. Similarly when I reach the car, I’m drained and again it’s so handy to just worry about getting in, than trying to unlock everything.
Motability also offer a means-tested grant scheme. Usually if you pick a bigger car, it has a larger advance payment – and they expect you to cover it, as you chose it. However the reason I needed a bigger car was for documented disability-related reasons, so I was eligible for the grant.
Having the car allows me to leave my home on good days. I’m not always driving, in fact the vast majority of the time someone else drives me, but my wheelchair can’t be lifted without a pretty heavy-duty hoist, so isn’t possible to go into another car. I also can’t use a bus (for lots of different reasons too numerous to mention), and the wheelchair accessible taxis are few and far between, charge a lot more (despite being illegal), need booking days in advance and often don’t turn up and so leave you stranded.
I see my car as an extension of my mobility aid. It’s a place I store things helpful to my condition; it has seats I can cover in cushions and blankets so I can sleep on the journey and have less pain; it has a seat I can recline back so pressure is taken off my spine; it has additional medications hidden away just in case and if I’m out for a longer day, it’s a place I can return to in order to rest/sleep to help me get through it.
Without my car I’d be trapped at home, so the thought of losing my Mobility Element when I transfer to PIP is a constant worry. Now, you might think those who are genuine have nothing to fear – but this, sadly, is not the case. Look at all the regular articles in the press about people who have been told they’re perfectly healthy and had their benefits removed, and yet just looking at the conditions or health issues they have shown they’re obviously entitled to the benefit. The high rate of appeals that overturn the decision made by the Department of Work and Pension’s also show things are regularly going wrong.
However, the real fear is that the government have declared their intentions. We know that the fraud and error rate of Disability Living Allowance is just 0.5%, and yet the government have declared that 42% of working-age people will no longer be eligible for the Motability scheme under the new system. They are therefore admitting in perfectly plain language that they are targeting legitimate claimants, and removing them from the scheme. Of course some of the rules have also changed, particularly of concern is the distance someone can walk. Under DLA it was 50m, but it has now reduced to 20m. This will have a huge impact on people with painful conditions that may simply vary depending on the day. 20m is not far at all – it’s often less than the walk into a shop, or from a parking spot to someone’s front door. This will of course mean many people will no longer be able to work, or go to their local hospital or GP, let alone do normal day-to-day activities like shopping or visiting a friend.
I know so many people like me are living with this fear that I wanted to look at some of the possible alternatives and solutions if someone does not receive the new PIP Enhanced Mobility. These suggestions won’t suit everyone, but may provide a little bit of comfort that there is some help available at least.
First of all if you do find yourself in a position of no longer being assessed as eligible to receive PIP and you have a Motability car, you will continue to receive your DLA payments for four weeks, and you will also be able to retain your vehicle for another three weeks from the date of payments stop – so this gives you around two months to try and find an alternative. You will also be given the option of purchasing your vehicle, and can use these three weeks of payments towards the cost of this.
The government has also announced a payment will be made to people in this position to help with sourcing alternative transportation. For those of us that joined the scheme before January 2013, and therefore were unaware of the impending risk of PIP, will receive £2000. For those who joined after this time will receive £1000.
For customers with wheelchair accessible vehicles (WAVs) Motability may be able to help the customer keep their current vehicle depending on their circumstances, and for those with adapted cars they will pay for the adaptations to be made to a non-scheme vehicle.
It’s well worth knowing this information, as in my experience with similar promises, it may only be offered if you ask for it.
Another option is to privately purchase or lease a car from an independent organisation such as Allied Mobility. They offer both a lease option, and sell adapted cars and WAVs that were previously on the Motability scheme. A company like this will be used to dealing with disabled customers, to may be able to offer more assistance with the transfer between cars.
So there is a little bit of help out there, and some alternatives. I’m not saying it’s going to be easy, and I hope that anyone reading this will not be impacted by the changes, or can find an alternative that meets your needs.
Do you have any suggestions you’d like to add? Please comment below.
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by The Chronic Chronicles | 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 to say myself, I wanted to let other people with the condition have a say as well.
So I went on to a Facebook group that has over 5000 people with the condition on and asked them what they would like to say to physiotherapists if they could. From that, adding in information about our symptoms, our daily lives, the different types and so on, I built up a talk.
The way their training sessions work is that they have an hour built into the day, and all the physiotherapists who don’t have a patient at that time, come along. She expected around 4 to 5 to attend – but when I arrived I was faced with a very small office filled with around 10 physiotherapists. It wasn’t so long ago I would have immediately turned my chair around, found a toilet and locked myself in it until they all went away, but I’m very lucky that over the past few years I’ve been chairing a meeting group and have greatly gained confidence in public speaking – to a certain extent, I’m not saying I’d be happy to give a speech to a large amount of people, let’s not get silly here.
It also helped I was talking about something I was passionate about – the education of front-line medical professionals.
A few of the topics I spoke about included the difference between Ehlers-Danlos Syndrome, Hypermobility Syndrome and Benign Joint Hypermobility Syndrome. A general overview of how many medical professionals and consultants someone with EDS sees before they get a diagnosis, and the fact that it takes 30% of patients over 10 years to receive a diagnosis of EDS and over 20 years to 50% of patients. I also emphasised the fact that 95% of patients remain undiagnosed or misdiagnosed. I also spoke about which conditions are most commonly diagnosed instead of the correct or underlying cause of EDS, and also gave some tips in what not to do when treating or examining someone with the condition. I particularly emphasised that the condition is extremely variable – and that if we can’t come to a session or a few sessions it doesn’t mean we are uninterested, or lazy – just that it’s not what we are able to do at that moment. And it also depends on which areas of our body are a particular problem at the time, one week an exercise might be fine, but the next week dislocate a joint.
