family and christmas

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Patricia

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Relationship to Diabetes
Parent
I don't want to start a fire here...but I just want a small yelp of frustration.

We had a great xmas: lots of family, lots of great food with reasonable control (lots in double digits, but short lived; several hypos, short-lived)... Lots of laughs and good times...

BUT... I come to the end of it all, at home, feeling that no one really understands anything. And no one asks. My son is a coper, and coping so beautifully, so well, so healthy, happy and thriving...So I think that no one knows and thinks to ask us, his parents, how it's going. Or what it's like.

It feels pathetic. I have very good friends, who *do* know, and who *do* ask, and who *do* understand.

I know that family often seem to understand least, all this business of the big D... But I can't help but feel a little heartbroken. Something has shifted now. And there are now things they will never understand, and that I can possibly never now bring up? Because it would be too obsessive, too self concerned, when everything seems to be going well. They would say, maybe rightly, that the worst is over.

Yet it's ongoing. On and on. We stay up until midnight when everyone else has crashed -- because we need to test our son. We try to eat earlier, so we stay up less late. We stress out when leaving the house with everyone else because the consequences of leaving without what we need are not worth the price. We don't say these things. We keep going. And no one notices, or asks. And I daren't say. We just 'get on with it'.

My family is truly smashing. So caring, so loving. And grandfather made a point of sitting down with E and telling him how proud he is of him. This is worth gold. But still -- a part of me feels so weary, so alone.

Sigh. Sorry. Does anyone else go through this?
 
My father is type 2. I'd love him and me to be able to support each other, but my mother is so cavalier bout the whole thing there is no chance for my dad and me to spend some quality time together and maybe even help each other.

I find my friends are more supportive and interested than my mum. The rest of the family lives too far away for it to be noticieble.
 
Patricia, I can't imagine what it is like to be the parent of a child with diabetes. All I can say is how this struck a cord with me in terms of just getting on with it and I'm an adult.
 
sorry i cant compare with having a child with D and the trials and the triumphs that brings but as for my family they all live so far away for it to be an issue (good or bad thing i dont know) o/hs family are great and this year they really did try so hard making it not into a big deal with this being my first xmas with D. i even got things like a whole load of perfume and clothes and only 1 box of choccies . I dont actually think the subject ever crops up amongst me and my mates unless i start the convo i think they think if they mention it i will rip off there heads and ram it down there throats, I guess it they dont ask they think its a good thing but sometimes someone asking me once in a while would do me the power of good i think as at the moment i mainly talk to my other half, i think not knowing one other diabetic is an issue for me my unc is type 1 but lives miles away and talking on the phone just aint the same thats why im so looking forward to my course in jan
 
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Patricia, I understand your feelings completely. Like you, i have a supportive family and friends but no-one can really understand how we feel unless they are going through the same thing. Of course, this applies to every condition and situation that people find themselves in. It is a case of not truly understanding someone else unless you are standing in their shoes (or some similar saying??).

I think all the parents on this forum will understand how you feel. You are so not alone, my friend. Sending hugs. xx
 
Hi Patricia.

I feel exactly the same about my close family. In fact Ive mentioned it to my mum a few times now. When I was first diagnosed she was there with me learning everything about Diabetes, but then I went to uni and started looking after myself. Now she knows nothing about it, but i'm back living with her for awhile. The last time I mentioned it (couple of days ago) I said, "you really should read a book or something..." and she replied "I know, but I find it really depressing when I read about it".

My reply was "yeah and... it's even more depressing for ME" 😱

I share your pain.
 
Not really a problem I was ill, so didn't see anyone :D

Just remember friends you choose, family you're stuck with.

But someone chose your family as their friends 🙄
 
Patricia,

I absolutely know what your talking about here.

I have often thought that my family dont care or that they think that dealing with diabetes is trivial. It has made me angry at times too.

