Monday, 25 April 2011

Tim Booth gig, April 24th 2011

Anyone who knows me knows I am a massive, massive fan of the band James and their lead singer Tim Booth (I've written about them before, here).

Last night Tim Booth came to Birmingham, England, and my dad & I had VIP tickets (which entitled us to watch the soundcheck, and to get into the gig first). There were about 25 or so people with VIP tickets.

The soundcheck was awesome; they played 4 songs and chatted in between. Despite the coordinator insisting we all got out the venue ASAP, we politely asked the band members to sign our passes and for a photo with Tim. There was a Canadian couple who had flown in especially for his tour, so Tim spent a few minutes talking to them before having his photo taken with my dad and I:

Dad, Tim and I
Having been a fan for such a long time, it was such a pleasure to meet him.

I'm still on cloud 9, so the highlights were - in no particular order:

- seeing the violinis/guitarist Saul, who also plays with James outside the venue (he dodged fans, but it was cool to see him)
- getting a setlist, and Tim's lyric prompt sheet!
- buying 2 signed special edition copies of his latest album, Love Life
- meeting a really cool couple who ended up being really protective of me when I had a hypo and taking a real interest in my pump (I didn't want to talk about diabetes really last night, but sometimes you can't hide it)
- standing at the very front right in front of Tim's microphone, singing and dancing along to all the songs
- singing into the microphone with another lady (who had an amazing voice and was really in the moment, it was really cool)
- after said singing, I said 'thankyou' to Tim when the music had died down - he looked at me and winked!! Then he held my gaze (see: great big grin) for a few seconds
- seeing a woman getting all the band to sign her back, then announcing she was having their signatures tattooed on this week!!
- Tim has changed his FB profile photo to one with me in it!

that's me on the left...well, half my face!

And the very very best bit?! I get to do this all again next Tuesday in London!!!!

Tuesday, 19 April 2011

20 years - from a mum's perspective

I am so, so honoured that my mum took the time to write this. Please, please share this everywhere you can - I think she gets the message across so clearly about why we need a cure so badly (I know I'm biased as she's my mum, but I think it's great).



Twenty years ago today my life changed forever, taking me on a journey which I never dreamt I would make, did not want to make and hated every minute of it.

Siobhan had been unwell on and off, the usual viruses that 2 year olds have nothing serious yet there was a nagging doubt that something was not right. She started to have an unquestionable thirst, she was wetting herself having previously been potty trained, and was generally miserable. 

We had been to the GP at various times and nothing conclusive was found, and then we changed GP.  I made an appointment to see him. I had read my friend’s ‘Readers Digest Book of Family Medicine’ (no internet at home in those days!) and between us we agreed that diabetes was a possibility. Anyway, ready with my list of symptoms I took Siobhan and her sister round to our GP for our appointment, our first meeting which was to be life changing for my family and a learning experience for my GP. He listened patiently whilst I described Siobhan’s symptoms and then asked if she would be able to produce a urine sample which she dutifully did. After testing, he calmly said that I should go home and pack my bags ready for hospital admission as she had diabetes.

Incidentally that would be the last time she would produce a urine sample for approximately 15 years, as from that time on she flatly refused to cooperate with that request as part of her way of stamping her feet against this terrible injustice.

So I left the surgery, walked home in a haze to ring my family to let them know what had happened.  In those days there were no mobile phones, and I felt as though I was taking part in a film, this was not happening to me and it hurt me to look at my beautiful daughter knowing that something had gone dreadfully wrong. She was broken and I could not mend it for her, what kind of mother was I?Should I have breast fed her for longer? Did she have too much sugar in her diet? Why had this happened, she did not deserve it?

The following week or so is very much a blur; I had Siobhan’s sister to look after so we had a routine of Dad staying at night with Siobhan at the hospital whilst I tried to maintain a routine with her sister. We had to learn how to inject her twice a day and how to check blood sugars using her tiny toes to pinch and squeeze. 

The consultant took us into a room one afternoon to tell us officially that she had type 1 diabetes and as I listened I knew he was expecting me to cry but I couldn’t.  I thought up until then that it was a big mistake and she would get better but now it was official. All I could sayto break the awkward silence was that she had a birthday party planned in 2 weeks. I think that was my way of saying this was not convenient, and the response was that I could use cream cheese instead of icing on the cake.A nurse gave me a leaflet on the British Diabetic Association and that was that.

We were taught how to count portions of carbohydrate and the dietician worked out how many she could have at each meal then snacks in between .They kept Siobhan in for a few days whilst we got used to injecting her and they also induced a hypo so that we knew what to look out for, quite barbaric looking back but we just accepted it as the right thing to do at the time. Our family came to visit bring lots of diabetic products which we quickly learnt when we were at home were expensive, caused diarrhoea and did not particularly taste nice.

When word got around people tried to say the right thing but inevitable said the wrong thing in my eyes. I was shocked and angry and could not see anything positive in this experience.  The fact that choice had been taken away from my daughter made me sad and angry; she could not have a HGV licence, or join the fire brigade. How would she travel, get a job or enjoy life with this terrible illness?

