A Day with Ehlers-Danlos Syndrome : Part 2 (A Bad Day)

I’ve been awake for a while and aware that it’s going to be a bad day. My head is pounding, I feel horribly sick and it feels as though my body’s been hollowed out, filled with petrol and set alight – nasty, burning pain all over. I’m stiff and uncomfortable so I’d really like to turn over, but I know that will only bring on the sickening lurch of a pre-faint so I lie still. Eventually, my electronic pill box sounds and I reluctantly open my eyes. The room is spinning and my eyes seem filled with wriggly lights (I don’t know how else to describe it). I manage to lift my head enough to take the pills and then collapse back on to my pillow. It’s too soon after taking the pills so now I have heartburn. After a few minutes I realise I really need the loo. I carefully pull myself into a sitting position using the rail by my bed and groan as the nausea becomes more intense and the room spins with increased vigour. My bladder is growing more urgent so I pull myself up into a stand. Massive mistake: my knees buckle and I hit the floor. After a couple of minutes I manage to muster the energy to slowly slide to the bedside table and press the alarm call. The safest thing would be to wait where I am, but then my Mum would have to clear up a puddle and goodness only knows she has enough to do already, so I start to slither towards the bathroom. I can’t crawl because my wrists, elbows and shoulders give way too easily. I’m about half-way there when I hear my mum’s key in the door; she’s responding to the alarm. She helps me up and takes most of my weight as I shuffle slowly and clumsily to the bathroom. To me, everything seems hyper-real and yet curiously unreal, as though I’m really far away. Mum helps me on and off the toilet seat and holds me steady as I wash my hands. I’m past worrying about my dignity after all these years! She helps me back to bed. By this time, I’m talking nonsense and occasionally laughing for no reason. My floppy blood vessels mean there’s not enough blood in my brain so I can’t function normally. It feels like the functioning part of my brain is locked away in a cell, screaming to be let out. It’s scary and disconcerting. I drift off to sleep. Mum will take my daughter to school. At least I know she’s safe.

 

My mum comes in a couple of hours later and holds the cup to my lips so I can drink. Can I manage a shower? I’m desperate to get washed and dressed but it feels so daunting. Mum helps me to the shower and washes my hair. The water feels good. Mum helps me out. I manage to dry myself but dressing is beyond me. It’ll be a pyjama day. I manage the top but Mum has to put the trousers on me; leaning forward makes me reel. The effort of showering has exhausted me, but I’m sick of being in bed so Mum supports me as I shuffle slowly to the living room and the sofa. She makes sure I have plenty to drink, the phone, my walking stick and the alarm call button. She makes me some toast. I feel too sick to eat but I try. The food gives me some energy but my stomach aches; there’s not enough blood there to process what I’ve eaten. I try to watch TV but it seems so loud and bright that I feel I might explode. I switch off the TV and doze.

 
I wake with a start. What’s the time? By now it’s almost lunchtime and I realise I’m going to have to start making calls to cancel the plans I had for the afternoon. An appointment, a meeting, a coffee date – I hate having to flake. I call and explain I’m too ill to make it today. I talk slowly and it’s hard work. I’m tripping over my words, using the wrong word in the wrong place, slurring and stammering. I’m grateful I’ve taken the time to explain to the people in my life on the good days what a bad day can be like; strangers just think I’m drunk. I hang up, exhausted again and decide to shuffle back to bed. I call my parents first so that they know what’s going on. They confirm they’ll collect my daughter from school. I collapse into bed, barely strong enough to pull up the covers after the effort of moving from the living room to the bedroom.
 
It’s 3.30 pm and my Mum brings my daughter to see me. She hardly bats an eyelid at the state I’m in; she’s used to Mummy having days like this a couple of times a week.She tells me about her day and we hug. Then she goes back with my Mum to have her dinner and a bath. She’ll have to sleep there too. 
 
I’m stiff from lying still for so long so I decide to potter about the house a bit. After a couple of minutes I’m short of breath and so it’s back to the sofa until my husband arrives home from work to cook a meal I’m too tired to eat – using cutlery (even adapted) and chewing is surprisingly hard work.
 
At 8.30 pm my husband helps me into bed. Despite resting all day I’m still exhausted and in significant pain. As I fall asleep I hope to have a couple of good days before my next bad one.
Advertisements

2 thoughts on “A Day with Ehlers-Danlos Syndrome : Part 2 (A Bad Day)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s