Diabetes has ruined my life

[ExtremelyW0rried]

"I don't understand how people with t1 say they can do everything other people do or how t1 fits in with them."

That is called denial. It's common with serious illnesses like this. It's also common in fairly new T1's who are told to just eat normally, not worry about the above-normal-for-a-human-being blood sugars, and drift along into retinopathy etc. Until they actually GET retinopathy etc., many believe it.

Try keto. It's a LOT easier, and a LOT better.

You mean they are in denial saying they can do everything a non-t1 can?

 

[NoKindOfSusie]

"I don't understand how people with t1 say they can do everything other people do or how t1 fits in with them."

That is called denial. It's common with serious illnesses like this. It's also common in fairly new T1's who are told to just eat normally, not worry about the above-normal-for-a-human-being blood sugars, and drift along into retinopathy etc. Until they actually GET retinopathy etc., many believe it.

Try keto. It's a LOT easier, and a LOT better.

To all the people who have ever told me I am an idiot, THIS is the best I could put it.

 

[donnellysdogs]

"I don't understand how people with t1 say they can do everything other people do or how t1 fits in with them."

That is called denial. It's common with serious illnesses like this. It's also common in fairly new T1's who are told to just eat normally, not worry about the above-normal-for-a-human-being blood sugars, and drift along into retinopathy etc. Until they actually GET retinopathy etc., many believe it.

Try keto. It's a LOT easier, and a LOT better.

As many T1's are diagnosed as children its not straight forward "do keto".

T1's understanding their bodies, carbs, proteins and insulins should be able to eat reasonably well and should not have to necessarily restrict foods.

I know I would never have accepted keo eating in my teens. I didnt do bad on the "exchange" system and having my treat of a difestive or two rich tea biscuits".....

The difference now to then.... we didnt have takeaways, mcdonalds, greggs etc.

 

[donnellysdogs]

Actually, that's irrelevant. A mother's milk is ketogenic, so kids can do keto just fine. There are youtube channels going into kids doing keto (not to mention demanding sports on keto) at great length if you require proof.



And there's the denial we were just discussing.

It is todays living that I was referring to, the fact when I was diagnosed (and no diabetic complications) our options were limited in comparison with normal luving today.

I would still have shrunk away from keto diet though...

It is not a natural choice nowadays to do anything like keto for children as you would be fighting against nhs advisers and also placing your child in a "different" eating regime to other children when it is actually very hard for T1 children to fit in anyway....

I'm not saying that restricting is not an option but it is very difficult in todays society to do that with the youngsters that are T1 diagnosed and the huge, huge varying choices they have and the peer pressure and also even Face book, social media and even school meals.....

Of course restrictions can be done but if you have one child with T1 and 2 without and two are elder and tgese children have been used to the now "normal foods"... well, all I am saying is that restricting choices may not be an actual easy choice...

 

[JonM1]

Regarding low mood and possible depression try the NHS Hospital Anxiety and Depression Scale test (eg: http://www.svri.org/sites/default/files/attachments/2016-01-13/HADS.pdf )

There are 14 multiple choice questions that take about 5 minutes max, then tot up your score and self refer if you feel your score shows that support would help.

Like getting a grip of lifestyle and medication to show diabetes who is boss it will probably feel better when you take charge of your psychological welfare.

 

[ickihun]

How are things today @ExtremelyW0rried ?

Look everyone is different, in their beliefs etc. All I would like you to do is accept who you are and that worring part of you can get out of hand to your detriment so it needs support. Do you agree?
Seek out as much support as you need and the diabetes will fall into place. With easy and without all this struggle and strife.
You can have decent hba1c and be happy. OK!

 

[therower]

@justbe . Valuable input I have to say.
Sadly I couldn't disagree more with you .
Diabetes is a condition not a disability. As a diabetic I would be more than able to fly a plane or fire a weapon. The only thing stopping me is the law.
Denial is a choice. I have pride in my diabetes, my choice. I'll stand up anytime and be more than happy to be who and what I am.
Being " fine " , eating normal and drifting along has actually made me healthier than a lot of people my age.
Your promotion of keto is ultimately the reason you have joined this thread.
Keto may work for some but not all and in my opinion is an option to be avoided at all costs in youngsters.
YouTube as proof???????. Perhaps we could just live our lives off YouTube. I would prefer to take advice from more reliable sources.

