31 May 2014

Ehlers Danlos Syndrome Awareness #3

Okay this is the last of the posts that I'm going to squeeze into EDS awareness week. I thought I would write a post mentioning some of the things that I need help doing that healthy people take for granted or carry out as if it was nothing.

I cant walk very far and use a wheelchair but even the short distances I do every step I take hurts. I am very aware of how much I am walking and how my joints react to it. I can feel every step in my ankles, knees, hips, back and even my shoulders. I get pain when walking and then extra payback pain once I've finished.

I tend to only shower at night because I use what little energy I have left, then I just have to go to bed. None of this quick shower in the morning to wake me up malarkey. Showering is exhausting and takes so much of my energy. Yes I sit down in the shower but all the raising arms and warm temperature is so draining. I have to take breaks between the different parts of showering and some times I cant even do that. I'm 21 and some days my mum has to shower me. I then get out the shower & have to have a rest before tackling dressing/wrestling with clothes. There is no way I can shower every day, that takes energy I just don't have to spare and I have to try and plan when I can shower around what I am doing what days.

Getting Dressed
Me and buttons do not get on. I tend to have to buy denim shorts or anything with a button a size bigger so that I can pull it on without having to undo the buttons. My fingers just fall out and give up the fight way too easily. Clothes that go over my shoulders also tend to have to be a size bigger as dislocated shoulders stuck in a jumper over your head is really not that fun. I have ended up stuck in my clothes screaming & having to be rescued by my mum a few times. Bras are also my enemy. Not only are they a faff to get on but man my ribs really dont like them. Yesterday I put on pair of tights & then found a hole in them but I was just too exhausted to have to go through that again so I just rocked the grunge look. Sometimes even the weight of my clothes on my skin is so painful. I have to wear light, soft clothes. Also about 75% of my wardrobe is pyjamas, and sweats

My body has so many issues with eating. Anything too chewy or big or hard *smirks* results in a dislocated jaw. I cant cut up meat. Even swallowing can cause problems. My throat forgets how to swallow which results in me spitting whatever was in my mouth at the time (behave) across the room in an explosion. Don't ever sit opposite me at a meal. Dislocated oesophagus, yeah I didn't realise that could happen either until I cried drinking vimto, has to be the most painful thing to ever happen to me. I also have a tendency to drop what I am carrying so am not trusted carrying my own plate to the table. Plus actually fighting my way into packets/jars is never very successful and usually results in my injury. I also have problems with digestion and suffer with really bad nausea, acid and stomach pains.

As mentioned in my previous post, sleep is difficult and the sleep I do get is un-refreshing sleep. I could and have slept 16 hours and woken up feeling like I haven't slept at all. I also have to surround my self with so many cushions to prop certain body parts up. I have 2 V shaped pillows to support my hips & I always need a pillow between my knees. I also constantly switch between being too hot and too cold

Stairs are my arch enemy. We really don't get on. The amount of injuries I have had from stairs is ridiculous. I fall up them, down them and dislocate things. At uni I live in a ground floor flat so coming home & having to climb stairs to go to bed is always a shock. I usually have to take a break half way up. There isn't even that many steps. I have also had to sleep on the sofa because I just cant manage the stairs

Going to the toilet.
So not only do I have to pee a lot, I mean its ridiculous how much I have to pee, but all that sitting down and standing up takes its toll on the old knees. I need a raised toilet and grab rails to make it easier. I always forget how much this helps until I sit on a normal height toilet and then injure myself standing up. Never very glamorous when you need rescuing from the loo.

Making Plans
I cant make plans. Its impossible because I never know what my body is going to do and if I'll have a good day or a bad one. Also I can go out in the morning and after a couple of hours, suddenly go down hill & have to go home to bed. It does mean my life is more spontaneous though

Leaving the house
Some days even leaving my bed doesn't happen or is like climbing Everest. Some days the trek from my bed to the sofa seems like a marathon so leaving the house is not gonna happen. When I do leave the house I have to make sure I have my meds, extra painkillers, my phone in case I need help, my radar toilet key (tiny bladder issues), walking stick/crutches. If I go somewhere I need to know there's parking close, toilets and lifts.

Sometimes I'm just in too much pain to be able to socialise, no matter how much I want to spend time with my friends. Pain and fatigue effects concentration which makes conversation difficult. I also get noise and smell sensitivities and too much makes me feel sick, gives me a headache and even makes me feel dizzy. This also makes reading or watching films difficult

Being on your own
I can be on my own for a bit but I need someone with me most of the time in order to cook for me, make sure I eat, help with washing & dressing on bad days, doing the cleaning, picking me up when I fall (literally). The list goes on. There is so much I cant do on my own. 

There are so many more little things that I need help with.
I am so grateful that I have such amazing family, friends and carers who help me so much. I have no idea how I would cope without all the love and support I have. My mum is my rock and my biggest support. My family are pretty amazing.



  1. I think we are basically the same haha

  2. I also have EDS. I'm not full time in a chair, and I don't dislocate as much, but I identify with so much of your post...having to have help to take a shower, the pain, being stuck at home, no stairs, not being able to make plans... Hopefully they'll find a cure someday.