Ehlers Danlos Syndrome

Feeling Supported

by Veronica on September 23, 2009

in Ehlers Danlos Syndrome

Even thought my GP had doubts about it helping, I went and saw a new physiotherapist the other day. My other physio, if you remember, set me adrift, slightly overwhelmed with how extensive my EDS is. She was nice about it, but it was a letting go and I was left floating along, not really sure where to turn.

The new physio, she’s had training in dealing with hypermobility. She knows what Ehlers Danlos is and while I don’t think she’s treated a case before, she knows how to.

My point is, she’s experienced.

Which incidentally, is exactly what I needed.

She pointed out that my proprioception is pretty awful [apparently I’ve got feet and if I don’t think about them, they bend really strangely without me noticing] and that I’ve learnt how to cheat in order to stand up without falling over [trick: constantly focus my eyes on only one thing].The proprioception thing explains why I can’t sleep in the dark and why trying to walk in the dark is like trying to walk across a pitching ship deck.

She had me stand on one foot and close my eyes. At which point I promptly fell over. It wasn’t a big deal, I was standing supported by bars at the time, so it was more of a wobble, eyes springing open and both feet on the ground than an actual fall.

I walk … strangely. Like a ballet dancer, all toes and along the outside of my feet. Funnily enough, I’d never noticed. See above re: proprioception.

I’ve been referred off to a podatrist in order to get orthotics fitted. She seems to think that straightening up my feet should help with my hip and knee problems. I agree. Which um, why did no one else think to mention that maybe my hip problems are caused by my feet?

I’ve been given two minor exercises to practise as often as I can. And before you start thinking that 2 isn’t much, by the time I’ve stood on each foot for 20 seconds and looked around [to try and help my proprioception, the looking is to stop me cheating], I’m exhausted. I have to sit down and recup.

Which you know, mostly sucks. But in the long run it will help, so I’m standing on one foot and looking around lots. I sort of look like a carnival clown.

I mentioned the children and she thought that physio for them was going to be the best thing I could do. She has a hypermobile son, so she understood where I was coming from when I spoke about how worried I am about Isaac [coming up in a later blog post: listen to me worry about my son. lots].

I left the appointment feeling supported. Like she knew exactly what she was doing and that everything she was doing was going to be in my best interests.

She understood me and where I was coming from.

It’s been a long time since a medical professional gave me that.

{ Comments on this entry are closed }

Useless Books

by Veronica on September 21, 2009

in Cancer, Ehlers Danlos Syndrome, Grief, Headfuck

There is a bookshelf in my house. It reaches to the roof, tall and thin. It sits in a corner of the dining room, slightly wobbly but bolted to the wall to stop it falling over.

My father made this bookshelf, a few years ago, for Nan. He made it to cover a useless doorway, boarded over on the outside but visible and ugly on the inside. Shortly after it was installed it was filled with books, top to bottom. I used to stand and peruse the books, picking them up, hefting their weight in my hands, stroking their binding and then curling up with one to read.

Then Nan died.

And this bookshelf; the bookshelf my father made, got moved into my dining room along with all it’s books. The bottom four shelves still contain her books. Books that I used to read of a weekend, books she loaned me, books she was reading in the hospital before she died.

I can’t touch them. I can’t bring myself to stroke their spines anymore, let alone pick one up read it. There’s too much there, too many memories.

I look at the bookshelves and I have to walk away and remind myself to breathe. My stress levels rise and I start to shake. I have to walk away, leaving the books untouched and the stories unread.

I know it will get easier.

But.

Until then, it just sits there.

In the corner.

Wobbling.

***

I’m starting to get a little bitter. My anger is rising to the surface. Things haven’t been made easy for Mum and I in the last three months and there is still so much work left. The jobs stretch out on front of us, marking time until the house is sold. It’s never ending and never easy.

It’s been …. stressful. To say the least.

I’m a little bitter.

***

My shoulder clicks back into position before promptly falling out of it’s socket again. Electric signals sent down my fingers with alarming regularity reminds me that it doesn’t work properly, not anymore.

For that matter, neither do I.

***

Lileya from In The Fringes wrote:

There is a fine line between trying to look on the bright side and putting on a happy act.

and that is so true. That line, resonates within me.

Too often I put on a happy act.

I’m not okay. I’m sick and tired and my joints hurt and nothing stays put anymore. I’m grieving still. A lot.

And I’m sick and fucking tired of having my grief mean nothing because she was ‘only’ my grandmother. I’m sick of having my pain discounted because you can’t understand it.

I miss her everyday.

My joints dislocate everyday.

Every. Single. Day.

