Type 1 Be Proud And Be Heard!

We have come along way in a few months. Loud, proud and own being Type 1.

   Own it & Show it

Proud & Party in Style

If you have read my previous post you will know we had hit the delightful T1 rocky road and Claudia was finding life very challenging. It was a devastating time watching 1 of our daughters struggle to manage her emotions and medical condition. We have shared tears, laughter and anger.

In July we attended clinic. It was a huge relief to have a HbA1c of 6.5%. If only it was as simple as that. We are still waiting to be seen by CAMHs, yes 5 months on, we are still on a waiting list with no appointment in sight.

I look back and wonder how have we managed to turn this around? The big question, have we turned the corner and jumped back on the right path? Only time will tell, I am not a nurse or child psychologist. I am an everyday mum who was thrown into the turbulent  life of Type 1.We also have to keep in mind we have 4 other daughters who need our attention, understanding and love. This can be difficult on occasions.

As my wonderful husband told the team it has been exceptionally hard work. Lot's of listening and understanding. To be honest sometimes I didn't understand. Ultimately I don't know how Claudia feels as I am not Type 1 & Coeliac. We have agreed an action plan and I have accepted that Claudia at the age of 12, needs to have more say in how she manages her daily routine. I was laughing to myself when clinic told Claudia she was testing her blood glucose  too much. Claudia challenged the Consultant and said no I am not. It was a landmark day, Claudia may have been testing in their opinion too much, however this is what Claudia needs to do currently. We have to listen and understand why or just accept on some occasions, in order to support.

Message to Clinician's you may not agree, you may have other thoughts, however  listen to the people living the life. They are not a statistic, they have feelings and thoughts and ultimately it's their body. Guidance is good but constant criticism and striving for perfection with such a complex condition is not healthy. In my opinion Mental Wellbeing is as vital as having a health body. 1 compliments the other.

I have to thank my friends in the T1 community who have supported me and reassured me that what Claudia was going through was "part of the T1 journey" and growing up.

Don't say it..... Zip it......

The first week of the summer holidays we spent surfing in Cornwall. Insulin pump, sand and water not a brilliant combination. I have to say we didn't have to do any extra cannula changes. It's at times like this I wish I was like zippy off rainbow. How many times did I open my mouth, but then realised that she just needed to have fun.


Claudia made some friends, at first they didn't ask any question's about her pump, even though they kept looking at it. As the days went by they asked more and more questions and were really interested and Claudia told them all about carb counting, insulin etc.

Claudia left, with her new friends.

Claudia loved surfing and spent hours in the water. Yes I did go surfing! Yes my husband did film it!
We had an amazing holiday but very different as Claudia was in control, even saying if she wanted her CGM on. Deep breathing from me required. It has played havoc with my OCD diabetes and the
fact I am such a control freak! ahhhh........ 

 

Bay Watch UK.



 

How many times did I have a little panic(huge, massive panic), whilst she was surfing and running round wild? Far too many, sadly that is our "normal" everyday life now. I just have to visit the hairdressers more often to cover the grey.

As I am writing this I am thinking about packing, we are going to Cardiff tomorrow for a week. My head is on T1 overload thinking of every eventuality, funny in some respects as we are only going to Cardiff. I am researching gluten free restaurants/cafe's in the area. The top box will be full of T1 & Coeliac necessities. I will have enough stuff to open a shop on the side of the road.

This is the first time I have worked full time and managed 5 children during the summer holidays. It's been just plain mad, mad, bonkers. I have to thank my niece for helping and Julie my friend. Donald my husband has tried to work from home and look after the girls without success due to the noise levels. As I left for work the other morning, there were 2 body boards hanging from the tree, the swing had been made into a den, I had to dodge various, scooters and bikes. I thought the girls imaginations are great but they make such a mess. Then as I opened the gate I heard this screech I am 9.8 I am putting a correction in. Ok I said and jumped into the peaceful bliss of my car and went to work. Leaving the chaos behind.

Hello to anyone in the Cardiff area, take cover as the Allison's are arriving tomorrow! If you can't see us I am sure you will hear us.