 

[EllieM]

Try keto. It's a LOT easier, and a LOT better.

So I've "muddled along" with T1 diabetes for 47 years, still no complications though I have some very minor issues (eyes aren't perfect but no one wants to laser them yet!). When I was young I simply carb counted, x carbs per meal, only one injection as a child. When I became pregnant high carb low gi was in fashion, so I duly listened to the dietician and had two healthy babies. I'm not totally sure what is in fashion now (have appointment with dietician in 1 month). but I've been avoiding anything with added sugar and generally keeping low gi and moderate carbs (cauliflower rice rules).

My son raves about how healthy veganism is (he's not diabetic). I can see his point but would find it hard to give up cheese. Presumably if you're ketogenic you'd have to give up beans? (Hummus and raw vegetables is one of my favourite meals).

Honestly, I feel like the dietary advice changes every 5 to 10 years and the advocates of different diets seem like the priests for different religions.

I'm sure that the amount of added sugar in modern processed food is bad for everyone but beyond that I'm so confused...

 

[himtoo]

Yes. That much is undeniable. Diabetes is classed as a disability (the clue is in the name), and for good reason. If nothing else, diabetics are not allowed to do certain kinds of job, like flying planes and serving in the military. You might argue that these are extreme examples, and yes, they are, but they're only extreme in that few people try to do them -- not that few people should be ABLE to do them, if they choose to. That's very different.

There's also a lot of sociopsychological pressure on diabetics to say "I'm fine", since they aren't visibly injured, surprisingly few understand that you can be truly ill or incapable without looking that way, and "no one likes a complainer".

perhaps have a read of some of @ScottyD posts on the forum - he is type 1 and a commercial airline pilot.

 

[JRW]

"I don't understand how people with t1 say they can do everything other people do or how t1 fits in with them."

That is called denial. It's common with serious illnesses like this. It's also common in fairly new T1's who are told to just eat normally, not worry about the above-normal-for-a-human-being blood sugars, and drift along into retinopathy etc. Until they actually GET retinopathy etc., many believe it.

Try keto. It's a LOT easier, and a LOT better.

I was diagnosed as T1 aged 37, I'm 43 now, I can honestly say I still do the things that I used to do. Snowboarding, cycling, sex, travelling, cooking, working, working out, socialising, partying etc. I see T1 as a bit of an inconvenience, rather than something that stops me doing things. I'm struggling to think of things that other people do that I can't, my wife, and all my friends aren't T1, my life hasn't changed in terms of what I do day to day, or year to year. I just need to give some thought as to my insulin regime, and if I f**k up once in a while then so be it.

 

[therower]

@JRW . Had to chuckle at your list.
Is that a random list or a list in order of importance?

 

[MPetzsch]

I am so fed up. Every special occasion. Every 'enjoyable' time. There it is. Ruining everything.

My pump set failed at 12pm on Christmas Day so I had to sit and watch all the normal people enjoying Christmas lunch with a blood sugar of 18, feeling ill, and I couldn't eat anything. One piece of toast I had on Christmas Day to eat and that was all. I know it's not the end of the world but it just spoils everything. I can't plan anything in case it's a day my blood sugars aren't behaving. I can't go out for meals. I can't go on holiday. I can't sleep more than two hours in a stretch as I have to get up to check my blood sugar. And after all that my a1c remains mediocre at 46. What is the point?! I may as well give up.

It's not like I can think in six months it'll be better. In a year. Two years. Because it won't ever be better, this is how it'll be for the rest of my life.

I don't understand how people with t1 say they can do everything other people do or how t1 fits in with them. Mine dominates my life every second of the day and night.

Hi there, I just want to say well done for putting a post up here. Better to get the thoughts out (in whatever fashion feels best for you) than to keep them in when you are feeling this way!

