 |
| In my Box: A cure for Type 1 & Coeliac. Until That is found equal access to pumps & cgm with a supportive hospital service & education system. |
I have been a little quiet lately!! Normally I am on constant auto rant!!
I am a true mouthy Northern Lass and proud.
I remember when Claudia was first diagnosed. The Diabetes Nurse Specialist said "in a few years time, it will all be fine". Claudia has been diagnosed nearly four years.It's not fine!!
Recently I have been struggling with my thoughts. I still don't like Type 1 Diabetes and that's putting it politely.
Yes I have accepted Claudia has Type 1 & Coeliac. So why do I on many occasions feel so sad and low?
Is it:
The constant battle of trying to maintain control
HbA1c challenge (should be an Olympic sport! it's that hard)
The sleepless nights
The battle with education
The added temper tantrums that hypo's & hyper's bring
The dread when you know the the sickness or flu virus is rife in schools
Constant carb counting & weighing of food
Cannula changes and finger pricks
The tears and the "I don't like diabetes & it's not fair" (Can't argue with that)
Stock ordering & check
Bag packing
That's just a few of the day to day concerns. Every now and again I get sad and really wish I didn't have to consider any of the above.In fact being honest, it's probably everyday.
So all in all I have been a miserable so and so!!
At some point you have to drag yourself out of that pit and it can be a challenge.
My help came from an unusual source this time. Isabella was at the hospital having some bloods taken along with a Bone Density Scan.
Isabella was fine with the scan, but when it comes to having blood taken she really gets distressed.The nurse that was taking the bloods was lovely. I could see a tear in her eye as she actually succeeded in persuading Isabella to have her blood taken. After she had finished she said "if I had known she was going to get upset I would have sent her up to the childrens' dept. I don't like taking blood off children" I appreciated her honesty and it touched my heart. We are all human.
I said, I am glad you have said that. My little girl hasType 1 and I have to change her cannula every 4th morning. It still upsets me. The nurse said I can completely understand that!!
People assume that, the more you do something, the less it bothers you or has less impact on your life. For some people that is true, but not in my case.
Most days I am fine, but I have to admit, I think it will always bother me putting cannulas in Claudia. Sometimes I feel afraid to say actually nearly 4 years on, I find Type 1 & Coeliac challenging. Yes it still can reduce me to tears.
Meanwhile it is half-term. I can't begin to tell you how wild my 5 lovelies are !!!! Currently running around the house playing hide and seek.
Prince the Giant House Rabbit is joining in by throwing his ball and doing the mad hop across the rugs.
Nanny & Pops are due to arrive shortly, this will send the girls into excitement overdrive.
I am sat here blogging in my dressing gown, thinking I really should get dressed before they arrive.
Life for is "normal " yet not, if that makes sense!!
Ps In my box: is also a Black Porche 911, house with a swimming pool, personal trainer & shopper and a full time nurse/nanny.
I think you feel the way you are because you're a parent. Neither of my children are type 1's but my daughter has severe allergies to coconut and penicillin. Both of these common items can kill her. She is also hypoglycemic. She's an adult, no longer living near us and I still worry about her.
ReplyDeleteI do know that in the 46 years that I've been a type 1, there have been advances. So you have to believe there will be more advances both in the diabetes and the coeliacs.
I think you are wonderful the way you cope, my daughter has Type1 and coeliac and when she was diagnosed with coeliac after having diabetes for ten years I cried thinking what else is she going to get. I worry about her still all the time and she is now 25. Keep up the good work x
ReplyDeleteThere is a quiet place inside you to rest a bit. Close your eyes and walk down the soft path toward the lake where you hear the birds singing and the water lapping on the shore and smell the sweetness of the earth decorated in flowers. They are for you and this space is yours:)
ReplyDelete