Overwhelmed

[Heidi]

We're now almost three weeks into Type 1 diabetes yet it's almost impossible to remember what life was like before R's diagnosis.
We've been through his first few hypos (one right down at 1.8 after an hour on the Wii) and we're still battling against highs without having learned yet to carb count.

Next week we're having our carb count class and I'm hoping that it'll make me feel more in control. I think that's the worst part of all of this - the total lack of control over this horrible condition.

Friends and family have been kind but to be honest none of them really have any idea of what this is like. My uncle telephoned last night asking how R was and if he was still having to 'take' insulin....A friend sent me a kind email full of hope about a diet she'd heard of from a diabetic acquaintance - it cured diabetes but involved spinach. The email at least made me laugh, even though that wasn't the aim!

Anyway, that's where we're at - exhausted, overwhelmed but hanging in there. Just.

 

[gewatts]

Hi Heidi. I'm so sorry you are feeling like this. It is so hard at first to take it all in and to re-adjust nearly everything you do! You'll be on a huge learning curve. I'm glad you've found this site. There are so many friendly people on here with great advice. How old is your son and what insulin regime are you on? When Katie was dxd nearly 4 years she was put on mixes which was terrible as her blood sugars were never stable - mainly running high but shooting low as soon as we tried to tweek her insulin. She has recently moved to MDI and carb counting. Her bloods are loads better. We never went on a course. Our DSN just came over and went through the basics. It does take a bit of getting used to but it does get easier the more you do it.
It does drive me mad when people who have no idea try and give me advice but it is all well meant. I understood nothing about diabetes before it invaded our lives so why should other people? Please feel free to ask anything on this forum, no matter what. x

 

[Northerner]

Hello Heidi, you're not alone in feeling like this - have a look at this thread started by another of our parents a few months ago:

http://www.diabetessupport.co.uk/boards/showthread.php?t=5285

It will take time, but you will learn how to deal with things, and there will always be people here that can empathise.

 

[Cat]

Heidi
My son has just had his one year diabetes anniversary.
I remember all too well those first few weeks of struggling to come to terms with everything the diagnosis involves. It does feel very overwhelming and, yes absolutely exhausting!!....but it does get easier, i promise.
Comments from well meaning friends can be soooo frustrating ... i remember a friend of mine commenting when i told her of my sons diagnosis .... " oh! hows he managed to get it so badly at his age? " Implying he had indeed actually done something to get it !!! Grrrrr!
Best wishes to you and your little ones x

 

[jimmysmum]

We're now almost three weeks into Type 1 diabetes yet it's almost impossible to remember what life was like before R's diagnosis.
We've been through his first few hypos (one right down at 1.8 after an hour on the Wii) and we're still battling against highs without having learned yet to carb count.

Next week we're having our carb count class and I'm hoping that it'll make me feel more in control. I think that's the worst part of all of this - the total lack of control over this horrible condition.

Friends and family have been kind but to be honest none of them really have any idea of what this is like. My uncle telephoned last night asking how R was and if he was still having to 'take' insulin....A friend sent me a kind email full of hope about a diet she'd heard of from a diabetic acquaintance - it cured diabetes but involved spinach. The email at least made me laugh, even though that wasn't the aim!>>>>>>>>>>>>>>>

Hi Heidi

Its weird to think back to when life was 'normal' whats normal now? its so difficult in those early weeks, when i posted on that thread Northerner has linked my Jim had only been diagnosed for about 6 weeks and i still think i was crying in bed about it on a regualar basis.

I totally get you when you say people are being kind but dont know really whats happening, i found that very difficult at the time too (still do somewhat) because its such a major change of life for them (and us as their mums & dads) if only they could eat a diet that involved spinach and their diabetes be cured! Ive had lots of comments like that and have had to bite my lip and thats putting it mildly.

