Please help my anxiety

[Ellz_10]

Hi everyone,
I’ve joined this site today as my boyfriend of 5 years was diagnosed just over a year ago. He copes okay, over Christmas lost control of his bloods and didn’t seem to care and with the new year is doing much better with routine.
I’ve joined as I feel like I struggle to cope with what he’s going through and need advice. I suffer with anxiety and although I do not believe this is a contributing factor to how I feel others may see it might.
We have been together 5 years and I feel so worried about our future. I’ve learned so much from this site but I just cannot find any information on my concerns. I’m so scared one day he won’t be here or something awful will happen to him as a result of low blood sugar, I’m scared he’ll go blind or lose sensation in his fingers and toes or that something worse will happen. Recently I feel like I’m living counting down the days untill something horrible happens and I can’t be like this anymore. I really feel like I need to hear from other people who have this condition to shed light on my worries.. what about children? We want to travel etc and he says often this will not hold him back and I’m so proud of him but he doesn’t care to join websites like this and when I express my worries he shuts me down and doesn’t want to discus it. I assume because he’s worried too..
sorry for the long post, any advice is much welcomed

 

[Jaylee]

Hi @Ellz_10 ,

Welcome to the forum...

Oddly, I had this conversation with my wife? We've been together for over 20 years of which married for 7?
But it was my wife broaching the "if I go first I'm worried how you'll cope."
I "reassured" her I had a "plan B" lined up, should this scenario arise?

Being serious. I feel you should address your anxieties with proffessional counselling help..
When your boyfriend is ready to join us on here, I'm sure he'll make the right decision.

Kind regards,

J>

 

[lindijanice]

Hey Eliz_10, welcome to the Forum....you have come to good place to find out more about how people with T1 learn to live their lives to the max.....you are carrying a heavy burden on your shoulders that I wonder if it really should be so....First off, accept the fact that your partner needs to take full responsibility for his condition and you are there in a supportive role. Don't try to mother him or "oversee" his diabetes....Perhaps he shuts you down because he needs to focus on today...what his bg levels are, how much insulin to take, etc. or maybe he thinks you are getting yourself worked up over something that you don't and can't have control over....

I am not in the least trying to minimize your anxiety over his condition, but I am concerned that you are lost in the forest of "What Ifs" and it can wreak havoc on you and everyone around you.....and you know what? many of those "what ifs" are never going to happen and you have spent an enormous amount of time worrying over them to no avail. Please, take a big breath, take a few steps back and learn from those who have lived with T1 for decades and are traveling, mountain climbing, having a great life, yes, with T1. They accept it, meet any challenges head on at the time they occur, and then carry on....just as your partner will, hopefully, with you happily at his side.

If you find it difficult to curb the anxiety, it will inevitably affect your partner, his treatment of his diabetes, his attitude towards it and you....so for the sake of both your sanity and relationship, enjoy today, be grateful you have him in your life and "que sera, sera" - what will be, will be.....together you can face it successfully and adapt as required! Blessings/L

I would encourage you to try and find someone professionally that can help you talk this issue through so that you can be the best you can be for yourself and your partner.....or maybe start to journal and write things out so you "get it out of your system" and leave it there.....and continue posting here on the Forum as there are many here who will be supportive!!

 

[Scott-C]

It can be a difficult judgment call, @Ellz_10

Many T1s can be very private about their condition. It's understandable as it is true that non-T1s really do not understand it.

Sometimes, in a strange way, well meaning concerns from loved ones can actually add to the pressure. I'm lucky enough to have never "burned out" in the sense of not bothering about levels - my one and only bout with DKA at diagnosis was enough of an incentive to never go there again - but there's certainly been times when I've been narked by T1 just not playing by the usual rules, despite my best efforts. When that has happened, I've not discussed it with close ones because I know all I'm going to get is, "have you tried this, have you tried that?" Of course I f****ing have!

