wish I could just focus on the present!

[sue63]

Hi

This is still all new to me, my son was only diagnosed a month ago. He is doing well and I am trying to be positive. I am slowly reading things and trying to educate myself so I can offer him support.

I feel so anxious and cross tonight as I came across an article in The Telegraph about Type 1 that was so negative just listing shortened life expectancy and all the horrible complications, it was stressing the lack of support for kids in school so I assume it focused on the negative.

I think I going to stop looking as it upsets me so much.

How do other parents cope with all the horrible statistics often published in the media. I want to be realisitc but not live in daily fear or I don't want my son to live like that either.

Any experienced parents please advise me as I know there is a lot of positives too...just hard to focus on those sometimes!

Thank you x

 

[Andy HB]

You don't believe everything you read in the press do you? 😉

Being less flippant though 🙂, I'm not a Type 1 nor do I have children, but I have seen one or two people on these forums who have had Type 1 since childhood. Given consistent control they have managed to get beyond their 60's without any complications.

There is no reason why your son should be any different (indeed, his prognosis is vastly improved in comparison).

Andy 🙂

 

[gem123]

hi hun sorry im not a experienced mum but i just know how u are feeling at the mo, !!my daughter was diagnosed on the 3rd of june,how olds your child? i have freaked myself out reading things, so have stopped now and just stickin to trusted websites and books, and my diabetec team. hope you find things easier to cope with soon xxx🙂

 

[sue63]

Hi Gem

Thanks.... my son is 20 so a young adult really and is managing well. I am fortunate that he is sensible but 4 weeks on after a trip round the shops I can sense he is getting frustrated that he can't have his favourite sugary cereal!

I know coming to term with diabetes is a long process and I suspect I sm still grieving for that expected ' normal' life we all plan for our children.

Perhaps it's a mum thing too. I am very close to my son and it is painful to watch him go through this.

I am going to stop googling though as it's horrible and try and focus on the positive as so many people on here have encouraged me.

How are you coping Gem? xxx

 

[Copepod]

No reason why your son can't have sugary cereal, as long as he takes enough insulin to balance. This is much easier on MDI or basal blous regime (1 or 2 long acting insulin injections per day, plus short acting insulin with each meal) than on 2 per day bimodal insulin injections. Type 1 diabetes may screw up lots of things like careers in armed forces, professional SCUBA diving, driving minibuses / PSVs / HGVs, working in Antarctica & on oil rigs etc, but doesn't need to restrict food intake, and with good control, complications are not inevitable - I was diagnosed 14 years ago, aged 30 years, and it has restricted my career, but I don't have any complications.

 

[Gemma444]

Hi Sue

Sorry you feeling so low and yes I agree about the press and even my son who is 8 has been asked if he ate too much sugar. Makes me so mad. I was also told by someone that he may grow out of it!! again I was very mad.


If I remember rightly your son was put on mixed insulin, I would say that when he goes to his next clinic appt he asks to go onto MDI. I did, we are currently on 3 injections a day and just waiting for training to be done at school so that we can go onto 4 injections a day. jack had a ginger bread man with england shirt icing on last night as a little treat and he loved it. We just carb counted it and bloods after 2 hours were 6.0. I felt on mixed that we were restricted in lots of ways.

Hope you feel better soon.

Gem xx

 

[Sugarbum]

Hi Sue,

Its really good to do your research and learn lots of stuff about diabetes but I agree, it certainly can get you down.

I think because it is such ealry days you havent had the opportunity to see that your son is going to be ok and that this is something he will live with in life and deal with accordingly. My mum finds it very overwhelming because naturally she worries all the time for me and diabetes heightens that a lot. But try not to let it get consumming. On a day to day basis the vast majority of us are going about our normal lives doing normal things and not affected by it.

 

[sue63]

Thank you all so much .....reassured me again 🙂 we return to the hospital in a couple of weeks and we will ask about the multiple injections.

I want this sorted for him before uni starts in September as eating as a student can be erratic. At the moment he has meals provided by me at set times! We need more flexibility.

