Feel like I'm drowning!

[Skye's_mummy]

Hi all,
Been having a few rough weeks and it's just getting a little too much to cope with. Does anyone else get to this stage? No matter what I seem to do I can't get my LO sugars right. We're not long out of hospital after high ketones/ low sugars, suspected viral ear infection, she wasn't eating. I just feel like I'm failing her, that I'm not doing enough but then I don't know what else I can do! Unexpected hypo's with no signs at all, unexplained hypers. I can't win. I literally feel like I'm on edge all the time and never ever relax. I guess I'm not looking for advice I just needed to get this out, I'm fed up of telling the other half (brick wall). I'm running on empty and not sure where I go from here.
Anyway I think that's enough ranting for now!

 

[azure]

You're not failing her at all. You're clearly totally dedicated to looking after her.

Type 1 is hard when you're ill. It's perfectly normal to lose control a bit, and with your daughter so young it must be even harder.

Edited to add - are you able to borrow a CGM to take some of the testing pressure off you? I can't remember if you've mentioned pumps before (apologies for my bad memory) but they're really useful when ill.

 

[Skye's_mummy]

You're not failing her at all. You're clearly totally dedicated to looking after her.

Type 1 is hard when you're ill. It's perfectly normal to lose control a bit, and with your daughter so young it must be even harder.

Edited to add - are you able to borrow a CGM to take some of the testing pressure off you? I can't remember if you've mentioned pumps before (apologies for my bad memory) but they're really useful when ill.

Thanks very much, I asked about a cgm but currently no one in our area has got funding for one, unfortunately I'm not in a position to be able to self fund one. We have a saline trial with one on the 12th, I do find that 1/2 unit (pen) is too much for her sometimes which is the main reason that I'm leaning towards a pump. It's just totally life changing, she just gets on with it but it's just so much to deal with sometimes. It's mostly just me and her alone together so I feel like I have to get it right, no one else is going to help with it, it's scary!

 

[azure]

It is scary - and I speak as an adult, so what it must be like worrying about a little child, I can't imagine.

I would hope you'd find a pump,easier. The ability to do tiny boluses is amazing. It's also easier to alter the basal and you can do temporary rates too eg lower basal if active, etc.

It won't take away the worry, but I'd hope it would make control,easier and take some of the pressure off.

Remember too that as your daughter gets older, she'll understand a little more and be able to communicate better, so hopefully that will help you manage meals more easily.

Don't underestimate what a fantastic job you're doing. I need a medal smile here : )

 

[Skye's_mummy]

It is scary - and I speak as an adult, so what it must be like worrying about a little child, I can't imagine.

I would hope you'd find a pump,easier. The ability to do tiny boluses is amazing. It's also easier to alter the basal and you can do temporary rates too eg lower basal if active, etc.

It won't take away the worry, but I'd hope it would make control,easier and take some of the pressure off.

Remember too that as your daughter gets older, she'll understand a little more and be able to communicate better, so hopefully that will help you manage meals more easily.

Don't underestimate what a fantastic job you're doing. I need a medal smile here : )

Yeah I think I would worry less if it was me, she's everything to me that's why I get so stressed about it all.
I can't wait till she can tell me she feels a hypo coming on etc. I might actually get to take a breath! Thanks that's really kind, I have a totally new found respect/admiration for type 1 mums!!
And god knows what I'd do without this forum!

 

[himtoo]

wanna know something ............. you are amazing !!!!!
not only are you doing what every mum would most likely do ...... you are talking to strangers to try and get that extra bit of help and support that you feel a bit overwhelmed by.

( translated this means you are awesome -- because even us oldies doing the D for most their lives get overwhelmed )
keep the faith .....it won't really get loads easier( it will some ) but you will get more mojo as time goes on....

 

[Skye's_mummy]

wanna know something ............. you are amazing !!!!!
not only are you doing what every mum would most likely do ...... you are talking to strangers to try and get that extra bit of help and support that you feel a bit overwhelmed by.

( translated this means you are awesome -- because even us oldies doing the D for most their lives get overwhelmed )
keep the faith .....it won't really get loads easier( it will some ) but you will get more mojo as time goes on....

Thank you that's such a lovely thing to say. I think I just need half a day off, some time to catch my breath, then I can start again and kick the ass out of this.

 

[himtoo]

hey @Skye's_mummy
I would come along to give you a day off if I could --

you are in the middle of a tough period of time right now.

my motto to myself during tough times has always been ----- "This too shall pass "

as* kicking is fun too being a D -- we try to do it pretty much every day !!!!!

 

[Skye's_mummy]

hey @Skye's_mummy
I would come along to give you a day off if I could --

you are in the middle of a tough period of time right now.

my motto to myself during tough times has always been ----- "This too shall pass "

as* kicking is fun too being a D -- we try to do it pretty much every day !!!!!

Yeah just got to pull my socks up and get on with it. Brave mummy face on. On the plus side I have an hour to myself tomorrow!!

 

[donnellysdogs]

Enjoy free time. Agree with others.
Children in UK ate priority for funded pumps.
Some hospitals are giving freestyle libres for a 2
Week trial. Even 2 weeks would be wonderful!
Some hospitals do offer loan cgms... they have them for pregnant women etc.
A new cgm sensor that is cheaper and sends blood leveks to phone has jyst been released yesterday. Called medtronic Guardian. I am having one funded for 3 months.

