A mother who is having a bad day/week/month

[simone3112]

My sons was diagnosed Nov 08 he was 2.5 years old. He went from 2 injections up to 6 sometimes 8 injections. Harry's bloods have always been a mistery. I thought I was going to crack up every night was the same 12am high, injection then check him every hour till 4 am. He went onto the pump in August 09 life became so much easier. Harrison's a grazer so injections were a nightmare. The pumps fantastic but the nightmare of nightimes have started again. I've done 12am and 3am checks 1.30am and 4.30am checks changed basals rates put them back again. I finally give in last week and fitted the sensor (last resort as it takes 2 people to pin harrison down to fit it - he hates it). More basal setting changes and I was nearly there. THEN he gets a viral infection his bloods are again all over the place and Im SICK. Im sick of having no sleep, im sick of acting positive. Im a single mother with 2 children and a full time Job. My 8 year old daughter knows more about Diabetes than his own dad. Im sick of making wrong decisions, im sick of being the person that has to make all the descisions right or wrong. Im sick of smiling when asked about Harry and being told how well I'm coping. Imagine breaking down and talking about sensitivty rates and basal rates. TODAY im not coping and I might not cope tomorrow but I'll get on with it cause it's my son that is suffering. No one wants to hear that though. I fear that if I don't get control of his bloods now wot are his chances when he's older. NO BODY WANTS TO HEAR THAT but that's what I think. Even if I wanted to sleep I cant sleep out of fear that I might not wake up to check him. I dont trust anyone but me to check him. The sensor told me he was 8.9 when he was really 19. Im thankful that he's on the pump cause his life and my life was so much harder on injections. I know that I write all this now and tonight might be the night where I've finally suceeded and his bloods are perfect. BUT TODAY THERE NOT and I feel guilty and helpless and my daughter who is not diabetic is pushed out yet again. I HATE DIABETES, I HATE MY EX, I HATE THE FACT THAT THERE ISN'T ANY ANSWERS!! I hate that I just want to cry and feel selfish that I feel like this when my sons the one that has it and has to live with it for the rest of his life. Someone please tell me they feel like this sometimes

 

[simone3112]

And my last gripe. Im tired of being told I look tired!!!!!!!! Of course I look tired. Im averagin on 4-5hours sleep!!!! Why do people feel the need to point you the obvious???

 

[rspence]

HUG and hand held out to you

hi simone,

I feel like this too. My son was diagnosed at the same age as Harrison, but only 2 months ago. I'm already sick of it, sick that the levels are all over the place, sick that i have to wake in the night to check him, sick in the pit of my stomach all day then hungry all night.

Its pants, naff, rubbish, hard work, full on and I too worry that I'm pushing my other kid out.

I don't have answers but I'll walk alongside you for a bit if you want hypothetical company,

rachel

 

[Pigeon]

And my last gripe. Im tired of being told I look tired!!!!!!!! Of course I look tired. Im averagin on 4-5hours sleep!!!! Why do people feel the need to point you the obvious???

I know, I hate it when people say that!!

Sorry to hear you're having such a difficult time of it, I can't imagine how hard it must be to look after 2 children on your own, even without diabetes thrown into the mix!

Just thought I'd ask if you've joined the children with diabetes email list, a few parents on here are on the list and it sounds like a good place to get support from people who are having the same problems. I'm sure some of the parents on here will pop along soon to share their experiences with you.

Big hug, xxx

 

[simone3112]

Sorry to sound stupid but how do I register for that. Just joined this today 🙂 Thank u x

 

[Northerner]

Sorry to sound stupid but how do I register for that. Just joined this today 🙂 Thank u x

Hi Simone, this is the website:

http://www.childrenwithdiabetesuk.org/

 

[CarolK]

Hi Simone,
Its nice to hear someone be so honest.My situation is very different in that my son is and adult, hes had D for 7 years, and to be honest I still feel all of those emotions youre describing. Every day I think how much I hate this illness and how much it has disrupted all of our lives ( I have other non D children), then I have all of those guilt feelings, because as youve said , I havent got this terrible illness, it is my son who has to live with this and the long term problems it may bring, and then I feel incredibly selfish , that I long for our old lives back, where we didnt have these worries. Everyone else seems so positive, and I then feel a failure, why cant I be like that. The only thing we can do is look after our children, I think the frustrating thing about D is that we cant make it better.

 

[simone3112]

hi simone,

I feel like this too. My son was diagnosed at the same age as Harrison, but only 2 months ago. I'm already sick of it, sick that the levels are all over the place, sick that i have to wake in the night to check him, sick in the pit of my stomach all day then hungry all night.

