very miserable

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bev

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Hi all,

I am in a horrible mood tonight. I am sick of Alex having infections due to his sensor and tonight he has one from his canula.

I know everyone on here is a complete star coping with diabetes, but I just want to moan about being a 'carer'. Its the most soul-destroying job in the world. I dont like it.

I put my heart and soul into trying to keep levels within range - and then some stupid infection decides to come and play and mess it all up and I hate it.

When your watching your child happy in play knowing that his level is 12 or more - all you can think of is 'will this affect his eyesight or his kidneys' and you look into their beautiful little faces and you think 'do they know'.

I am not in any way saying that it is harder for a 'carer' - obviously it isnt. I just want everyone to understand just how hard and horrible it is to try to take charge of something that has a mind of its own and at any opportunity will catch you out like some sort of 'grim reaper' watching and waiting for you to take your eye off the ball and strike in the most hideous way possible.

I look after my childrens teeth and their feet and their eyesight and their education and I have some control of all of these - but diabates doesnt give anything back - nothing nice - nothing positive - just negativeness.

I hate diabetes and I hate that you all have it and if I could change things I would.:(Bev
 
Hi Bev, I am so sorry you are having these problems with your wonderful son. You should never feel guilty about expressing your views - I think a lot of people here appreciate how much harder it must be for the partner or carer, and in particular a parent, to deal with something they have even less control over than we that have the condition. The awful things are worrisome, but you are an excellent mum who is giving Alex the best possible future, and the future holds so much with the wonderful research and technology that is emerging.

You could not have done better for your son, Bev. 🙂
 
Yep.


Every time he injects and it hurts.
Every time he has a hypo and feels spaced out.
Every time it gets in the way of our 'normal' life.
Every time he can't be 'normal' anymore.

It hurts and I hate it.


But....

Then I see how his twin brother checks his blood meter to make sure he's okay. I hear his twin brother nagging him to eat slow release carbs and not just sweets when he's having a hypo.

And I realise how much closer we've all got because of this.

Yes, it is cr*p but some days there are tiny moments when we've somehow managed to drag something good out of it.

Still, I wish we didn't have to.
 
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Bev, what can I say that you haven't said. It's enough to make you want to scream. Last night we were up four times -- four times! -- because for some completely unknown reason E was high and wouldn't come down. It took two times for us to believe he was 'stuck' there and we had to be aggressive, and then the third and fourth to make sure we hadn't whacked him down so quickly that he was hypo... And then this morning a set sends no delivery. Thought I was going to die.

Sick of it is the way to put it. You are allowed to be sick of it. And I understand too that there is little real comfort in knowing you are doing your absolute best, for some reason. There is never a sense of 'job done' for ANY length of time. It's soul destroying indeed, and the only satisfaction seems so miserly: he's pretty much okay.

Yes, well... But even this is half killing you some of the time, I know.

The whole thing about diabetes never giving anything back. Yes. I often try to find the positive, the thing that you are supposed to be able to see when dealing with something grim... And actually, it's not there I don't think. The most positive thing is making it day to day, week to week and year to year, in decent health and with a good future.

But hey: don't other people have this without having to work so flipping hard for it?!

Got me started now!

I'll tell you the only positive I've ever been able to find out of all of this: understanding that I need other people in ways I never knew I did. I am eternally grateful for what having to deal with diabetes has taught me about people.

However, this lesson could have been learnt through any number of chronic conditions, I'm sure -- and I would have been grateful I think for a) me to have it and b) for one that wasn't quite so relentless and unforgiving!

I'm sorry Bev. I haven't really helped. But I'm glad to hear you say this. You can be darn sure that everyone, if only in some way and some of the time, feels it.

Finally: the lack of understanding of others is for me the very hardest thing to deal with. By far. I can make it through anything with care and support -- but am destroyed by casual remarks and the sense that we are in this alone and yet it's so hard.

xxoo
 
Hey Bev,

No words of mine can raelly ever be adequate in situations like this. It's at times like this when the folks with it just give in for a while. We get shouted at by our care teams from time to time and given the odd scare story. The best thing I find to do when I get like this is to forget it for a few days and beer up with my mates. I just totally drop everything at times like this and chill out as much as I can. Granted it's easy for me to say that as I never had much that can't be put off until the next day (or whenever tha hangover wears off!) but there's no other way to say it, take your foot off the gas for a little. Fourteen years down the line I still want to have perfect numbers every time I test my blood but I know I'm not going to get them which drives me up the wall. I'd love to say it gets easier with time but in all honesty it just depends on what kind of a day you've been having. Might I suggest giving the sensors a break and let Alex's body get back to strenght? I know I've got comparatively little knowledge having only be pumping for two weeks tomorrow but I'd just lessen the strains on Alex's body by dropping the sensors for a little and leaving it all.

I hope this makes sense, you know where I am if you want a whinge.

Tom
 
Northey,Heidi and Patricia,

Thankyou all for replying. I am sorry that I am in such a negative frame of mind. I wish I could just snap myself out of it - but for some reason - I cant. I am waiting up to do the latest test possible before the 3am test - so that i know whether the antibiotics have kicked in or not.

I have put on a 130% TB and will decided later whether to keep it on or not.

Alex is always happy - but today - he said that he is sick of this and he had tears brimming in his eyes when I said we needed to do a new sensor and he asked me whether it was worth all the effort. Of course I lied and said yes - but deep down I dont know whether it is - with all the infections etc. Sensors do give me peace of mind for nightime - but at what cost?

