People underestimate the effects of living with Type 1 diabetes

[Wearenotalone3]

I have a partner who is type 1 diabetes, diagnosed as a child.

Many experts say living with type 1 these days is harder than HIV. With HIV you can take medication and live a normal life, but diabetics have to inject themselves with insulin several times a day and monitor their blood sugars constantly.

My partner is in his mid 30s and already has eye complications which required surgeries . He has nocturnal hypoglycemia several times a week which disrupts my sleep. Most of the time he can manage himself to eat but there have been times he has been like a drunk man and I’ve had to take charge. I’ve had to call emergency services a few times.

Unfortunately he has bad side effects sexually (impotence, or not keeping an erection). It has been about 10 years since he could ejaculate.

Too many people think it can be managed with a better diet and exercise and it’s just not true. People confuse it with type 2 and there’s a big difference.

Because of this ‘stigma’ I don’t think people would understand how hard it can be for partners and families. It’s not recognised like other long term conditions.

My son was diagnosed with Type 1 diabetes last year at the age of 39.
He'd been to see his gp months before the diagnosis and despite blood tests it wasn't picked up. It was only when his eyes became affected and he went back to the gp for more tests was he given his diagnosis.

His treatment on the NHS since then has been absolutely brilliant. And luckily his eyes weren't permanently damaged.

But the diagnosis absolutely has turned his life upside down. Neither he, nor I, had any idea of the impact of type 1, on virtually every part of life. And, as you say, when I mention his diagnosis to anyone they come out with all the assumptions of it being the same as type 2.

A year in and through determination on his part he is back running and playing badminton. And mentally is coming to terms with the constant monitoring and injections and planning his activities. But it's been a difficult adjustment.

Yes, I have it.

The effect it has on your quality of life, and the sheer 24/7 nature of the condition, is basically impossible to describe to anyone who hasn’t experienced it or lived with someone who has it.

You don’t have flare ups and downs, every day is a flare up, it’s the same every day. There are no periods where it’s better than others. It’s awful every day, and that is 100% guaranteed. It’s awful every night. It’s awful on your wedding day, when your children are being born, when you’re in a job interview.. it’s there.

My well meaning but annoying relatives seem to think it’s like a thyroid complaint, something that ebbs and flows in the background and just ‘needs you to take your medicine’. They don’t get it at all.

That sounds really difficult OP. Would he be a good candidate for a pump with a connected sensor, like Medtronic? Many diabetics find it changes their lives. (I have type 1 diabetes myself)

Absolutely. It is a bloody awful condition and has an impact on all aspects of life.
If one more person says to me oh your DD will be fine if she doesn’t eat sweets 😡😡

One of my close friends was diagnosed at 9 . Now in her early thirties she's having real problems with her eyesight. It affects every part of her life. Too many people confuse the 2 types of diabetes and don't realise how much impact type 1 has

I don’t have it or know anyone close with it but I think it sounds really hard. The constant mental load as well as the physical condition must be absolutely exhausting

Yes my son has it he is ten years old and it severely messes with his concentration at school to the point Ive had to get him a echp as the school haven’t got a clue how to meet his needs. He wasn’t like this before being diagnosed.
Dreading as he gets older despite it being quite well controlled, (school still fail to give him
corrections when his cgm is beeping like mad!)

Has your dh considered an insulin pump rather than injecting? There is also a blood glucose monitor that you stick on to yourself and it talks to your phone.

My father has recently gotten the monitor and it makes a huge difference. He didn't opt for the pump (mid 80's and felt that's a step too far) but dd has a friend with the pump and again, it makes a huge difference.

Nephew has just been diagnosed and is waiting to get sorted with the pump.

The comedian Ed Gamble in his autobiography described the mental load as being like having to manually calculate and adjust the electronic fuel injection system in your car whilst driving in heavy traffic at motorway speeds, one of the best descriptions I’ve read.

i think they’ve calculated that a T1 diabetic faces an extra 180 decisions per day. Add to that the fact that many of us will also go on to develop coeliac disease (and for any T1s out there who haven’t been tested, it’s worth it) which means 100% scrutiny of all food and drink labelling and preparation- ironically, much GF food is higher in sugar and carbs than non GF, which is worse for diabetics.

much sympathy

I was surprised at the posters on here all seeming to do things manually but when I googled it, it seems that you need to have failed injections to avail of the pump/monitor on the NHS. That is utterly bizarre. I know two people who were diagnosed with type 1 diabetes here in Ireland and the default treatment seems to be pump and built in monitor.

