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New here, partner is a type 1 and is 29. worried about it al

Discussion in 'Greetings and Introductions' started by alexierose, Nov 14, 2013.

  1. alexierose

    alexierose · Member

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    Hello all. :wave: My name is Alexi Rose. I am 28 and from the south east.
    I feel like I am drowning..

    I have been with my partner for 4 and a half years. I love him, there is no doubt on that. I am his carer now and I worry for him so much and the medical problems keep coming. Like most people I didn't have the first clue about diabetes until I became friends with my partner.There is so much to learn and to try to understand about it all. I feel for everyone of you that has it, you are all so brave and I hope for a cure every day https://www.facebook.com/TheDiabetesSite/photos_stream

    Here if you wish to read is a summery (I say summery but there is so much I wish to get out, so to me it will be short, to you I am afraid it may not :shifty: It has been a hellova trip so far!

    He has been a diabetic since he was 6. My Partner Tom is a uncontrolled type 1 and finds it so hard to get his sugars under control.

    • *His HA1c is awful. 18.3. :thumbdown: it has been better and worse. but hardly ever below 8.


    • *He has regular burnouts, he has spoken to me about them and cannot remember when he first suffered from one as there was no real symptoms. When he was a teenager he did the usual rebel thing of seeking sweets and chocolate and any food he was told no about when he was younger. He has always been a bigger lad, comfort eating has always been a big thing in his life.

      *His Dad died in his arms when he was 18. There was no closure to it and no offer of help or professional advice and so he spiraled after that. His weight dropped in stones and he spent the days working hard and the nights partying and not eating. He lived on his Slow acting most of the time.From then on the jobs have been on and off (professional job but very high stress levels so can get the job but cannot stay for long due to stress of hospital due to DKA.)

      * this past month he almost committed suicide through either not bothering to inject or by injecting too much. This was found out by me and I took him straight to the doctor and he is now on antidepressants (mixed views on them myself) and is having Cognitive Behavior Therapy soon and is currently with a Counselor to talk about the issues that are effecting him.

      *since we have been together I have lost count of the amount of times he has been admitted to hospital with DKA. http://en.wikipedia.org/wiki/Diabetic_ketoacidosis


      *He has had numerous ops on his eyes including Retinopathy, http://en.wikipedia.org/wiki/Diabetic_retinopathy

      *Cataracts for which he had surgery and was the youngest on the ward by 40 years :roll: http://en.wikipedia.org/wiki/Cataract

      *laser treatment to try to mend the veins in his eyes. He has lost the provisional vision in his left eye since we have been together and has to wear glasses all the time, the left eyes sight could give way anytime. He is almost completely Night blind and has to wear different glasses for reading which causes him headaches.


      *he is losing feeling in his fingers and toes and has lost both of his big toe nails and it is a constant battle for me to look after them as when he knocks in to something (all the time) he bursts the newly grown layer and then they bleed badly and become very sticky and sore.

      *He has Erectile Dis-function. This not a joke or a funny matter. I love him no matter if we can pursue that area of our relationship or not. It makes him feel so bad and not enough for me, as he feels at our ages we should be rocking the boat! :p he has been given the blue tablets but all they do is work briefly then make him feel sick and ill. :(

      *We believe he is losing the nerves in his stomach (testing atm) As his stomach takes a long time to empty and he has horrible sulfurous burps and can be violently sick for what seems like no reason.

      *He has some sort of IBS related problem so there is high chance of him getting an attack at any time especially if he is stressed so he hates to leave the house.


      * When he wakes up in the morning and his bm is 16 he is happy because that is low for him. This is not because he eats bad stuff, yes we are both a bit over weight but we eat healthy stuff.

      ** and added to this we went to the docs for blood tests to check his kidney function and have found out he has the beginnings of kidney disease. So any pleasure he had in having a nice meal is going to have to be thrown away and put back to a strict diet. This I am sure to you is a small sacrifice, but to a chef who has had to give up his career due to this disease, me cooking him a nice steak and veg was something to look forward too.