So fuck you Anyonetoblog. No really, fuck you. You can’t be bothered to see my side of it? I can’t be bothered to be nice anymore.

{ Comments on this entry are closed }

Isaac and sleep issues.

by Veronica on September 18, 2009

in Ehlers Danlos Syndrome

Bendy Girl said something on my last post about Isaac and bedtime that made a lot of sense.

Bendy Girl says:

Poor proprioception might be something to do with why he still needs to be swaddled. Even now I can’t sleep without heavy enough bed covers to feel the pressure on me, I can’t feel the lighter covers & it makes me feel just ‘wrong’ can’t explain it any better!
BG xx

Which (again) was like a light going off in my head. I can’t sleep without heavy covers either. It makes summer less than fun, but it’s not that bad as I’m cold most of the time anyway.

I thought about it and I agree. Isaac does had terrible proprioception. He has no idea where he is in relation to himself, which is fairly normal is a baby. They do grow out of it, but I’m assuming because of the Ehlers Danlos that it will take Isaac a little longer than other babies. He definitely has more issues than Amy did at the same age, but that’s another post all together. It’s also why the kids are being seen by the Paediatricians at the hospital, rather than their medical care being solely overseen by a GP.

Keeping this in mind, last night I wrapped Isaac in one of our largest blankets that he loves. Sure it’s pink, but I’m pretty sure he doesn’t care. One he was wrapped (and sleeping and moved to his cot) I covered him over with a heavy blanket folded in 4 like Mrs C. suggested.

And then?

He slept through the night.

From 7.45pm to 5am he slept without a peep. At 5am when he woke up I fed him and he went back to sleep (easily!) until 7.15 when Amy screamed for me to wake up and woke him as well.

I was a little grumpy with her.

Fingers crossed that it wasn’t a fluke and that doing the same thing again tonight works.

Cos uhm, yay.

{ Comments on this entry are closed }

Let’s talk about sleep. Or the lack thereof.

by Veronica on September 11, 2009

in Animals, Ehlers Danlos Syndrome

Isaac is sleepless. He’s more sleepless than Amy was and seeing as how I named this blog ‘Sleepless Nights’ when she was 11 months old, that’s really saying something.

He finishes cluster feeding at around 11pm, five hours after I’ve put him down for the first time. His cluster feeds are generally 5 minutes long, every 30 minutes or so. It would be lovely to have an early night, but I’m not kidding myself that it’s going to happen.

At 11pm, I finally get to drag myself off to bed, content in the fact that Isaac is sleeping deeply. Only to have him start the night time feeds.

Every hour, he wakes crying. On a good night, he’ll feed for twenty minutes and then sleep for forty minutes before waking again. On a bad night, like the last few we’ve had, he’ll feed for 20 minutes, goo and laugh at me for 20 minutes, feed for another 20 minutes before sleeping for, you guessed it, twenty minutes.

Add, rinse, repeat.

Over and over again.

Some nights he’ll stay awake for 1-2 hours. Talking, gooing, feeding, crying. Everything except sleeping.

It’s … wearing to say the least.

Our days start at 5am. By the time I get Isaac back down for a nap at 7.30-8am, Amy is awake for the day, needing breakfast and playtime and snuggles and ohmygod.

I’m a little exhausted.

***

The doctor prescribed me some new anti-inflammatories recently. Which is great! My tense and sore muscles thank her.

Only, there is one problem.

Once my muscles are coaxed into relaxing by good drugs, I’m left rather floppy.

No, scratch that.

I’m left with fuck all stability at all.

Apparently all my tensed and painful muscles are actually keeping all my joints together. Whodathunkit.

Anyone else had any experience with anti-inflammatories causing floppiness issues?

By 8am this morning, I’d relocated a good half a dozen joints god knows how many times. After the fourth wrist dislocation, I put a brace on. By lunch time, I’d removed the brace because I was only dislocating inside it. My hips popped in and out as I walked and I’m still not convinced that my elbow and ribs are all back in.

It was a bad day.

The actual dislocations are getting less painful, while the overall pain is getting worse. Trade-off I suppose. It’s rather disconcerting to feel your bones sliding against each other though. Especially when they won’t stay put.

***

6am this morning found me curled up on the couch under a blanket while Isaac played on the floor next to me. I’d been trying to nap again, but he kept squawking at me and needing things. He’s finally worked out how to go forwards, as opposed to sideways or backwards, so he kept getting stuck and needing rescuing.

I climbed off the couch and stood to put wood in the fire. A cat curled around my ankles, trying to make me break my neck. I shoved the wood in, shut the door and leant down to catch the cat. For once, it was easy. She was hungry and didn’t dart away.