I emphasised to them that the way forward is for more frontline professionals to have an understanding of EDS – particularly GPs and physiotherapists who are often the ones patients see first.
No one expects everyone at those two groups to have full knowledge of the condition, when there are so many conditions out there – but it would be brilliant if when presented with a patient with long-term chronic pain, and hypermobility they referred them onto a specialist. Other things that would help patients is long term care, not just the six sessions that are offered on the NHS before being discharged, and the same thing with hydrotherapy, which should be an on-going treatment, particularly as it can be one of the only treatments that is effective for people with EDS.
They seemed interested, engaged with what I was saying, asked questions, and even asked advice on past cases and whether their care was appropriate (whilst maintaining confidentiality of course). One physiotherapist said that in general physiotherapists like regimented care, i.e. they can pick up a file for a patient that says they are currently doing six reps of exercise 1, and 10 of exercise 2, and so on. Any other physiotherapist could then pick up that folder and continue their care if needed. However when he had a previous patient with EDS he found that it was completely impossible to treat him in this way. One week he could do a decent amount, but the next all he could do is lay on a table whilst the physio mobilised his joints for him. Other sessions he couldn’t even make it to the hospital at all. He said that he had to be really flexible with the patient – which emphasised what I was saying.
I also told them about my previous physiotherapy sessions, where I spent the first session explaining how I might not be able to make every session, I was having a lot of flare ups and spending a lot more time in bed unable to do anything and she seemed really understanding. And then it happened, I had to cancel a session and it turned into a few weeks as it was a really bad flare up, and I called to update her and they said just call back when you’re ready, which I did, only to find that she had discharged me.
I was too exhausted to go back to the beginning, so just went without.
Another physio suggested that on occasions like that it would be helpful for the physiotherapist to visit me at home, but of course I’ve never been offered anything like that. Also when talking about ongoing hydrotherapy, which I have been told previously is impossible due to the waiting list – they informed me they do have a few rolling programmes, including one for paediatrics with hypermobility, and another for people with Rheumatoid Arthritis – so it is possible. I’ve now got the name of the manager, and I’m going to contact her and explain how important it is for this to be put into place – particularly when a lot of us are being told that the ‘land based programmes’, as they call them, are inappropriate for us.
Hydrotherapy, for a lot of people with EDS is very good because the water supports the joints, so dislocations are less, the warmth helps with the spasming muscles and we generally find we can do a lot more in the water. Of course this doesn’t apply to everyone, particularly if they have bad POTs alongside, as the heat can cause havoc with feeling faint and dizzy.
In summary I really enjoyed giving this talk, and have been invited back in July.
Patients talking to medical professionals is the way forward t0 them gaining an understanding to the reality of life with a complex condition, without reading a little paragraph in a textbook.
So I commend the physiotherapist that setting this up, and I hope more will do so in the future.
Have you ever has an opportunity to talk to medical staff in this way? What would you have said?
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by The Chronic Chronicles | 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 in time that blanket will become a lovely keepsake for the person that has lost someone and hopefully provides some measure of comfort.
The group also take part in other worthwhile causes such as Angel Hugs for the Brompton Hospital in London where they make white blankets for babies that have passed away; Billie’s Blanket Project to create blankets for children with cancer in low income countries; The Little Hug project which again makes blankets for children and babies who end up in hospital that the family can keep; Angel Teds which are two identical teddy bears, that enable a family to bury one with their baby and keep the other; the Chernobyl Children’s Project for children living closest to the radiation; as well as doing regular fundraisers for charities such as MIND, SANDS or Winston’s Wish.
I found the whole thing so inspiring that I’ve decided to give knitting a try. I have so many things I want to learn and have a whole room full of craft stuff – but I’m hoping knitting won’t take up as much space as jewellery and card making and it can contribute to some really amazing causes.
Even better the Woolly Hugs has been picked as one of Mumsnet’s Giving Week organisations. They have a Just Giving page here and they will match any funds given up to £25,000.
The wool that works well for the blankets costs anywhere between £3.50 – £5.50, plus it costs approx £2.80 to post a ball if it’s been donated. Every penny helps them provide materials to members who can’t afford to supply their own. If you miss the Just Giving Fundraiser, they always accept direct donations.
Woolly Hugs can be found on Facebook and their website is here and here.
Has anything ever inspired you to start a new craft? If you’re a knitter – what are your favourite resources? Any tips for a beginner?
And if you’re inspired to make something for the Woolly Hugs projects, please let me know!
For anyone inspired to start knitting here are some resources I’ve found helpful so far:
How to Tie a Slip Knot
How to Cast On
How to Knit Stitch
by The Chronic Chronicles | 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 way and I’d fall to floor for no reason. My healing was poor and left scars easily. Simple tasks like tying my shoelaces were difficult, I struggled to write for long periods, and my handwriting was awful.
At the age of 15 my pain became constant. I now know this is a very common time to trigger the condition more seriously, but it took almost nine years before a consultant finally stopped shrugging their shoulders at me, and put a name to my condition. For all those years – the years most people are growing up, and having a life – I was getting home from college, or university and collapsing in bed, and spending all my money on alternative therapies to try and get some relief as the doctors couldn’t offer any help.
