Tag Archives: Crohn’s

Saying goodbye to 2015 with openness and honesty


Sometimes I think, I don’t know what happened. Sometimes I think, how did I get to be right here, right now, right where I am?

It’s like, I am in some kind of blurry confusion. Or like I landed on my bum with a thump. I wasn’t expecting it and I am sitting there all kind of dazed and amazed.

The hours tick by and roll into days. The days tick by and roll into weeks. And I tumble and roll with them. I keep attempting to pick myself up and stumble on but I seem to lurch from one impossible situation to the next.

Some days, standing in front of several huge piles of washing feels like enough to be classified as an impossible situation.  I look at the mixtures of red and white and black and blue, which should, technically, have all been sorted out into their appropriate baskets, according to my own rules of the house. I stare at those never-ending mixed piles and I despair.

Some days, I focus on the enormous list of things I expect myself to do that day, and I realise I am in an impossible situation. I can only disappoint myself because no earthly being can possibly tick off each of those designated tasks in just one day.

Some days, I find myself pondering over a blank piece of paper. It seems like my impossible situation is to actually find enough energy to draw up the day’s list in the first place.

Instead, I drag my lazy butt over to the sofa and distract myself with the TV, or a game or someone else’s news.

Then I leave the house at the very last minute to pick up my daughter, because even though, I feel incredibly lonely, I can’t bear to face the other mums. With their happy smiles or their problems or their invitations or their requests.

I attempt to hide in the driver’s seat of my car. And if they approach me, I feel the panic rising from the pit of my stomach.

Occasionally, there are days when the impossible situation is just to make it through the day.

On those days, I bite my lip, swing my foot, pace the floor, hug the dog, think of the kids, go back to bed in an attempt to wake up in a better mood, call my husband and just try to breathe in and out and tell myself that tomorrow is a brand new day full of brand new possibilities.

I’m still an optimist. Deep down inside.

2015 has not been my finest hour.

In all honesty, it’s been really bloody tough.

It’s been the accumulation and aftermath of: three burnouts, Crohn’s, a million doctor’s appointments, sick kids, diagnoses, arguments, a suicide, PTSD, continuous headaches, sleepless nights, stress, guilt, loss, panic and pain.

So I decided that the only way to turn things around was to go into a specialised clinic at the local hospital for a while.

It was the right decision. I talked and cried and laughed and painted and danced and beat the hell out of drums. I made friends and cried and talked some more. I listened. I hugged. I walked through the forest. I remembered things I’d ‘locked’ away. I talked about them and cried and then ‘locked’ them away again. Because it’s just not healthy to let those things consume your life.

Above all, I realised that my own driving force is low self-esteem, guilt and fear.

So all these years, I’ve needed to do my absolute utmost, to prove to myself that I am worthy, and to reduce the feelings of guilt that I carried around for things which I had always believed were my fault but actually weren’t. I needed to protect my family from all eventualities, because in my own experience bad things actually happened again and again.

I feel like I’ve been knocked down and built back up again. Albeit, loosely.

I can’t tell you that I feel ‘well’. I would more describe myself as feeling ‘fragile’. Sometimes, some days, still bring their impossible situations.

But I can tell you that I have more energy and that I am looking forward to Christmas more than I have in years.

And that I am hoping, ever the optimist, that when I look back in years to come, that I will see 2015 as a turning point in my life.

And that 2016 was a new beginning.

Wishing you all, from the bottom of my heart, a wonderful Christmas. And a 2016 full of hope, enlightenment, love and strength.

 

 

 

 

 

 

People ask me how I manage it, but evidently, I don’t…


Yesterday, I sat at the table and I cried through lunch.

Not one of those snotty, bellowing, heart-wrenching cries. No. Silent tears dribbled down my face and plopped into my lap – I was tissue-less.

Yesterday, one child after another tried to console me at the dinner table and one child after another faced me with a just a little despair in their eyes. When is Mama finally going to get better?

I recognized their despair – had they have been able to see through my water-logged eyes it would have been mirrored right back at them.

