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That feeling of loss

Emmadixon

Member
Messages
19
Location
West Yorkshire
Type of diabetes
Parent
Treatment type
I do not have diabetes
I remember the run up too my little 2 1/2 year old pudding been diagnosed with type 1 diabetes. We had thought he was coming down with a virus and between us decided to monitor his condition, there had been initial signs, bed wetting, unquenchable thirst, smelling sweet, peeing loads, I had even contacted the health visitor who reassured me he couldn't have diabetes as know one in our family did, how wrong she was. On the day he became so ill we had to carry him to the doctors as he was barely responsive I could have never imagined what would come next, blood sugars so high they were unreadable on a meter, we were rushed to A&E and I watched as the nurses put drips and canulars in my baby, all smiling at me sat there heavily pregnant and bewildered by what was happening around me, i remember having the initial thoughts, is it my fault, why didn't i do something sooner, i work in health care I should know this, despite the reassurance from staff and doctors i remember looking at him laid in that bed and i just found myself crying uncontrollably, he was the one laid in a bed with bandaged hands where all the canulars were and yet he was smiling snd laughing and enjoying the attention , thank god he kept smiling as I felt like his life was over his childhood was over i felt like id lost my little boy and things were never going to be the same, luckily for us parents children take things in there stride though at first the sight of a doctor,nurse and needle would make him scream in fear, he now hands me his fingers asks for his bloods doing and tells me where to do his "ouchies" don't get me wrong it's still hard, the hypos are the toughest when he's low he's really low and when he's high hes sky high but on the good days hes really good and i cling on to them. I blame myself for the above and question my every move when it comes to care treatment food diet exersise wether they contributed did Isis calculate something but sadly diabetes has a mind if its own and no day is the same, id be lying if I said there wasn't a moment everyday where i question my ability to cope and manage. Any way I could go on four hours about my experiences and issues but I don't want to chew your ears off, thank-you for reading
 
Welcome, Emma. I have several family members with T1 diabetes and their parents all felt the same way at times. Please understand it is not your fault, there is nothing you did or didn't do that contributed to him getting diabetes. Are you getting all the support you need from health services? I just want to say you are doing a terrific job and your boy is lucky to have you.
 
Welcome to the forum Emma. Don't ever blame yourself, there's no way you could have known. You are doing an amazing job just by being there for your son. I can't be of much help information wise as I am only a Type 2 but I'm sure with time things will become easier. There are a lot of knowledgeable and helpful Type 1's here so if you have any specific questions I'm sure they would be only too willing to help. Even though I am far away I would like to send you a hug and let you know I will be thinking of you both.
 
I too am the only type 1 in my family, my dad is the youngest of 8, and my mum the youngest of 5 - there is a lot of us, I have 22 aunties and uncles, my mum and dad along with 36 cousins and my sister who don't have it - lol, I got type 1 diabetes as a child. It can and will happen to anybody. Don't blame yourself x x x
 
I almost cried reading this. My little sister also got diagnosed a few days ago and we're all still trying to adjust
 
Vixen said:
I almost cried reading this. My little sister also got diagnosed a few days ago and we're all still trying to adjust
Click to expand...


My little boy was diagnosed in Feb this year and sadly it one of those conditions where just as you think you've got a grip of it all it throws you a curve ball and smacks you in the face lol all you can do it support each other and manage it it really is a rollercoaster i find comfort in that my little boy knows no different its normal for him now I'm the one that seems to struggle, any advise you need though feel free to ask, in now an expert on carb counting lol how olds your little sister? X
 

She literally just turned 14 a few weeks ago and the worst thing is she isn't adjusting that well to it as all of a sudden she needs to inject something before every meal with carbs. It's not the best birthday present is it?

How difficult is it to manage and keep within normal levels and what kinds of curveballs do you experience?
 