Thank you for reminding me too that it is very early days...I think I am trying to cope with too much too soon!

Thank you x

 

[simone3112]

Hi

As a mother u want to learn everything u can - good or bad!!! It's wot mothers do! We are now 18 months down the line n im still learning. The only advice I can give u is 'accept wot u can not change'!!!
Im still trying to accept the horror stories n prey for the good!
My son was diagnosed at 2.5yrs old. He was a wild child and never stopped. I used to look at my friends children n think I wish Harry was more like them, cuddle in, watch tv - NOT run wild. My preys got answered a few months before he was diagnosed - Harry cuddle up on the setee watching disney films - perfect child. He took bad and was diagnosed with diabetes!!!!!!!! I cried for months wishing for my Tazmanian Haz back-I didn't get it!!! I can remember coming out of hospital n Harry biting me n scratching my face because i didn't get him to the toilet fast enough!!! I sat on the bathroom floor n cried n cried!!My son was wild but not aggressive!!!
I've got my little **** back n I say this in a nice way. My son had a personality from the day he was born. He has never been a child to take tantrums or cry. He has always been a devil!! At 18 month he unscrewed a lid off a bottle of bleach!!!!The only way to describe him is a tazminain devil!!
Diabetes THEN took my baby!!!!
It took his life for a couple of months but wot his body couldn't fight his personality did. He's back to being the nightmare I cherish!!!
Basically as a mother we'll always read the horror stories n will pray for a cure or pray that we can have it instead of them!!!!
When Im down I think back to Harry aka ASBO (Harrybo - ASBO) being diagnosed!!
Every week gets easier than the last n every hypo is better than the first even when it's worse.
U learn to cope! Diabetes can never take the soul!! The future n the past doesn't make the soul. My son's smile or his "never again ever am i going to be ur friend"!!! is my son!! his little sayings is wot's fill's my heart!!! I've got a story to tell my friends every week it's 'THE GUESS WOT HARRY DID THIS WEEK' Is just my Harry not Diabetes. YOU HAVE TO HOLD ON TO THAT!!! xx
Im a bit tipsey tonight lol so hope it all makes sense xxxx

 

[rspence]

sue

hi sue - this is meant to be an encouragement hope it sounds like it: whenever i read your comments i can relate to them 100% and its like you remind me how i felt in the early days/weeks after diagnosis. I'm a little ahead of you on the journey - a whole 3m since my son was diagnosed(!) - so i find great encourgaement reading what you write on here and then comparing it to my diary and thinking phew not only am i experiencing completely normal emotions on this rollercoaster but this lovely lady sue will be able to move on a little gradually and in turn support others soon after diagnosis when the time is right!

'live in the now the today and the this week,' that becomes my coping method when it is so overwhelmingly hard.

good luck rachel xx
ps i hope he can eat his fav sugary cereal in bountiful amounts soon - my son eats wheetos every morning!

 

[sue63]

rachel 🙂

Thank you so much for your lovely comments. Such an encouragement to me.

You are doing so well just a couple of months ahead of me. Being a mum is hard in all this as however old the child they are still your child! What a roller coaster of emotions this is.

I have a lovely lady who emailed me today. She has a son diagnosed 3 years ago at the age of 23. He visited her last week and he was happy and healthy and they didn't mention D once! I hope this encourages you, it did me 🙂

Thank you for the encouragement about food ...Joel loves weetos so when we start injecting more we can eat them again!

take care love sue x

 

[Joan Getty]

I am the mother of a 20 year old who was diagnosed when she was 12. The worst time is the first few months when everything is new to you and your son will come up against lots of different situations. My daughter has just completed her 2nd year at university and is living away from home. She attends music festivals with friends, parties (a lot) with fellow students and doesn't let diabetes control her life at all. Eventually you will begin to worry less as you see you son coping with everyday life. I try not to read any of the negative press writings as I believe if my daughter keeps healthy and manages a good HBA1C there is no reason why she can't live a long and healthy life. I found being a member of Diabetes UK invaluable especially at the beginning and had great support from the specialist nurse who I would ring with all sorts of queries.