I have never had a pain-free day for almost twelve years. It’s unrelenting, and even worse is unpredictable. One day I could be limping from my left leg and unable to move my arm, and the next day they’ll be fine but my hip feels like it’s on fire and my neck is locked in place. This is makes it difficult to know what I’ll be able to do that day – and how much help I’ll need.
The condition impacts the auto-immune system and produces too much adrenaline, so I sleep really badly, and have insomnia. The fatigue is crippling, and I often have to spend all day in bed, or unable to function. Often just being able to do a simple task like have a shower, or get dressed is an achievement and all I’ll be able to do that day.
To be able to do something else – like go to a friend’s house, have a meal out or even worse – attend an all-day event is a bit of a nightmare, and involve lots of planning. For days in advance I’d need to rest to conserve my energy, then on the day take every painkiller available, and use every bit of my strength to get through it. Recovery will usually take weeks.
My hypermobile joints are particularly bad in my spine, and so I’ve developed bulging discs, arthritis, degenerative lumbar disease, scoliosis and cysts on my spine due to the over-extension there. As a result my mobility is impacted, and I can only walk with extreme pain, and so use an electric wheelchair.
Why is awareness so important?
The diagnosis rates of the condition are really poor. The average time of diagnosis for sufferers is over ten years, but for many it’s much longer, and some even live their whole lives without knowing what’s wrong with them. Many are also misdiagnosed with other conditions, or told it’s all in their heads. Ehlers-Danlos Syndrome is estimated to affect one in 5000 people in the UK, however according to a recent study, around 95% of cases go undiagnosed or misdiagnosed every year, meaning this figure is in reality much higher.
EDS is treated terribly by the medical community. I wrote a little more about this topic in Rare Disease Day and Ehlers-Danlos Syndrome. In general most doctors spend a few minutes covering the condition in their studies, and so don’t recognise it when they come across patients who are looking for answers. It’s also highly neglected in terms of research, care, NHS services and provision of medical expertise. There are only a couple of specialists in the whole of the UK for the condition, which are usually oversubscribed due to the demand.
There are some quite simple ways of looking out for the condition, so we need to get the word out to front-line medical staff – GPs, nurses, physiotherapists – as well as members of the community, so they can spot the signs as early as possible, and get help for people before they have to live years in pain without understanding why.
In summary:
If you recognise any of the symptoms mentioned above in yourself, your child or someone you know – particularly hypermobile joints, long-term chronic pain and other unexplained symptoms – please seek further medical advice, and request to see a specialist as soon as possible.
The Awareness Ribbon for EDS features a Zebra Print. This is from the phrase taught in medical schools – “When you hear hoofbeats, think horses, not zebras.” This means when presented with a set of symptoms – the most obvious answer is usually a common condition.
EDS adopted the zebra to say – hey, rare conditions exist too!
by The Chronic Chronicles | 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 moved to the south of England. No family members remained in the village. Over the years the cottage they lived in was knocked down, and the garden became open to the public.
My Grandad is now 92, and last week received a phone call from his younger sister to say that she’d just taken a trip to the village, and had looked around the area her brother used to live. She’d found the garden, and Prince’s gravestone still standing.
To her surprise, there were fresh flowers on the grave, and it was well tended. To remember the dog that person must had been around my Grandad’s age.
No one knows who it is – but they obviously had fond memories to still be visiting him around seventy years later. How lovely is that?
Not the grave in question!
by The Chronic Chronicles | 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 a specific fear use a photo to illustrate it.
Who do you think is interested in your article about arachnophobia? It’s probably people with it, hoping to get some tips to make the fear go away. So why an earth would you then go ahead and have a huge unavoidable picture of a spider to illustrate it, meaning anyone with the phobia has just thrown the paper across the room to make it go away.
In the past I’ve had some hypnotherapy to try and get rid of my phobia, but after two sessions I went into the waiting room, and jumped at something black out the corner of my eye, and thought, hm, not so sure this has worked.
I know where my phobia comes from – my mum. Yep, it’s all her fault! She too has the same phobia, but I think mine has surpassed hers, in that she can usually manage to pull herself together to get the vacuum out while I’m still having a meltdown in a room far, far away.
A lot of people conflate dislikes and phobias, for example many people would say they dislike spiders, or other insects. I personally dislike brown envelopes. But a phobia takes it on to another level. I think about spiders every day, am checking for them, getting anxious about them and jumping if something tickles me. Just writing this I’m constantly checking my surroundings, my heart is thumping, my breathing quickening and am on high alert. Having said that my reaction to encountering them can differ – it depends on if I feel I can be ‘saved’ from it. If I’m with someone I know can deal with it, I usually react, and then quickly remove myself from the situation and pull myself together. If I’m alone, it’s particularly big, or I feel trapped by it – we are talking full blown hysteria.
But I also know a lot of people have it much worse – they can develop severe stress and even agoraphobia trying to avoid their phobia completely. Many also avoid therapy believing at some point they will be made to confront their fear directly.
I was talking to a hypnotherapist about it last week, and he was explaining how common it is to ‘inherit’ a phobia. It usually happens at a young age, where you see the parent react to whatever the fear is. At the age it happens they don’t usually have the skills to properly analyse the situation and decide it’s not rational to fear it, they simply trust that their parent is reacting in the correct manner.
So I asked him where my mum may have got her phobia from, as neither of her parents are phobic. He explained that phobias often develop from just one situation – where something has made you jump; an object/animal reacts unexpectedly or you encounter it during an already stressful situation – which heightens the risk of it becoming a phobia.