Five weeks ago today, I awoke, as usual,  but it took me 45 whole minutes to be able to force my body from the bed.

I had run into a wall.

Again.

This is my third burnout in five years.

It took me every drop of willpower I’ve ever owned to throw off my quilt, push myself up and place my feet, slowly and continuously, one in front of the other and whisper, “It’s time to get up…” to an unsuspecting six-year-old who was due to go to Kindergarten.

Time was running past me and if I couldn’t motivate myself enough, she’d have to stay at home, and that would mean that I’d have to look after her.

If I could just get her out of the door, drive the short distance in the car, then I could return to my bed and sleep…

She was so good. So obedient. She dressed herself without much fuss and got her shoes on.

Which was more than I could do.

I managed to drag a scruffy pair of joggers over my nightie and shove my arms inside my winter jacket. Looking back, I think I tramped through the snow in my slippers.

No one gave my shamed, exhausted face a second look as I accompanied her from the car to the door. And I was truly grateful for that.

I have spent the last five weeks sleeping and crying and struggling to chew the food my husband cooked for me because, quite simply, it felt like so much effort. I’ve almost drowned in daytime telly. I’ve battled headaches and dizzy turns and stuffed myself with caffeine so I could keep a bleary eye on where an ADHD child and a six-year-old were bouncing to.

I’ve complained.

I’ve scolded.

And I’ve felt very, very sorry for myself.

I’ve dodged dentists. Avoided the drip, drip, drip of the anaesthetists drugs because I feared that if they put me chemically to sleep for my yearly procedure, my body might not actually bother to wake up. I’ve bypassed blood tests. And just generally avoided my usual multiple monthly visits to doctors’ waiting rooms because I couldn’t get there and anyway,  I had no intention of adding various other ailments to my wrecked body.

Except, that is, when my youngest succumbed to gastroenteritis and couldn’t even keep a splash of water down, leading to “blurry vision”. My husband raced home and I rallied myself for a brief moment, as he drove and I held a blue bucket under her nose.

Luckily, she was classed as ‘probably infectious’; so we sneakily side-stepped the germy waiting room.

I’m not a patient ill person. I hate lazing around. I am a person who constantly needs to do something.

It is starting to dawn on me that that is probably one of the reasons I landed in this situation in the first place.

It’s been five weeks, but today, at last, I felt a little different. A little less tired than yesterday. It was a little bit easier to climb out of bed this morning. I laughed instead of cried. I hope, I really, really hope that I’ve finally reached a turning point. That when the children head back to school next week and it’s all ‘action stations’ once again, I’m still laughing, still getting out of bed and not going to the Kindergarten in my bloody nightie and slippers.

Things aren’t going swimmingly at the moment…


Things aren’t going swimmingly at the moment.

The house looks like a bomb went off in it.

Yesterday, I was away the whole day. Doctors in the morning. Pick up the littlest kid from Kindergarten and then take said kid, as promised, for a bit of one-to-one-time back into town for lunch and then a trip to a local museum, that apparently, has been there for four years, but we had yet to discover. I couldn’t believe that I’d missed it. Being a museum lover and all that.

And to top it all, the best bit of it is: it’s a children’s museum. So having four of the things, I found that rather disturbing – that I’d managed to miss it.

In my defence, I was probably too busy being confused by the one way system in that part of town to notice a great big building with Museum written on it, beside me.

We returned home after a long and tiring day (it started very early, Joni having to catch a bus at 6.45 for a school trip to Strasbourg and, of course, she required a mammoth packed lunch for the journey, as you do when you’re sitting there, not using up any calories) followed by chucking a couple of kids out of the door and wishing them a nice day at school.

I have no idea how Akasha (who’s presently in her last year at Kindergarten) will ever get ready for school on time. She starts in September. I’m dreading September. It’s not so much that she goes along at a snails pace in the mornings. No. It’s more that she’s ‘busy’ doing more important things than eating breakfast or getting dressed or brushing her teeth. Like singing or drawing or putting yellow (her favourite colour at the moment) nail polish on the table her nails. I admit, I have indulged her. Taking her to feed the ducks before Kindergarten or reading her a story. The pattern has stuck and I have no idea how we will shake ourselves out of it.