Its pants, naff, rubbish, hard work, full on and I too worry that I'm pushing my other kid out.

I don't have answers but I'll walk alongside you for a bit if you want hypothetical company,

rachel

Arrrgggh Rachel I totally feel for u and know every bit of what your feeling. It's horrible. I remember harry asking for fruit like he was a good boy and me telling him NO. It's even worse when then still just babies and a nap sends u into panic mode incase it's a hypo. Im having a tough time but it's nothing on what u'll be feeling. I was so scared and still am of making a mistake and I will never understand diabetes. Im having a bad few weeks but harry's had diabetes for 18 months now. I hate to admit this cause I will never accept this disease but it does become normality. It's nice speaking to someone who has a child so young with diabetes.
The pushing the other child out thing im still trying to stop. Jodie wakes up and tells me she's bad, before diabetes I would send her to school. I don't now I keep her off and spoil her. It's wrong and I know it's wrong but she's learnt that bad health is the key in our house for attention. She's fab and deserve my attention but Harrison diabetes rules our roost. When he's naughty is cause he's high, she can't have sweets around him cause he wants them, she naturally watches over him when they play out. It's a lifetime change for everyone involved. Im not experienced so have no answers but I know wot it's to have a child so young and the battles you'll face. xxxxxxxxxxxxxxxx

 

[simone3112]

Hi Simone,
Its nice to hear someone be so honest.My situation is very different in that my son is and adult, hes had D for 7 years, and to be honest I still feel all of those emotions youre describing. Every day I think how much I hate this illness and how much it has disrupted all of our lives ( I have other non D children), then I have all of those guilt feelings, because as youve said , I havent got this terrible illness, it is my son who has to live with this and the long term problems it may bring, and then I feel incredibly selfish , that I long for our old lives back, where we didnt have these worries. Everyone else seems so positive, and I then feel a failure, why cant I be like that. The only thing we can do is look after our children, I think the frustrating thing about D is that we cant make it better.

You've hit the nail on the head. Nothing I do makes him better. It's refreshing to be able to say these things cause if I talked like this to my family and friends they would think I was cracking up. To be honest I don't like to talk to them cause I know they haven't got a clue and however much they try to understand (bless them) they can never understand. It's like I'll never know what Harrisons feels like when he goes from high to low, low to high. I can only imagine. He's a proper little boy and the funniest kid i've met. But it breaks my heart that he was cursed with this. He's four when offered a drink he'll ask if its diabetic (diet). xx

 

[simone3112]

Thank You Everyone For Your Comments. Im So Please I've Became A Member. You's Have Made Me Feel Normal Again!!!!!!! Xxxxxxxxxxx

 

[Freddie99]

Hi Simone,

I'd like firstly to offer you a massive hugs. I don't know how my parents coped with my diagnosis or how they managed to look after me in the early years. If there is anything that I can do please send me a private message or something like that. I'm always happy to listen and I do occaisionally have some decent advice in me.

Tom

 

[simone3112]

Hi Simone,

I'd like firstly to offer you a massive hugs. I don't know how my parents coped with my diagnosis or how they managed to look after me in the early years. If there is anything that I can do please send me a private message or something like that. I'm always happy to listen and I do occaisionally have some decent advice in me.

Tom

Hi Tom. Thank you. This site has done wonders for me today. I've joined alot of sites on facebook but there mostly Americans and like everyone close to me there on the other side of the world haha. I spent along time praying for normality before diabetes today I praying for the normal diabetes. This site has been a god send today. Thanks again. 10 more minutes I find out whether 2nights the night I'll sleep till 3am x

 

[Freddie99]

Hi Tom. Thank you. This site has done wonders for me today. I've joined alot of sites on facebook but there mostly Americans and like everyone close to me there on the other side of the world haha. I spent along time praying for normality before diabetes today I praying for the normal diabetes. This site has been a god send today. Thanks again. 10 more minutes I find out whether 2nights the night I'll sleep till 3am x

Ah that's what I first did. I do love this place as it's British and we all speak the same language in terms of diabetes. It's done wonders for me. It helped me make my mind up on my pump and then to choose which one I wanted. If I had gone with what my team like I would have ended up with a pump that I didn't like.
I hate to say it but there isn't really a normal day as far as diabetes is concerned. My life with it has most definitely been a roller coaster ride, especially over the last two months when I've started on my pump with all that has gone on around me.

