TODAY I HAVE SWITCHED BLOGS WITH MY FRIEND JADE FROM THE CHRONIC CHRONICLES. SHE IS VISITING FROM THE U.K. You can find her story here on my site and you can find my story on her site. I hope you like the traveling and I hope you will show both our sites so love today. Just wanted to say thank you Jade, you are awesome Thank you so much to Rena for hosting me on her blog today. My name is Jade and I have a blog called The Chronic Chronicles. I’m from England (which explains my spelling!) As well as writing about health, disability and chronic pain, I enjoy making jewellery and hanging out with my three cats. The question posed to me for this post was:
How has life changed since having a disability?
First of all, what’s wrong with you? I have a condition called Ehlers-Danlos Syndrome (EDS). It is a genetic connective tissue disorder that causes the collagen in your body to be faulty. Collagen is the ‘glue’ of your body, and when it goes wrong it impacts everything. Every organ, your skin, your joints, ligaments and tendons, as well as having an impact on the systems that make everything work. There are also a huge amount of secondary conditions that come along-side EDS, such as arthritis, Postural Orthostatic Tachycardia Syndrome, degenerative disc disease, and many more. There are different types of the condition, and I have Hypermobility Type, the most common. Many people call particularly flexible joints ‘double-jointed’, but the real term is hypermobility. You can have hypermobile joints with no problem, but sometimes it’s a sign of an underlying connective tissue condition.
So how does that impact you?
When someone has EDS, then their connective tissue isn’t doing the job it’s supposed to do – which is supporting the body, and so our muscles have to step in to do that job, and therefore work much harder than normal. As a result they often become locked in spasm. Even just sitting in a chair takes that much more energy than it would somebody else. Fatigue is also a huge issue, exacerbated by night-waking, insomnia and the sleep disorders that go alongside EDS. The condition is very painful, and the pain is constant. I personally have certain areas that always hurt. And then additional pain that changes each day depending where my latest injuries are, if I’m having a flare-up, or often for no reason that I can pinpoint, which is the most frustrating.
How quickly did that happen?
While Ehlers-Danlos Syndrome is genetic, meaning I was born with it, it was triggered more severely when I was 15, so I do remember what life was like before that. It’s not like I woke up one day to find my life had completely changed, instead it’s been a slow decline. I can chart the changes, for example taking the age of 15 as Year One, I could walk for 10 miles with no issue; Year 2 I found myself looking for a seat to calm my aching back; Year 5 I struggled to walk across my university campus; Year 7 I had to use a manual wheelchair to get around shops; Year 9 I bought my first electric wheelchair and my walking distance was counted in seconds. I can look at similar declines in energy levels, memory issues, injuries and so on. So life has obviously and irrevocably changed, in big complex ways and in tiny little ways I can’t even begin to explain.
Does everyone understand how you feel?
Think about how you feel when you’ve had a bad illness. Your body feels completely run down and achy, you struggle to keep up in a conversation, your head feels woolly, and getting up to get a drink can feel like planning an excursion to the North Pole. So you have to keep reminding people how you feel. But then you feel guilty about bringing it up all the time because you feel bad complaining. You don’t want to have to keep moaning, and you notice that eventually people start judging you.
“If you felt that bad, I would be able to tell.”
How much planning do you have to do?
One thing that got completely thrown out of the window is spontaneity. I can no longer receive a text from a friend inviting me out that day. It’s now all about the planning. Sometimes I might go out for a meal with a friend, or family member. First it’s important to have as much notice as possible so that I can rest up for a couple of days beforehand. Next are questions about the location – is it accessible for the wheelchair? Is there parking nearby? Is the surface completely level, or are there stairs to the seating area? Is there a disabled toilet available? What about the seats – are they padded and supportive, or do I need to take cushions with me? How far away is it, as the longer I have to travel, the more pain I’ll be in when I get there. Afterwards, will I have enough time to recover before my next activity, or appointment as planned?
So what do you enjoy doing now?
Because the amount I can do has changed so much, I find pleasure in other activities that I hadn’t even considered before. For example while I used to enjoy going to the cinema, visiting the town with my friends, or having an evening out with them – now my focus has changed to more solitary tasks, but ones I still enjoy such as crafting, reading, marathoning a TV series, or writing.
How has your attitude had to change?
I’m generally quite hard on myself, and like to keep busy. Sometimes if I end a day having done nothing, I feel like a failure. But I’ve had to start thinking that if the reason I did nothing was because I wasn’t well enough, or was asleep most of the day, that’s okay. I have to remember that doing anything when I feel that way – five minutes of website editing or responding to an email is still an achievement. I have to listen to my body and rest when I need to. I have to take care of myself, as I am the only one who can.
Is it easy to get help?
Another thing that I have realised when you have a condition like this is that everything feels like a battle. If you need to see specialists, it’s not just a case of asking your GP – there are certain routes you have to take which can take quite some time. If there is a new treatment you’d like to try, often you have to keep researching to gather the evidence and fight your case. If you get to the point where you need a bespoke wheelchair that costs a fortune, it’s not just a case of telling the NHS that you need one and it will be provided. Instead you have to jump through all the regulations and assessments beforehand, usually for the request to be rejected and so you have to go through another year of paperwork and assessments to get charitable funding. If your condition reaches the point you have to give up work, getting benefits is a whole other nightmare onto itself which led me to a mini break-down and having an anxiety attack every time a brown envelope from the Department of Work and Pensions lands on my doorstep. And these battles go on and on. I might sound a little bitter, but when you’re already exhausted and rundown it can be hard to find the energy to keep fighting these battles, so they become magnified in my head.
Do you feel secure in your life?
Another way in which my life has changed is that I now have to rely on other people or organisations, and sometimes I feel that I could have the rug pulled out from under me at any moment. With all the changes to the welfare state in the UK, I feel almost constant panic that the support I receive could be stopped. The money I receive pays for my life expenses/bills, and treatment the NHS won’t cover, so it’s vital. However, another knock-on effect is that my adapted car is linked to a specific benefit, and the car has a hoist to enable me to travel with my chair. It’s not possible to put the hoist in many cars, and so I’d be limited to unreliable taxis that are bookable days in advance, and have often not turned up and left me stranded in various places many times. The reality is I wouldn’t be able to leave the house much, not even for appointments.
What about the good changes?
It’s not all negative, however. It’s obvious that had I remained healthy, my life would be utterly different, with vastly different goals and focuses. But that’s not how it went, and that’s okay. I may not be in the career I had envisioned, but I’ve done a lot of volunteer work with organisations I wouldn’t have even considered, if I didn’t come to realise how vital their work was. My relationship with my mum has strengthened as she’s supported me over the years with understanding, and is my pillar of strength. My friendships have completely changed – the people I now spend my time with are understanding and caring, and don’t judge me if I have to cancel for the third time in a row. Even where I live – I had to move into accessible accommodation, but it also happens to be the nicest place I’ve ever lived, with a lovely garden I get to enjoy. I also probably wouldn’t have got my cats, who I now adore!
Life does change when you have a disability, and some aspects will always be harder than others. If you’re interested in following my journey and to see where I go from here, please come and join me at The Chronic Chronicles, or follow me on twitter at @sparkly_place.