As I said, we had an early start, but we were still running late for my doctors appointment. So much so that I had to drive to Kindergarten and abandon the car there – then race to the bus stop. I’m sure that confirmed, for many of the parents, that I am, as they suspected: a right loony.

I abandoned the car and ran for the bus and just made it by the skin of my teeth (that’s an odd saying isn’t it, enamel could have been more appropriate?) but there is method in my madness. Parking is expensive in town and so it’s much cheaper for me to buy a day ticket and go from one bus to another and, of course, it’s environmentally friendly too.

But yesterday it was freezing. And freezing at bus stop after bus stop is not really my idea of great fun.

I completed all of my patiently duties in town, missed the bus and went for a nice warm coffee and a bun. I decided that I had earned it. Having walked past several empty bus stops along the way in an effort to keep warm. Besides, as I’m the only person I know who actually lost weight over Christmas (thanks there to the delightful Mr Crohn) I can absolutely shovel a bun or two into my rashed face (yep, also a Crohn gift) and I headed into a nearby warm and welcoming looking coffee shop.

I ordered myself a Latte Macchiato, yum, and a piece of ‘homemade’ banana loaf. As I was admiring the loaf through the glass though, I noticed it contained nuts. They looked like walnuts, which I also put in my own banana loaf, but I knew I had to check, because of my peanut allergy.

“There could be peanuts in it, ” the assistant answered, aloof.

Bitterly disappointed I eyed up the other cakes on display. The fruit tarts. The doughnuts. The cheesecakes. The brownies. The muffins.

She watched me, then injected, “There could be peanuts in any of them. You should have something savoury. A bagel. You could have one of these bagels.”

She waved her arm at the bagels menu behind her as if she was on commission.

I almost fell into her trap. But right then, as I was about to take the plunge, I held myself back. I wanted something sweet. Not savoury. Without peanuts. Why would there be peanuts in doughnuts? Did they have such a sloppy kitchen? Why did she have no idea what her ‘homemade’ banana loaf contained? Did she just fire in any old ingredients?

I rejected her sales pitch and opted for ‘just coffee’ and stretched into my bag to pull out a tissue to wipe away my little tear of sadness. Except, when I looked down I noticed some-bloody-body had already been there and had only left me the snotty ones.

I arrived back at Kindergarten ten minutes before the door would open. I stood there, shivering. Chilled to my very core. I knew I didn’t have time to drive the car home and then walk back to the Kindergarten, get my child ready and sit us both on the 12:15 bus which, I’d arranged, as an extra treat, to meet my husband on. We’d agreed to lunch together with the small one.

Yep. The weather page read at that moment ‘feels like -10°C’ and we’d agreed to do the clever thing, and take our daughter for her favourite food: sushi.

Few people had the same idea, it has to be said. There were only three full tables in the restaurant including ours but we managed to keep them busy. Akasha dropped and smashed an almost full glass of apple juice mixed with lemonade upon their once un-sticky floor.

I think they noticed my shattered nerves, or perhaps it was actually my frostbitten body that did it, whatever, they came over – bearing free coffee.

We apologized with intensity and left a large tip along with the shards of glass behind us.

We waited around for a few minutes then waved the man of the house off as he boarded his bus.

Upward and onward to the museum.

I thought it would be small and over briefly but I had to drag a six year old out at closing time. She could only be persuaded to leave the building by promises of returning soon and being smacked by the realization that the workers had themselves homes to go to and children to see. Although, I suspect in all honesty, that most of their children would have already left home by now. But the children thing still works for Akasha, so I still use it. She hasn’t progressed much in the guessing age abilities yet. I know this because I played a game with her recently in which I asked her if she thought the OAP along our street was older or younger than Mummy she clearly and excitedly yelled out “younger”. I know my rash has taken over my face, but please?!?