Complications which you mention such as going blind etc are a part of T1. I've found being aware of them hugely motivational for putting effort into maintaining good control.

But it is important to keep them in perspective. If your man is running around in the 20s for weeks on end, then, sure, that hugely increases the risks: it's up to him to address whether he is prepared to put his big boy pants on and accept that he has personal responsibility for dealing with a self-treated condition, not you, not his doctors.

If, though, he is broadly in control most of the time, the occasional flyer out of range isn't a big deal.

Provided he is going to his 6 month or yearly reviews at hospital and getting his eyes scanned yearly, that'll pick up on any early eye problems, and there are some very sophisticated treatments to nip early eye problems in the bud.

There was a recent thread, can't find it now, where a poster linked to some recent studies which showed that with modern methods, eye complications had reduced substantially in recent decades. Can't remember the numbers, but we're talking tiny numbers here. But that's all dependent on us looking after ourselves.

So, sure, complications need to be thought about but they are in no way inevitable, provided we pay attention to levels, and don't get too het up or dispirited by the occasional flyer.

See if you can find out what his hba1c level is. It's a measure of his average bg level over the last 2 to 3 months - some glucose gets "stuck" to red blood cells - hba1c measures that - the more glucose, the higher the hba1c.

I've posted a chart below which shows the sort of range to aim at. It doesn't take that much work to get into the green range and still have a decent life, including, as is the case with me at the moment, going for a nice two course Sunday lunch curry at Khushis and then to the pub for a couple of beers.

If he's not been on a DAFNE course, or a local variant, those can be very useful for changing a few bad habits and general motivation.

Best of luck!

 

[Grant_Vicat]

Hi everyone,
I’ve joined this site today as my boyfriend of 5 years was diagnosed just over a year ago. He copes okay, over Christmas lost control of his bloods and didn’t seem to care and with the new year is doing much better with routine.
I’ve joined as I feel like I struggle to cope with what he’s going through and need advice. I suffer with anxiety and although I do not believe this is a contributing factor to how I feel others may see it might.
We have been together 5 years and I feel so worried about our future. I’ve learned so much from this site but I just cannot find any information on my concerns. I’m so scared one day he won’t be here or something awful will happen to him as a result of low blood sugar, I’m scared he’ll go blind or lose sensation in his fingers and toes or that something worse will happen. Recently I feel like I’m living counting down the days untill something horrible happens and I can’t be like this anymore. I really feel like I need to hear from other people who have this condition to shed light on my worries.. what about children? We want to travel etc and he says often this will not hold him back and I’m so proud of him but he doesn’t care to join websites like this and when I express my worries he shuts me down and doesn’t want to discus it. I assume because he’s worried too..
sorry for the long post, any advice is much welcomed

Hi @Eliz_10 I was Type 1 from 11 months old until 4 days before my 55th birthday in 2013. Since 13th June 1980 I have had the same partner, whom I married in 1982. I am going to leave you a few anecdotes from the book in the picture:

To the memory of Banting & Best and Professor Macleod, who gave all diabetics a chance to live. To Sir Roy Calne, Kathleen Thornton and all the nurses, doctors, anaesthetists and surgeons who have made my life possible. To all friends and work colleagues who have coped with my unpredictable behaviour. To my family who have supported me in this possibility, especially my wife Helen, who has kept a disciplinary eye on my aberrations over the last thirty-five years.

Helen only fussed if I was clearly low sugared and failing to deal with it. She would also worry if there was evidence that I had failed to take one of many medications.