 

[Skye's_mummy]

I think you're amazing. My daughter is a lot older than yours and I find coping with her diabetes incredibly difficult. Stop being so hard on yourself. Enjoy your free time xx

Thanks, I don't want to jinx it but we're doing a lot better these past few days. Having a super snuggly day watching Christmas films today, that's my idea of relaxed! x

 

[Skye's_mummy]

Enjoy free time. Agree with others.
Children in UK ate priority for funded pumps.
Some hospitals are giving freestyle libres for a 2
Week trial. Even 2 weeks would be wonderful!
Some hospitals do offer loan cgms... they have them for pregnant women etc.
A new cgm sensor that is cheaper and sends blood leveks to phone has jyst been released yesterday. Called medtronic Guardian. I am having one funded for 3 months.

That's great thanks, I'm just going to keep pushing to try and get funding for her. Apparently the hospital is trying desperately to get funding for another child a little older than her, so I would hope that we would be able to get one too.

 

[donnellysdogs]

That's great thanks, I'm just going to keep pushing to try and get funding for her. Apparently the hospital is trying desperately to get funding for another child a little older than her, so I would hope that we would be able to get one too.

Good... it is worth fighting all the way..
Keep an eye out for the Medtronic Guardian CGM and prices... it only just released.. I hope to be 1st at my hosp to try it. Jyst hope I can get it soon. Funding was agreed in Sept. at least it will get a good trial over xmas hopefully as I do intend to try n eat more.

 

[Skye's_mummy]

Good... it is worth fighting all the way..
Keep an eye out for the Medtronic Guardian CGM and prices... it only just released.. I hope to be 1st at my hosp to try it. Jyst hope I can get it soon. Funding was agreed in Sept. at least it will get a good trial over xmas hopefully as I do intend to try n eat more.

Yeah I will do thanks, she's having a trial with a medtronic pump in a few weeks as that's the pump her hospital offer so it would be interesting to see if the two could be linked up?! Haha we've already started our xmas eating spree!

 

[donnellysdogs]

Aah, the medtronic comes with an Enlite sendor that can work with it... so at least you 1/2 way there!!

Mmm, the eating spree... when we had a huge tesco next to us abd I had discount card-our food buying started Sept!! We had to replace it each month!
Now we just get the week before.....

 

[Skye's_mummy]

Aah, the medtronic comes with an Enlite sendor that can work with it... so at least you 1/2 way there!!

Mmm, the eating spree... when we had a huge tesco next to us abd I had discount card-our food buying started Sept!! We had to replace it each month!
Now we just get the week before.....

That's handy to know thanks.
Haha, omg id always been eating if I lived next to a big supermarket! I have to walk 20 minutes to get to a shop so at least I'm walking some of it off!!!

 

[donnellysdogs]

Must admit we had £6000 of total spending a year for discount.. I had used it all up by end of October!! (From March!!).. was the biggest Tesco at the time-thats my (our) excuse!

If a child hasn't got hypo awareness I don't know why a CGM or Libre is not automatically granted.

The enlite sensor will cut off the supply of insulin to a pump until levels return to normal... which can be handy.

The guardian though allows a reading to go to parents... so can be kept an eye on when out of sight..and saves getting out of bed to test or look at an emlite sensor.

Best of all for mdi users the guardian will work with mdi...I looked at price in USA and its $217 so still not as cheap as the Libre scanner..

 

[Skye's_mummy]

Must admit we had £6000 of total spending a year for discount.. I had used it all up by end of October!! (From March!!).. was the biggest Tesco at the time-thats my (our) excuse!

If a child hasn't got hypo awareness I don't know why a CGM or Libre is not automatically granted.

The enlite sensor will cut off the supply of insulin to a pump until levels return to normal... which can be handy.

The guardian though allows a reading to go to parents... so can be kept an eye on when out of sight..and saves getting out of bed to test or look at an emlite sensor.

Best of all for mdi users the guardian will work with mdi...I looked at price in USA and its $217 so still not as cheap as the Libre scanner..

Ha, that's a good effort!!
Thanks very much, yeah I'm now armed with all the information I need to go in a beg and grovel for some funding!!!

 

[donnellysdogs]

Incidentally if
You want to be sure of your CCG funding policy for CGMs, do google it. Or ask for a copy of it.

If your CCG has limits (like mine do) they may make it only alliwable to persons under "exceptional circumstances).. some people lose awareness and driving licences are still tuened down.

A child with hypo unawareness and especially for activities etc may be able to be considered but it depends upon the CCG stance. Some CCGs do not have a problem funding ... my last CCG didn't.

Would be worthwhile trying to see if your CCG do have a position statement or policy for CGMs before seeing the Consultant...

 

[mc9]

Thanks very much, I asked about a cgm but currently no one in our area has got funding for one, unfortunately I'm not in a position to be able to self fund one. We have a saline trial with one on the 12th, I do find that 1/2 unit (pen) is too much for her sometimes which is the main reason that I'm leaning towards a pump. It's just totally life changing, she just gets on with it but it's just so much to deal with sometimes. It's mostly just me and her alone together so I feel like I have to get it right, no one else is going to help with it, it's scary!

You could try to get groupfunding on this site