As the museum trip had taken longer than expected I had taken a slight panic attack about the older children, who had late school, and so I called my husband to take responsibility on that front. The charge on my mobile was yet again running out and so I couldn’t phone backwards and forwards. He also had to get home to prepare himself for the one-in-Strasbourg’s parent evening.

Sitting on the bus on the way home finally, my mobile rang, but refused to let me answer since I didn’t have enough juice. I could see my husband had called. That he had left a message. But I couldn’t get into it or call him back.

I felt nervous as my daughter quizzed me about her future school days, “What should I do Mummy, if someone accidentally punches me in the eye at school?”

To be clear, I wasn’t worrying about someone accidentally punching her in the eye. As I told her, I don’t think, statistically, that that is very likely to happen. But if it should, she could just go and tell the teacher. (Although, Lori did once get a crutch in the mouth when she was just walking along, minding her own business, down the school corridor. She did require medical treatment. I didn’t have the car as my husband had needed it for work, and because I live approximately 2km from school, the poor teacher had to take her to the doctor. I say poor because when they finally arrived at my door, Lori stood there, face covered in blood and with a thick lip and the teacher stood there, chalk white repeating the words, “She can scream really loudly…” over and over in some kind of shocked trance.) I was worried why my husband had called. Had something happened? Was he at home? Were the children home alone? Had he missed the bus?

We descended from the bus and shivered all the way to Kindergarten, where Akasha had a sudden burst of energy and started racing towards the car.

That’s when I heard the screams. And wails.

“The car’s been stolen!”

I ran after her and panic engulfed me.

Why had I abandoned the car at Kindergarten?

Had I locked the car?

How would we manage without the car?

How do I get in touch with the insurance?

Why do I always forget to charge my mobile phone?

How would Reini get to the parent evening?

Then my brain clicked a little.

I took the hand of the despairing one and dragged her in the direction of home. “Perhaps Daddy’s taken the car,” I proposed, “Perhaps he’s already off to the parent evening. I told him where I left the car at lunch, do you remember? And that would explain his call.”

I chatted as she whined most of the way home. We approached the house. The lights blazed but no car could be seen outside.

We entered the house to two cheery children. Papa had just left the building and the merry ones were about to set off to Fire Service Training.

Importantly: he had the car.

I’d forgotten about Fire Service. More one-to-one-time spotted an ever-enthusiastic-fourth-child.

I abandoned the idea of a bone-warming-bath and settled down next to her on the sofa to watch house programmes. (I’ve carefully nurtured the nosey instinct in her, so much so, she actually once opened the cupboards in someone’s house we were invited to – for a birthday party – needless to say, we weren’t invited back.)

◊◊◊

Things aren’t going swimmingly at the moment.

I think, perhaps, I spend too much time in the company of children.

I looked at the bomb site and told the young ones that there would be no lunch unless they cleared the mess from the table. (Joni being in Strasbourg and Lori being at her drama class.)

Their tummies rumblingly persuaded them and we finally sat down to lunch.

The conversation went something like this:

“Would you like to try some of this, Akasha?” I pointed to a pot of fig mustard on the table.

“OK… Yuck it’s too spicy!!”

“Of course it is, it’s mustard. You don’t like mustard. Ooh it’s really spicy, I think I just got a bit of chili!” responded her brother.

My head was slightly furrowed at that point, “It’s fig mustard. There’s not any chili in it.”

“Have I tried mustard before?” wondered the smallest person in the house.

I changed the subject slightly, “Can you guess which country this mustard was made in?”

Aden blurted, “Germany?”

Me, “No…”

“Afghanistan???” Keenly.

“No. Could you sit properly on your chair please.”

Aden was swinging his chair to the side, thus hovering diagonally across from his plate.

Unsurprisingly, the ADHD one was incredibly surprised to learn that the mustard was made in our neighbouring country: Switzerland.

The cheese, the butter, the drinks were all analyzed to see where they originated. Then he turned to his full glass.

I had a little flashback to yesterday’s lunch and stretched out my hand quickly.