On friday he had a couple of friends over and they played after school and on the trampolene and in the park and had pizza and some junk to eat. I amazed myself that he didnt go over 8 for the whole time and only went down to 3.6 and I stupidly thought that I was getting better at this lark....but then it jumps up and causes chaos when you least expect it.

I seem to go from feeling proud of myself for keeping levels within range - to hating myself for not forseeing what can happen. I sometimes feel jealous of other families out and about and I look at them and think 'if only' things were that simple. Then I look at my boy and realise that if he can still smile through it all - then why am I being so pathetic and spineless?

Today I was explaining to Alex about using the tips of his fingers being bad for the future and he looked bored and was looking at his ipod and i got frustated with him. Then I realised that he doesnt want to hear it and he is 12 and why shouldnt he be looking at his ipod?

He has so many restrictions in his life already - who am i to add to them?

I do it to keep him safe and healthy - but am i drowning him with control? Yes I am. How do I get around this? I want to keep him safe and healthy - but I want him to have normal experiences and normal risks - how do I get the balance right?:confused:Bev
 
Hi Bev, I hope you feel better soon. You give lots of love and support to Alex and the rest of your family, you are a star. Come and have a moan and we will sned love and support.

I must admit I only have to hear a child crying and if I m not able to give a hug and help that child feel better I feel very upset too. I do it with any child, even when mum and dad are there and caring!
 
Hi Bev, I think you've got a really hard path to tread, I am so glad its me thats diabetic rather than one of my children. Hope that things sort themselves out for you all. Big hugs Jan
 
bev you are a supermum ...but only human ...hoping you feel a bit better today xxx big hugs sweetie xxx
 
Hi Bev, am new to forum but just wanted u to know that u r definitely not alone! Theres something about being a parent that we just expect sooo much of ourselves!

U r Human with all that that entails (good and bad) and sometimes life just ain't fair, but try not to knock urself down, hindsight is a wonderful thing and as sad as it seems even the best of us cannot prepare for evry eventuality that life throws up. Take each day as it comes my lv, things can only get betta for u and ur family, take care, shirl x
 
bev said:
Today I was explaining to Alex about using the tips of his fingers being bad for the future and he looked bored and was looking at his ipod and i got frustated with him. Then I realised that he doesnt want to hear it and he is 12 and why shouldnt he be looking at his ipod?

He has so many restrictions in his life already - who am i to add to them?

I do it to keep him safe and healthy - but am i drowning him with control? Yes I am. How do I get around this? I want to keep him safe and healthy - but I want him to have normal experiences and normal risks - how do I get the balance right?:confused:Bev
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Hi Bev, so sorry you're feeling the pressure right now. Listen to the others about what a great Mum you are - you have summed up the issue yourself - it's about assessing the situation as it arises and aiming for a balance. You observed Alex and his response and took your que from there - what a perceptive Mum. I don't think there is an ideal balance, but I'm sure the relationship between you will spport you both in that. As Alex grows he will exert his opinions and take over more of the control - probably not always in a way you will be happy with! But, you are providing him with a good education in managing his condition and he will also be more aware than others of how to keep himself healthy etc. thanks to you. The main thing is, he is happy. That's a real achievement. All you can do is the best you can at any given time, balancing his needs for good control with his needs as you so rightly put it, as a 12 year old, as best you both can. You're doing the right thing.
 
Thanks for all your kind words - it really does help me realise what great support I have here. I dont really like moaning as I think it can spiral into something very negative - but it was good to share it with you all and you have all helped to make me feel a bit more positive about things today - so thankyou. Your all wonderful.🙂Bev x
 
I'm a little late to this thread but it made me want to hug you so ((((Hugs)))) you are a supermum like am said. I can't begin to imagine what it feels to have a child with diabetes but I think the way you deal with it is just so amazing your always trying to stay positive and do the best you can for Alex. You are in no way spineless or pathetic your just trying to make the best out of a difficult situation. You are perfectly entitled to a moan and off days as a carer just like we are as well. 🙂

xxxx
 
Bev
Same as Emma, a little late (as always 🙄)
You may feel like your smothering him, but he WILL apreciate everything your doing for him. And its all because you love him.
I have to help look after my mom (Cerebal palsy & Diabetes) and twice recently she has been ill, and my was in my throat at the thought of losing her because her sugars would not stay above 4.
Also, the one thing thats kept me back about having children these few years is the thought that i could pass this stupid diabetes onto my children.
Yet reading around the forum people like you and Adrienne that make me realise that although there are ups and down, your child still has a fairly normal life, and loving parent.
Akasha
 
Akasha said:
Bev
Same as Emma, a little late (as always 🙄)
You may feel like your smothering him, but he WILL apreciate everything your doing for him. And its all because you love him.
I have to help look after my mom (Cerebal palsy & Diabetes) and twice recently she has been ill, and my was in my throat at the thought of losing her because her sugars would not stay above 4.
Also, the one thing thats kept me back about having children these few years is the thought that i could pass this stupid diabetes onto my children.
Yet reading around the forum people like you and Adrienne that make me realise that although there are ups and down, your child still has a fairly normal life, and loving parent.
Akasha
Click to expand...

Hi Akasha,
What a lovely thing to say. I think with your experience of type 1 you would make the perfect parent - dont ever be put off for the reasons you have said. There is no guarantee that your child would develop type 1 - just as there was no reason why Alex did - its pot luck. Your right about there being ups and downs - but lots of people have ups and downs for different reasons dont they. The situation with your mum must have been very scary - but you coped brilliantly and she is fine. It sounds like you have a lot on your plate too and I just wanted to wish you all the best with your mum etc.🙂Bev x
 
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