Moving to London


(Lea Taylor) #1

My 11 year old son was dx 5 months ago. Since then, in addition to the upheaval caused by diabetes, we found out we have to move abroad. He is understandably devastated to be leaving his friends and school, and his diabetes team. After having become proficient at administering his own injections, he is now too frightened to do them. He seems burned out and depressed, and his moods are unpredictable. It is so much for a child to take on and I am struggling too. Does anybody have any experience with any London Endos or diabetes teams? I am anxious to get a good support system in place for him.


(meme) #2

Hi Lea,I have a feeling that you are a mom that stays on top of things.I think you will continue asking queestions till you get answers.Keep in touch with JDRF and ask your d team how to best make this move.My daughter was dx at age 12,and her friends were such a help for her.The need to cont. on with what was before dx was needed for all of us.I think the weight of d that is on him will lift with time and he will make new friends.He will hopefully love London,and his new school.I know he will need to keep in touch with his friends here too.Find someone trained in dealing with d ,a psycologist that is part of your d team might help.We did not have that and I think it would have helped us so much.Best Wishes to you all,please let us know how things are going once you are settled.


(joe) #3

Lea,

please get in touch with the UK JDRF organization - website below:

http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&page_id=14BC820F-2A5E-7B6E-11FEF3EE184F6172

and

Juvenile Diabetes Research Foundation, United Kingdom

19 Angel Gate, City Road
London, EC1V 2PT United Kingdom

p: 011-44-20-7713-2030
f: 011-44-20-7713-2031

e-mail:info@jdrf.org.uk

 

I am sorry to hear about your son's diagnosis - your son and I were diagnosed about the same age.  I am 43 now.  I went through a horrible time as a young man, which included a lot of rebellion anger and frustration.   Even if you were not moving, it's possible he is having trouble with the long term idea that Diabetes is FOREVER.  No matter how great he took it at first or how tough he seems, wrapping your head around the idea that this is never going away takes time.  It took me almost 20 years to stop being angry.    I know a lot of folks in the UK through another online community called TuDiabetes http://tudiabetes.com/   and there is a group of diabetics in the UK (about 131 members) you can visit for a look here    http://tudiabetes.com/group/unitedkingdom    if there is anything I can do for you or if you would ever like to chat please feel free.


(Lea Taylor) #4

Dear Joe and Meme,

 

Thanks for your replies!! I truly appreciate your words of advice and encouragement. I will certainly get in touch with the organizations you suggested. 

 

Joe, you are right. Max is old enough to understand what FOREVER means, and the daily grind that D management entails. He is angry and overwhelmed, scared and sad. I wish I could take it all away as it is painfully unfair for him to have to have all this on his 11 year old shoulders. 

 

Cheers,

 

Lea


(NicolaM3) #5

Hi Lea,

I don't have advice for you regarding endos in London, but did want to encourage you that it can be a great experience living there! My family moved there in the 80's and I spent my high school years there. It was tough to leave friends behind, but the experience in London gave me a unique perspective. It is a really wonderful place to live. I was lucky to go to a private school, The American School in London, which also made the experience easier, as every child in the school has to be new at some point. Therefore friends are made very easily. We were also able to have class and field trip experiences that you would never experience in the US. (A class on Shakespeare that involved a trip to Stratford; a ski trip to the French Alps, concert band trips to Rome and Paris.) Not every kid gets to do these things! Even riding the tube or bus to school every day was something completely unique and interesting. After the trauma of the actual move, your family may find that it is the best decision you've made. I hope it all works out for you and your family. :)

Good luck!


(joe) #6

[quote user="Lea Taylor"]

 He is angry and overwhelmed, scared and sad. I wish I could take it all away as it is painfully unfair for him to have to have all this on his 11 year old shoulders. 