    We are closed off in our own little world. I have my daughter from a previous relationship here too and he feels bad that we don't take her out as much as normal people would. We don't go out period as much as we want. The feeling of people watching you or judging you is just to palpable and possible that we don't like to do it. I suffer from depression anyway so his need to hide just fuels and reciprocates mine.

    We are apply for pip and carers allowance and DLA. THIS IS NOT BECAUSE WE DON'T WANT TO WORK. he would love to work. I would too but he is too ill and I have him and my daughter to care for. So the waiting game is here to see if they agree that we are not faking it and that he is genuinely this ill and that diabetes can be this debilitating. I feel so sad that we have to say all these problems on our forms to try to prove that he is ill. Guilty till proved innocent in their eyes it feels. I hate having no money and living on benefits. This was not what i or we had planned out for our lives. I have stayed awake all night writing this. I keep a smile plastered on my face 24/7 to try to help him not to stress so bm's and bla bla etc.... I love him so much.
    I just feel this is so much. It is not fair.

    thank you to anyone who has read this. IF even 1 person has i don't feel so alone. x
     
  2. mentat

    mentat Type 1 · Well-Known Member

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    Re: New here, partner is a type 1 and is 29. worried about i

    Hi Alexie!


    A moving story. You are very strong, you are a model partner.

    I'm a 25 year old guy, I've had Type 1 for 3 years now, thankfully it's very well controlled but it took an incredible toll on my mental health. And thankfully my partner is just as supportive as you, I don't know where I'd be without her. But I can imagine your pain. It must be almost unbearable.

    I believe in the saying "It's never too late". Maybe there is something you can learn or do that will help get the diabetes under better control. And that would probably extend his life significantly and improve his health dramatically! My partner spent a year working on me, to convince me to try new things. I was terrified of change. One by one, she got me to keep a diary, then carb count, and recently I decided to try a low carb diet (with fantastic results) and now I'm signed up for an insulin pump!

    A few things that we do to help ease the burden:
    -sometimes I do a 24-hour fast. This is really liberating as I don't need to worry about counting food, and my blood sugar is pretty stable. (Do NOT try fasting without first learning how a type 1 diabetic should do it.)
    -sometimes I hand over all responsibility for diabetes to my partner for a day or two. She checks my sugars, does all the carb counting, and decides my dosages.
    -sometimes I take over all responsibility of diabetes, so that my partner can have a break. This helps her stay sane.


    I'd be happy to talk to you further, feel free to send me a PM (private message).
     
  3. alexierose

    alexierose · Member

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    Re: New here, partner is a type 1 and is 29. worried about i

    thank you your reply has meant a lot
     
  4. dawnmc

    dawnmc Type 2 · Well-Known Member

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    Re: New here, partner is a type 1 and is 29. worried about i

    I would suggest you read Dr Bernstiens book Diabetes Solution. He's a Dr who has had Type 1 since being a child.
    Also Google low carb, there are loads of excellent web sites with delicious tasty food to cook.
     
  5. alexierose

    alexierose · Member

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    Re: New here, partner is a type 1 and is 29. worried about i

    ok thank you dawn i will get on to looking those up. perhaps after a little sleep :yawn: :thumbup: :wave:
     
  6. WhitbyJet

    WhitbyJet · Well-Known Member

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    Re: New here, partner is a type 1 and is 29. worried about i

    Yet another heartrending thread to remind us all of how vital good diabetic control is, right from the very start. This sneaky disease makes me so damned angry, playing games with us, for ages you think you get away with it, then all of a sudden int pounces, seemingly attacking you from all sides at once.

    Thank you for posting Alexierose, I sent you a PM, please read.

    Big hugs x
     
  7. alexierose

    alexierose · Member

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    Re: New here, partner is a type 1 and is 29. worried about i

    thank you Whitbyjet, you have brought tears from your words of kindness both here and in the Pm. i have read it and i will reply once i am allowed.
    i think i can trust you :wink: :wink: :lol: and i would be honored to give you my address. My daughter is now 7 she is called Lizzie. The idea that the book could be coming means alot to both me and my partner.

    I have told him about this tread and have let him read it, which i wasn't planning on doing.

    THANK YOU ALL FOR TAKING THE TIME TO READ THIS. IT REALLY MEANS THE WORLD XXX
     
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