Now this kind hypnotherapist has offered to give me a free session, and take a different approach to the previous hypnotherapist – and is pretty confident he can reduce my fear. He has told me I may never be the greatest fan of spiders, or even like them – but he should be able to stop the fear.
I’m keeping my fingers crossed, and will let you know how it goes!
Do you have a phobia? What of? Have you managed to get rid of one in the past, and if so – how? What annoying things do people say to you when you tell them what your phobia is?
by The Chronic Chronicles | May 1, 2014 | Awareness, Education
It’s the feeling of being completely invisible.
From the people who step around you in queues, or those who look the other way when you’re doubled over crying in pain in the middle of Next, or the people who don’t look down as they walk, and you’re saying, “Stop!” but they walk into your wheelchair anyway, and exclaim, “Oh, I didn’t see you there!”
It’s sometimes down to ignorance, a feeling of it not being their problem, or the person simply being lost in their own world.
38% of people believe disabled people are a burden on society.
But these attitudes spread quickly, and seep into all parts of life. That mindset becomes casual and mainstream, and people feel they can share their thoughts with friends, in public, or even in the workplace. Take one of my managers who said dyslexic people were just stupid, or another who after someone who had two children with Autism asked for support, received a response of, “You should keep your children under control.” Or after an office-place visit from a group of servicemen who have Post Traumatic Stress Disorder got a comment afterwards stating, “Well, they all looked fine to me.”
It also means that despite the Disability Discrimination Act being introduced 19 years ago, and strengthened in the Equality Act in 2010 – so much of the country remains completely inaccessible. Shops, facilities, services and buildings still haven’t complied with the law, and continue to get away with it.
47% of disabled people currently work compared to 77 % of non-disabled people.
I’m a wheelchair user, along with 1.2 million other people in the UK. Last week I had an appointment at my new doctor’s surgery. Their website proudly states the following on the front page: “We work from a purpose-built surgery with good parking facilities at the front, with wheelchair access.” Yet I was faced with three problems before I even reached the treatment room. The front door was really heavy, and swung back to smack my chair while trying to get in. The receptionist, who had watched this struggle, was behind a high desk which meant I had to call up to her. Luckily I was just telling her I’d arrived, but had I wanted to have a conversation privately, it wouldn’t have been possible. The treatment room is at the end of a long corridor, and just before her room was another door propped open. As I got there, the door suddenly swung closed onto me. I tried to open it and push forward, but the doorframe was so narrow – I couldn’t get through.
More than 1 in 4 disabled people say they frequently do not have choice, or control over their daily lives.
My doctor eventually heard the bangs and came out, and it turned out the door had an automatic opener – which for some reason had suddenly failed. That alone was annoying, but I then had to dismantle my wheelchair part by part, with my GP watching me. I have never had an issue getting my wheelchair through a standard width door before. I then had a very awkward drive into her room, trying to hold everything, control the chair and navigate the packed room.
I was mortified. I thought, ‘She’ll think I’m a bad driver!’
Only later did I think – that was their fault. Why should I now be afraid to go to see my GP as I can’t face it happening again?
This happens time and time again. I can’t get into the vast majority of the shops in the town I live in. Those I can have difficulties – narrow sections, steps, are too packed, put displays in the aisles, don’t have a lift, and so on.
65% of people have admitted they avoid disabled people because they don’t know how to act around them.
Over the past few years it hasn’t been possible to pick up a newspaper without finding a story on the welfare state within. Quite often these stories have focused in on people with disabilities, painting a picture that many are claiming fraudulently. How often do you see headlines such as ‘Disability benefits cheat caught out when she was spotted walking the Great Wall of China’ from The Express, or ‘Benefit cheat who claimed £21,000 in disability benefits while working as a boxing instructor spared jail’ on the Mail Online. Or vague headlines that cast doubt on the system itself, such as another by the Mail Online, ‘ Disabled benefits farce: 94% of new claimants have never been assessed by a doctor.’
180 disability hate crimes are committed every day in this country.
While obviously every case of fraud is one too many, the fraud rates of disability benefits are very low. The scrutiny over benefit claimants has had consequences. It has become quite clear that certain sections of society feel that because some people with disabilities receive a form of state assistance, funded by the taxpayer, they should then get a say over their lives. A judgement, a decision over who exactly fits into the category of ‘disabled’ and who does not, and how they should be living their lives. Also over the last few years the support systems available to people with disabilities have been slashed – within the NHS, Social Services, charitable funding and the benefits available to them. Yet the public outcry to this has been minimal. Perhaps they’re too busy reading stories of the lavish lifestyles of benefits claimants, and mainstream documentaries portraying a vision of exactly what these ‘scroungers’ get up to behind the scenes, which increases support for further cuts.
The reality of the situation is completely different – the vast majority of claimants are genuine, and live in fear of the brown envelope arriving from the Department of Work and Pensions saying their support is being reassessed, causing stress and anxiety it may be lost entirely, or reduced. This fear isn’t unfounded – it’s a stated aim by the government. The money is vital in paying for care, transportation and all the high costs associated with having a disability, of which there are many. The Joseph Rowntree Association has found that people with a disability should be receiving at least £200 more per week just have to have an acceptable quality of life, with the rate increasing significantly depending on their needs and disability.
The poverty rate for disabled adults in the UK is twice that for non-disabled adults.
Disabled people shouldn’t feel dehumanised, excluded and invisible. But how do we stop this trajectory from happening, and make inclusion a priority?