 Cheers,

 Lea

[/quote]

hi Lea,  one more comment - I know it must weigh heavy on your heart but what he is going through is "grief" and it can't be taken away - in fact I think it's good because the grieving process is the way to acceptance.   As long as he's talking about it he is healing.  I took a long time to feel better because I went "numb".  I stopped talking about it and actually pretended I didn't have anything wrong with me for many years.   There's a book called "Diabetic Burnout - what to do when you can't take it anymore".  It gives a good insight to the feelings and anguish a person faces with a disease that wont go away, and even sopme strategies to make self care and caregiving better for both of you. 

therapy would have helped me - but it took a long time before I was ready.. haha I guess I had to be 30something before I was ready to say I can't do it alone, and I can't keep pretending.      good luck to you and your son!!!


(joe) #7

haha I was typing fast... the actual title is "Diabetes Burnout..."  amazon link here http://www.amazon.com/Diabetes-Burnout-What-When-Anymore/dp/1580400337/ref=sr_1_1?ie=UTF8&s=books&qid=1251126610&sr=8-1

and one more comment ;-)  yes I can talk forever- Encourage Max to get online.  There are lots of young people here on this board, the'll all be able to identify with Max's feelings. 


(NicolaM3) #8

Joe and Lea,

My son is almost 17 and although not dealing with the issue of moving, he is also dealing with being overwhelmed by diabetes. He's on a pump, but lies about testing & bolusing and regularly lets his sugar run high. He is moody, miserable, and angry much of the time. We are about at the point of taking the pump away (and his control) and putting him on 2 shots a day of a novolog mix, just to get him healthy again (A1C is now over 12). I totally relate to the dilemma of how to best help a kid who is struggling with this overwhelming disease. Much of my son's anger comes out when we try to help him, and so our help tends to backfire.

Joe, thank you for the suggestion of the book. I would love for my son to choose to help himself and care for himself. Would you recommend it for a teenager to read?


(joe) #9

[quote user="NicolaM3"]

Joe and Lea,

My son is almost 17 and although not dealing with the issue of moving, he is also dealing with being overwhelmed by diabetes. He's on a pump, but lies about testing & bolusing and regularly lets his sugar run high. He is moody, miserable, and angry much of the time. We are about at the point of taking the pump away (and his control) and putting him on 2 shots a day of a novolog mix, just to get him healthy again (A1C is now over 12). I totally relate to the dilemma of how to best help a kid who is struggling with this overwhelming disease. Much of my son's anger comes out when we try to help him, and so our help tends to backfire.

Joe, thank you for the suggestion of the book. I would love for my son to choose to help himself and care for himself. Would you recommend it for a teenager to read?

[/quote]

hello nicola

please understand that these are only my thoughts and opinions - I have had T1D for 31 years dxd at 11.

at 17 the rebellion could be like a raging fire.  it was for me.  at 17 I hated the entire world, but I hated no one more than I hated myself.  I hated my friends for being normal and not understanding.  I hated my parents for not being able to fix me AND for trying to interfere with me, I hated God for this punishment that I couldn't begin to understand why I deserved it.  most of all I hated myself, I was ashamed for being broken, I let myself down and I hated it.  These anger feelings are a paradox, because I truly loved my parents, and my friends I also felt alone, terrified, and let down by the whole world for not helping me get better.  These confused misdirected feelings ended up destroying my own self esteem.  I smoked, I abused alcohol, I used drugs, I abused myself by not taking care of my diabetes and believe me, NO ONE could have beaten or threatened me into changing because I wanted to die but also I was afriad to kill myself.  purgatory is a good description.

"Burnout" is a good read, please take a look at it -  but I would just leave it around the house and see if he picks it up on his own.  I don't think "taking away" the pump is a good idea because it is just as easy to skip shots.  Perhaps it's even easier. 

The heart of the problem is the denial and anger, the endlessly wide, absolutely useless craving for a cure NOW: an easy way out so that I wouldn't have to face the facts which are simply stated:  I am sick, there is no cure,  there is no easy way out.  Facing that would be an admission that I needed help, and also that NO ONE could save me from this thing.

it's really easy to get stalled, other people either make like there's nothing wrong (overly optimistic) or feel the need to show you pictures of amputated limbs (overly pessimistic).  Both are easy to dismiss.  a person could wind up simply believeing the lies they tell themselves, and continue to be "non compliant" =)  I cringe when I read that description, even now.