I walked past the couch, picking up my heatpack as I went. I opened the gate into the kitchen and walked towards the microwave.

It was only the frantic scrabbling of the cat as I went to open the microwave door that had me realise that it wasn’t the heatpack that I was about to put into the microwave.

It was the cat.

Poor cat.

God knows I wouldn’t have enjoyed having to run outside to rescue my heatpack from the icy ground after I threw it out of the kitchen window.

Thank god I stopped in time.

My feet would have been frozen.

I shook myself to wake up, and ended up with things where they were meant to go. The cat out the window and the heatpack in the microwave.

We won’t talk about how many attempts I had at making a cup of tea though. That’s just embarrassing.

Cough.

***

Hi, my name is Veronica and today, I almost microwaved the cat.

How are you today?

***

Edited to add:

I forgot to mention. I was included in this shiny little list. I’m thrilled. 100 Most Bookmark Worthy Websites For Dr. Mums.

{ Comments on this entry are closed }

Warmth

by Veronica on September 8, 2009

in Ehlers Danlos Syndrome

As the baby falls asleep I run myself a bath. The sound of the pump thrums against the faint gurgles he makes in his pram. I wonder if I’m setting him up for more sleep issues, letting him fall asleep where he will, then content myself with the thought at least he is falling asleep for me. even if it isn’t in his cot.

The bath finishes as Isaac closes his eyes. I hold my breath and quickly transfer him to his cot, swaddled and snuggled. He opens sleepy eyes to look at me and inside I panic. On the outside, I lift his blanket to his cheek and he snuggles down, content that he is safe. His eyes shut again and I turn and walk away.

Through the lounge room I walk, shedding clothes and layers of myself. The children are asleep, the curtains are shut. No one here to see except for me and Nathan. I think he watches me walk away, but I don’t turn around. I’m intent on my bath.

I flick my hair into a bun and turn the heater on. A quick check tells me that the water is the correct temperature.

It’s been a busy weekend I think as I slide under the warm water. Amy turned three, I cried until I couldn’t breathe and I had a good time. All rolled up in two days.

I cock my head  to the side, listening for the sound of my children. Nothing. As it should be. I start to relax, even though I never stop listening.

It’s been a long time since I had a bath. I have to gauge pain against the possibility of my body temperature rising causing nausea and the nausea generally wins hands down. This time I have enough anti-nausea tablets to see me through a temperature rise and the pain is enough that I need to soak.

I open my book and start to read. The last time I read a book in the bath was when I was living with Nan. Memories assault me before I shut them out and absorb myself in my book.

Slowly the bath water cools.

As my feet start to get cold, I put my book down. I look around for the face washer I am certain I grabbed, only to find it sitting a few metres away. I grabbed it, I just didn’t leave it within reach. Stupid brain fog. In one swift movement I stand and water streams away. Goosebumps rise as I hurry to grab the face washer and my razor. With a breath of relief I sink myself back under the water, only to discover I’m still cold. I hesitate over running more hot water and then bring myself back to the present, where it’s my water and I’m the adult. I don’t need to ask permission as I turn on the tap.

It’s a struggle, my hands are not as strong as they used to be. I have to use two hands, despite me being the person to tighten them last. If Nathan turns them off I’ve no hope of getting them on again alone.

Warm again, I wash my face and then pick up my razor. I start at the bottom of my legs, shaving all the way up. I count bruises as I go. By the time I get to twenty, I give up. How many there are today doesn’t matter. New ones will just appear to replace the old.

My mind wanders as I finish behind one knee and I cut myself. I can never shave my legs without cutting myself these days. I sink my leg back under the water, not caring anymore about bits I might have missed. This bath is meant to be about relaxation, not counting my flaws.

I contemplate laying in the bath a little longer, but I can’t do it. Not now that I’ve shaved my legs. I stand and grab my towel. I walk out to the fireplace, ignoring the [tiny] mirror as I go. I’m relaxed. No need to stress myself out again with bad skin and bags under my eyes.

It’s warm in front of the fire as I dry myself and get dressed.

I must do this more often.

But knowing me, I won’t. Baths are a treat. A side effect of the huge amounts of rain we’ve been having, I can afford to waste the water to soak myself.

I give myself a shake to make sure everything is where it should be. My ankles have been slipping lately and they need a little wiggle to keep them in place. I stand in front of the fire for a few more moments before kissing Nathan and heading to bed with my book.

10 minutes later, Isaac wakes for his first feed of the night. But, such is life.

{ Comments on this entry are closed }

← Previous Entries

Next Entries →