Tom

 

[getcarter76]

Hello Simone,

Firstly welcome and secondly (((((big hugs))))

I would also like to add from a different perspective like Tom. This is the first parent page i have added to but felt i must 🙂

I have been diabetic since i was 6 and am now 33 and a mum myself so understand it from all angles! I stiil take multiple injections which my parents had to support as pumps were never really heard of. I could go on about the routines and struggles we all had back in 'those days'.

As a diabetic you have down days but as a mum/parent i get the impression it can be worse to a degree as you can feel so helpless. My mum still says to me to this day that she would swap my diabetes with her in an instance. Times may change but those feelings of helplessness are the same

Children are really quite resiliant and bounce back very quick. I for one cannot remember not being diabetic and whilst i wouldn't wish it on anyone, have grown up not knowing any different.

My parents have seen me through childhood, school and my teens with the added diabetes to contend with and I am grateful for all they have done for me.

You will have good days and bad but thats why we are all here to pick you up and give you big hugs when you need them. I also appreciate how hard it must be with your daughter as well who you say feels pushed out. I can also understand that you probably feel you have to put on a brave face with her as you need to be strong. This may sound daft as i don't know how old she is but is there anyway of involving her so that in a funny way she feels included and you supported? I know it can often be easy to say and in practice things dont always go to plan but, can you show her books of what has 'gone wrong' (this is what i try and explain to my daughter about me who is 4 - going on 24!!), demonstate to her the difference with their bodies and that sort of thing?

I really hope things get better for you emotionally and you know where we all are if you need anything whatsoever....

I'm off to bed now as its late o'clock and way past my bedtime (*yawns*)

night night

Bernie xx 🙂

 

[simone3112]

Harrison Bloods

Thank you all and I had a perfect day and night last night. No highs No lows. I feel great this morning. He was 7.5 at 12 am and 6.9 at 8 am. He has slept the full night and we've even had a lie in (he normally gets up around 6.30am)

Jodie is 8 Bernie. She is going to be doing the Great North Walk with me. 10 miles. It will be me and her raising money for Harry, which she's so excited to do. We are just waiting for the sponsor forms.

I feel great this morning!!!:

 

[Northerner]

Thank you all and I had a perfect day and night last night. No highs No lows. I feel great this morning. He was 7.5 at 12 am and 6.9 at 8 am. He has slept the full night and we've even had a lie in (he normally gets up around 6.30am)

Jodie is 8 Bernie. She is going to be doing the Great North Walk with me. 10 miles. It will be me and her raising money for Harry, which she's so excited to do. We are just waiting for the sponsor forms.

I feel great this morning!!!:

Hi Simone, so pleased to hear you had a good night and that you are feeling so much brighter today! 🙂 Just a thought, following on from something Bernie said - have a look at our 'diabotics' page http://diabotica.blogspot.com . A lot of children find them funny to make and it helps take away some of the fear of diabetes for some. One four-year-old wanted to start doing his own fingerprick tests so he could have more materials for his creations!

Hope you have a good day today and a chance to recharge your batteries 🙂

 

[getcarter76]

Thank you all and I had a perfect day and night last night. No highs No lows. I feel great this morning. He was 7.5 at 12 am and 6.9 at 8 am. He has slept the full night and we've even had a lie in (he normally gets up around 6.30am)

Jodie is 8 Bernie. She is going to be doing the Great North Walk with me. 10 miles. It will be me and her raising money for Harry, which she's so excited to do. We are just waiting for the sponsor forms.

I feel great this morning!!!:

That is great news Simone and i think you needed that!

That is great about Jodie as well....good on you both 🙂

Its good to hear the ups and we are all hear with the downs too 🙂

Bernie xx 🙂

 

[ruthelliot]