I strongly believe that therapy is a good road to help.  a neutral (and smart and trained and talented) 3rd party can really get to the anger with diabetes and splay it out in the open.  once you get in contact with those feelings the healing starts.

beware the arguing because there is a psycology that comes along with it.    if I am angry with you and myself, and I learn over the years which buttons I can push to really get  YOU angry I can engineer a fight quite effortlessly.  The figt serves 2 purposes - I vent frustration a little, and you yelling at me PROVES I am worthless, or not a good person whcih validates the shame I feel for myself.  The fights are quite on purpose and are very damaging, to him and to you.  I believe he wants you to take away the pump, too - validating he doesn't deserve one, and validating his anger toward you.

you have got to take care of yourself and set an example.  it's very hard to learn about how you are (or may be) playing into this and change your behavior - because I know you are trying to help, YOU know you are trying to help, but it's not helping.

I wish you peace.  I hope you are not offended.  I would galdly talk to your son if he wants to yell at someone who understands his stuff probably better than HE understands it right now, (he'll probably pass) but if you can... please try to get him to talk to a therapist.


(NicolaM3) #10

Hi Joe,

Thanks for your reply. You gave me a lot to think about and a better insight into what may be going on in my son's mind. I'm not offended - it was really helpful to get that perspective from the teenage point of view!

Of course, being his mom, I still have a responsibility toward my son while he's a minor and in my home. I can't just let him self destruct. So just like I got him all of his vaccinations and didn't let him run into traffic, we came to a decision about our latest struggles with diabetes. Thankfully, it was a mutual decision to come off of the pump. He wasn't overly happy about it, but he did see how he was not managing things well and agreed to give the doctor's recommendations a try until his next appointment. Then we can revisit the issue and make changes if needed.

Thankfully, his blood sugar has immediately improved since switching to the insulin mix. He is now on 2 shots a day and does not have to remember anything. My husband or I remind him to test at breakfast and dinner and hand him the shot. Then for the rest of the day, he's off the hook - he doesn't have to count carbs or remember to bolus with each snack. He can just eat whatever, whenever. He looks better and his readings are always in the normal range. He has had more energy and has been more physically active and even seems more cheerful sometimes. I'm so thankful to have him seem more healthy. And I think it is a relief to him to not be in charge and guilty of constantly forgetting things. The burden is off his shoulders for a while.

We still have to deal with WHY this situation came about and will probably be getting counseling as you suggested. (Diabetes issues are not the only ones we are having.) The next trick will be getting him to agree to go.

Thanks, Nicola


(joe) #11

[quote user="NicolaM3"]

Thankfully, his blood sugar has immediately improved since switching to the insulin mix. He is now on 2 shots a day and does not have to remember anything. My husband or I remind him to test at breakfast and dinner and hand him the shot. Then for the rest of the day, he's off the hook - he doesn't have to count carbs or remember to bolus with each snack. He can just eat whatever, whenever.

[/quote]

 

Hi Nicola, thank you for writing back.  I am so glad he's feeling better and really that's what counts.  I know you are probably an expert at your son's condition - but I do want to make a comment, regarding eating and normal blood sugars and mixed medium acting insulin. 

I did 2 shots of mixed insulin for many years so I am a pro at my condition too.  I essentially took my pre-dosed insulin and then had to eat as the insulin peaked.  Skipping a snack or a meal would put me in the ground, because that kind of insulin "peaks"and drops your blood sugar, you eat to maintain your levels.  I did get very good at knowing if I need a cracker, or 3 twinkies to stay conscious and it always was harder when I played sports and then sat around or wasn't active for a day or two.  I also have an uncanny sense of my own blood sugar so it's not like I couldn't tell when I was getting low before a meal or snack (thank God).

I am happily still alive =) but the caution here is simple:  changes in activity levels or skipping meals becomes critical in this type of therapy.  So does eating snacks that have a known carb content - simply because you may need more or less carbs to get to the next sit down meal.  Probably the best habit to work on would be frequent blood sugar testing and logging.

I know that there are many therapies that work, and I am very glad you found one that is better for you.  My offer to chat still stands for you and your son, hope you are okay.   Cheers!