Thursday, 22 September 2011

How is referring someone so difficult?!

Last month I went to see a GP at my GP surgery. He happily agreed to refer me to a local hospital for my diabetes care. I then received a letter through the post a few days later to say I had been referred to the Choose & Book system and I should book my appointment online.

I tried to do this, only to be told there were no appointments available to be booked and I should wait to be contacted by the hospital by today. If they didn't contact me, I should ring my GP back.

Me being me, I decided to cut out the middle man and called the hospital's appointment line. I explained what had happened, and the woman very snarkily told me that ACTUALLY, my GP hadn't referred me directly, so they couldn't book me an appointment over the phone.

I am SO frustrated with the GP I saw. How hard is it to write a letter to the hospital, instead of sending me via the Choose & Book system?! It's not like I want to see a consultant for fun!

The other amazingly annoying thing is that I am due to be upgraded to the Animas Vibe, which Animas have said they will do as soon as I have an appointment with a consultant (having the appointment means I can see a DSN beforehand, and the Animas rep will set me up on the Vibe). So this means I am being delayed again onto getting the Vibe!


Wednesday, 21 September 2011


From Our Diabetic Life.

"Diabetes is a sailboat. 

13 years ago I was told to put my child in a sailboat. Alone. 

He was to journey out to sea and I was not allowed to escort him.

You can imagine the fight I put up. I yelled and pleaded. I dropped to my knees and bargained with God. I had a fit. But alas, my flailing was fruitless...he was literally taken out of my arms and thrown into the boat. I was given no choice. He had Type 1 Diabetes and there was no going back. He could not stay on shore. He could not live without the was part of him now.

I watched the boat go out to sea and I cried for what felt like forever. The world seemed to be in constant motion, while I was stuck on pause...mourning his separation from the shore.

The viciousness of the waves were horrifying.

My child was helpless.

I was helpless.
I would have done anything to be on that boat. I willed his diabetes to enter my body so I could switch places with him. But apparently, that isn't how it works.


I was given two tools to help my son. A telescope and limited control over the weather.

I have vigilantly had my eye set to that telescope for 13 years. There have been long stretches when I wouldn't leave the scope. I wouldn't shower. I wouldn't eat. 

I have had comments throughout the years that my attention would be better placed somewhere other than the boat.

What they don't understand is that my child is on that boat. My heart. My soul. How could I ever walk away from my scope?

My one advantage is, with insulin and food, I can sometimes control the weather. I can smooth the waves and bring him close to shore. On those days it almost feels he is on land with me. On those days we dance together and laugh, and joke that the ocean has nothing on us.

But other days the storms come in out of nowhere. The black clouds close in and the numbers ebb and flow with the powerful tide. On those days, I watch my son ride those waves and I spend the day at my scope...determined to change the color of the clouds. If his boat capsized...I don't know what I would do. 

Sure...he is above water. Sure...he is surviving. But on the stormier days his sea sickness weighs so heavy on my shoulders, I'm sure I am going to run out of strength, and one day drown into despair myself.

My son has grown up on his boat, and I am in awe every day of his constant vigilance, and his nimble control of his craft. He is an able captain now. He can hoist the sail, he can watch for the storm clouds. He can batten down the hatches. He can steer that boat away from immediate danger...he FEELS the sea. His intuition is inspiring.

Three boats I have set out to sea. It does not get easier. Every boat I have released has killed me a little bit inside. My husband and I live our lives on the shore waiting for storms, hoping for sun...watching each and every wave.

It is exhausting. It is tedious.

But on the summerlike days, when the boys drift closer to our reality...they hitch their boats together. 

With their boats abreast, we can sit together and watch the sun set on the horizon and know that we can do this. We see the other boats adrift in the ocean, and their resolve and optimism lifts our spirits.

A bit ironic that the most amazing views...the most amazing perspectives...can be seen only from a boat.

No, it isn't easy. It isn't fair. The children with their feet on land are behind us, ever present...running around with no cares.