I have only been diagnosed T1 for a year and sometimes/often feel I'm pretty rubbish at managing it so far, but being diabetic seems to be all about the "work in progress", "take it day by day", "it's a marathon not a sprint", "when life throws you lemons (or a hypo), enjoy the free pass to eat jelly babies" type of mentality, rather than aiming for perfection... so try to tell yourself this as much as you can when you're feeling cross/frustrated/low in spirits.

You're right that it can be incredibly frustrating when the levels go a bit loopy, whether high or low, and I know what you mean when you say anxiety strikes. My poor other half has to put up with me occasionally waking up randomly in the night to check my sugars because I'm wondering if I feel a bit shivery (low) or feel a bit hot and bothered (high).... I think better safe than sorry but I try not to let myself do it too often, and even sometimes just go to bed a fraction high because life is far too short to get it perfect every time!

You are doing an amazing job to still be soldiering on and managing to have a family as well, so keep us posted on how you're getting on A few tips from my very amateur experience so far:

(i) it's not very fun, but I find it helps to almost completely cut the carbs for a day or so to get things back under control if I'm consistently very high, and also consider increasing background insulin gradually, one unit at a time, until levels improve (but always make room for a small bit of dark chocolate, or a bite of someone else's toast - my biggest weakness - because we are only human after all).
(ii) have you ever done yoga? It is a really great way to slow the breathing and stretch out the body. Concentrating on something like this for an hour is proven to slow blood pressure and gives you that before bed/after waking up relaxed stretched feeling, and gets the blood moving. It can help the insulin move around a better too, but it's not so extreme you worry about a hypo.
(iii) as with yoga, going for a walk can be another really good way to get the blood moving and bring levels down. I always take a snack of some kind, like a couple of apples, or a Nakd bar, and/or a bottle of orange juice, just in case of a hypo. Always cheers me up emotionally too. Fresh air is amazing.

Sending you lots of positive vibes and hope this helps in any small way

 

[MPetzsch]

The final thing I wanted to say is "preparation, preparation, preparation" i.e. always have snacks with you, just in case, and always have insulin with you, again, just in case! That way, you decide what you do with your life and your diabetes fits in with that. Not the other way around. This was the best piece of advice my diabetic nurse gave me at the start. I think her point was that this way, you don't have to (and shouldn't) resent the condition, but instead you are empowered to live life with it... a bit like a whale having to swim everywhere with barnacles hanging on, they just seem so chilled about the whole thing. Hope this helps x

 

[becca59]

I was diagnosed as T1 aged 37, I'm 43 now, I can honestly say I still do the things that I used to do. Snowboarding, cycling, sex, travelling, cooking, working, working out, socialising, partying etc. I see T1 as a bit of an inconvenience, rather than something that stops me doing things. I'm struggling to think of things that other people do that I can't, my wife, and all my friends aren't T1, my life hasn't changed in terms of what I do day to day, or year to year. I just need to give some thought as to my insulin regime, and if I f**k up once in a while then so be it.

Fantastic post. Go live your life! I know I am, of all the things that have happened to the many people around me over the years this type 1 thing is a cinch! A daily pain but a cinch non the less.

 

[becca59]

159 replies to this post, most with positive ideas and support. I am beginning to think that the micro managing and awareness we have today is hampering us somewhat in living our lives to the full. In the not too distant past, the way type 1 was managed, and without social media/forums to keep feeding our insecurities, people just got on with it. Many of these people post on here and are doing just fine and so much more relaxed about life. Yes I know knowledge is power, but it can also be our downfall. I am still keen to know If ExtremelyWOrried has sought help. I do so hope so.

 

[ExtremelyW0rried]

I've sought help for depression / anxiety countless times since I had my daughter but the waiting list for any support is very long. They just prescribe antidepressants and I don't want to take any other medication on top of what I already take.

I have an appointment with the dsn in February but I already know it will be futile. Consultant is April but it will be someone different again I expect so I'm not hugely optimistic. I have ordered a dexcom in the hope that I might be able to at least get some sleep since it should hopefully alarm if my blood sugar is going too high or too low. The libre is good but I still have to set my alarm throughout the night to check just to be on the safe side. I'm on my own a lot overnight with the children so it's just not a risk I'm willing to take, even though (touch wood) I've never had a problem before.

Just got to hang on in there I suppose.