I dont have any firm advise but will say this; things do get easier and you do start to 'get it' and you do start to ignore all the twatty comments, your doing such a marvelous job & i bet R is chuffed to have you as his mummy hang in there you doing a fab job xx

 

[bev]

Hi Heidi,

This is all very normal I am afraid. Things will feel very stressful for a while yet - but i absolutely promise you that things *do* get better! Once you and your son know how his body reacts to various situations, you will both find ways around it - but the problem is that you have to go through the rubbish to get to the answer. The good news is that you will learn an awful lot about his body and you will also find ways of being pro-active so that these low hypos are rare. Once you are carb counting and pumping, life will become more 'normal' and you will learn to accomodate diabetes and all it entails.🙂Bev x

 

[Heidi]

Hello Heidi, you're not alone in feeling like this - have a look at this thread started by another of our parents a few months ago:

http://www.diabetessupport.co.uk/boards/showthread.php?t=5285

It will take time, but you will learn how to deal with things, and there will always be people here that can empathise.

Thank you for putting in a link to that thread.

Here's the real irony in all of this - I've known Patricia for five or six years now - long before her son was diagnosed. She was one of the first people I contacted when we got R's diagnosis and without doubt she's been the most supportive.

Yes, things have all gone to hell here but at least I have wonderful friends like Patricia.

And I completely identify with what she said about so few people really understanding.

It's so easy to look at my son and not see anything wrong with him because he *is* fit, healthy, intelligent and above all normal. Yet as we all know diabetes constantly holds their lives in a fine balance.

He's 12 years old and is currently on MDI but we're hoping to get a pump as soon as we can.

Easter was horrible. And I'm feeling very sorry for myself right now. That will pass and life will go on.

Dear god - I'm not usually this philosophical - don't worry I'll try to avoid kicking the cat. 😉

 

[Gemma444]

Hi Heidi

My son J is 8 yrs old and was dx in August last year. I can remember holding back the tears when the doctor told me j had type 1 but i thought to myslef that I cannot let my son see me cry but I did cry that night in the hospital when he was asleep. I have cryed plenty of times since. It can be very frustrating at times and I still wonder if I'm doing the right thing. My son is on mixes and is soon going onto 3 injections a day and then hopefully MDI.

I have met some wonder people on this forum and the email list I am on is a great support. I think bev or Adrienne could point you in the right direction if you would like to join (if you havne't already). The mums on their and everyone on here are fantastic and have been a great help to me. I wouldn't have coped if I didnt have them.

gem x

 

[Moddey]

All I can do is repeat what others have said before: it will get better. Not great and never the way it used to be, but better. It becomes a part of everyday life, yours anyway.

Unfortunately, the world is full of idiots who will stop your child when they see him measuring and tell him 'he'll get better soon'. If you're lucky, your relatives are interested and will want to know everything about type 1. But they might still be too scared of needles, blood and everything "illness-related" (direct quote from a family member ) to ever offer you a break from it all.

This forum is fantastic and there are several blogs which seem to get it so right. I recommend http://wavingdrowning.wordpress.com/ , she has had me on the verge of tears a couple of times, in a good way 🙂
It's important to have support from people who truly know what it's like and I'm glad you have found your way here 🙂

 

[Patricia]

Hello Heidi my dear. Feel quite tearful reading this, though I only saw you last week.

Oh my. Did not anticipate how strange it would be to really know someone on these boards. Emotional!

I can't add to what everyone else has said. But hey. We all stagger on.

xxoo

 

[rspence]

Hi heidi

today i'm in the place you were when you started ths thread. or a similar place anyway. a bit of a crying wreck. but i have hope form readng the replies already on here and I trust a few weeks on you're carb counting is beginning.

we carb count but obviously not very well cos most of JP's readings are above 15! he lives on skps and cherrios at the moment so it shouldn't be difficult cos every meal is the same!!

oh well, we'll get there and when we do tomorrow will begin.
rachel

 

[Heidi]

Hi Rachel,

Our carb counting hasn't really begun properly yet - Ross has now hit a proper honeymoon phase. Once he returned to school last week his blood levels dropped right down - I think since he's been back he hasn't had a reading above 14 and that's only been once, most of his readings are in single figures.

The crying comes and goes. Most of the time I find I'm just utterly exhausted. Life seems to have narrowed down to family and diabetes - everything else is in the background and things get done as and when. Unfortunately this has also coincided with me taking on some extra work - I agreed to do it about ten days before diagnosis. It'll be over by July so I'm aiming by then to stop crisis management and begin to get organised.

And I'm writing that and thinking - Yeah, right! Organised? With diabetes? Ha!