On August Bank Holiday 1966 I was playing Badminton with Johanna in our back garden (of a house we moved into in May 1962) and suddenly felt very ill. Johanna took me inside where I promptly wrecked my mother's sewing box, a large black and sky blue leather clad cube. My mother attempted to cheer me up by taking me along the road to the grocery shop and allowing me to choose whatever I fancied from the freezer. I chose a frozen chicken leg. That is the last thing I remember for at least five days. I took up silent residence in The Children’s Ward, Southlands Hospital and various attempts were made to find a suitable Insulin dose. On the fifth day they had still made no headway and informed my parents that they were going to try a lumbar puncture. Perhaps it would be advisable for them to retreat into the Hospital grounds? Shortly afterwards, as my mother used to recall, a welcome scream resounded from the building. “That must be Grant.”
The point about this is that glucometers did not exist then and treatment was VERY primitive. Nowadays a diabetic can keep an eye on their sugar levels and act accordingly. Insulins are far more sophisticated now and there is a huge range of treatment. It is also quite likely that your boyfriend still wants it all to be very much in the background, especially as he got it after a significant time of normal living.
In the 54 years I had Type 1, I had 7 loads of laser treatment for retinopathy, BUT the last was in 1983 and I can still see without glasses - I only need them for reading (and typing!) I also showed signs of kidney problems in 1973, but they lasted right up till I had a kidney/pancreas transplant in 2013.
1979 At a party in Haringey, hosted by one of Helen’s predecessors: The hostess, called Julie, left for work at Harrods, with Yours Truly unconscious on a sofa. She telephoned at 12.45. “You still there?” After my baffled response, I put the phone down and tried to think about my state of affairs. I had a raging headache, my vision kept disappearing, and worryingly, I was experiencing a total memory loss. I started to pace around the stark room like a leopard in its too confined quarters. What the hell is wrong? This is not a hangover. I need to talk to someone. My father. What’s his name? Where does he work? (He retired in 1985 and I still remember his number – 01 405 9222 ext 6036) Brain’s battery was completely uncharged then. As I sped around the room in increasing panic, I chanced upon a directory. With my focus looming in and out, I flipped through the pages in the vain hope I might recognise anything. Something suggested the word “assurance” and I had enough cognitive function to write it down. Minutes later I was through to some saint (female) at the switchboard. Why she didn’t think “We’ve got a right one here” I’ll never understand. She deserves recognition.

“Er, er, Oh God, what’s his name?”
“Don’t worry love, which department is he in?”
“Er, ....... Oh blimey I can’t think.”
At this point she began reading down the list until she said:
“Job Evaluation?”
“That’s it!”
I’m a great believer in fate. Normally one of three lovely secretaries would have answered the phone, but for some reason my father himself answered. I must have been able to tell him my whereabouts, because I remember him giving me some chocolate in the flat. The rest is blank until 6.30 the following morning. I had been put in Johanna’s bedroom (I think she was away at college in Oxford at the time) and my father put his head round the door to check progress. He found me with the top of my head on the floor, followed by most of my torso. He managed to get me back on the bed and then tried to give me warm sweet tea. I hit him. Apparently it took both my parents to hold me against the wall and get some in.
The point about this is that I slept right through a hypo which must have been somewhere near 1.0. This is not something I would advise, but is proof that many of the stories you read in the press can be hyped up to sell papers. Looked at in the cold light of day, most things you read about diabetes are frightening to say the least, but one of the reasons I wrote the book was to help the likes of you and your boyfriend. I agree with so many comments so far mentioned on this thread. Ultimately, your boyfriend holds the key to his future, a future that is far more optimistic than in 1959! The best of luck.

 

[Antje77]

I’m living counting down the days untill something horrible happens and I can’t be like this anymore. I really feel like I need to hear from other people who have this condition

Diabetes is a pain in certain body-parts (especially the fingertips), but this sounds like the condition you need to worry about first is your anxiety. Of course I don't know how badly managed your friends' diabetes is, but 'something horrible' usually doesn't happen overnight, especially not when they have not happened in the last year. Of course it's still possible, just like it's possible you get run over by a truck when crossing the street. Could you look into some counselling? Both for your own anxiety and maybe to get help in how to express your concerns to your friend?
All the best to the both of you!

 

[Ellz_10]

It can be a difficult judgment call, @Ellz_10

Many T1s can be very private about their condition. It's understandable as it is true that non-T1s really do not understand it.