 

[Sue192]

159 replies to this post, most with positive ideas and support. I am beginning to think that the micro managing and awareness we have today is hampering us somewhat in living our lives to the full. In the not too distant past, the way type 1 was managed, and without social media/forums to keep feeding our insecurities, people just got on with it. Many of these people post on here and are doing just fine and so much more relaxed about life. Yes I know knowledge is power, but it can also be our downfall. I am still keen to know If ExtremelyWOrried has sought help. I do so hope so.

Thank you for stating this and very well said - I absolutely agree with you, and I've been thinking along those lines for a while. There is of course that saying 'a little knowledge is a dangerous thing', but there is the opposite of that: too much knowledge, or information, can also be dangerous. Places like this Forum are a godsend, but there are others that preach a certain viewpoint without listening to a different viewpoint, and can be very forceful and censorious if you don't kowtow to whatever they are preaching or advocating. Every little minute detail about how they manage something, do something, cope with something is broadcast, which may well help many but conversely make others more anxious. I am lucky (so far) in that I can manage my levels by diet alone - others of course do have to be very careful - and I suppose I have just got on with it, with the help of a general reading of the advice on here and going nowhere near other social media (not that I'm on Facebook, Instagram et al).

 

[tigger]

@ExtremelyW0rried you can call up and request earlier appointments either directly with the consultant (call hospital switchboard and ask for their secretary and tell them you're really not coping) or via the general appointments line if your hospital has one. Your consultant can also queue jump you for certain services so raise all these issues with them. Also you can request to see the same consultant each time (providing there is one).

 

[ickihun]

I've sought help for depression / anxiety countless times since I had my daughter but the waiting list for any support is very long. They just prescribe antidepressants and I don't want to take any other medication on top of what I already take.

I have an appointment with the dsn in February but I already know it will be futile. Consultant is April but it will be someone different again I expect so I'm not hugely optimistic. I have ordered a dexcom in the hope that I might be able to at least get some sleep since it should hopefully alarm if my blood sugar is going too high or too low. The libre is good but I still have to set my alarm throughout the night to check just to be on the safe side. I'm on my own a lot overnight with the children so it's just not a risk I'm willing to take, even though (touch wood) I've never had a problem before.

Just got to hang on in there I suppose.

You know your body best.
We are listening but if at anytime you need more help speak to your gp. Antidepressants do save lives. I know a man who struggled without gp advice and he's now dead leaving 3 kids. He stopped drinking for an interview which the alcohol supported him, or so he thought, instead. His gp and hospital all advised antidepressants but he did not refill his repeat. Alcohol was same price in his eyes.

 

[Robinredbreast]

I am so fed up. Every special occasion. Every 'enjoyable' time. There it is. Ruining everything.

My pump set failed at 12pm on Christmas Day so I had to sit and watch all the normal people enjoying Christmas lunch with a blood sugar of 18, feeling ill, and I couldn't eat anything. One piece of toast I had on Christmas Day to eat and that was all. I know it's not the end of the world but it just spoils everything. I can't plan anything in case it's a day my blood sugars aren't behaving. I can't go out for meals. I can't go on holiday. I can't sleep more than two hours in a stretch as I have to get up to check my blood sugar. And after all that my a1c remains mediocre at 46. What is the point?! I may as well give up.

It's not like I can think in six months it'll be better. In a year. Two years. Because it won't ever be better, this is how it'll be for the rest of my life.

I don't understand how people with t1 say they can do everything other people do or how t1 fits in with them. Mine dominates my life every second of the day and night.

Hi, It is hard at times, this is my 29th year with type 1 and I have had some very sad, stressful, worrying and scary times in my life ( which I won't bore you with) But...................... I still work, I stay active and the most blessed diabetes moment was when I had my daughter at 42 1/2 years old,( also when my toddler granddaughter was seriously ill in HDU when diagnosed with type 1). Decades ago, that may not of been possible. I'm a fighter, but sometimes it is a struggle and so frustrating, so I have to dig deep to get that determination and fighting spirit out and to carry on day to day. Life is for living, just do the best you can ,take baby steps, give yourself a pat on the back and treat yourself now and then.
Take care X