But I have now come to the conclusion that it is *not* because they dont care - it is because they just dont *get it*! We live with it 24 hours a day (yes - i dream about levels!) and they dont. It is as simple as that i think.

A couple of years ago I might have been the same as them. I think it must be difficult to see a child who looks extremely healthy and showing no obvious 'signs' of being ill (apart from a hypo of course), to think of them as having a life-threatening condition. Alex is a very capable child (as i am sure all the children are who have diabetes) and he would hate it if he was treated with kid gloves. He has brilliant coping skills and I suspect this is the reason that my family assume that dealing with diabetes is a 'piece of cake'!

So, although it is infuriating at times, I have taken the view that I would rather they treated Alex like any other 'normal' 11 year old - the trade- off being that the diabetes is all but ignored. I know this sounds terribly blase and cold, but I think its just a coping strategy that we have sort of adopted. I very much doubt that our families will ever 'get it' - so its probably a waste of time and emotion trying to get them to! For them to 'get it' - they would have to have lived with it themselves - and I wouldnt wish this on anyone.

Be proud that E is a wonderful young man who can/has coped with this hugely intrusive condition and just gets on with things. He is a credit to you and your husband and, in time, he too, will realise that the extended family are not being dismissive of this condition. They just dont 'get it'!

Also, I just wanted to say that, every single parent on here (and the other list) will identify with how this makes you feel, and we are all 'with you' in the struggle that is diabetes. I understand entirely how this makes you feel - because I feel the same as you.

Please try not to feel angry with your family, I am certain that their attitude is not intentional. It is simply ignorance - and entirely unintentional.🙂Bev
 
Thanks for all this folks...it's always a relief to be in touch with people who really *do* get it.

The saving grace of all this is that my son is indeed treated entirely 'normally' -- subject to the same loves and expectations as all the other grandchildren, as you say Bev...The source of my mostly private heartbreak is quite selfish: that no one knows or asks about us, his parents. No one in the family has said to us and how are you?. I don't expect this from most family, but there are one or two people in the family I considered us to be very close to -- and it's a loss for me that they haven't asked or even seemed to make space for us to volunteer what it's like...

It's a loss, that's what's paining me. Another loss due to diabetes. Which I suspect, like so many things, is irrecoverable.

Katie and others: your feelings are so important for me as a parent to see. It's such a difficult balance to strike, not knowing how much to show as a parent. What it seems to come down to in my view is just *being there* emotionally. The mechanics cannot be alleviated, and the elusive idea of 'good control' is just so emotive and difficult, and I can see this raising all kinds of awful situations between parents and children...but living with diabetes means a constant, invisible struggle. It's the acknowledgment of this which is surely the most important way to regularly touch base? Just to say *I haven't forgotten what you go through daily*? Is this what you would like?

Sigh.
 
Hi Patricia,

I feel all of your post and actually could have written it myself. From people not asking to worrying when you leave the house in case you have forgotten insulin or needles or BM machine, snacks, hypo stuff etc, us parents do all of this of course we do and it is quite pressured, imagine being stuck in the snow in the car with none of that stuff (one of the panics i had in the last 2 weeks!)

One of my brothers visited with his wife & kids over Xmas and previous to this has never rang me since the diagnosis (grrrr) so didnt even know what diabetes was all about, Jim was having a hypo when they arrived and he said 'oh yeah whats that hes got again' im sure people think its a cold, i wanna scream its not a bloody cold thats going away next week!! To me this shows the sad ignorance to the disease, its unfortunate but so true, i think i was probably ignorant to it before it hit us like a ton of bricks. Once explained to them about diabetes and what we have to do for Jim they were mortified and apologised for not phoning before hand, my sister in law was a upset.

So in answer to your question; yes we go through it all too, thats why i love this place (although i dont post that often i always read) it makes you feel among friends and we all care about diabetes for our children. Its still all new for me but am learning every day.