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by The Chronic Chronicles | Apr 29, 2014 | Access, Daily Life
I found learning to drive really difficult. I had lessons over two years, and I don’t even want to begin to work out the cost of that. Neither of my parents had a car, and so my lessons were my only chance to practise.
I found it hard to coordinate everything due to my then undiagnosed Ehlers-Danlos Syndrome, and had awful muscle pain from using them in a different way. I could never have more than an hour lesson as my ankle and foot would go dead, and I found it all very exhausting. In addition, I was also very nervous/anxious, and just thinking about my test caused me to shake like a leaf, which then made me make loads of stupid mistakes.
But my worst mistake was my choice of instructor. I picked a lady who stated she specialised with nervous drivers – but this couldn’t be more wrong. Her style of teaching was to keep quiet while I drove, but then ask me to pull over and ask “Where do you think you went wrong on the roundabout five minutes ago?” When I didn’t know/couldn’t remember she’d get cross. She spent all the lesson pointing out my mistakes, with the atmosphere getting more fraught.
As time went on, I found instead of growing in confidence I became totally convinced I would never pass. It felt too awkward to ‘fire’ her, so I continued with this situation for far too long, ending numerous lessons in tears.
I then went to university, which gave me an opportunity to get a new instructor. He was completely different – calm, more positive and quickly my confidence began to increase. I decided that before I took my test I wanted some more intensive lessons – more than the one a week I was having, but my packed university schedule meant that was impossible. So I spent my Easter break having lessons every day for two weeks, with a test at the end.
I failed.
However, it wasn’t the total disaster I thought it would be. I got a major for hesitation because on the way back to the test centre a bus stopped in the middle of the road. I couldn’t see around it, and being quite a busy road I thought I’d be likely to meet on-coming traffic if I went ahead. We waited about thirty seconds, and then continued – but I apparently should have gone. I think it was a little harsh, but there you go.
My second test was back in my university town. I was a hundred times more terrified. My legs were shaking so hard I kept stalling, and I made silly mistakes. At one point I tried to start the car three times in a row, and it kept stalling. I couldn’t understand why, until I realised I hadn’t put it into gear.
As we pulled up back at the test centre, my instructor who was waiting outside looked over to see how I’d done. I shook my head. I’d been a mess. My test examiner asked what I’d just said to him, and I said I didn’t think I had any chance of passing. She responded, “Well I disagree.” She then handed me the pass certificate.
I can’t even begin to explain how I felt. I know everyone feels joy at passing their test, but I had convinced myself so thoroughly I would never ever pass, and it had taken so long, and being able to drive was completely life changing. I think it does take on an added meaning when you have mobility problems.
At that point my mobility was going downhill rapidly, and I was struggling to get around the university, and also the long trip home on the train (through London on the tube). But overnight my world opened up – I could get to the shops, see friends, and go home whenever I wanted.
That was almost six years ago. I was lucky I took my test before my condition got like it is now – I’d really stuggle with the lessons, but there is lots of help available to help people with disabilities.
Here are some tips I learned in the process to help you pass when you have a disability:
- You need to be comfortable with your driving instructor. Even if they’re nice, or you’re scared of hurting their feelings – it’s your money, your time and it needs to be right.
- Make sure they fit your learning style. I tend to do a lot better when someone tells me what I did right, instead of making me feel bad by making a big deal out of everything that went wrong. Either explain that to them and hope they’ll adjust to your learning style, or move on if they don’t.
- Explain your health issues to them. They can make adjustments – such as trying to make the seat more comfortable, mixing in practical parts of the lesson so you get a break, or pointing the direction they want you go as well as saying right/left if you have any processing issues.
- Your instructor can request you assessor points the direction they wish you to go in your test as well as saying left/right if you have dyslexia or processing issues.
- If you can provide supporting evidence, you can request additional time while taking your Theory Test or Practical. Make sure to explain any physical issues to your examiner so they’re aware if you struggle to turn, or whatever the issue is. You can also ask for a disability specialist assessor, who should have had additional training in this area.
- Make sure you detail all your needs when booking either your practical or your theory. The last thing you want when you’ve just arrived at the centre when you’re so nervous you can’t think straight is to start having to point out things that aren’t accessible to you. And if you’ve already told them, you’ve covered yourself and it isn’t your problem – it’s theirs.
- If you can’t make it to the test centre for your Theory Test (for example it’s not accessible to you) it’s sometimes possible to take your theory test at your home.
- There are specialist instructors/cars out there if you need an adapted car, or someone used to working with people with disabilities. Ask for recommendations, or ask bigger driving schools if they have an adapted car on their fleet.
- If you receive High Rate Mobility Disability Living Allowance or the Mobility Component of Personal Independence Payment you can apply for your provisional driving licence at the age of 16, instead of the normal 17, which is really helpful.
- Motability and other charities sometimes offer assistance towards learning to drive when you have a disability. If you’re working then it’s also worth approaching Access to Work if driving would enable you to remain in work, or make life easier for assistance with lessons.
- If you need help to find the right adapted car for you, places like the Forum of Mobility Centres or the Queen Elizabeth’s Foundation for Disabled People can help.
Remember it may take you longer than someone else, but you will get there in the end.
Also check out this great post by Disabled In Scotland who details adaptations that can be made in the car, and the different route he took to find the right instructor for him. There are also some great tips here for deaf drivers.
Do you have any tips to share that helped you? Did you find it a struggle to pass your test, or was it a breeze?
by The Chronic Chronicles | Apr 2, 2014 | Treatment
I wanted to write about my experiences with acne and the route I took to try Isotretinoin/Accutane, as acne isn’t always something that gets talked about past your teenage years.