They don't have an entire craft to navigate. If a storm comes in they can simply get in their cars and their parents can drive them home. 

They are not required to have constant courage or patience. They are not required to grow up quickly to take on captaining their own ship.

They are free to run.

Freedom. A gift my boys yearn for.

Freedom from navigating. Freedom from weather.

Diabetes is a sailboat.

Adrift in the sea.

The boats rock gently tonight. I can see my sons at the helms. Their silhouettes against the nights sky. 

Each one, every bit a hero.

We pray that one day they may set their feet on the sandy shore and rest.

That one day they may find respite from their journey.

Type 1 Diabetes is a sailboat.

And 40 new sailboats take off from the shore, every day. 

They aren't just boats underway with numbers in their wake...they are families lives, changed forever. 

They are significant.

Every single sailboat is significant.

And every captain, an inspiration."

Sunday, 18 September 2011

Bad advocate.

Today I was a bad advocate. I'll put my hands up and admit it. I didn't deal with the situation in the way I could or should have but we all have our limits - and I guess mine were reached today!

I went to get my hair cut this morning. I like my hairdressers because they have a 3D, upside-down desert theme thing stuck on their ceiling. It's weird but keeps me entertained.

I really, really hate having my hair cut for one huge reason: the small talk hairdressers insist on. I know it's part of every hairdressing trip anyone ever makes, but it makes me soooo uncomfortable and awkward. Anyway - the guy asked me about my weekend and I said to him I'd been to a charity event yesterday (Flying With Diabetes). He asked me about why I went etc, and told him I have type 1 diabetes. The following is a summary of the conversation that occurred.

"Have you tried a diet?"

"No, type 1 diabetes can't be controlled using diet, I'm insulin dependent."

"Oh but you should try this one - it's called Simply Raw, people came off insulin in a week." (A quick googles tells me THIS is what he's probably talking about.)

"The people taking part would have had type 2 diabetes, which you can use diet to control."

"No, it was definitely type 1 - they came off insulin." (at this point I was ready to walk out, if only he hadn't been halfway through the hair cut...)

"People with type 2 also use insulin as a treatment, and I can promise you they would not have been type 1 - I use an insulin pump to give me insulin - people with type 1 would die without insulin."

At this point he backed down with "I am sorry".

I was really wound up by his comments - in his defence I guess he really didn't know what he was talking about, but it frustrated me so much. I got kind of shirty with him when telling him it was definitely people with type 2 and he then spent the rest of the hair cut trying to be chummy chummy with me. I could have handled that so much better, but I didn't.

Sigh. I'll keep going back, because they do great haircuts (although I wish I'd had it a bit shorter...maybe I'll go back and get them to reign in the longest layers).

Friday, 9 September 2011


Argh! I did it! I got a place running the London Marathon 2012 for the Juvenile Diabetes Research Foundation!! I'd appreciate keeping in touch with people who run regularly.

I am not so scared of the distance, more of the toll it is going to take on my diabetes. I'm also pretty excited to see what that toll is; how is my body going to react? I feel that I can cope with the stresses and pain of the running...I'm more concerned with the highs, the lows and everything in between.

I have trainers. I have shorts and tshirts to run in.

I would love to invest in an mp3 player of some sort; I want an ipod but my uber tight budget won't allow for it. The one I have at the moment is kind of okay, but is small and not great for setting up playlists and stuff. I just read the post Chris wrote about music and running, and I guess this is another curve I'll be learning; what motivates me? Do I want to hear the sound of nature London as I run? Would a playlist of music be best, or a load of podcasts?

I've got 3 people who have volunteered to run with me, so I have no excuses. I also have a park pretty nearby, and I imagine I'll be getting to know it very well very soon...

I have a short attention span and get distracted really easily, and I know I will need to keep mixing things up to keep myself going. When I get onto doing much longer runs, I think I will start investigating getting out of London to do those runs. Brighton? Norfolk? Kent?

And so it begins...