 People said things such as:

It’s a good job you are a nurse”………not, I did not do my training to inject my daughter twice a day, it was not natural

I could not inject my child”…………….yes you could, otherwise she will die, you do not have a choice

God chose you to have a diabetic child because he knew you could cope”……………………….well I’m not coping so thanks for the complement but I want my daughter back without the diabetes

Be grateful you are not in Africa, they do not have insulin there”……………………true but at this moment in time I only care about my daughter so I have no interest in health care systems around the world.

So that was the start of the journey. Our GP saved Siobhan’s life, there were no other diabetic children in the practice and this was the first time he had made the diagnosis in his career so I’m eternally grateful that he listened to me and acted on my instincts. I still thank him with a card on special occasions such as her 21st birthday and I think it is important to remind the medical profession of the impact of their care.

Today, celebrating her 2oth year of living with diabetes I can reflect on the experience more positively. My daughter has got on with her life despite having diabetes;she has travelled around Europe and worked in America and Paris, experiencing a ‘normal ‘life which I never thought would be possible. That wicked disease has moulded her into a caring and sensitive woman who just gets on with it. She has had relationships and the usual ups and downs of life itself and rarely complains. Her sister has been an integral part of this, where I have been protective and scared; she has often reminded me that she will be fine. They have a good relationship with a lot of love and laughter, and I was lucky that there were no repercussions as I inevitably had to give more attention at times to Siobhan and her condition, but her sister keeps her in check often ribbing about her ‘dysfunctional pancreas’ .

My message to all you parents out there is simple. It will get easier, they will survive and equally important, you will survive.

Monday, 18 April 2011

20 years

Tomorrow, April 19th, marks 20 years to the day since I was diagnosed with type 1.

I've been putting off thinking about it. I'm pretty diabetes'd out right now. I don't know if I can cope with thinking about it too much - the what ifs, the whys, the if onlys.

I deal pretty well with it most of the time. I've worked out that on average, I have 2 'moments' a year - which usually end up with me in tears in my bed watching one of my favourite films in an attempt to distract myself. A bit like Joe Solo's diabetes duvet days. Inevitably, after a couple of hours, I pull myself together, I get my head back on straight, and life continues (and after all the awful news stories this week, I am glad that I have that life to continue).

I spent yesterday at the London marathon, cheering on the JDRF runners. All 150something of them, they were amazing. But the turning moment of my day was around 10am, when a lady came up to me and asked if I had a spare JDRF tshirt. I happily dug one out a box as she said, "my friend is running in memory of my daughter."

And I nearly burst into tears there. Because there should be no 'in memories' (because god forbid, that could be words that pass my mum's lips one day). There should be no family losing a member to type 1. This is why we need the cure so badly.

And this is why tomorrow, I am going to raise a toast to myself, for 20 years and still winning. The battle will never be over, but I am winning it. I'm pretty tired of the battle now though, to tell you the truth.

But the MAIN reason I came to post today was to ask that tomorrow, you read an extra special post I'm going to put up. A while ago, I asked my mum if she would write a blog post about the day I was diagnosed. At first she politely said no, that it would be too upsetting. I persisted in my usual manner, and I am so proud to be able to put up her post tomorrow. She has written it so well, and I was in floods of tears reading it. I'm also going to ask something really cheeky: please, if you read it, will you retweet/share it/link to it on whatever social media platform you use? I really want as many people to read it so they can understand why we need a cure so badly.

Thanks. I'll blog later this week. I need to get my head around all the emotions I'm feeling to do with 20 years. I know so many people that are hitting way past that mark, but this is the first 'big' number I've reached and noticed.

Saturday, 16 April 2011

The D community, offline

There's nothing I like better than a good old meet up with other people who are pancreatically challenged.

Last Saturday was the 3 year birthday of Circle D, a support group for people living with diabetes in Kent, England. The day was a typical d meet up: in a pub, lots of light drinking, food, and chatting for hours and hours and hours. Lots of people also came from the Diabetes Support forums. All photos are courtesy of Shelley who organised the day!

The arts & crafts corner went down well!

Our two 'naked chefs' - John made ginger & orange chocolate cake
and Lucian made New York cheesecake
Shelley was chief of D police

Cheers Circle D!
In the tube station on our way home; approx 11.30pm
It was great to see so many people - lots of old and new faces. A big wave to Andrew & little Frank, who celebrated his 4 and 3/4 birthday with us ;)

Today I got to see more lovely d people, this time in the form of 3 mums from the Children With Diabetes UK emailing list. We spent the day in Brighton, eating lots and chatting loads. What more could I want?!

(well, to tell the truth I could have done with nutritional information instead of guessing it - I have been high ever since!)

Tuesday, 12 April 2011

Officially pumping Animas 2020

Last week, I travelled back to my hospital (thank goodness for flexitime at work!) to pick up my new pump. Things have moved fast over the past few weeks, with funding being confirmed, my pump being ordered the next day, and me collecting it about a week later.

I'm still adjusting to wear it. I've worn a Medtronic for the last 6 months and I could operate that with my eyes shut. Having a new pump, as easy as it is to use, is making me much more aware of what I'm doing with it! I have to think about each time I push a button, as I'm not totally familiar with it just yet.

I didn't get much training from my health care team on how to use the pump, so a lot of things I'm discovering slowly. It took me a week to work out how to get the clip off (confession: I had to be shown). I only discovered the bolus button 2 days ago! Perhaps if I'd read the instruction manual thoroughly I would have found these things earlier, but I've always been more of a button pusher than a page turner when it comes to new gadgets!