I was lucky enough to escape my teens with clear skin. Clearly karma said “screw that” and decided to smack me with it in my mid-twenties. I’m not entirely sure of the cause – but a consultant suggested it was likely due to the morphine messing with my hormones. This seemed very likely due to the placement of mine – the lower cheeks/chin, and the cyclical nature of them. Just as one lot were fading, the next lot would appear.
Acne can really hit your self-confidence. I was so embarrassed I found myself putting layer, after layer of foundation on to try and cover it – which just looked a mess. I tried lots of different foundations/concealers in my quest to tone down the redness, and for a long time wore Estee Lauder Double Wear – but found it slightly too dark for my skin tone. The best I’ve found is Bare Minerals, as you can easily add to areas that need coverage, while leaving the clear areas looking much better.
If you ask most acne sufferers what percentage of spots cover their face, they’ll often say 70-80%. But in most cases, even in pretty bad cases – it’s a far, far lower figure. The spots often group in specific locations, or have a number of bad spots that draw the attention and the rest of the skin tends to be clear, yet the spots are all the acne suffer focuses in on.
After trying various different off-the-shelf treatments, I went to my GP where I then tried every lotion and potion available on the NHS. You tend to begin with Isotrexin gel – which contains vitamin A and an antibiotic, and then go onto something like PanOxyl – in a wash or cream form, which contains benzoyl peroxide.
When these failed I tried asking other people with acne what worked for them. I first tried Living Nature, a range from New Zealand that contains manuka honey, which did nothing. I then spent a fortune on Dermalogica products – which at first perhaps cleared the latest batch slightly quicker than usual, but after awhile didn’t even do that.
Back at the GP she started me on various long-term antibiotics, each of which failed – including the ones that are used when it’s being particularly stubborn.
The problem with all the treatments is you have to try them for months, some of them aren’t deemed to be a failure until over six months have passed. Finally I’d exhausted every treatment a GP can offer – and met the policy of having acne for over two years that has caused scarring, which enabled me to be referred to a Dermatologist Consultant.
I knew there was only one option left – the medication now called Isotretinoin, but originally known as Accutane and then Roaccutane. I’d heard about it before – there had previously been some controversy about it possibly causing depression, and even suicide. I researched this beforehand, and decided the risk seemed minimal. The information I found suggested that people with long-term acne were generally more prone to depression, and it was highly unlikely it was linked to the medication.
However it seemed like my only option left, and said it particularly worked well for women with hormal-related acne, and with one course usually gets rid of it entirely forever. There’s a good overview of the medication here at Fashioninsta.
The consultant explained there were a few things I had to remember:
- I would get dry skin
- Not to get pregnant, as it would cause birth defects
- Not to wax, as it would rip off the skin (nice!)
- To wear sun lotion – as I would burn more easily. (I’m already a person that can burn while indoors!)
- Not to drink alcohol.
He also said he had to warn me of other possible side effects of increased pain and depression, but they almost certainly wouldn’t happen.
I was then given two options – I could have a monthly pregnancy test, or I had to sign a waiver that agreed I would remain on birth control, and if I got pregnant it was my own stupid fault and I knew the risks. I did the latter.
I was also told that the medication could increase cholesterol, so I had to undergo a blood test that checked this along with my kidney function. Both were fine, so I was given the go ahead. My course is for four months – although I hope to speak about extending it, because I’ve heard that once the acne is cleared up, taking it one more month can help reduce the scarring. I don’t know if that’s true or not, though.
The first prescription was for a month, and then after that I have to return to the dermatology nurse every six weeks to check the side effects. I began taking three capsules (60mg) and the first month was fine – just a little bit of dry skin. After a month the dose was increased to 80mg, and the dry skin got quite a bit worse. It started on my lips, and then one day looked down and was surprised to find my arms had very suddenly turned scaly – like when it heals after a bad sun burn! I treated it with moisturiser, and my lips with Vaseline.
The symptoms got a lot worse when I hit the maximum dose of 100mg – a rash covered my arms, and then a few weeks later my legs. It’s red, and looks like tiny blisters. My arms and legs have become very sensitive, and now burns if I put moisturiser on. At one point it began to itch, so I put a antihistamine cream on. Big mistake – it felt like my skin had set itself on fire, but it sneakily took awhile for the feeling to start, so by then I’d coated both arms and legs. Whoops. The skin is also healing slower, there are red marks in places, and larger patches of dryness – particularly after I take my morphine patch off.
The rash on my arm after it had calmed down slightly
But pain also struck – very different to my usual every day chronic pain. This was an extreme stiff feeling in my joints, leaving me to shuffle along. The medication clearly dries out your skin, and it felt like it dried out my joints too! The pain was pretty awful for a couple of weeks, until I gave in and put the dose back down to 80mg. I haven’t gone up since then, and I hope 80mg is enough to do it. It may be people without pre-existing health issues/chronic pain may be fine on the 100mg dose. The pain lessened – although hasn’t gone, but the dry skin/rash, etc still remains. I also upgraded the vaseline to an intensive lip moisturiser – which is constantly reapplied.
I am now ten weeks into the treatment. I’ve heard the biggest changes happen from month three – four. At the moment my skin is looking better – I have two bad areas left, but the whole area has red non-raised spots still, so it doesn’t look clear – but still a lot better than before! I see the nurse next week – so hopefully I’ll find out more about the dosage, and how long I should be on it.