The issue is diabetes isn't a predictable condition and iv realised it affects people differently, some of the things we have noticed are when its hot weather George's blood sugars go sky high as he's a toddler and doesn't drink extra fluids like we would want him too,George responds to well to exercise so A good example is the other day we went for a walk he was 7.1 Setting off so in Range but 50 mins later was having a severe hypo at 2.3. And that was just sauntering iv known him to be hyper at 14.6 before we've gone swimming at 40mins of paddling has dropped him to 2 and just as we think theres a pattern it can all be turned upside down again you constantly find yourself scrutinising everything finding something to blame for the inconsistency when Infact it's just the condition. I struggled with the amount if factors that can affect it which are out of our control like the weather, illness, exercise and other people. We are now at at point where we are more within range than out of but it's take. Months to get here and I know it will change again in a matter of weeks, sadly for your sister it gets hard before it gets manageable. The carb counting once you get the hang of it is quote interesting but equally frustrating as most things that are good for them are the things they don't want to eat lol x
 
My little one was diagnosed last Aug at the age of 21 months. I feel the same feeling of loss, loss of lots of things,but i gained a much happier child. Just as you said on good days (or good hours in our case) everyone is happy because it is sooo precious. I have not had a full nights sleep since she was born and i keep thinking that she was prediabetic long before and they should have picked it up earlier, but it is all if only. Life goes on and hopefully the feeling of loss and guilt will heal.
 
That's a good point, about gaining a happier child. I've had to come to terms with being diagnosed with a number of chronic conditions over the years. The first one was the hardest to accept, but it does get easier with time. We'd all like it if we and our loved ones had no illnesses, of course. But since we/they do have one, it's nice to occasionally remember how much worse it was just before diagnosis and treatment.
 

I know what you mean about them been pre-diabetic before an actual diagnosis, I saw signs months before he got diagnosed but kept been told it wasn't a possibility and this was mainly from health care professionals x
 


I'm going to send this to some members of my family who have long needed to learn something about life with T1 instead of being so 'knowledgeable' and presumptious. Thank you for being a non-PWD (Person With Diabetes) who has truly grasped the illusion behind the smiles.

I offer you and your son my heartfelt condolensces on the diagnosis, but take heart that he has a mum who is truly in tune... the meds, the treatments and the wealth of knowledge (via the wonders of the www) will offer you fanstastic opportunities for better life with T1 than many of us old-timers started with. Take comfort in that, although it will always be hard - and his teenage years and the period of transition to new schools will throw in quite a few 'curve balls', but you have time to adapt and prepare.

My very best wishes to you.

Conrad
 
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Hi @Vixen

I'm so sorry to hear about your sister's diagnosis - and at such a point in life. I was 'fortunate' in being diagnosed years before my teens, but I remember the period well - partly owing to family circumstances, which added to the burden I faced.

I suspect it will not be easy for your sister - or for the rest of you for that matter; T1 diabetes can do strange things to the mind and emotions (take note, insulin is a hormone - like oestrogen and testosterone) and when combined with the enormous physical and pyschological changes of puberty it can become a terrible force for individual and family distress.

I strongly advise that your parents and close relatives get on to this site and check out the basics about T1, the meds, carb-counting, hypos and hypers, ketoacidosis and all the other mechanics of the life of a T1. And then show them the abovementioned post by @Emmadixon because that does hit the nail on the head.

I also strongly recommend the family get some good books on managing T1 and read them to help guide your sister into good behaviours, but also so that they have empathy for your sister when she is 'going off the rails' and refuses to inject / blood test / eat / etc.

Some good ones to get (available as both books and via Kindle):

"Think like a pancreas" by Gary Scheiner
"Dealing with Diabetes Burnout" by Ginger Viera
"Dr Bernstein's Diabetes Solution" by Dr. Richard K Bernstein

The following link is also something to be aware of for teenagers: http://www.diabetes.co.uk/Diabetes-and-Diabulimia.html

Finally, get her to join the forum and the teen section, as well as Facebook sites for T1 teens... I was the only kid in all my schools who had diabetes - it can be a very lonely experience when all those around you can scoff their faces with seeming impunity and not have to stick sharp objects in their fingers, arms, thighs, stomach and buttocks on almost every occasion.

I wish you and your sister the very very best.
Conrad
 
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