Take Care xx
 
Patricia said:
...
Katie and others: your feelings are so important for me as a parent to see. It's such a difficult balance to strike, not knowing how much to show as a parent. What it seems to come down to in my view is just *being there* emotionally. The mechanics cannot be alleviated, and the elusive idea of 'good control' is just so emotive and difficult, and I can see this raising all kinds of awful situations between parents and children...but living with diabetes means a constant, invisible struggle. It's the acknowledgment of this which is surely the most important way to regularly touch base? Just to say *I haven't forgotten what you go through daily*? Is this what you would like?

Sigh.
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Hmm i'm not sure. My mum just occasionally tries to talk about things she no longer has a clue about. She will say something like "ooh you had a hypo yesterday, aren't you having too many". I think if you stay involved with Diabetes even after E has left for uni (or whatever he chooses to do), perhaps by carrying on talking to people from here, you will carry on learning about it instead of forgetting some things you know now. So if E mentions something to you about his Diabetes, you will know what to say. Whereas in my mum's case she doesn't really know anything about it anymore and she is the ONE person around me who i expect to have knowledge of it.
 
Patricia said:
I think that no one knows and thinks to ask us, his parents, how it's going. Or what it's like.

My family is truly smashing. So caring, so loving. And grandfather made a point of sitting down with E and telling him how proud he is of him. This is worth gold. But still -- a part of me feels so weary, so alone.

Sigh. Sorry. Does anyone else go through this?
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Hi Patricia,

I'm really sorry you're feeling so alone - and I suspect if your family knew you felt like this they'd be mortified - from what you said they sound like a caring bunch & it's good that E's grandfather had that talk with him. (Sounds like a good grandfather!) I don't think that your sitting down with your parents and saying something to let them know how much of a strain it is would be self obsessed at all - they are still your parents and hopefully would want for you to be able to unburden? Maybe they don't know how to start that conversation or comment on the situation - perhaps they don't have a grasp of what it must be like for you, as I think diabetes is one of those situations like watching ducks on the pond - it looks calm above the surface but there's a lot of work going on underneath! I wonder if their not saying anything is actually a bit of a backhanded compliment?! (Not what you want, I know! 🙄)

Also maybe they might be afraid of upsetting you by asking? (eg don't want to seem to be negative about things?)

It might be that they see how wonderfully E (& therefore by inference / assumption you) are coping & don't think/dare to look deeper/scratch the surface - but I bet if you tried to have a chat with them they wouldn't think it at all selfish for you to admit to feeling strain - we all need support at the end of the day! 🙂 I think the parents on this forum are an amazing group of people, and I honestly take my hat off to you...I also imagine caring for a diabetic child must be a hell of a strain & strongly feel there is no shame in letting those people who should be there for you know when you need a shoulder to cry on (as it were)...after all, in their defence they are only human and may honestly just not realise (like with one case on this post thingy) just what you are going through...give them a chance to help. 🙂

Really hope you feel better soon & 2010 is a really good year for you & your family.

Best wishes, Twitchy. x
 
Hi Patricia,

Me and my close family could definately relate to that post! You are not alone! Your son sounds like a very brave young man - and you sound like supermum!

Happy new year 🙂
 
Patricia, i too can relate to everything in your post, although of course i am the adult with diabetes.

My parents do not understand diabetes and nor do i think they even want too. They are elderly and do not really understand everything i go through daily to survive, (not moaning about this, just stating the facts).

When I see my mum she just says how fat/thin im looking, am i eating properly? It had my pump two months before she asked if id got that "thingy" yet.

Over xmas I asked my dad if he wanted to see my pump, he said "no thanks ive enough problems of my own" It hurts but they dont realise this im sure, they see you coping and think all is ok.