I’m hoping for miracles over the next few weeks from Isotretinoin! Fingers crossed.
Post publishing edit: This was originally posted on the 2nd April. I had my first clear face on the 5th June. There are still some red marks from previous spots, but otherwise it’s clear! I know this might not be the end, but it’s a pretty major thing to have no spots for the first time in years. I still have a few weeks left on the treatment.
Have you experienced acne as an adult? Which treatments worked for you?
by The Chronic Chronicles | Mar 18, 2014 | Awareness, Education
Let’s start with a fundamental truth: having a chronic illness sucks. There’s no denying that.
However, looking at the people I know who live with a variety of long-term conditions, a lot of them have developed certain skills that can help them.
When you have a chronic illness, your body often fails you. You frequently have to stop doing normal everyday tasks, activities and hobbies that you once enjoyed. Your illness can change on a daily basis, or even multiple times within an hour making it very difficult to plan anything in advance.
Resilience is defined as the “ability to spring back into shape and recover quickly from difficulties.” It’s something those of us with chronic illness have to do every day. Any day can bring a new symptom, a flare up or even a new diagnosis. We have to learn to live with that, and deal with our new circumstances, whatever that may be.
We’ve been dealt a certain hand of cards, and we can’t give up or take a break from it – we just have to keep fighting.
Strength is a fundamental facet of chronic illness. The strength to drag ourselves out of bed even when every cell in our body is screaming ‘what the hell are you doing?’ Or strength to put a happy face on when you’re meeting friends, or going to a family function. It takes a lot of strength to keep going, no matter how bad things get.
But there’s also the strength needed to advocate for ourselves – because even if you’re fortunate enough to have supportive family or friends, you know your body best and you will have to fight for what you need, often over and over, and have to be brave enough to ask for help when enough is enough.
Having a health condition means we need to become an expert in lots of different areas. Whether it’s our condition, treatment, benefits/welfare, how to obtain assistance, relevant laws and much more – we have to know it all! We’ve constantly got a new battle on our hands, as it’s rare help gets handed to us on a plate.
And having a rare condition brings added pressure, as we’re often also having to educate our doctors and medical professionals in what exactly our condition is in the first place (while trying not to annoy them!) before we’re even able to get onto treatment and management options.
Knowledge is vital for us to understand our own circumstances, and can also be very empowering.
Having health issues tends to open your eyes a lot more to other people’s struggles in a way you may not have even thought about previously. Compassion for other people comes more readily when you can relate to them due to your own experiences. Empathy is defined as, “The ability to understand and share the feelings of another.”
Chronic illness can cause an amalgamation of issues that aren’t just medically related, and it can make it easier to have an insight when other people experience their own difficulties.
In my own personal experience, I find when I mention I’m having a bad day, or share a fundraiser for a local charity – it’s my friends who have their own health issues who are the first to respond offering support.
Creativity comes in lots of different forms, from the traditional arts and crafts type, to the way you live your life. Through my own conditions I’ve tried to embrace my inner craft goddess, and discovered so many other people with disabilities also take part in similar pursuits. Perhaps because it’s a great way to distract yourself from pain, and also because enabling yourself to create something to be proud of brings a positive element to your life.
But creativity isn’t all glitter and glue – it’s also having to be creative with our own lives. You have to learn to think outside the box, find ways around issues and constantly problem-solve. The ways we used to do something may not now apply to us, such as hopping on a bus to go shopping. We may have to use our imaginations to devise easier and shorter routes, alternatives to carrying heavy items, and keep the trips out short and sweet to manage fatigue and pain. Instead of saying “I can’t do that” it becomes “How can I find a way to do that?”
If you know somone with chronic illness is having a bad day, why don’t you share this with them to give them a boost?
What would you add to this list? Please comment below with some of the skills you’ve gained, or skills that you see your friends/loved ones using.
by The Chronic Chronicles | Feb 28, 2014 | Awareness, Education
There are lots of these special ‘days’ – Talk Like a Pirate Day (19th Sept), Hairstyle Appreciation Day (30th April) and National Sandwich Day (3rd Nov) but a really important day for me is Rare Disease Day, which is today.
A disease is defined as a condition that’s abnormal, and affects the body of a living being.
Here are some facts about rare diseases:
- There are over 6000 rare diseases
- A disease is classed as rare if it impacts fewer than 1 in 2000 people
- 30 million people live with a rare disease in Europe
- 80% of rare conditions have a genetic origin
I have Ehlers-Danlos Syndrome, a genetic connective tissue disorder.
There are various types of the condition and the most common type is estimated to impact anywhere from 1 in 5000 to 1 in 10,000 and the least common types have only been diagnosed with a small handful of people.
Rare diseases are neglected – in research, care, NHS services and provision of medical expertise. There is a lack of understanding and awareness in every part of the medical community. But rare doesn’t mean we don’t matter.
While I had mild symptoms from birth, the real trouble started when I was 15 – and it took me another eight and a half years to be able to put a name to my pain, fatigue and countless other symptoms. I’m lucky – many others don’t get diagnosed at all. That’s why recognition is vitally important.
Many seeking answers are instead labelled incorrectly. The word hypochondriac sneaks into their medical notes. They’re told their attitude is too negative, or point-blank informed it’s all in their heads. People with the condition usually look perfectly healthy, which makes it even easier to get dismissed.
Some people don’t live long enough to have the reassurance of knowing they were completely right, and there was a reason they felt the way they do like in this awful story.