Hi Simone,
I'm sure you've already experienced how helpful this site can be - like you i find it a huge support just to be able to talk to people who genuinely know what your going through and as a parent it gives me hope to hear from other adults who have come through a lifehood of diabetes and come out to adulthood still smiling and still healthy. That is afterall the reason we stay up all night checking our little ones blood - that and the rest! I remember also the first time I induced a fit of tears in my then 2yr old because he couldn't have an apple - how unnatural did that feel! I also felt a lot of guilt over how my 2 older boys were feeling - Ben was only 18mths when diagnosed a year and a half ago and having moved away from the baby stage we were just finding a nice little routine to family life. They will no doubt have some not so good memories of those initial months and perhaps beyond but we all adapt. I imagine being on your own there isn't much opportunity to go out with your daughter on your own. While I'm fortunate enough to have my husband helping our work situation means more often than not only one of us is around. As Ben is the youngest we try to have regular film nights or similar when he goes to bed and the older boys and i cuddle up for a film and some popcorn etc. I'm careful not to make this about something Ben cant do because of his diabetes rather a treat for them because they are older.
Night times for us are also a complete shot in the dark. At the moment our consultant says he is almost certainly randomly producing insulin - i've no idea how long this can go on as our first hospital said it wouldn't happen after the first few months! The one thing our team keep trying to drum into us is that children will always be unpredictable and pre-school even more so. I try hard just to let myself feel supersmug on a good day and accept full credit for the good results but on the bad - the gods are to blame (or that damn diabetes fairy - see northerners poems!) Anyway I'll ramble no more but as everyone has said there's always someone hear ready with a virtual hug and personally if I can ever lend an ear I'm only too happy.

 

[simone3112]

Hi Simone,
I'm sure you've already experienced how helpful this site can be - like you i find it a huge support just to be able to talk to people who genuinely know what your going through and as a parent it gives me hope to hear from other adults who have come through a lifehood of diabetes and come out to adulthood still smiling and still healthy. That is afterall the reason we stay up all night checking our little ones blood - that and the rest! I remember also the first time I induced a fit of tears in my then 2yr old because he couldn't have an apple - how unnatural did that feel! I also felt a lot of guilt over how my 2 older boys were feeling - Ben was only 18mths when diagnosed a year and a half ago and having moved away from the baby stage we were just finding a nice little routine to family life. They will no doubt have some not so good memories of those initial months and perhaps beyond but we all adapt. I imagine being on your own there isn't much opportunity to go out with your daughter on your own. While I'm fortunate enough to have my husband helping our work situation means more often than not only one of us is around. As Ben is the youngest we try to have regular film nights or similar when he goes to bed and the older boys and i cuddle up for a film and some popcorn etc. I'm careful not to make this about something Ben cant do because of his diabetes rather a treat for them because they are older.
Night times for us are also a complete shot in the dark. At the moment our consultant says he is almost certainly randomly producing insulin - i've no idea how long this can go on as our first hospital said it wouldn't happen after the first few months! The one thing our team keep trying to drum into us is that children will always be unpredictable and pre-school even more so. I try hard just to let myself feel supersmug on a good day and accept full credit for the good results but on the bad - the gods are to blame (or that damn diabetes fairy - see northerners poems!) Anyway I'll ramble no more but as everyone has said there's always someone hear ready with a virtual hug and personally if I can ever lend an ear I'm only too happy.

Thank you. I've been there with Harry and food which has resulted in me crying with him. With the pump he gets to eat when he wants and while some foods are restricted ie sweets. He has ice cream and chocolate.

Jodie has been through a lot. She was the one that used to have to help me pin Harrison down when injections were needed. She still cuddles him every pump change. She my rock. I couldn't be more proud of them, im just not always proud of myself and how I deal with things. We had a good day yesterday but he's been high all day today. If I cant get his bloods right in the morning it has a knock on effect. It's so hard to keep them right in the morning as he is so insulin resistant and eats constantly. Im not going to be pesimistic today though. Hopefully we have another good night.

It's good to know there's people experiencing what I am and I'm not alone.

 

[ruthelliot]

Thank you. I've been there with Harry and food which has resulted in me crying with him. With the pump he gets to eat when he wants and while some foods are restricted ie sweets. He has ice cream and chocolate.

Jodie has been through a lot. She was the one that used to have to help me pin Harrison down when injections were needed. She still cuddles him every pump change. She my rock. I couldn't be more proud of them, im just not always proud of myself and how I deal with things. We had a good day yesterday but he's been high all day today. If I cant get his bloods right in the morning it has a knock on effect. It's so hard to keep them right in the morning as he is so insulin resistant and eats constantly. Im not going to be pesimistic today though. Hopefully we have another good night.

It's good to know there's people experiencing what I am and I'm not alone.

Thats exactly the problem we have with ben in the mornings - loves a big breakfast but then high for ages - if we manage to rectify this you can gaurantee he'll crash at lunchtime. Remember you cant logically be proud of you children without being proud of yourself - they didn't get to be such little stars without a whole lot of love. We cant get it right all the time and I know there are nights when they're in bed i beat myself up for hours for bad results or being short tempered or just anything less than a first class earth mother but I know I couldn't love my boys more and I'll never stop trying to get it all right - thats what your doing and from the sounds of it doing it well so be proud!