I think its totally a case of if its not happening to you, you dont ever "get it". But as you know we all "get it" on here so you are never alone.
 
i can only compare with having a child with a different disability i am the one with the diabetes but son also has probs with a different condition , i understand the frustration of being a parent and being told by those nearest and dearest 'oh we understand it fully' only knowing that they really dont understand,they mean well but just have really no idea , and only have a limited understanding of what you and your childs needs and goes through every day , i guess here is the kind of place people do have that real understanding, we know the never ending blood tests, appointments , wobbles hypos and hi's organisation etc , chin up🙂
 
Hi Patricia,

I know when I saw my medical psychologist a little while back and we discussed my families reactions, she made me aware that this is life with a chronic disease- people dont know what to say, most will not experience what we do. When I broke my back I got cards and flowers and an influx of support, it healed, I got better. When I was diagnosed with diabetes people didnt know how to respond......so they didnt. As the quack said, no use sending a care saying "get well soon".

I rarely get asked about it by friends and I cant remember about my family asking. People forget because we do cope that it is still on-going.

Strangely, (or maybe not?) I have a friend with a genetic disorder that means she has baby teeth and frizzy hair (I cant remember what this is called) so she wears dentures. No big deal you may think, but she hid her dentures from her boyfriend, spent ages hiding it and on a daily basis she things about what she eats, spends ages cleaning her dentures and worries constantly about if something were to happen to her like if they were to break (they are only supplied in one town in the UK). They are painful after a while through the day and she has had them for about 12 years now I think.

Ironically me and her are in complete sync. The difference for once being that diabetes is more heard of than her disorder and more supported!

The situation you describe is sad, I think its something we all get hit with at some stage. A shame. Keep calm Patricia, and carry on.....
 
i'm going to try and talk to my mum and see if she will join us on the forum - i bet she'd have something to say on this topic.

my parents are very supportive (and always have been). it's usually me that brings anything to do with the big D up, but that's the way i prefer it - being a control freak, i think i'd get really annoyed if they started asking and asking and asking.

i've spoken to them both in depth about how i feel about my diabetes. i would LOVE to know more about how they feel about it...hmmm, i really must try and get them on here!
 
shiv said:
i'm going to try and talk to my mum and see if she will join us on the forum - i bet she'd have something to say on this topic.

my parents are very supportive (and always have been). it's usually me that brings anything to do with the big D up, but that's the way i prefer it - being a control freak, i think i'd get really annoyed if they started asking and asking and asking.

i've spoken to them both in depth about how i feel about my diabetes. i would LOVE to know more about how they feel about it...hmmm, i really must try and get them on here!
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blimey I would love to get my dad on hee but he has only just discovered how to switch his mobile on
 
steff09 said:
blimey I would love to get my dad on hee but he has only just discovered how to switch his mobile on
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LOL that made me laugh, my FIL (also type 2) keeps on texting and/or phoning me on his mobile as I am first in his phonebook then wondering why I answer the phone as it is not me he is looking for... As for getting him to join this forum, when we got him a freeview box a couple of years ago we got calls for weeks afterwards as he couldnt figure out how to work it (despite the fact we showed him quite a few times). I think I would loose my sanity if he got a computer and connected to the internet :D
 
My family don't talk about diabetes much (I got diagnosed after leaving home) but I like to share good test results with them, even if it probably doesn't mean much. If they bring up anything else I tend to snap at them, which I know is horrible of me, and I feel bad afterwards.

One thing that does drive me mad is people's euphemisms for things.On boxing day we went for a 5 mile hike before lunch, and we always take some chocolates with us to eat as we go, so I was merrily munching away as we marched up the hill. Then my Mum said "Do you bring your "kit" with you on walks like this? I asked "what kit?", thinking she meant compasses and space blankets! Turned out she meant insulin, so I was a bit short with her and said "well no, because I won't be eating lunch on the walk". So my Dad advised me not to have any more sweets... I tried to explain about needing some sugar to get me through the walk, but I think they just don't get it as they don't see me every day. So I tend to hide hypos from them because they'd only worry.

I think everyone's different, some people like to be asked about diabetes and others don't. But I know it is different for parents of children with diabetes, and I agree it would be nice to be asked how you are coping with what is clearly a massive change to your lives.
 
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