not feeling right

[Rox000]

I read a lot on here reluctant to post tbh but today im feeling bad.
So many of you are courageous in your posts and for a bit as i read them it makes me not feel so alone in this unknown journey.
My situation is probably a little different to others in that my daughter is non verbal has autism and now has t1.
It was always challenging looking after her previous to this new diagnosis but now im really overwhelmed.
Some of you may think that im a little over the top in saying that my job is to keep my girl alive and happy. But its very true in that everything she does needs my care and attention now omg the copious bsls the insulin adjustments adjustments the carb counting has just tipped me over the edge.
She didnt deserve this as did none of you .....i am very hard on myself and always have been a terrible perfectionist with anything i tackle...and this new diagnosis has maxed me out.
im tired frustrated annoyed upset teary and tend to hide these emotions very well from my daughter and family because the “soldier on ” philosophy is how ive been geared to carry on with life.
I hate it tbh...my daughter is no trouble to me in that she NEVER complains and through all her life has shown courage and tenacity and has managed to soldier on too with her mum....She really is my hero u know...
i just dont know how long i can keep this up. i dont want it to beat me but i feel its getting the better of me..

 

[Robkww]

Stay strong @Rox000 , we all give you respect for your support to your loved one and there will be others with advice along soon.

 

[Jaylee]

I read a lot on here reluctant to post tbh but today im feeling bad.
So many of you are courageous in your posts and for a bit as i read them it makes me not feel so alone in this unknown journey.
My situation is probably a little different to others in that my daughter is non verbal has autism and now has t1.
It was always challenging looking after her previous to this new diagnosis but now im really overwhelmed.
Some of you may think that im a little over the top in saying that my job is to keep my girl alive and happy. But its very true in that everything she does needs my care and attention now omg the copious bsls the insulin adjustments adjustments the carb counting has just tipped me over the edge.
She didnt deserve this as did none of you .....i am very hard on myself and always have been a terrible perfectionist with anything i tackle...and this new diagnosis has maxed me out.
im tired frustrated annoyed upset teary and tend to hide these emotions very well from my daughter and family because the “soldier on ” philosophy is how ive been geared to carry on with life.
I hate it tbh...my daughter is no trouble to me in that she NEVER complains and through all her life has shown courage and tenacity and has managed to soldier on too with her mum....She really is my hero u know...
i just dont know how long i can keep this up. i dont want it to beat me but i feel its getting the better of me..

Hi Rox,

You know what? Both you & yer daughter sound like heroes..
I don't feel it will beat either of you. But I do feel the adjustment to it all needs a little patience in the sense of don't try to cram the "diabetes knowledge" in all at once?

Regarding the "non verbal autism." Have you thought of using a CGM like a Freestyle Libre as a way of monitoring the blood sugars, spotting trends? This may ease your mind between the finger pricks..?

I'll tag in @Juicyj .

Kind regards,

J>

 

[ickihun]

I just wanted to say hi @Rox000 . I have very very little knowledge of type1 and autism but if it's just a moan or shoulder you want we are here too.
So may of us here find a problem shared is a problem halved!

What unites us is diabetes and all it entails.

Welcome to the forum

 

[lovinglife]

Omg I really feel for you it must be all consuming and so so difficult for both of you, I have an adult son with autism but not diabetes- I just don't know how both of us would cope with that situation I think you are absolutely amazing and totally justified in your feelings.

I know the situation of projecting to the outside that everything is doable and yes I'm doing it - I think it's part of the job description for carers like us. We are having struggles at the moment and my son's anxiety and depression is getting the better of all of us, but to the outside world we are good because we just don't share, I think I bore people and they just don't understand anyway.

Try to be kind to yourself- nothing is static and things change and move on try to remember that, even taking one day, hour, minute at a time can help, please find someone to talk to, speak to your GP about your feelings, has your daughter got a social worker? They can help get you some respite. Use every resource at your disposal, I know fighting to get help can be just as exhausting as the thing we need help with but sometimes just doing something positive about it can help.

Have you had a carers assessment? By law every carer is entitled to have THEIR needs assessed not those of the cared for. You can be referred by GP, social services or can contact the carers association yourself to request one.

Keep going, you are stronger than you think and will get through this, bite size pieces, one at a time. I don't know who said this but I read it somewhere and it helps me when times are tough, it's just a silly little saying but I often say it to myself.
"Even eating an elephant can only be done one bite at a time, but you manage to eat it all in the end"

Hugs to you and don't be so hard on yourself, don't strive for perfection- there's no such thing xx

 

[Rox000]

thankyou i will really try

 

[Rox000]

jaylee thnx for your reply the finger tests nor the injections bother her in the slighest.. but anything on her skin as simple as a cuticle bothers her to extremes..ive looked into the CGM but id have to put all my energies into desentizing her something i think would surely increase her anxiety levels and then also her bsl....
might be something i might look into with her speech and behavioural specialists later down the track...many thanks

 

[Juicyj]

jaylee thnx for your reply the finger tests nor the injections bother her in the slighest.. but anything on her skin as simple as a cuticle bothers her to extremes..ive looked into the CGM but id have to put all my energies into desentizing her something i think would surely increase her anxiety levels and then also her bsl....
might be something i might look into with her speech and behavioural specialists later down the track...many thanks

Hello and welcome Rox,

Being a perfectionist will present issues as numbers can control your life, if you can develop your learning further by reading ‘think like a pancreas’ then you can hopefully understand more about the impact of carbs and insulin, try also to get more suppprt from your team they are your backbone so make sure you get as much support as you need from them, we are also a good sounding board so please shout for any help/support we can offer too x

 

[Rox000]

yes i bought the book as soon as you mentioned it lol its on ots way

 

[4ratbags]

Don't be afraid to take any support that you are offered, it can be the difference between coping and having a meltdown. I had 2 children with ASD and one of my grand daughter's has ASD as well so I take my hat off to you as I know the difficulties the sensory issues can cause. There is a lot of good advice in the previous posts so hopefully some of the suggestions will be helpful. (((hug)))