Try not to worry and just allow your son to get on with it armed with as much information as possible.

 

[Ruth Goode]

Sue,

You are not the only one, I can related to you as my daughter aged 2 was diagnosed only 6 weeks ago and we are doing well so far and staying positive, also taking a day at a time is important.

Like you reading all these negatives are scary, Im dreading for her when she reach in her teens! Now I try to ingore all these negatives and focus on the positives and the most important thing is keeping Carly well. (There are lots of good advices, help and support on this forum, thanks guys & gals)

Like you we are having a meeting on Wednesday to discuss about Carly having 4 injections a day, hopefully it will help her more so good luck to you both.

(It's like a song... it's just a ride, sometimes it's up and sometimes it's down, don't hide away and enjoy the ride)

 

[sue63]

Joan and Ruth ....thank you both so much.

The last couple of weeks have been easier as I have felt a bit more relaxed. It's such a steep learning curve and like you say facing new activities and how it affects levels. Joel exercises so much so we have had to make sure we accomodate that in to snacking and eating etc

He is off tonight though playing at a gig and I am so grateful he is carrying on as normal armed with his lucozade! I am proud of how he is coping.

Thank you for your support. Hospital appointment Monday so we will see what they say about MDI. Joel seems to be managing well on 2 -doesn't particularly want to inject more so we shall see.

Hope your hospital appointment goes well Ruth 🙂 x

 

[Copepod]

If Joel prefers 2 injections per day, managing his activities and gets reasonable HbA1c results with that regime, then no reason for him to change. However, http://www.runsweet.com/ is great for information and advice on all types of sport with type 1 diabetes.
One of the key skills I've learned is dicovering which foods are most resistant to spending weeks in bags / pockets before needing eating eg muesli bars and round oatcakes are very good, as packs are waterproof and they're edible even if very squashed.

 

[sue63]

Thank you all so much...great advice as always 🙂

 

[Patricia]

Hi Sue

Just a quick note to say that I can relate to all this SO much... My son was diagnosed 19 months ago, aged 12, and the first few months were incredibly, incredibly grim in so many ways. I bounced around from 'well he's alive and all will be fine' to almost uncontrollable grief and anger and intense worry.

I don't have as many panics as I used to have. I see that he mainly manages it. But I also see more than ever that he needs people around him who understand without making a fuss, and will probably always need this. It feels a compromise to me -- I want him to be free, not to fuss, to always do exactly what he wants... but this won't happen. He must always slightly plan.

Saying that, his sense of 'good people' and 'not so good people' has really come to the fore. He knows what's good for him and what he needs. Most of the time. Diabetes has made him face these decisions sooner, but perhaps in that way he'll be the happier for it? I don't know. I tell myself this anyway.

Re sugary cereal: like everyone says, more flexible regimes mean more flexible eating. My son is on a pump and eats largely what he wants, though we do not keep things like donuts etc actually on tap in the house... He does eat sugary cereal though, and sweet spreads, and chocolate. Large amounts of sweet things needing large amounts of insulin, like cake, can still be missed by the insulin and make him feel poorly, but generally it works...

Hang in there. I don't know what else to say. It's hard, but it does get to the point where everyday life is easier. Not that it ever goes away I think.... But daily life becomes much more full of air you can breathe!

xxoo

 

[sue63]

Patricia...thank you so much 🙂

You have written down exactly how I feel......I have felt more positive the last few days and today I am tired of it all...want to go and buy a big bag of cookies and not worry who eats them and just have a diabetes free day!

Funnily enough my son seems ok.....happy, normal, playing his guitar. looking forward to his final year at uni with great excitiement. I am beginning to wonder if us mums fare the worst in this!

Looking back over the last strange 8 weeks since diagnosis things have got a little easier...I can actually sleep and not check him in the night ( he's 20 for goodness sake!!!) I can forget about D for a little while and I am immensly proud of my son who copes wonderfully. He has big plans including loads of travel and I am desperate for him to continue with this....with a little planning as you said.

Most of all I am grateful for this forum and for mums who understand🙂