I'm not terribly familiar with the UK system but would pushing for the pump/monitor work? They make such a difference to the lives of those who have them. Even the monitor on its own without the pump makes a huge difference. My father just has the monitor and there are way fewer hypos than previously.

@OchonAgusOchonOh over here, a CGM is now the basic standard for T1 (but still denied for most T2 even on insulin), but only fairly recently- I got mine about 3 years ago. Even with them, they are not foolproof- can fall off, give false readings, lose connection with the phone, app updates get out of sync with phone updates etc.

pump/ closed loop is only standard treatment on NHS ( as I understand) for under 16s, pregnant women and those who cannot get good control with multiple daily injections.

there are also those who get good control with MDI and prefer the freedom of not having to wear a pump/several devices, they are much bulkier than CGMs, although getting smaller all the time.

Dancer Nikita Kuzmin wearing a CGM vs standard pump + CGM set-up

Is the CGM the blood sugar monitor? I don't have the terminology - my father just calls it The Monitor. Obviously, there are people like my father who don't want the pump but it seems weird that it's not at least offered as a default. It seems to be offered by default here, at least in terms of the people I know.

We used always be jealous of the NHS but now the HSE seems to be better in some areas and worse in others. HSE seems to be quicker to offer more modern treatments that are more expensive as a default.

Sorry! Yes CGM = continuous glucose monitor, MDI = multiple daily injections

I’d guess it’s cost/benefit in terms of NHS rollout of pumps, benefits are higher for children, pregnant ladies and those without good control. Those of us who are “good” and manage to maintain adequate control will not benefit to the same extent and therefore not “worth” the extra costs.

I don’t know how much a pump setup costs but guess it’s multiples of the CGM cost which in itself is fairly hefty, Libre CGMs retail at £67.99 and you need 2 a month, Dexcom cost more. NHS obviously get bulk discount on those numbers but still a big cost, plus more education and monitoring needed

That's a shame as the CDM has made such a difference to my father. I only know one person who started on injections and moved to the pump when it became available and it has made such a difference to him too.

You have my sympathy. It’s so frustrating when people cannot grasp what an awful disease it is. Kate Moss’s daughter has type 1 diabetes and has a pump.

I’ve looked after kids with type 1 on school trips, following them on the dexcom app and waking up several times in the night when it beeps to check if they’ve taken action, it’s really exhausting so I feel for them and their parents having to do it all the time.

It is hard not just physically but mentally having to be on the case the whole time. Trying to work out how many particular food combinations, coupled with exercise levels will affect the sugar levels

it is particularly hard for the majority who get it very young as the teen years can lead to so much damage - DH was “lucky” as he didn’t get it till his twenties so had the maturity to cope

shout out to our local NHS who turned up on the doorstep when he took sick and whose help advice and treatment was - well life saving

yes I had had the drunken man problem - when it dawned on me he had only had one pint. And the time when I was trying to feed him sugar and he thought I was trying to poison him. Because the brain shuts down first.

it is hard.

I’ve had T1 49 years, since I was 9 years old. I have had various complications, two toes amputated, laser eye treatments, hyp and hyperthyroidism. I also have a daughter with autism and a very stressful and unpredictable job as a social worker. Decision fatigue is very real for me and even though I have a pump and monitor my control is not perfect. My biggest bugbear is how much effort I have to make to stay well, I am so worried about my health and being around to support my daughter, while my husband drinks 10 bottles of wine in a weekend and smokes 40 fags a day. When I try to explain how worried I am I am just been controlling. Seems like ‘control’ has been a constant theme in my life.

Thank you for doing this - my ds was 5 when he developed t1 diabetes and without lovely teaching staff like you he’d have missed out on fun residential trips.

My DD’s partner has T1 - diagnosed when he was a teenager. He has a pump. I am in awe of the way he manages everything- you never have a day off from checks and decision making. He is also a coeliac just to add another layer of complication!

I was telling my son about this thread OP and he wondered if your partner knew about the DAFNE ( Dose Adjustment For Normal Eating) programme?
As I said up thread he was diagnosed with type 1 at almost 40 and he was referred on to this programme. It was invaluable to him and some of the people he met on the course were people
diagnosed with Type 1 in their childhood and who didn't have access to the information etc that is now available and were struggling to manage their diabetes. They found it very very helpful too.

My son has type 3c treated as tyoe 1 he had acute necrotising pancreatitus when he was 16 ( cause unknown) it totally destroyed his pancreas he was extremely ill and in DKA when diagnosed, he was in ICU for three weeks ites a horrible condition and nothing like type 2 im not minimising type 2 either my dh has it but its not comparable.