But we will all get through it because it's what mothers do, right? 🙂

 

[rspence]

strong because we're together

Heidi - yes we mothers get through things, but we get through alot better when we're in a community of people who are alongside us. wth love rachel

 

[Gemma444]

Hya Heidi

How are you doing? your feelings are complete normal I can still remember holding back the tears when the doctor at the hospital confirmed that jack had type 1. Life with D can be difficult but it soon becomes part of your everday life. I find myself thinking about timing for everything, it can be difficult but i think you soon get use to it. We have once got into the car drove to the bottom of the street and had to turn around again as ive left his supplys on the sofa! and we are 8 months in..

i have too had relatives say will he have to take insulin forever and me having to explain things. Thinks will start to feel that little bit better.

xx

 

[Heidi]

Hi Gemma,

Things are still very up and down - Ross's blood levels have been all over the place for about the last three or four days and it makes us all feel as if we've somehow 'dropped the ball'.
The amount of guilt this blasted disease lays on us all is horrendous.

I guess the best any of us can do is attempt to draw a line under the last few days and start afresh. Again.

H
x

 

[rspence]

Can you ask Ross a question?

Ross - is it posisble to describe how you feel in your head, body and energy levels when your BM count is up and down?

I think it must be tiring for you and other type 1 kids but as JP is only 2 he can't tell me what its like!!

Heidi - no worries if Ross can't answer my queerie or if he doens't know what he feels.

In your previous post you mentioned being busy with work til July - yes thats my deadlone for getting essays and I'm desperate for it to be here now yet haven't done the work so glad its not yet!

I feel very stressed ths weekend (and a little hungover!)

still we can draw a line and pick up the ball and start again again.

rach xx

 

[Heidi]

Ross tends to feel angry and headachey when high - it woke him up at 3am last night (he tested his blood himself, it was 18!! Then he went back to sleep). Yesterday he'd also been high - my dad's 70th birthday party, Ross ate cake. We knew he was high because he became very aggressive and began swearing (this child is no angel, but usually doesn't swear in public! 🙂).
When he's having a hypo he gets shaky, feels spaced out and as if he's not there. Often when he's at either extreme he becomes tearful.

The hypos he recognises himself now and is pretty much spot on with them. The highs though, that's something we tend to see with the aggression.

Rach, I'd love July to be here too, but between now and then I have probably about 300 essays to mark so I'm glad it's not here yet as well!

The stress levels go up and down like Ross's blood at the moment. All I can seem to bring myself to do is sleep, read or just 'be'. All the marking and other stuff has to take a back seat.

It's not good to keep up these sort of stress levels - I know I've lost about half a stone in the last few weeks - I'm happy to have lost it but I'd rather have done it on purpose!
It was almost scary being told yesterday by one of my parents' old friends that I 'had a lot on my plate and I should take care of myself' - I think as the parent of a T1 we do tend (rightly) to focus on them and their needs. I also think that perhaps we need to make sure there's some balance....If only!

H
xx

 

[Patricia]

Hello Heidi et al

E also becomes aggressive and moody when high. He also becomes easily tearful or short tempered. Some of our difficulties with this and a teen is that it's sometimes hard -- or impossible -- to tell the difference between this and 'normal' teenage sulking/stroppiness. In the early days it was one of the things which drove me most crazy: we couldn't tell him off for totally unacceptable behaviour because he was as high as a kite and almost out of control. It's better now -- partly because the control is better, but also because he is better at recognising things and trying to get some control and take some action.

When low, E is pale, shaky and quiet. If it's a scary, plummeting kind of hypo (much more rare for us now on the pump), the adrenalin in him makes him very frightened and anxious indeed. He can hardly think straight, and becomes completely fixed on getting tested and getting something in him. It sends him into a panic.

I often think it must be pretty darn grim to have a little one with T1. At least E knows what's going on.... I'm sorry Rachel. Hang in there.

Re looking after self: for me, it took about a year before I could really do anything else, and that's the truth. I barely did anything, the absolute minimum of work. Last summer I began to do things like little shopping trips, or a manicure, or some quality time with my daughter -- very deliberately, just for a half an hour of head space and away from all work and pressures. But it did take me a very long time to get to that -- 9 months.

So yes, look after yourselves, but also -- don't worry if that doesn't come easily, is what I'd say. It's natural for everything to go into high gear for some time yet...

Lots of love,

xxoo