It has been a while since I have posted and to tell you the truth it is because T1D has taken a backseat to MS in my life. Being someone who wants to know all about the disease that it attacking my body it takes precedence. However I thought I would jump back into the drivers seat as I was thinking to myself the other day there are differences in managing your own compared to managing someone else's T1D.
The feelings that you have on a day to day basis, the intuition that your body throws you and the ability to know what is coming are just some of the things that make actually living with the disease manageable. Having a 2 year old T1D I keep reminding myself that all of these things and feelings would feel normal at this stage. She wouldn't know that a sudden drain of energy, shakiness, faintness and all the other signs are part of a hypo all she knows is that mum and dad try not to freak out while draining blood from one of her delicate fingers and then once we read the low reading we run around the house and tell her she has to eat something sweet. On the other end of the see saw she also doesn't realise, as she did the other day, that if someone gives her a big bag of lollies like her sisters then she can't just gorge into them because the feelings of sickness, tiredness, thirst and the urgent need to go to the bathroom are not a normal part of "normal" life.
For me I know that if I step out side of the routine and disregard the rules of T1D then I have myself to blame for it. I know that the symptoms of either a high or low will teach me that I really shouldn't have ignored what works and what is good for me. But if I or my wife disregard the rules when it comes to our daughter then it is she that suffers, yes we suffer the pain that any parent will go through when they see their child sick, but she is the one that truly suffers in and out. It frustrates me that even I know the feelings that I have in these circumstances I can't yet get my daughter to understand that the feelings she is having are not normal and are feelings that need action and understanding.
Another interesting fact about knowing and having a history of T1D is that we continue to realise that by knowing the signs of our daughter early and getting her onto a stable regime on the pump we have been able to reinvigorate her pancreas for a longer period of time. This means more natural function and less strain on little organs that are developing at a rapid rate. The "honeymoon period" is frustrating because every day can be different because the ability to know when the pancreas is working and when it isn't is impossible however we know our daughter will that us in the years to come as we are giving her the best start possible.
Living with T1D compared to managing someone else's is challenging. Being able to take notice of signs or changes that seem out of the norm are a day to day, minute to minute , second to second job that left unnoticed just for a minute could mean the difference of a mild hypo and a major one.
My levels are set to a point that I know with little worry, unless something strange has happened like a kinked line or a bad batch of insulin, that I can sleep comfortably through out the night or if I need to miss a meal then I can sit at a comfortable level. It will take time to get there with my daughter but for now and for the foreseeable future we need to test through out the night to make sure she is safe. A matter of hours could mean the difference of a perfect number or a high or low. This sees us have to give 2 hourly blood tests until a time that a clear pattern of stability is formed. With the pancreas still active this will be no time soon.
I look forward to the day where I can teach my daughter what I know so that she will be able to understand what her body is doing at any one time. Even though she will grow up and manage her own T1D we will always be in it together and my wife and I will always worry and be proud of her efforts.
Friday 20 December 2013
Saturday 7 December 2013
A happy interaction....
It is amazing as I contribute to online communities, talk to other parents with children with T1D and even have friends with T1 (even though we don't talk enough) but nothing stands up to speaking to a complete stranger who you connect to instantly because we share this disease.
Today while waiting for my wife to have her nails done I decided to take the kids to the park at the shopping centre. I open the door and the kids run, as usual, to all the fun and excitement that the park brings. Keeping in mind that I needed to make sure that my T1 daughter didn't drop low I decided to take a seat and watch the fun. Upon sitting down I saw a common sight to me but to most people would not even take a second except if they were looking to see if the device that was on the pocket was some sort of pager or MP3 player.
I knew instantly that this person knew what it was like to have a hypo or to be high, from over doing the sugar intake and not weed. It isn't everyday you come across another T1 so I decided to make contact. For a split second the Type ones in the near vicinity out numbered the normal people (well it didn't but there were now 3 out of around 10 and in my opinion that is almost a gathering) and I said the mother playing with her family that I think there are now more type 1's here than normal people. Instantly when hearing those words there was understanding that we were both on the same page.
After conversing for minutes about myself and my daughter being T1 and jotting though the standard questions such as "When were you diagnosed or How long have you been Type 1?" I realised to myself that to speak face to face with someone who goes through a day simular to what I do is a relief and a joy. To be able to speak only half of a scenario and know that the other person can relate is something to behold. Usually if I told someone that I was 2.2 it would mean absolutely nothing to them without a long explanation as to the standard levels and what causes low blood sugar is and even what blood sugar is but in this instance I was told and I could empathise without even another word.
I suppose that this relates back the scenario where people talk about the advancement of technology across all sectors such as robots working in hospitality (I know a long way off) and less need for people as we are automating so much that where we used to have 10 people to do a job we now only require 2, where doctors will consult online with instruments that will send instant results online. There is a time where human interaction becomes one of the most important factors in life. To be able to relate feelings, scenario's, joys and frustrations is as important to me as breathing. Nothing can ever take away from this event and for any T1's out there that don't have the want or maybe the means to meet another T1 in person then I hope one day that you have the opportunity as nothing compares.
Today while waiting for my wife to have her nails done I decided to take the kids to the park at the shopping centre. I open the door and the kids run, as usual, to all the fun and excitement that the park brings. Keeping in mind that I needed to make sure that my T1 daughter didn't drop low I decided to take a seat and watch the fun. Upon sitting down I saw a common sight to me but to most people would not even take a second except if they were looking to see if the device that was on the pocket was some sort of pager or MP3 player.
I knew instantly that this person knew what it was like to have a hypo or to be high, from over doing the sugar intake and not weed. It isn't everyday you come across another T1 so I decided to make contact. For a split second the Type ones in the near vicinity out numbered the normal people (well it didn't but there were now 3 out of around 10 and in my opinion that is almost a gathering) and I said the mother playing with her family that I think there are now more type 1's here than normal people. Instantly when hearing those words there was understanding that we were both on the same page.
After conversing for minutes about myself and my daughter being T1 and jotting though the standard questions such as "When were you diagnosed or How long have you been Type 1?" I realised to myself that to speak face to face with someone who goes through a day simular to what I do is a relief and a joy. To be able to speak only half of a scenario and know that the other person can relate is something to behold. Usually if I told someone that I was 2.2 it would mean absolutely nothing to them without a long explanation as to the standard levels and what causes low blood sugar is and even what blood sugar is but in this instance I was told and I could empathise without even another word.
I suppose that this relates back the scenario where people talk about the advancement of technology across all sectors such as robots working in hospitality (I know a long way off) and less need for people as we are automating so much that where we used to have 10 people to do a job we now only require 2, where doctors will consult online with instruments that will send instant results online. There is a time where human interaction becomes one of the most important factors in life. To be able to relate feelings, scenario's, joys and frustrations is as important to me as breathing. Nothing can ever take away from this event and for any T1's out there that don't have the want or maybe the means to meet another T1 in person then I hope one day that you have the opportunity as nothing compares.
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