Dehydrated Musings of a Zebra

**BEEP BEEP BEEP BEEP** I sink under the covers. The shrill yelling of my TPN pump pulls me reluctantly out of my light doze. My eyes snap open. Immediately alert. I roll over, muttering darkly. **BEEP BEEP BEEP** Erghh! "I hear you" I soothe. The pumps green backlight on its display screen flashes angrily at me. The alarm still squawking.

Ambix Pump with tonight's bag of TPN 

I already know what's wrong with it, down stream occlusion. It has been the same for the last 5 nights on the trot. Not more than 600ml of my precious nutrition has managed to be infused per night. If I'm extremely lucky I will get 30 minutes between beeps. But more often than not it's been every 10 minutes.

The lack of food and hydration is starting to have a noticeable affect. I have an almost permanent headache, am increasingly grumpy and distressed, and am lacking in energy. As for my mouth feeling like something has thrown up in it, than curled up and died, things are not quite as grand as they could be.

My brain tortures me when I do manage to drift off. I dream about nice cold thick milkshakes. Strawberry with a large blob of vanilla ice cream in it. My favorite. The ice cream floating like a beautiful creamy iceberg. Then I wake up, drooling. Pancreas throbbing from starting to work to produce enzymes to break down this mysterious mirage.

** BEEP BEEP BEEP** instinctively I stop and re start the pump. But it's only as good as shoving a dummy into the mouth of a screaming toddler. It spends a few moments sucking, slightly dumbfounded that you had dared to stop it mid tirade, before spitting the dummy out and screaming hell for leather once more.

We have tried everything and still it alarms. Sitting up? No. Lying down? No. On my side? No. X-Rays, and a procedure to check the position of the line. All came back clear. We have tried two different pumps, changing the pressure gauge setting on my current pump, putting it to the maximum it will put up with before alarming. And although it had made some difference, it hasn't been enough to get a viscous bag of fat content TPN (known as lipid) to go through successfully. I can't help but wonder what the team will come up with in the morning during their special consultants meeting. Whatever it is, I hope it helps.

I'm at the end of my tether. My get up and go got up and went days ago. But still I battle on. This will not break me. I have been through worse, and came through the other side more determined and stronger. I might be down at the moment, but I'm definitely not out.

Lady Sleep

Life with a Chronic illness involves a lot of waiting. Be it for new tests, or medication, or in doctors waiting rooms. Today has been spent waiting for energy that never came.

I'd promised myself that I'd get up early to start my new out of hospital routine, but when the alarm went off at 1030 as planned, I couldn't quite bring myself to wake up, so turned over to drift back into the comforting arms of sleep.

By the time I next came to, the clock had struck 1300. I leapt out of bed like a cat on a hot tin roof. Well, I say leapt. Truth is, I can't "leap" anywhere. It was more a crawl with the enthusiasm and speed of a sedated snail. My limbs felt heavy, uncooperative. Like they belonged to someone else.

I felt incredibly guilty that I'd given in and slept when I should have been awake and starting my day. My Brain was not my friend. It was muddled and foggy. Truth be told, I was wishing the hands on the clock to hurry round, counting the hours till I could wrap myself up in my favourite purple blanket and snuggle up with my hot water bottle and sleep.

"Brain Goes Sky Diving" an original cartoon by Rosie P 

But when that time does come, sleep does not. Instead my Brain is busy telling me all the things that it wants to do. Sky diving. Kayaking in Scandinavia. Exploring the Pyramid's in Giza.

Then it hits me. I cannot do those things anymore, so I mourn.

Before I know it, it's 0330 in the morning and I've not had a drop of sleep. I worry that I won't be able to get up again. The cycle will begin a new. Striving to achieve routine, yet always failing. The clock ticks. "One second less sleep". My Brain comments. The more I count the seconds, the further away from me sleep gets. My breathing quickens, panic setting in.

Just breathe I tell myself. Slowly. Focus on the cool air rushing in through your nostrils, flared and tense. Then the air leaving through your open mouth, lips pursed, the freshly warmed air tickling them. Feel your chest expand and contract.

Focus on the miracle of breathing.

Calmer, sleep starts to creep forward. She's like a shadow out of the corner of your eye. As soon as you look at her she vanishes. Gradually, with my attention focused on breathing she approaches, gently wrapping me in her warm embrace.

"Tomorrow is a new day" she whispers gently "what will be will be".