The feeling is like no other. There are no set of words to describe. It’s 3.01am and I’ve just had four hours sleep, fabulous in my world. I have a set of cat eyes looking at me in the dark, wanting feeding already. This is a sleep like no other, my bed is crisp, soft and warm, the air is purified, filtered clean by the machine in the corner of the room and the familiar smell of the sheets make me feel secure and safe. The eagle has landed.
Rapunzel has been freed. She is home.
Wait, or really has she acquired a new tower? A new window to gaze out of? See freedom is more than being released, it’s no fear.
The sun rises on Woodbine, Matt does what he does for me every morning, rolls up the blinds to reveal the sun rising, glaring through our cottage Windows, it’s beautiful whatever the season. The view of the street plus rolling fields and farms is a lovely from my view. I love the morning sun on my face, it shines in at just at the right spot. It wakes me up happy.
We have a family of sparrows who are dedicated to living with us every year, that and two new hedgehogs, yet to be named. The birds sit on the street overhead phone cable that hangs across our window view, fighting and tweeting every morning over breakfast. Every March they come back all of them and nest in the roof next door, they have their babies and then they leave us just before winter. There are about 12 of them. Happy as Larry. Our house is on a steep hill, so our neighbour’s roof aligns with our window which our bath sits under. I sit for hours in the tub watching the birds play and fight, whilst the two fat pigeons overlook on the chimneys. I always have a partner in crime, my cat, Oreo. I never knew that cats growled until Oreo acquainted with these birds, I often find black paw marks all over the tub, where he spends all day in the garden then in the early morning just sits in the tub waiting to strike. At what I’m not sure, soft as anything, and as human as anything. He has only ever killed a baby sparrow once, it was tiny, and it fell out the nest. His kill scores are poor, he just carries frogs and mice live into the bedroom and taps them with his paw. Have you ever tried to remove frog from your bedroom? It’s disgusting. Silly cat. My best friend though.
It was weird leaving the hospital last night, didn’t think it was ever going to happen. Then it did, it was real, and it was like oh I’m leaving this 24 hour care to do it on my own now. Eek Not complaining at all, be clear on that, just more indescribable feelings of happiness and in secureness I suppose. No more NHS food! Having bloods daily is my chore, but now only weekly? What happens if it goes wrong I don’t have any insight, I’m on my own? It won’t go wrong. I’m told. I am the medical wonder, believe in my colon. I need therapy for blood result addiction.
The hospital is on the same route to work, I commute by car every day to Birmingham central, I know every traffic light, when they change, every bump in the road and roadwork’s. As I sat in the car it was like being Mel Gibson in that film Forever Young, my world has changed in 7 weeks. (Okay Mel’s changed in 52 years) still, You notice all the little things, like petrol going up 10p and it is now proper Spring / Summer, not drab rainy March. oh and a housing development is going up right outside the entrance to our road, great, temporary lights penning us in for 36 months. Damn you world.
Fifty five days of the same room, you institutionalise, how you move, where things are kept, how you breathe and think. Your confidence goes. Being outside makes everything trippy, my eyes are really blurred in the car and I shake nonstop. Breathing is hard, hearts too fast and leg muscles are none existent. My Left calf is locked, so I walk with a limp, damn you potassium levels. More bananas needed. I really have to get off the Prednisolone, I can tick all the side effects going now, and it’s destroyed me and my chubby face. Going outside has made me realise, I’m ruined.
Our front door is so white and the grass is so green. I don’t remember the path being so long. Our house is spotlessly clean, my lovely house, I’m so lucky, everything looks so white and bright. The house plants I’ve been nurturing are huge. The smell is like no other, the smell of home, familiarity. Matt you are amazing, thank you. Hello Mr Cat, hello garden, hello world. My world. Small as it be I couldn’t think of any place happier to spend my days. I am a Lottery winner this evening. I’m home.
Rapunzel got her freedom, but at a price, in bags full of crohns currency. A million Crohners I reckon.
The sofa is a challenge, its low. I can get on it just not up. Pregnant and all. I’m happy being beached on it like a whale but that’s no good for the building the legs so I don’t think I’ll be sitting on that unsupervised. How silly, I can’t sit on my sofa so if I am alone as I’m stranded. Queue regular visitors please.
The stairs, well, they are small, 100 years old, and you have to dip under a low ceiling, no rail, uh oh. The toddler position of all four crawl is great up and I guess backwards down will do for now, great with a hanging unfamiliar bump weight. I suppose this is all practice for C-section shuffling around right? Think of the positives and all, I will be well trained before I take another battering.
Our bed, a little low but comfy so I’ll just take the hit and nose dive onto that one! I have had enough now of faffing, I’ve climbed the stairs.
So the plan. Oh it’s a plan and a half.
It’s a good job I have clear instructions, I thought it was Wednesday yesterday. No concept of time.
I have a sack of pills I need to navigate and half of the hospitals supplies. It’s now 4.28am and I’m about to take my steroids but drop the dose to 35mg. Eek. This might mean I sleep more and stop shaking, but as I’ve said the drop means side effects so the fun starts today! I drop weekly by 5mg, then I have to get to 10mg and stop and stay there for a test to see if my body can produce its own cortisol. Cortisol is the hormone we have naturally in our systems, at the moment mines being produced by the drugs at high levels, it affects your gland production when you take steroids for more than four weeks so I need to know whether my glands work before I drop or I’m a mincemeat! Fun.
To add to the list I have an abundance of dressings, gels, vitamins, sleepers and attachments for my line. I seriously need storage.
The PICC line needs a flush every week, plus redress so I will get a district nurse assigned to me locally. Blood tests are at outpatients fortnightly at the hospital and outpatients appointment galore for bowel clinic and baby clinic.
The baby clinic though, how exciting. I’ve really ramped up spending in the last few days. I have also had to make four refunds because I have steroid purchased! Looked back, bought the wrong thing, multiple things or sent them to the wrong address. Although I’ve come home to a bare nursery filled with parcels to open, it’s a baby Christmas, awesome. Finally getting to be pregnant and a mother to be, Moses baskets, prams and contraptions like gro lights and sleepyheads, who knew all of this existed. Where do I sign up for pregnancy yoga and things ? Wait I can’t even get off the sofa !
I’m at the Birmingham Women’s on Monday. Mission. Plan baby extraction and scan. An appointment to look forward too :). So they are setting up a cross clinic for crohns and pregnancy, so I get the pleasure of my obstetrician, surgeon and consultant all wanting to be at c section. amazing care. So Monday is exciting. An ‘alternative’ birth plan plus maybe a birth date ? Bliss.
The magic flower Infusion went in my veins yesterday for the second loading dose. I now have others planned at 28 weeks, then 36 weeks I think. I’m guessing baby should come out before the 36 weeks before I’m topped up but will see !
For now, home, family, friends, cat and comfort. I can make a cup of tea , boil and egg and have a bath. (Maybe need a hoist)
Day 56. Saturday 21st May. 8 am. Good Morning life. 🙂