Once I knew what was wrong with me, it changed everything. I was able to look for the national charities, find other sufferers and do copious amounts of research. Everyone should be able to do that – and from as near to birth as possible. Simple changes like strengthening your muscles before they become locked in a cycle of spasms, wearing orthotics to protect flat feet and looking out for the myriad of complications that can arise from the condition can make a big difference.
Awareness for rare conditions isn’t the same as for many other conditions. To me it can be summed up in the conversation that usually goes,
“So what’s wrong with you?”
“Ehlers-Danlos Syndrome.”
And the response is a blank face.
I don’t expect people to know specifics – but if you said to someone you had MS, they’d probably at least gather it’s quite debilitating without having to try to explain further.
While that may not feel so bad – imagine that lack of recognition continues with your GP, your rheumatologist, physiotherapist – the people meant to be supporting your care, as well as everyone else. You have to spell the words out to them carefully, and they promise they’ll look it up – but yet the next time you see them they’re none the wiser, and you know they forgot to pop it into google. We deserve better, and it makes you feel very alone.
When I was diagnosed I spent an hour with the specialist consultant. He was the first person who nodded when I mentioned symptoms, and pointed out a lot I hadn’t even realised were significant. He literally started from when I was born onwards, and put together a pattern that led to my diagnosis.
However, an hour isn’t enough -not when you’ve just been diagnosed with a condition that impacts 95% of your entire body. Every organ, every joint. No one talked me through the heart issues, the gastrointestinal problems, bladder, muscle tone, nervous system, eye sight, breathing issues , and the terrible sleeping problems. No one told me that while you’re given a ‘type’ within the condition – there’s lots of overlap, and it’s mostly just guess work.
To this day I’m still finding new information, and putting facts together – and I usually find that out from other people with the condition, not a medical professional.
So this is what I want from Rare Disease Day…
I want every medical professional to have a brief understanding of the condition, and realise it’s only rare because they aren’t spotting all the undiagnosed people with it. Professor Grahame, a Ehlers-Danlos Syndrome specialist consultant carried out research that suggested “for every one person in England who is diagnosed by a rheumatologist as having hypermobility syndrome, there are probably 19 that aren’t yet diagnosed.” That’s around 85% of cases that are going untreated, being told it’s in their head, or being misdiagnosed. This has to change.
The most common sign of Ehlers-Danlos Syndrome is hypermobile joints – something that should be second nature for GPs/physiotherapists to have a quick look for if someone is presenting with wide-spread pain. I first heard the word hypermobilty from a physiotherapist I was lucky enough to come across. She asked me if I knew I was hypermobile, and I said I didn’t know what she meant. She explained it was also known as being double-jointed, but the only time I’d ever seen people mention that was when people did funny tricks with their hands. My hands looked normal. “Of course you’re hypermobile,” the physiotherapist said to me. “Just look at you, look at your toes, you just are!”
That’s all it takes. One person to have the knowledge. To be able to spot hypermobile joints, to notice the person with pain in every joint that is getting negative results to every test, to the person gesticulating with their hands as they speak, with bruises or injuries they don’t remember getting, that might be a bit clumsy. If you spot just one of those things, just have a think about mentioning Ehlers-Danlos Syndrome and you might change someone’s life.
by The Chronic Chronicles | Feb 10, 2014 | General Posts
Credit to: Michel Meynsbrughen
www.prestonotes.c.la
I belong to some Ehlers-Danlos Syndrome groups on Facebook, and they can be a fantastic resource for information. I wouldn’t know half as much about this complex condition if I didn’t have that connection to others living with it. Today I found out just how powerful groups such as these can be.
It started when a member posted a video of a lady on YouTube called “My Naked Protest.” In the video a lady called Kateryna sits in her chair, naked – and explains that she has been left without care for about a month – and cannot look after herself.
She is now covered in pressure sores and rashes, and doesn’t have any pain medication for her Ehlers-Danlos Syndrome. (She also has brain injuries, Autism and spinal cord injuries.) She has not been able to bathe for a month, and the last caregiver she had washed her clothes in detergent she’s highly allergic to – making her even more ill, which is why she sits there naked. She’s also now having to try and rehome her two cats – one of which is a service animal, as she can’t take care of their medical issues. Making her bed is also impossible, and the sheets are causing her agony without the right pressure relief pads on it.
She explains why she has lipstick on – knowing already that people would judge her for such a thing. She had put it on a few days previously to make herself feel better, but then the carers had failed to show up as promised, so she’d been unable to wash it off.
And so – after being totally abandoned by the care agencies, and after phoning constantly asking for help, and being told over and over that they’ll be there tomorrow – she makes one last desperate attempt to get help. When you have to take your clothes off to get help, something has gone horribly wrong.
The video was published on the 8th January, so she still had a wait – but when the video was posted in an EDS group, a few people jumped into action. Members called to report the problems to Adult Protective Services. Others called the police.
The police visited her – and were appalled by her situation, and made their own report to Adult Protective Services. They brought food for her, food for the cats and toilet paper, and even made her bed. Someone asked a local pizza shop to donate a meal – which they did, along with some large bottles of water. Her medical insurance company saw the video and have arranged for alternative care from tomorrow.
What’s terrifying is that this situation is repeated across the world. So many people with disabilities are hidden away, suffering without carers in place – struggling just to get by.
While this is an awful story – the silver lining was that it was lovely to people pulling together to get help in place so quickly and I hope the next care company don’t let her down again so badly.
Kateryna would like her story to be passed around so others do not suffer as she has. I hope she has a happy ending.
