Thursday, 26 April 2012

When all else fails, teach people.

Chiari Carnival
Theme: When It Rains, It Pours.
Topic: Dealing with difficult people in addition to dealing with a difficult illness.

So since my chiari diagnoses it seems I attract difficult people. I need a sign, a big one, with flashing lights and maybe a loud noise that reads "I HAVE SOMETHING WRONG WITH ME.....HONESTLY"

I remember a day in the middle of summer 2010. I nipped to the shop to pick up some fish and chips. It was a nice day and I was taking it slowly, had a wonder around the supermarket across the road whilst waiting for the chippy to quieten down. Half way round the shop I noticed a lady, about 55 following me. She was looking at me strangely, but I didn't think too much of it. Maybe I had something on my face.
I went to the chip shop and the lady went and read a sign outside the church. Came out and she was still there, still looking at me. By now I was feeling a little strange. I walked to my car and as I was strapping Jacob into his car seat in the back of the car I heard a shout. Shockingly it was the lady.

"Hey, what do you think you are doing?" She shouted, with everyone nearby turning around.
"I'm sorry, what?" I replied, choosing not to shout.
"What do you think you are doing?" Raising her voice further.
"Going home" I replied, worrying for a second I had magically managed to open someone else's car and not noticed.
"No, you are not. If you get in the car and attempt to move, I will phone the police"
By this point I had walked a few steps towards her, not to be threatening, but to look at my number plate. Sighing with relief when I saw my distinctive number plate.
"This is my car, and I am fully insured. I am not sure what the problem is." I said, suddenly confused again after my short moment of relief.
"Drinking and driving invalidates your insurance and driving, not only with a small child in the car, but in a area near a school is dangerous" She said shouting again and clearly enjoying her small audience, and her moment of public service.
"I don't drink" I said, suddenly realising what was happening.
"I watched you" She replied, "I saw you almost fall over in Tesco, on more than one occasion and you were walking very slowly"
"I have a condition that causes me to wobble and stumble occasionally."
"Really?" She said, looking around at her audience who were looking less mob like and more worried about what was going to happen
"Yes", I said
"I still think I should call the police" She said, quieter now.
"Call the police" I said "However, would you bother if I was older? I may only be 21 but I could still be ill. I have something called Chiari Malformation. It causes the lower part of your brain to slip out of the base of your skull. The lower part of your brain controls balance, hence my falling. I am waiting to have brain surgery, to try and stop me getting worse. I am sick and the police are not the people to cure me. However, if you think they could help me right now, maybe train my brain to be smaller or teach it to balance me, then go ahead. However, police work is not quite neurosurgery"
I looked around at the 6 or 7 people who were looking at me, mouths open. I suddenly felt embarrassed, I was rude and didn't need to speak to a stranger in that way. I pride myself on being polite. However, my guilt vanished in a second. The audience clapped, congratulated me and walked away. 7 more people who knew about chiari, I though.
"Sorry" mumble the lady, suddenly quite, for the first time.

So, how did I deal with a difficult person. Well, I educated them. I told more people about chiari, people who may well have gone home and told family about my outburst. Sure, they probably didn't remember the name of chiari, or look up about it. However, I helped them change their mindset about people with difficulties. So, when all else fails, I do what I do everyday of my life, I teach people!

Wednesday, 25 April 2012

Another member of the Gibbons family!

World, meet Grace Lexi Louise Gibbons. Born 25th April 2012, at 4.17pm weighing 6lb 4oz. Born 4 days early but perfectly happy. I am now a proud Aunty and couldn't be happier! She is wonderfully and as cute as a button. 5 hours old and I have already posted 2 status' on facebook about her, 40 photos and now a blog. I just wanna smoosh her!
Photo above shows my brother and his fiancee, the proud parents!

Friday, 20 April 2012

funny list

I found a list that kind of describes my symptoms/problems but in a more light hearted way

You know you have chiari when

You can spell words like "syringomyelia" and "chiari" without thinking about it.

You sneeze and you feel like someone hit you in the back of the head with a bat.

Someone mentions "tonsil" and you immediatly assume they're talking about their cerebellum rather than their throat.

Your pride isn't the only thing thats hard to swallow!

You can honestly say that you have more brains than most people.

You are explaining to your GP what is wrong with you, rather than the other way around.

Someone says It's all in your head, AND THEY'RE RIGHT.

Your biggest concern of having brain surgery is "What will my hair look like?"

You keep looking for that bug that bit you or that hair that is on your arm and sticking you but you never find it!!!

Your brain has a tail.

Monday, 16 April 2012

Back to reality

So, after 2 years, 2 weeks and 2 days off sick, I returned to work today. It felt like I had never, ever been away within about 5 mins. Walked into school, had a few students say "Hey Miss" and that brought me back to 2 years ago, before I ever knew about chiari.
Sent 1st lesson in a meeting, 2nd lesson I walked around the school to get myself reacquainted with it. Break time, I had lots of people asking how I was, lesson 3 I did a big stationary order, lesson 4 I spoke to the school nurse about chiari ect and did a few admin bits to start.
Tomorrow I am observing a few lessons and then on Wednesday I might actually get back in the classroom!
So all in all, a tiering, but successful day! Back again tomorrow!

Thursday, 12 April 2012

Too little sleep

Had 4 hours of very broken sleep. Got woken by Jacob at 7am, took 3 attempts to stand up as I kept falling back down. Went downstairs 2 steps and promptly fell down the remainder of the stairs, carpet burning my arms, back and legs. Think I will stay sitting down for an hour or 2 before getting up. Sat watching children's TV and having a cuddle with my main little man. Makes everything better seeing him grin, so here it is to share to make you all feel better =D


Got a mega headache this evening. I will be getting up in 4 and a half hours and I haven't slept yet. This evening I have taken everything I can, in desperation. Amitryptline, buprenorphine, tramadol, codine, paracetamol, naproxin and nothing has helped.
Got a pressure headache, but the worst is, because it is so high right now, the back of my head where I had my big old bit of skull removed (my dippy bit) is swollen right out and making it hurt right around the edge of my bone, I can literally feel it there, all puffed up. I look like I have a deformed head, I am sure lol.
Wish I could sleep, I was pretty much asleep on Ivanah's sofa at about 2.30 today =/
Going to try and force my body into sleep ready to hang out with Jacob and Ivanah tomorrow, cannie wait =D

Homemade bracelets are back

Making bracelets again, for many conditions, but inspired by chiari. Go check it out.

Wednesday, 11 April 2012

Going back to work

I am going back to work, after 2 years and 16 days I will be returning on Monday. Doing 8.15-12.20 3 days a week for 3 weeks, this might have to change depending on how I manage. Then I will do the following 3 weeks doing a different amount of hours each day and then the first week after June half term I will return full time.
I really hope this works out, as I love my job!! I am very tired at the moment not sleeping tho of course, just feel fatigued constantly, but having my B12 injection on Monday arvo so that should boot me back into normality, I hope.
King's last week was nice, only 4 days in hospital and it was so much better organised than Southampton, everything was done at pace, but not so much so that I felt like I was being rushed out. Not too much to tell, wasn't exciting lol x