“Yesterday Akasha smashed a glass, didn’t you Akasha?”

“I smashed a light bulb at Fire Service. It was really cool. It exploded (inclusive exploding noises). It wasn’t a good idea to wash the fire engine outside though. The water froze up and we had to scrape it off (accompanied by noises and rigorous scraping gestures).” Aden revealed with much excitement.

“Could you sit nicely on your chair please, Aden?” The chair was swinging quite vigorously and I could see him landing, quite possibly with half the table contents, on the floor.

“What’s a cubic millimetre?” Aden suddenly quizzed.

“It’s a three dimensional measurement.”

???

“A one dimensional measurement would be…” I glanced around the table, then picked up a tub of soya margarine (made in Germany), “this side of the carton. A two dimensional measurement, like centimetre squared would be this side times this side to calculate how big this area is. And a three dimensional measurement, like cubic millimetre would be this side times this side times this side and that calculation would tell you the space in the whole carton.”

“Like the size of a room?”

“Yes!” I enthused.

“Can I go to bed? I feel tired now.”

“Yes.” I knock back another swig of cola, my last attempt at staying awake. I know he’s off to his room to do something. But I’m genuinely too tired to ask what.

He leaves the room.

“Why don’t you whistle?” demands a sweet, but, well, demanding Akasha.

I should have said:

I’m too busy.

I’m too busy dragging children from museums and being friendly to the environment.

I’m too busy sitting on the loo and telling people to do their homework and to sit on their chair properly and thinking up cool ideas for English lessons.

I’m too busy listening to the storyteller in my head.

I’m too busy being refused buns in coffee shops and washing mud splattered fire suits and driving back and forth to ballet classes and applauding completed puzzles and baking homemade banana loaf and avoiding mirrors revealing face rashes and it may just be, that lately, I got a little bit too stressed to whistle.

I’m sorry baby.

But I was always crap at whistling, how about I try singing a little more instead?

The Health Notice


In recent years I’ve been diagnosed as ‘possible Crohn’s’ to ‘probable Crohn’s’ to ‘perhaps Crohn’s’ to ‘positively Crohn’s’.

It’s been a somewhat winding road and, I think, in some ways that hasn’t been a bad thing. At first, I was just relieved that I wasn’t suffering from ‘probable or positive bowel cancer’ (up there with best Christmas presents of all time). Then, quite quickly,  I shifted right over into denial, which, truth be told could have challenged the behaviour of any unruly teen (NO! I DO NOT HAVE CROHN’S! I REFUSE TO HAVE CROHN’S! SOD OFF WITH YOU!!!) Slowly, I wandered toward acceptance. OK, with the odd, ‘I think I’ve magically recovered’ moment.

Now I have a new doctor, and a full diagnosis, and although I wouldn’t exactly describe myself as delighted, I am OK with the diagnosis.

But then I started having issues with my joints. Particularly in my fingers.

It’s made typing difficult and that’s one of the reasons I’m hardly writing at the moment.

The great news is that the good doc is filling me up with medicine which should tell my immune system to take a break and stop attacking my bowel and my joints.

As you can imagine I squealed, “Yippee!” And handed over the arm that already looks like a pin cushion to test and retest and retest (many times again) my blood. Note to world: if you need an extra to play the role of a junkie in your next film/TV show/play – I’m your girl.

It will take three months or so before I’ll know if it’s working but so far I can report that: my five-year old has stopped asking if I’m pregnant (as my tummy only looks empty or full and not as if someone rammed a punch balloon in through my belly button), and the instances of a numb bum and the consequential funny walk that could impress John Cleese, have been significantly reduced by curtailed toilet sitting.

But my fingers are still rebelling against me.

I’ve informed them though: this is 2012, if the drugs don’t work, I can always resort to dictation software!

P.S. Please don’t worry about me getting bored. Immune suppressants really do what they say on the box. They wreck suppress your immune system. I am constantly being entertained. Todays new illness: a stye. (Can you hear me whooping?)