Sometimes, in a strange way, well meaning concerns from loved ones can actually add to the pressure. I'm lucky enough to have never "burned out" in the sense of not bothering about levels - my one and only bout with DKA at diagnosis was enough of an incentive to never go there again - but there's certainly been times when I've been narked by T1 just not playing by the usual rules, despite my best efforts. When that has happened, I've not discussed it with close ones because I know all I'm going to get is, "have you tried this, have you tried that?" Of course I f****ing have!

Complications which you mention such as going blind etc are a part of T1. I've found being aware of them hugely motivational for putting effort into maintaining good control.

But it is important to keep them in perspective. If your man is running around in the 20s for weeks on end, then, sure, that hugely increases the risks: it's up to him to address whether he is prepared to put his big boy pants on and accept that he has personal responsibility for dealing with a self-treated condition, not you, not his doctors.

If, though, he is broadly in control most of the time, the occasional flyer out of range isn't a big deal.

Provided he is going to his 6 month or yearly reviews at hospital and getting his eyes scanned yearly, that'll pick up on any early eye problems, and there are some very sophisticated treatments to nip early eye problems in the bud.

There was a recent thread, can't find it now, where a poster linked to some recent studies which showed that with modern methods, eye complications had reduced substantially in recent decades. Can't remember the numbers, but we're talking tiny numbers here. But that's all dependent on us looking after ourselves.

So, sure, complications need to be thought about but they are in no way inevitable, provided we pay attention to levels, and don't get too het up or dispirited by the occasional flyer.

See if you can find out what his hba1c level is. It's a measure of his average bg level over the last 2 to 3 months - some glucose gets "stuck" to red blood cells - hba1c measures that - the more glucose, the higher the hba1c.

I've posted a chart below which shows the sort of range to aim at. It doesn't take that much work to get into the green range and still have a decent life, including, as is the case with me at the moment, going for a nice two course Sunday lunch curry at Khushis and then to the pub for a couple of beers.

If he's not been on a DAFNE course, or a local variant, those can be very useful for changing a few bad habits and general motivation.

Best of luck!

View attachment 25114

Thank you for this,
I think I need to accept this isn’t my condition and it’s not under my control ..
I asked what his previous hbac1 level was and he said he couldn’t remember the number but it was high and into the red/Amber area shown on the graph you posted. He’s adamant he’s doing much better now with controlling it and says he’s trying to keep his bloods below 10 every day, is this a good start?

 

[Scott-C]

and says he’s trying to keep his bloods below 10 every day, is this a good start?

It's certainly heading in the right direction. Ideally, bg should be around 4.5 to 7 most of the time, with short rises after meals to around the 8 to 10 mark before coming back down again.

None of us get it right all the time, though - there are too many complex bodily processes going on to nail it 100% day in day out, so the odd messy day just has to be accepted as part of the game and won't do any real harm in the wider picture.

He's only a year in, so he'll pick up little tricks as time goes by. One common one is to inject a while before the meal to give the insulin time to get to work, so that it'll deal with the incoming glucose from the meal much better so there's less of a spike. Timing depends on the person - 20 mins workd well for me but it takes experimentation. It makes a huge difference when I get it right - sometimes I can make my blood sugar go down, not up, after a meal!

Don't know what his finances are like, but if he could stretch to £100 per month, there's a continuous glucose sensor called Freestyle Libre which shows a continuous graph of where bg has been and where it might be going. Makes it much much easier to see how bg is affected by insulin amounts and food. It can be turned into proper cgm with hypo alerts by putting a small transmitter called blucon on top of it to send results every 5 mins to a phone. Most people who use it find it makes the job much easier just through being able to see bg levels moving, makes it easier to respond. Some hospitals give free trials. There's moves going on to get it on prescription, but for now we need to pay. Some parts of the country are prescribing it. It's great for motivation simply because it levels the playing field and takes some of the uncertainty out of it.